Below is an excerpt from Michelle's blog, ihavebuttwhat. No matter what doctors tell you, and how many times they 'dismiss' your concerns when it comes to your health, you have to be your own advocate. You know your body better than any doctor. If you are dismissed, still feeling sick, find another doctor who will listen to you. Michelle's tumor was found by an older doctor, not her young arrogant doctor.
~~~~~~~~
Michelle:
"In October of 2008, I started having fatigue symptoms and my legs were aching all the time, just to the outside of my shins. I felt full and had a lot of flatulence. My GP did blood tests and discovered I was very low in the B6 vitamin. When questioned, he said that it was not a symptom (to his knowledge) of anything, although I did read it could have relevancy to cancer diagnosis later. I told him after taking supplements, that I still was not well and asked for a colonoscopy because I had had previous ones and they had removed polyps and told me I should have them once every 3 years, but then when I saw another doctor, she told me not to come back for 5 years, which would have been in 2009. He refused to let me have one.
In March, I saw the doctor again about irritation in my anal area and he said it was hemorroids.
In April 2009, I did my own DRE and felt the lump was quite a bit bigger, then remembered what had happened the previous July. I went to the doctor, my own GP wasn't there, but I saw his colleague who told me it was most likely hemorroids and I insisted he set me up for a colonoscopy. When I called back a week later, they said they had not heard back from the specialist. I called the specialist's office who told me that they had not received the request.
Fearful of the competency of my GP's office, I went to a Walk In Clinic in a nearby town. The doctor was an older man, retired but volunteering his time at the clinic, he did a DRE, clearly told me I had a tumor and had me in to see a doctor in less than three days ... oh the difference between older humbled doctors and arrogant younger doctors who treat you like you are a hypochondriac! In the long run, I take responsibility for having not acted sooner on my own instincts, and I also feel the doctor who 'was' my GP at the time, needs to take responsibility for being so intent on keeping my records up to date and typing into the computer, that he didn't even listen to my symptoms. I recently was in the ER for another reason and overheard a patient that was registering for care say "I do not want 'Dr. so and so,' if I have to have him, I will leave and go to another hospital." Sometimes we are put in a place for a reason, if only to validate our experience with another. Oh, I had Mitomycin and 5FU - just wondering why that is not listed under Chemotherapy?"
If you are faced with an arrogant, dismissive doctor who doesn't even have the courtesy to listen to your concerns, run out of his/her office as fast as you can and find another doctor who will listen to you. Your life may depend on it.
Wednesday, October 22, 2014
Stage IV Colon Cancer
After my PT appointment, I went and got my haircut by my niece, Elaina. It was great seeing Elaina. She told me some sad news.
Chris Gannon, who is married to Toula Karamanides, Cleo's youngest sister, was diagnosed with Stage 4 colon cancer. I think Chris is 43 or 44 years old.
They call colon cancer the 'silent cancer' because by the time you're diagnosed it's too late. Chris wasn't feeling well the past couple of weeks - abdominal pain. He had no other symptoms. After he was examined at the ER at Bryn Mawr, he was told he has colon cancer. Dr. Gupta, an oncologist who also took care of Cleo, told Chris his cancer has spread to other parts of his body. Dr. Gupta was honest - best case scenario - he may live 6 to 7 years.
Next Thursday Chris will go to the University of Pennsylvania and try to get into a clinical trial. His wife, Toula, has barely eaten anything in a week. From the shock of his diagnosis, Chris is in denial. I can totally relate. The shock when you are first told, 'you have cancer' is too much to process. And when you are told it's bad, Stage 4, with a 6 to 7 year survival rate, it's too much to handle.
I feel so sorry for Chris, Toula, their two sons, Toula's sisters (Anna and Dina) and Toula's parents. They lost their oldest daughter, Cleo, to Stage 4 breast cancer. How much more heartache can they possibly be expected to endure?
I hope Chris can get into a clinical trial, and I hope that once he accepts his disease he will fight hard. That's all he can do. Let's hope for the best.
Below is info I obtained from the American Cancer Society:
The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. Of course, many people live much longer than 5 years (and many are cured).
The numbers below come from the 7th edition of the AJCC staging manual published in 2010. They are based on a study of the National Cancer Institute's SEER database, looking at more than 28,000 people diagnosed with colon cancer between 1998 and 2000.
These are observed survival rates. They include people diagnosed with colon cancer who may have later died from other causes, such as heart disease. People with colon cancer tend to be older and may have other serious health conditions. Therefore, the percentage of people surviving the colon cancer itself is likely to be higher.
Stage ~ 5-year Observed Survival Rate
I ~ 74%
IIA ~ 67%
IIB ~ 59%
IIC ~ 37%
IIIA ~ 73%*
IIIB ~ 46%*
IIIC ~ 28%
IV ~ 6%
*In this study, survival was better for some stage III cancers than for some stage II cancers. The reasons for this are not clear.
Tuesday, October 21, 2014
Physical Therapy
I met my physical therapist, Julie, today at 1:00 pm. She strictly deals with breast cancer patients. After the intro and a series of questions, I took off my shirt and laid down. She checked my range of motion (ROM). The area around my shoulder, my pectoral and deltoid muscles in particular, are stiff. She then explained our plan of action. I see her again this Thursday at 2:00.
Starting next Monday, which will be my first day back at work after missing this week to fluid buildup, I will be seeing Julie every Monday from 6:30 am to 7:30 am which works out good because then I can drive straight to work. I have to see her 2 x a week. It will also most likely be Wednesdays from 7:30 am to 8:30 am. She will start off by massaging the fluid away from the area under my arm. She will also massage certain areas of my scar to break down my scar tissue. There is a section in the center and a small section under my arm that has not completely healed. We will avoid those two areas initially.
Once we deal with the seroma then we will move on to stretching and strengthening exercises.
I'm actually looking forward to my physical therapy. Can't wait until Thursday!
Starting next Monday, which will be my first day back at work after missing this week to fluid buildup, I will be seeing Julie every Monday from 6:30 am to 7:30 am which works out good because then I can drive straight to work. I have to see her 2 x a week. It will also most likely be Wednesdays from 7:30 am to 8:30 am. She will start off by massaging the fluid away from the area under my arm. She will also massage certain areas of my scar to break down my scar tissue. There is a section in the center and a small section under my arm that has not completely healed. We will avoid those two areas initially.
Once we deal with the seroma then we will move on to stretching and strengthening exercises.
I'm actually looking forward to my physical therapy. Can't wait until Thursday!
Cured?!
I'm a member of the Cancer Survivors Network (and Breastcancer.org), and I am having a hard time with the actual title.
Every time I hear someone use the term 'cancer free' it makes me shutter because once you are diagnosed with breast cancer you never know when or if it will return. NED (no evidence of disease) is the terminology oncologists use when it comes to breast cancer. Some of the members in the discussion boards use the term 'cancer free' and either their doctors haven't taken the time to explain 'cancer' to them or they are suffering from self-induced denial. Who am I to judge them? Nothing in life is 'free' ...
If my tone is a bit sarcastic, forgive me. It's been a long day and I can't sleep. Insomnia is very common - so I've been told.
NED - another term to add to my cancer glossary.
Most cancer survivors aren't considered 'cured' until they reach the 5 yr mark but even then there are incidences of cancer returning after those 5 years.
When Dr. Frazier drew a picture of a breast and the location of my tumor on a yellow piece of paper, he mentioned the '5-year' recurrence rate of cancer. I asked what the 10 and 20 year rates were.
Some cancers use a 5-yr benchmark - if you make it past 5 years you're cured. Breast cancer does not have that assurance. You can have a recurrence after 6 years, 10, 15, etc.
My name is Irene Atsatos and I am 27 days old. My life after my mastectomy ...
As I mentioned in prior posts, this second lease on life has made me appreciate every waking hour more. I take nothing for granted. Nothing.
Everybody is walking under the shadow of death, people who have never had to battle cancer just aren't aware of the shadow. There isn't anything I or other breast cancer survivors can do about it, there is no guarantee that it won't return. Doesn't matter if your stage 1 or stage 3. 30% of women and men (yes - men get breast cancer) will have their cancer return. There is no cure for stage 4. We must take solace in knowing that 70% never have a recurrence. All we can do is hope for the best. (Source: American Cancer Society and Metavivor.org - a site for patients diagnosed with stage IV breast cancer).
If your tumor is ER+, PR+, or HER-2+, you are prescribed hormone blockers or Herceptin to 'lower' the risk of cancer coming back.
When I start taking Arimidex my risk of a recurrence will be 4 percent.
When Janice is finished with her chemo treatments, she will also take Arimidex. Her risk of a recurrence will be 12 percent. She had a malignant tumor removed from her right breast 10 years ago. She chose a lumpectomy, radiation and Tamoxefin. She had 'no evidence of disease' until a couple of months after reaching the 10 year mark.
There are no guarantees. All we can do is enjoy life to the fullest, pay very close attention to our bodies, and get our cancer screening tests done on a timely basis.
It's almost 4:00 am. I will try to get some sleep (key word: try).
Good night!
Monday, October 20, 2014
Bio of Dr. Frazier
I met Dr. Frazier for the first time on
September 4th. I also met Dr. Jill Lloyd on that day - a visiting doctor from the Mayo Clinic. My films (mammograms and ultrasounds) were staring at me while I waited anxiously for the doctors to come into my exam room. I had my cell phone in my hand and when they both walked in, after they shook my hand and introduced themselves, I asked, 'Dr. Frazier, would it be okay if I took pictures of my films?' He replied, 'sure Irene, and I'll go over them with you.' He didn't dismiss me. After my physical examination - both doctors located and felt my tumor - we sat in his office for well over 15 minutes. He sat next to me instead of in his chair. I liked him immediately. Nationally, the average time a patient spends with a doctor is 7 minutes. Dr. Frazier spent approximately 25 minutes with me between my actual examination and the time he took to discuss my upcoming biopsy scheduled for that Friday. He is a very personable and compassionate doctor who genuinely cares about his patients.
After my biopsy, Dr. Frazier called me on September 8th to advise my tumor was in fact malignant - Stage 1A.
The following morning, September 9th, Nikki and I sat with Dr. Frazier for approximately 15 minutes as he explained my cancer and the different options available. I'm so grateful Nikki took notes for me. I had a few questions that I had written down. He answered them - again he didn't dismiss me. He even gave me his home phone number and told me to call with any questions or concerns.
Below is a brief biography of, not only a great doctor but, a caring and attentive human being who has helped me fight my breast cancer with dignity. I can't describe in words how grateful I am to be under his care.
In a day and age where many doctors are 'in it for the money' Dr. Frazier 'is in it' because he truly cares about his patients. He also cares about patients' families and goes out of his way to reassure them that their loved ones will be okay.
~~~~~~~~
Education: University of Pennsylvania (1968)
Awards & Distinctions:
One of America's Leading Experts on:
•Breast Cancer (Breast Neoplasm)
•Living Through Cancer Foundation
•In the Looking Glass Award October 2008
•Castle Connolly America's Top Doctors® (2010 - 2014)
•Castle Connolly America's Top Doctors® for Cancer (2005 - 2007, 2009 - 2012, 2014)
•American Society of Clinical Oncology
Publications & Research:
A couple of the 31 publications Dr. Frazier has written regarding breast cancer research:
Title: Is There a Role for MRI in the Preoperative Assessment of Patients with DCIS?Date: December 2010
Journal: Annals of Surgical Oncology
Excerpt: "Breast magnetic resonance imaging (MRI) is used to identify residual and additional disease in patients with invasive carcinoma. The use of MRI in assessing extent of disease for ductal carcinoma in situ (DCIS) is less well defined. This study assessed the value of MRI in the preoperative evaluation of DCIS."
---
Title: Sentinel-lymph-node Resection Compared with Conventional Axillary-lymph-node Dissection in Clinically Node-negative Patients with Breast Cancer: Overall Survival Findings from the Nsabp B-32 Randomised Phase 3 Trial.
Date: October 2010
Journal: The Lancet Oncology
Excerpt: "Sentinel-lymph-node (SLN) surgery was designed to minimise the side-effects of lymph-node surgery but still offer outcomes equivalent to axillary-lymph-node dissection (ALND). The aims of National Surgical Adjuvant Breast and Bowel Project (NSABP) trial B-32 were to establish whether SLN resection in patients with breast cancer achieves the same survival and regional control as ALND, but with fewer side-effects."
Thank you doc!
Dr. Frazier tests MarginProbe
In this Sunday's Philadelphia Inquirer there was an article about a new diagnostic tool called a MarginProbe.
Considering approximately 25% of women have to undergo a second surgery after a lumpectomy because traces of cancer were not removed during the initial surgery, this new tool sounds promising. The margins around a tumor can differ from tumor to tumor and if the surgeon doesn't remove all of the malignant tissue, the tumor will grow back.
I am a member of Breastcancer.org and visit the site daily, and the number of women who have had to have follow-up surgery is staggering.
~~~~~~~~
Philadelphia Inquirer, Sunday, October 19, 2014, Health Section
Next month, Thomas G. Frazier will sit down with colleagues at Bryn Mawr Hospital's Comprehensive Breast Center and unseal the results of a blind study for Dune Medical's MarginProbe.
The four-month, 30-patient study is the second conducted at Bryn Mawr on the new diagnostic tool designed to help breast cancer surgeons determine - within minutes - whether they have removed all the malignant tissue during a lumpectomy and reduced the need for later surgery.
If the second study is positive, the device could become a key tool for breast cancer surgeons at Bryn Mawr and elsewhere.
Frazier wants to know whether the MarginProbe reduces the number of second surgeries enough - either alone or with other technologies - to warrant buying it.
"Any time you can do one surgical procedure instead of two, it's a good thing to investigate," said Frazier, the center's medical director.
"Nothing is 100 percent, so this isn't 100 percent, but it is a better option than what is available," said Diane Robertson, director of the health technology assessment service for the ECRI Institute in Plymouth Meeting.
During a lumpectomy, the surgeon removes the tumor and surrounding tissue. The specimen's margins are marked with a special ink and sent to pathology for examination. Margins are the distance between the tumor and the edge of the surrounding normal tissue.
The results can take several days, during which patients are sent home to heal. A positive report means cancer was found in "the ink," or margins, requiring a second surgery.
For years, the second surgery rate on lumpectomies has been "a dirty little secret that surgeons have kept hidden in the closet," says Bill Gearhart, vice president of marketing and sales for the Israeli company that makes the device. "The typical number is 25 percent."
The MarginProbe received FDA approval in December 2012. The current model looks like a vintage Macintosh computer mounted on top of a standalone ATM pedestal. The probe - think electric toothbrush on steroids - is connected to the console by a cable. Gearhart expects FDA approval for a lighter, more portable unit in January.
Cancer cells and normal cells emit different electrical signals. The device uses an algorithm calibrated for breast tumors and radio-frequency spectroscopy to detect differences.
After removing the tumor, the surgeon moves the probe over the surface of the specimen. Sensors take radio-frequency measurements. The device never touches the patient, who remains sedated.
In three to five minutes, the surgeon can find any remaining cancer, Gearhart says. If any is detected, the device beeps and a red bar appears on the screen. If the tissue is cancer-free, the bar is blue.
When cancer cells are detected, the surgeon can immediately remove more tissue and redo the test, possibly saving the patient from a future surgery.
One study found the device prevented 60 percent of second surgeries. Another trial, in February in Germany, included 42 patients and found a 56 percent reduction.
Gearhart said false positives ranged between 13 percent and 30 percent, depending on the density of the breast tissue. The machine costs $40,000. The probes are about $1,000 to $1,200 apiece and can be used only once.
In 2011, Bryn Mawr took part in the first, 500-patient study, which helped Dune win FDA approval. The hospital used the probe on 13 patients and reported a 23 percent decrease in repeat surgeries.
This time, the hospital more than doubled its sample size. And Bryn Mawr has added new technology. One is called radioactive seed tumor localization.
When a breast-tumor biopsy is done, a titanium clip is placed where the tumor is suspected. If the biopsy is negative, the clip isn't removed. If the biopsy is positive, the patient has a radioactive seed implanted so the surgeon can find it. The seed can be placed up to five days before surgery.
The seed and clip are removed with the tumor.
When the specimen is removed, the surgeon can X-ray it in the OR and within a minute see whether there is a satisfactory margin around the tumor. The surgeon also feels around the margin and in the cavity for any tumor.
Whether Bryn Mawr buys the MarginProbe will probably come down to numbers - both second surgeries saved and cost.
Read more at http://www.philly.com/philly/health/breastcancer/20141019_A_test_for_breast_cancer_tool__Is_it_worth_it_.html#lKqQCvm3OEcuRxMg.99
Can't return to work
On what I thought would have been my first day of work turned into a downer.
I had to have more fluid drained from under my arm at 9:00 this morning.
The area below my scar was fine.
Tomorrow I have to go to MLH in Newtown Square at 1:00 pm for physical therapy. I also have an appointment at 2:00 pm on Thursday with the same therapist. Dr. Frazier told me the physical therapist will massage the fluid away from the area under my arm where the fluid can be absorbed into my body. Range of motion exercises will also help my shoulder.
It's really important to get as much of the fluid away from the area under my arm so that the swelling doesn't become chronic. That could lead to lymphedema which is permanent. Lymphedema is a swelling of the entire arm. My maternal grandmother had lymphedema and I remember her discomfort.
I will return to work next Monday.
Two steps forward, one step back. In time, my steps will all be forward. Can't wait!
I had to have more fluid drained from under my arm at 9:00 this morning.
The area below my scar was fine.
Tomorrow I have to go to MLH in Newtown Square at 1:00 pm for physical therapy. I also have an appointment at 2:00 pm on Thursday with the same therapist. Dr. Frazier told me the physical therapist will massage the fluid away from the area under my arm where the fluid can be absorbed into my body. Range of motion exercises will also help my shoulder.
It's really important to get as much of the fluid away from the area under my arm so that the swelling doesn't become chronic. That could lead to lymphedema which is permanent. Lymphedema is a swelling of the entire arm. My maternal grandmother had lymphedema and I remember her discomfort.
I will return to work next Monday.
Two steps forward, one step back. In time, my steps will all be forward. Can't wait!
Sunday, October 19, 2014
Deodorants
We use it everyday, we don’t even think about it, but WTF is really in our deodorant?
The ingredient labels for personal care products can be overwhelmingly long and confusing, but here are five toxic red flags:
Aluminum
Aluminum compounds work to block the pores that release sweat. Found in antiperspirants, it can interfere with the ability of estrogen receptors to adequately process the hormone. It has been linked to Alzheimer’s and breast cancer.
Parabens
Parabens are a synthetic chemical preservative that allow skin care, and beauty products to have a long shelf life. Parabens can act as estrogen, which can throw off your bodyʼs hormone balance and stimulate the growth of estrogen-sensitive breast cancer cells. In one study, 20 breast cancer tumors were examined and 19 of them contained parabens.
Triclosan
Triclosan is added to prevent or lessen the chance of bacterial infection or contamination. The FDA is continuously conducting studies to discover long term effects on humans, but triclosan does alter hormone regulation in animals.
Propylene Glycol
A petroleum based ingredient that is used to soften cosmetic products for easier application. It is said to not be harmful in small doses, but in large doses has been known to be harmful to the liver, heart and central nervous system.
Phthalates
Another chemical that is added to help consistency of personal care products. Phthalates have been linked to several health issues, specifically a higher risk of birth defect.
Once you’ve looked for these harmful chemicals on your deodorant’s ingredient label, head on over to the Environmental Working Group’s Skin Deep database and put your deodorant to the test. EWG also provides a list of the most non-toxic deodorant brands and where to find them.
www.ewg.org
My New Normal
I am uncomfortable but less so than the past two weeks. Once again I am dealing with seroma build up under my arm.
I am worn down by everything I have been through and barely feel like I am among the living. Spending 4 weeks at home will do that to anyone.
"Come back in one month Irene" my doctor told me. "We will start you on Arimidex at that time."
I don't feel like my old self, physically and mentally. I am still feeling disoriented (brain fog) and uncertain about the future.
Tomorrow morning I will see my doctor to have more fluid drained before I go to work. Fluid collection after breast cancer surgery and the removal of sentinel nodes is part of the healing process.
My doctor released me to return to work tomorrow - I begged him to allow me to drive and to let me get back to work when I saw him this past Monday. After a mastectomy and sentinel lymph node removal the normal time out is 6 weeks. I will be going back to work after 4 weeks.
My surgery is over but no matter how much time has passed, the breast cancer experience is never completely over.
Getting back to normal ...
My 'new normal' is what I have to get adjusted to. My life has changed. Normal will never look and feel exactly the same. The only thing I can do is go forward with the rest of my life, one day at a time. I have to adapt to my new normal.
I know I will face challenges ahead but I will cope with them. So many women have done it and are doing it. I draw strength from these other survivors and from my maternal grandmother who had a double radical mastectomy.
I carry my cancer worry with me, silently, and I hope over time the burden lessens. The uncertainty of the present and future is exhausting.
What I must remember is to save my energy for the things that matter to me most and not sweat the small stuff.
What has helped me the most: Janice
Our shared experiences after our surgeries have been the foundation of a beautiful friendship.
I am worn down by everything I have been through and barely feel like I am among the living. Spending 4 weeks at home will do that to anyone.
"Come back in one month Irene" my doctor told me. "We will start you on Arimidex at that time."
I don't feel like my old self, physically and mentally. I am still feeling disoriented (brain fog) and uncertain about the future.
Tomorrow morning I will see my doctor to have more fluid drained before I go to work. Fluid collection after breast cancer surgery and the removal of sentinel nodes is part of the healing process.
My doctor released me to return to work tomorrow - I begged him to allow me to drive and to let me get back to work when I saw him this past Monday. After a mastectomy and sentinel lymph node removal the normal time out is 6 weeks. I will be going back to work after 4 weeks.
My surgery is over but no matter how much time has passed, the breast cancer experience is never completely over.
Getting back to normal ...
My 'new normal' is what I have to get adjusted to. My life has changed. Normal will never look and feel exactly the same. The only thing I can do is go forward with the rest of my life, one day at a time. I have to adapt to my new normal.
I know I will face challenges ahead but I will cope with them. So many women have done it and are doing it. I draw strength from these other survivors and from my maternal grandmother who had a double radical mastectomy.
I carry my cancer worry with me, silently, and I hope over time the burden lessens. The uncertainty of the present and future is exhausting.
What I must remember is to save my energy for the things that matter to me most and not sweat the small stuff.
What has helped me the most: Janice
Our shared experiences after our surgeries have been the foundation of a beautiful friendship.
Tuesday, October 14, 2014
Thank you Dr. Marisa Weiss!
Thank you Dr. Weiss for creating the non-profit Breastcancer.org of which I am a member. The site's research articles and the 'Ask-the-Expert' conferences are valuable web-based resources.
I have met breast cancer patients and survivors from all over the world. It is a wonderful forum to share my hopes and fears with fellow breast cancer warriors. The chat rooms and discussion boards are helpful for members to offer each other help and support.
Your video Doctor Doctor, Lend Me Your Ear: An Up-Close Look at the Patient-Doctor Relationship is funny and full of a wealth of information with regard to the relationship we, as patients, should have with our doctors.
Thank you for your book, Living Beyond Breast Cancer. Sarah recommended that I read your book because you are also a breast cancer survivor!
And lastly, thank you for speaking to the Philoptochos Chapter at Saint Lukes Greek Orthodox Church for Breast Cancer Awareness Month last October. I met a woman in one of the chat rooms from New Jersey who drove to Broomall last October to listen to you speak. She has been a member of Breastcancer.org since 2011 and is taking Tamoxifen. Every day she lives with the fear of a recurrence.
~~~~~~~~
"Dr. Marisa Weiss, nationally renowned breast radiation oncologist at Lankenau Hospital in Pennyslvania and founder of web-based nonprofit, Breastcancer.org, was honored with the cover story in Philadelphia Magazine's "Top Doc" for her pioneering efforts to improve patients' access to reliable medical information and facilitate stronger doctor-patient relationships. Through her award-winning nonprofit, Breastcancer.org, and in her educational video "Doctor Doctor, Lend Me Your Ear: An Up-Close Look at the Patient-Doctor Relationship" Weiss uses medical expertise, humor, and sensitivity to reach thousands of patients and physicians.
Dr. Weiss was selected for the cover from 364 physicians named as Top Docs in an eight-county area. According to Philadelphia Magazine, the "Top Doc" award is given to those doctors that "other doctors say they'd turn to if a member of their own families were ill. In an era when all we seem to hear from the medical profession is grumblings about malpractice costs and too many patients, these men and women are so juiced by what they do."
Dr. Weiss' passion for her work is reflected on her non-profit website, breastcancer.org, where women can access timely and accurate medical information about breast cancer twenty-four hours a day and in her video "Doctor, Doctor, Lend Me Your Ear: An Up-Close Look at the Patient-Doctor Relationship" which helps patients and doctors strengthen this sacred and often lopsided relationship.
"The idea is for women and doctors to understand why the relationship is so important, complicated, and intimidating and what they can do within the context of that relationship to get and deliver the best care possible," said Weiss. In the video, Weiss teaches patients to communicate effectively with their doctors in order to get the best possible care, and helps doctors address their patient's needs. Described as "a more maternal Ellen DeGeneres," Dr. Weiss delivers a sensitive and humorous take on her own experience as a patient while wearing a patient robe and socks.
"Dr. Weiss' frank and open dialogue in the video conveys her sincere devotion to her patients and to all women facing breast cancer," said Albert S. DeNittis, M.D., campus chief of radiation oncology at Lankenau Hospital, "She is a patient's advocate. Their interests come first."
Dr. Weiss is a noted leader in bringing the latest treatment options to her patients. She was the first radiation oncologist in the Philadelphia region to treat early stage breast cancer patients with partial breast radiation therapy, which reduces the patient's time for radiation therapy from six weeks to one week. The new technique will soon be launched as a national clinical trial to study its effectiveness compared to the current standard of care involving radiation therapy of the whole breast after lumpectomy.
"I wanted women from around the world to be able to benefit from the best medical treatment options available and have a safe place to go 24-hours a day, seven days a week to access timely, relevant and understandable medical information," said Weiss, "We've noticed that the busiest time on Breastcancer.org is after usual business hours, when most healthcare professionals are inaccessible."
Breastcancer.org offers over 2000 pages of original, peer-reviewed medical content and illustrations on every aspect of breast cancer, including symptoms, diagnosis, and treatments. The web site also provides research news and "Ask-the-Expert" conferences plus a vibrant worldwide "cyber community" featuring 24-hour chat rooms and discussion boards, where women give each other information, hope and support.
Dr. Weiss is the author of the acclaimed book Living Beyond Breast Cancer, founder of a national non-profit organization by the same name, a frequent lecturer, repeat guest of the Today Show Breast Cancer Series, and a WebMD breast cancer professor. Dr. Weiss is the recipient of awards from the American Cancer Society, Coping Magazine, and the Susan G. Komen Foundation. She is an active member of the National Cancer Institute Director's Consumer Liaison Group. Dr. Weiss joined the Lankenau Hospital Medical staff in 2002.
Breastcancer.org's mission is to help women and their loved ones make sense of the complex medical and personal information about breast cancer so they can make the best decisions for their lives. The web site offers reliable, complete, and up-to-date medical information as well as a vibrant online community that includes discussion boards, chat rooms, and monthly online conferences with leading breast cancer experts. For additional information, please visit www.breastcancer.org"
EWG's 'Dirty Dozen' and 'Skin Deep' free apps
Environmental Working Group has created two apps that every person interested in limiting their exposure to cancer-causing chemicals should download on their phone for easy access. The apps are free.
1. Dirty Dozen (EWG Shopper's Guide to Pesticides in Produce)
This app lists the 12 'dirty dozen' (produce with very high levels of pesticides).
It also lists the 'clean 15' (produce with low levels of pesticides).
When I go shopping for fruits and vegetables, if I can't afford to buy organic produce, I purchase fruits & veggies from the 'clean' list.
2. Skin Deep (EGW's Cosmetic Database)
I have been using this app for the past week. It's very easy to use. You scan the bar code of a lotion, shampoo, makeup, etc. and it will give you a rating. 0 to 2 is safe. If you scan your product and it doesn't come up, try typing the product in. (Once you scan something and it doesn't come up, EWG gets notified and they will add it to their database.)
Lastly, avoid all parabens. They are found in preservatives for food and cosmetics. Parabens have been banned in the European Union and Japan. There is a bill before congress to get parabens banned by the Food & Drug Administration, but as is the case more often than not with our do-nothing congress, it may take some time to get them banned.
How dangerous are Parabens?
I have copied & pasted the following information from the Breast Cancer Fund:
Parabens
CATEGORY: Endocrine disruptor
FOUND IN: Preservatives for food, pharmaceuticals, and cosmetics
THE GIST: Parabens are used to prevent the growth of yeasts, molds, and bacteria in cosmetics products. Parabens appear in some deodorants and antiperspirants, in addition to personal care products that contain significant amounts of water, such as shampoos, conditioners, lotions, and facial and shower cleansers and scrubs. They’re also widely used as preservatives in food and pharmaceutical products. These estrogen mimickers are found in nearly all urine samples from U.S. adults of a variety of ethnic, socioeconomic and geographic backgrounds.
State of the Evidence on Parabens
Parabens are a group of compounds widely used as antimicrobial preservatives in food, pharmaceutical and cosmetics products, including underarm deodorants. Parabens are absorbed through intact skin and from the gastrointestinal tract (Soni, 2005).
Check personal care product labels and avoid any products with parabens or any word ending in "-paraben."
Evidence in Breast Tumors
Measurable concentrations of six different parabens have been identified in biopsy samples from breast tumors (Darbre, 2004). The particular parabens were found in relative concentrations that closely parallel their use in the synthesis of cosmetic products (Rastogi, 1995). Parabens have also been found in almost all urine samples examined from a demographically diverse sample of U.S. adults through the NHANES study. Adolescents and adult females had higher levels of methylparaben and propylparaben in their urine than did males of similar ages (Calafat, 2010). Higher levels of n-propylparaben were found in the axilla quadrant of the breast (the area nearest the underarm) (Barr, 2011). This is the region in which the highest proportion of breast tumors are found, although paraben concentration in the tissue samples was not related to location of breast tumors in individual women.
Parabens are estrogen mimickers (agonists), with the potency of the response being related to the chemical structure (Darbre, 2008). Parabens can bind to the cellular estrogen receptor (Routledge, 1998). They also increase the expression of many genes that are usually regulated by the natural estrogen estradioland cause human breast tumor cells (MCF-7 cells) to grow andproliferate in vitro (Byford, 2002)
We can't avoid all cancer-causing compounds, but we can limit our exposure to them. There are many products that do not contain parabens, and to the companies who make products with consumers and their safety in mind, thank you.
1. Dirty Dozen (EWG Shopper's Guide to Pesticides in Produce)
This app lists the 12 'dirty dozen' (produce with very high levels of pesticides).
It also lists the 'clean 15' (produce with low levels of pesticides).
When I go shopping for fruits and vegetables, if I can't afford to buy organic produce, I purchase fruits & veggies from the 'clean' list.
2. Skin Deep (EGW's Cosmetic Database)
I have been using this app for the past week. It's very easy to use. You scan the bar code of a lotion, shampoo, makeup, etc. and it will give you a rating. 0 to 2 is safe. If you scan your product and it doesn't come up, try typing the product in. (Once you scan something and it doesn't come up, EWG gets notified and they will add it to their database.)
Lastly, avoid all parabens. They are found in preservatives for food and cosmetics. Parabens have been banned in the European Union and Japan. There is a bill before congress to get parabens banned by the Food & Drug Administration, but as is the case more often than not with our do-nothing congress, it may take some time to get them banned.
How dangerous are Parabens?
I have copied & pasted the following information from the Breast Cancer Fund:
Parabens
CATEGORY: Endocrine disruptor
FOUND IN: Preservatives for food, pharmaceuticals, and cosmetics
THE GIST: Parabens are used to prevent the growth of yeasts, molds, and bacteria in cosmetics products. Parabens appear in some deodorants and antiperspirants, in addition to personal care products that contain significant amounts of water, such as shampoos, conditioners, lotions, and facial and shower cleansers and scrubs. They’re also widely used as preservatives in food and pharmaceutical products. These estrogen mimickers are found in nearly all urine samples from U.S. adults of a variety of ethnic, socioeconomic and geographic backgrounds.
State of the Evidence on Parabens
Parabens are a group of compounds widely used as antimicrobial preservatives in food, pharmaceutical and cosmetics products, including underarm deodorants. Parabens are absorbed through intact skin and from the gastrointestinal tract (Soni, 2005).
Check personal care product labels and avoid any products with parabens or any word ending in "-paraben."
Evidence in Breast Tumors
Measurable concentrations of six different parabens have been identified in biopsy samples from breast tumors (Darbre, 2004). The particular parabens were found in relative concentrations that closely parallel their use in the synthesis of cosmetic products (Rastogi, 1995). Parabens have also been found in almost all urine samples examined from a demographically diverse sample of U.S. adults through the NHANES study. Adolescents and adult females had higher levels of methylparaben and propylparaben in their urine than did males of similar ages (Calafat, 2010). Higher levels of n-propylparaben were found in the axilla quadrant of the breast (the area nearest the underarm) (Barr, 2011). This is the region in which the highest proportion of breast tumors are found, although paraben concentration in the tissue samples was not related to location of breast tumors in individual women.
Parabens are estrogen mimickers (agonists), with the potency of the response being related to the chemical structure (Darbre, 2008). Parabens can bind to the cellular estrogen receptor (Routledge, 1998). They also increase the expression of many genes that are usually regulated by the natural estrogen estradioland cause human breast tumor cells (MCF-7 cells) to grow andproliferate in vitro (Byford, 2002)
We can't avoid all cancer-causing compounds, but we can limit our exposure to them. There are many products that do not contain parabens, and to the companies who make products with consumers and their safety in mind, thank you.
Janice & her upcoming chemotherapy
I met my friend Janice Sylvester at Panera's in the Lawrence Park Shopping Center. Janice also had a mastectomy on her right breast on the same day as I had mine. We have become very good friends.
I drove for the first time in 3 weeks - Dr. Frazier cleared me to drive as long as I put a pillow between my chest and the seat belt for protection. (Even as a passenger when my mom drove me to my appointments, I always used a pillow.) It was a bit unnerving but I managed to get my first 'drive' in without too much anxiety. Driving is like riding a bike - no matter how long you go without driving, once you put the key in the ignition it's like old times.
Janice received her Oncotype DX Test result last Thursday. She chose not to call me with her results last week so she wouldn't bring me down with the weekend coming up. Her score was 33 so she will have to have chemotherapy - 6 rounds, once every 3 weeks. She will have her chemo transfusions with Dr. Gupta (a wonderful oncologist who works in the Oncology Department at Bryn Mawr Medical Specialists Assocs). My sister works on the 3rd floor in the Business Dept. so I told her to stop by and visit my sister.
Dr. Gupta was the same oncologist my dear friend Cleo saw when she moved back home from New Mexico to live with her parents. Cleo had Stage IV breast cancer and the disease had spread to her lungs, bones and brain. On July 11th, one year ago, Cleo lost her battle to breast cancer.
With Arimidex and the 6 chemo rounds, Janice's recurrence rate will drop to 12%. I reassured her she will be fine, and considering we are being monitored very closely, if our cancer were to come back they will surely catch it in time. Even though our tumors were small, 1 cm, 1.5 cm, her tumor's profile was found to be aggressive.
An Oncotype score of 1 to 18 = low risk of recurrence.
An Oncotype score between 19 & 31 is moderate.
A score above 31 (32 to 100) is high risk.
I truly believe we are meant to meet certain people in our lives - I mentioned this in a prior post. Janice and I support each other. We cry, we laugh, and at the end of the day we cheer each other on. We talk a lot over the phone about our hopes and fears. She has to shop for a wig and hopes to find one that she likes today or tomorrow. Her chemo starts this Thursday.
We discussed our scars. We both agreed our scars will always remind us of our battles. Our war with cancer is not over. We both are living with cancer, and until the day we die, we will always be living with cancer. Our fight has not ended after our surgeries, it will not end when the drugs we have to take stop flowing. I have a 4% risk of a cancer recurrence, Janice will have a 12% risk of recurrence once her 6 rounds of chemo are over.
We will fight this disease until it is no more because no one should have to live with cancer. And as we fight, we are not victims - we will always be survivors.
We hugged each other outside and walked to our cars.
Hang in there Janice. Ten years from now we'll be looking back at what we have endured and we will be laughing!
I drove for the first time in 3 weeks - Dr. Frazier cleared me to drive as long as I put a pillow between my chest and the seat belt for protection. (Even as a passenger when my mom drove me to my appointments, I always used a pillow.) It was a bit unnerving but I managed to get my first 'drive' in without too much anxiety. Driving is like riding a bike - no matter how long you go without driving, once you put the key in the ignition it's like old times.
Janice received her Oncotype DX Test result last Thursday. She chose not to call me with her results last week so she wouldn't bring me down with the weekend coming up. Her score was 33 so she will have to have chemotherapy - 6 rounds, once every 3 weeks. She will have her chemo transfusions with Dr. Gupta (a wonderful oncologist who works in the Oncology Department at Bryn Mawr Medical Specialists Assocs). My sister works on the 3rd floor in the Business Dept. so I told her to stop by and visit my sister.
Dr. Gupta was the same oncologist my dear friend Cleo saw when she moved back home from New Mexico to live with her parents. Cleo had Stage IV breast cancer and the disease had spread to her lungs, bones and brain. On July 11th, one year ago, Cleo lost her battle to breast cancer.
With Arimidex and the 6 chemo rounds, Janice's recurrence rate will drop to 12%. I reassured her she will be fine, and considering we are being monitored very closely, if our cancer were to come back they will surely catch it in time. Even though our tumors were small, 1 cm, 1.5 cm, her tumor's profile was found to be aggressive.
An Oncotype score of 1 to 18 = low risk of recurrence.
An Oncotype score between 19 & 31 is moderate.
A score above 31 (32 to 100) is high risk.
I truly believe we are meant to meet certain people in our lives - I mentioned this in a prior post. Janice and I support each other. We cry, we laugh, and at the end of the day we cheer each other on. We talk a lot over the phone about our hopes and fears. She has to shop for a wig and hopes to find one that she likes today or tomorrow. Her chemo starts this Thursday.
We discussed our scars. We both agreed our scars will always remind us of our battles. Our war with cancer is not over. We both are living with cancer, and until the day we die, we will always be living with cancer. Our fight has not ended after our surgeries, it will not end when the drugs we have to take stop flowing. I have a 4% risk of a cancer recurrence, Janice will have a 12% risk of recurrence once her 6 rounds of chemo are over.
We will fight this disease until it is no more because no one should have to live with cancer. And as we fight, we are not victims - we will always be survivors.
We hugged each other outside and walked to our cars.
Hang in there Janice. Ten years from now we'll be looking back at what we have endured and we will be laughing!
Monday, October 13, 2014
Dr. Frazier follow-up appointment
This morning I had my follow-up appointment with Dr. Frazier. He examined me and drained more fluid from under my arm and below my scar. I had another rough weekend with pain and fluid buildup. I feel much better.
He then reviewed and provided me a copy of my Oncotype DX Test. My score was 4. The test ranges from 1 to 100. The lower your score the better. My tumor's 21 genes were profiled. My cancer is ER Positive which means I will have to take an aromatase inhibitor (Arimidex) which I will start in one month. Aromatase inhibitors help block estrogen. With Arimidex, I have a 4% risk of a recurrence of cancer within the next 10 years. Chemotherapy is recommended for a score of 6 or above.
I asked him if I could go back to work, and he said I could start working again next Monday.
Both Arimidex (and Tamoxifen) work by preventing the conversion of steroids made by the adrenal gland into estrogen; estrogen feeds the majority of breast cancers and helps them grow.
With an average of four years of treatment, hormone receptor-positive participants taking Arimidex were 22 percent more likely to be cancer-free than those taking Tamoxifen (304 patients on Arimidex vs. 363 patients on tamoxifen experienced recurrence). My risk of recurrence, based on the results of my Oncotype Test, is only 4 percent which is pretty good.
In addition, the absolute reduction of risk among those taking Arimidex compared to those taking tamoxifen increased from 1.7 percent at three years of follow-up to 2.9 percent at four years of follow-up. These are small but important differences, and the most significant result is that the gap is increasing over time.
Both drugs cause hot flashes, but unlike Tamoxifen, Arimidex does not cause blood clots or increase the risk of uterine cancer. However, there is a down side to being on Arimidex. Women taking this drug have more problems with bone fractures. Tamoxifen blocks estrogen in the breast, but it acts like a weak estrogen outside the breast, so it stimulates bone and keeps it from getting thin. Arimidex, on the other hand, works by preventing the production of estrogen. It doesn’t have any estrogen-like effects, so women taking this drug have more bone thinning and fractures.
Dr. Frazier will monitor me very closely. To avoid my bone density from getting too low I will need to take calcium supplements. I don't want to take prescription drugs like Zometa or Fosamax. I would rather take supplements.
Another down side to Arimidex is that it’s twice as expensive as Tamoxifen. It is what it is so regardless of how expensive my pills are I will manage.
I have always taken vitamin supplements but I will have to be viligent about taking the following every day:
1200 mg calcium, 800 iu vitamin D, 500 mg magnesium citrate, omega 3 and B-complex.
With the exception of magnesium citrate, I am already taking the rest. I will have to add that one.
Most common side effects of Arimidex, which are minimal:
Hot flashes and night sweats, joint and muscle pain, loss of bone mineral density (may lead to osteoporosis or bone fractures), headaches, nausea, vomiting
Uncommon or rare side effects:
Carpal Tunnel Syndrome, hair thinning, heart problems, increased blood pressure, increased cholesterol, mood swings and depression
I asked Dr. Frazier why I will start Arimidix in one month, why not sooner? My body has been through trauma, a mastectomy and the removal of two lymph nodes, so we need to wait another month while I continue to heal.
Can't wait to go back to work!
He then reviewed and provided me a copy of my Oncotype DX Test. My score was 4. The test ranges from 1 to 100. The lower your score the better. My tumor's 21 genes were profiled. My cancer is ER Positive which means I will have to take an aromatase inhibitor (Arimidex) which I will start in one month. Aromatase inhibitors help block estrogen. With Arimidex, I have a 4% risk of a recurrence of cancer within the next 10 years. Chemotherapy is recommended for a score of 6 or above.
I asked him if I could go back to work, and he said I could start working again next Monday.
Both Arimidex (and Tamoxifen) work by preventing the conversion of steroids made by the adrenal gland into estrogen; estrogen feeds the majority of breast cancers and helps them grow.
With an average of four years of treatment, hormone receptor-positive participants taking Arimidex were 22 percent more likely to be cancer-free than those taking Tamoxifen (304 patients on Arimidex vs. 363 patients on tamoxifen experienced recurrence). My risk of recurrence, based on the results of my Oncotype Test, is only 4 percent which is pretty good.
In addition, the absolute reduction of risk among those taking Arimidex compared to those taking tamoxifen increased from 1.7 percent at three years of follow-up to 2.9 percent at four years of follow-up. These are small but important differences, and the most significant result is that the gap is increasing over time.
Both drugs cause hot flashes, but unlike Tamoxifen, Arimidex does not cause blood clots or increase the risk of uterine cancer. However, there is a down side to being on Arimidex. Women taking this drug have more problems with bone fractures. Tamoxifen blocks estrogen in the breast, but it acts like a weak estrogen outside the breast, so it stimulates bone and keeps it from getting thin. Arimidex, on the other hand, works by preventing the production of estrogen. It doesn’t have any estrogen-like effects, so women taking this drug have more bone thinning and fractures.
Dr. Frazier will monitor me very closely. To avoid my bone density from getting too low I will need to take calcium supplements. I don't want to take prescription drugs like Zometa or Fosamax. I would rather take supplements.
Another down side to Arimidex is that it’s twice as expensive as Tamoxifen. It is what it is so regardless of how expensive my pills are I will manage.
I have always taken vitamin supplements but I will have to be viligent about taking the following every day:
1200 mg calcium, 800 iu vitamin D, 500 mg magnesium citrate, omega 3 and B-complex.
With the exception of magnesium citrate, I am already taking the rest. I will have to add that one.
Most common side effects of Arimidex, which are minimal:
Hot flashes and night sweats, joint and muscle pain, loss of bone mineral density (may lead to osteoporosis or bone fractures), headaches, nausea, vomiting
Uncommon or rare side effects:
Carpal Tunnel Syndrome, hair thinning, heart problems, increased blood pressure, increased cholesterol, mood swings and depression
I asked Dr. Frazier why I will start Arimidix in one month, why not sooner? My body has been through trauma, a mastectomy and the removal of two lymph nodes, so we need to wait another month while I continue to heal.
Can't wait to go back to work!
Sunday, October 12, 2014
CNN's Sensationalism
CNN Tonight turned to ophthalmologist and fiction writer Dr. Robin Cook to hype unsubstantiated fears about the transmission of the Ebola Virus and the CDC's grasp on the situation.
Presenting Cook as "The Man Who Wrote The Book On Ebola," host Don Lemon called Cook's 1987 fiction thriller Outbreak, which details an Ebola outbreak in the U.S.," prophetic." Lemon allowed Cook to speculate that the Centers for Disease Control and Prevention (CDC) cannot adequately protect Americans from Ebola, and that despite the CDC's assertions to the contrary, the virus may live in the air or mutate into a form that can spread as an aerosol.
Cook's theories on the transmission of Ebola are out of step with nearly every expert from international health agencies and the CDC. As Vox reported, "basically every health agency in the world agrees" that Ebola cannot be transmitted through the air. The CDC definitively says: "Ebola is not spread through the air or by water, or in general, by food."
Medical experts further agree that it's highly unlikely Ebola could mutate into a form that alters its mode of transmission. That type of mutation would be unprecedented according to Columbia University virologist Vincent Racaniello, who wrote: "We have been studying viruses for over 100 years, and we've never seen a human virus change the way it is transmitted," and that "There is no reason to believe that Ebola virus is any different from any of the viruses that infect humans and have not changed the way that they are spread."
Presenting Cook as "The Man Who Wrote The Book On Ebola," host Don Lemon called Cook's 1987 fiction thriller Outbreak, which details an Ebola outbreak in the U.S.," prophetic." Lemon allowed Cook to speculate that the Centers for Disease Control and Prevention (CDC) cannot adequately protect Americans from Ebola, and that despite the CDC's assertions to the contrary, the virus may live in the air or mutate into a form that can spread as an aerosol.
Cook's theories on the transmission of Ebola are out of step with nearly every expert from international health agencies and the CDC. As Vox reported, "basically every health agency in the world agrees" that Ebola cannot be transmitted through the air. The CDC definitively says: "Ebola is not spread through the air or by water, or in general, by food."
Medical experts further agree that it's highly unlikely Ebola could mutate into a form that alters its mode of transmission. That type of mutation would be unprecedented according to Columbia University virologist Vincent Racaniello, who wrote: "We have been studying viruses for over 100 years, and we've never seen a human virus change the way it is transmitted," and that "There is no reason to believe that Ebola virus is any different from any of the viruses that infect humans and have not changed the way that they are spread."
Stop the Distraction
So sick of marketing giants raking in billions of pink ribbon dollars while women continue to be diagnosed with and die from breast cancer.
Enough already!
Edema & Lymphedema
Another word to add to my cancer glossary: Lymphedema
Lymphedema concerns me because I had fluid build up under my arm and scar. Last Monday, after a very difficult and painful weekend, I had to see my doctor. He drained the seromas.
The medical term for swelling is edema. A certain amount of swelling always accompanies injury or surgery. It’s part of the normal inflammatory process by which our immune systems bring white blood cells to the area to help repair it. However, because it’s literally hot, as in inflammation, it’s also a nice little laboratory for the formation of problems like cellulitis or other infections, blood clots, seromas, and tissue necrosis. When our circulatory vessels get clogged up and overwhelmed by dealing with all this, the fluid can get backed up in the armpit or arm or even the torso next to the surgical site, signaling the onset of lymphedema.
An excellent website that provides thorough information about the diagnosis, prevention and management of lymphedema is StepUp-SpeakOut.org
The more lymph nodes you have removed or more trauma the higher the likelihood of developing lymphedema.
So grateful I only had two lymph nodes removed. At times, the area under my arm hurts more than the area where my actual breast was removed.
Can lymphedema be prevented? Unfortunately, no. But the good news is that you can do many things to reduce your personal risk.
The following six areas are highlighted in a position statement of the National Lymphedema Network:
1) Skin care – avoid trauma/injury to reduce infection risk: keep extremity clean and dry, apply moisturizer daily to avoid chapping/chafing of skin; attend to nail care and DO NOT cut cuticles; protect exposed skin with sunscreen and bug repellent; use care with razors to avoid nicks and cuts; wear gloves, especially while performing activities like gardening or using tools or chemicals; if scratches or punctures occur, wash with soap and water, apply antibiotics and watch for infection (redness); if a rash, itching, redness, pain, increased skin temperature, fever or flu-like symptoms occur, contact your physician immediately for early treatment of possible infection.
2) Activity/lifestyle – gradually build up intensity and duration of an activity; take frequent rests to allow for limb recovery; monitor the extremity during and after activity for any changes in size, shape, heaviness etc.; maintain your optimal weight.
3) Avoid limb constriction – wear loose fitting jewelry and clothing; avoid having blood pressure or any punctures (shots included) on the at-risk extremity.
4) Compression garments – if your medical professional has recommended you wear compression garments, they should be well-fitting, should support the at-risk limb during strenuous activity and worn during air travel.
5) Extremes of temperature – avoid exposure to extreme cold, which can be associated with rebound swelling or chapping of skin; avoid prolonged exposure (15 or more minutes) exposure to heat, particularly hot tubs and saunas; avoid placing limb in water temperature above 102 degrees Fahrenheit.
6) Additional practices – support the at-risk limb with a compression garnet for strenuous activity, except in patients with open wounds or with poor circulation in the at-risk limb.
Lymphedema concerns me because I had fluid build up under my arm and scar. Last Monday, after a very difficult and painful weekend, I had to see my doctor. He drained the seromas.
The medical term for swelling is edema. A certain amount of swelling always accompanies injury or surgery. It’s part of the normal inflammatory process by which our immune systems bring white blood cells to the area to help repair it. However, because it’s literally hot, as in inflammation, it’s also a nice little laboratory for the formation of problems like cellulitis or other infections, blood clots, seromas, and tissue necrosis. When our circulatory vessels get clogged up and overwhelmed by dealing with all this, the fluid can get backed up in the armpit or arm or even the torso next to the surgical site, signaling the onset of lymphedema.
An excellent website that provides thorough information about the diagnosis, prevention and management of lymphedema is StepUp-SpeakOut.org
The more lymph nodes you have removed or more trauma the higher the likelihood of developing lymphedema.
So grateful I only had two lymph nodes removed. At times, the area under my arm hurts more than the area where my actual breast was removed.
Can lymphedema be prevented? Unfortunately, no. But the good news is that you can do many things to reduce your personal risk.
The following six areas are highlighted in a position statement of the National Lymphedema Network:
1) Skin care – avoid trauma/injury to reduce infection risk: keep extremity clean and dry, apply moisturizer daily to avoid chapping/chafing of skin; attend to nail care and DO NOT cut cuticles; protect exposed skin with sunscreen and bug repellent; use care with razors to avoid nicks and cuts; wear gloves, especially while performing activities like gardening or using tools or chemicals; if scratches or punctures occur, wash with soap and water, apply antibiotics and watch for infection (redness); if a rash, itching, redness, pain, increased skin temperature, fever or flu-like symptoms occur, contact your physician immediately for early treatment of possible infection.
2) Activity/lifestyle – gradually build up intensity and duration of an activity; take frequent rests to allow for limb recovery; monitor the extremity during and after activity for any changes in size, shape, heaviness etc.; maintain your optimal weight.
3) Avoid limb constriction – wear loose fitting jewelry and clothing; avoid having blood pressure or any punctures (shots included) on the at-risk extremity.
4) Compression garments – if your medical professional has recommended you wear compression garments, they should be well-fitting, should support the at-risk limb during strenuous activity and worn during air travel.
5) Extremes of temperature – avoid exposure to extreme cold, which can be associated with rebound swelling or chapping of skin; avoid prolonged exposure (15 or more minutes) exposure to heat, particularly hot tubs and saunas; avoid placing limb in water temperature above 102 degrees Fahrenheit.
6) Additional practices – support the at-risk limb with a compression garnet for strenuous activity, except in patients with open wounds or with poor circulation in the at-risk limb.
Saturday, October 11, 2014
Enough Pinkwashing already!
Is October over yet?
(A hair extension is $20 and a portion of the proceeds will be donated to benefit Susan G. Komen Greater NYC for the fight against breast cancer.)
Before you donate any money to the Susan G. Komen Foundation, think.
Please rethink those pink hair extensions you were about to glue into your hair to show solidarity with breast cancer patients.
Two weeks after I was diagnosed with breast cancer, I had a mastectomy. Fighting cancer is very much like climbing a mountain. The pain that comes from human fear, loathing and suffering was shocking to me, and it has changed me forever.
So, why pink ribbons, pink bracelets, pink wrappers and inspiring smiling photos of women walking together, holding one another’s waists and smiling broadly from ear to ear?
These things remind me of happiness, babies and cotton candy. They do not conjure an image of a grown woman staring down death, swearing that she will kill herself before it kills her.
Pink ribbons have undoubtedly saved tens of thousands of lives just by the mere fact that awareness equals money. But I don’t have to enjoy having my suffering reduced to a trite symbol that reflects nothing of the depth of sorrow that hundreds of thousands of women and their families have been forced to endure.
Cancer preys on your body. You can fight as hard as you can and still be claimed. The only power you have is access to medical care and good doctors, and sometimes, even then, you lose. But come October, especially here in the United States, we love to celebrate the cancer patient.
'You’re so strong.'
'What courage!'
Let me tell you something. In the midst of my journey, I cry. Not a pretty pink ribbon cry. I’m talking sobs.
Does that sound brave or strong? If it appears to you that we are brave, strong and courageous, it is because, frankly, we have no choice. What are we going to do? Lie down and give up?
Pinkwashing the NFL or running sales promotions designed to earn corporations more money or refurbish their brands all around other people’s pain is sick and twisted. The color of baby blankets, fluffy cotton candy and your favorite Laffy Taffy does not represent the pain breast cancer patients have endured. Make it gray, make it black — or better yet, stop participating in the self-serving Pinkwashing and help make the switch from 'Awareness' to 'Action.'
How? Instead of buying pretty pink things where the majority of the profits do not go to research, donate directly to organizations that help women deal with the devastating diagnosis of cancer. Or, go see your friend and let her talk about what it’s like to lose her breasts and live with the constant fear of it sneaking up and making her endure it again. If you want to reflect on breast cancer and it’s true toll, visit and give to the SCAR Project. That is the real face of breast cancer and survivorship. Just like the confusing and contradictory cacophony of life, survivorship is ugly, hard, beautiful and joyous all at once.
And in case you haven’t been reminded enough: Go get your mammogram.
www.standup2cancer.org
www.metavivor.org
www.thescarproject.org
#ThinkBeforeYouPink #StopTheDistraction #Pinkwashing #BreastCancerAction
(A hair extension is $20 and a portion of the proceeds will be donated to benefit Susan G. Komen Greater NYC for the fight against breast cancer.)
Before you donate any money to the Susan G. Komen Foundation, think.
Please rethink those pink hair extensions you were about to glue into your hair to show solidarity with breast cancer patients.
Two weeks after I was diagnosed with breast cancer, I had a mastectomy. Fighting cancer is very much like climbing a mountain. The pain that comes from human fear, loathing and suffering was shocking to me, and it has changed me forever.
So, why pink ribbons, pink bracelets, pink wrappers and inspiring smiling photos of women walking together, holding one another’s waists and smiling broadly from ear to ear?
These things remind me of happiness, babies and cotton candy. They do not conjure an image of a grown woman staring down death, swearing that she will kill herself before it kills her.
Pink ribbons have undoubtedly saved tens of thousands of lives just by the mere fact that awareness equals money. But I don’t have to enjoy having my suffering reduced to a trite symbol that reflects nothing of the depth of sorrow that hundreds of thousands of women and their families have been forced to endure.
Cancer preys on your body. You can fight as hard as you can and still be claimed. The only power you have is access to medical care and good doctors, and sometimes, even then, you lose. But come October, especially here in the United States, we love to celebrate the cancer patient.
'You’re so strong.'
'What courage!'
Let me tell you something. In the midst of my journey, I cry. Not a pretty pink ribbon cry. I’m talking sobs.
Does that sound brave or strong? If it appears to you that we are brave, strong and courageous, it is because, frankly, we have no choice. What are we going to do? Lie down and give up?
Pinkwashing the NFL or running sales promotions designed to earn corporations more money or refurbish their brands all around other people’s pain is sick and twisted. The color of baby blankets, fluffy cotton candy and your favorite Laffy Taffy does not represent the pain breast cancer patients have endured. Make it gray, make it black — or better yet, stop participating in the self-serving Pinkwashing and help make the switch from 'Awareness' to 'Action.'
How? Instead of buying pretty pink things where the majority of the profits do not go to research, donate directly to organizations that help women deal with the devastating diagnosis of cancer. Or, go see your friend and let her talk about what it’s like to lose her breasts and live with the constant fear of it sneaking up and making her endure it again. If you want to reflect on breast cancer and it’s true toll, visit and give to the SCAR Project. That is the real face of breast cancer and survivorship. Just like the confusing and contradictory cacophony of life, survivorship is ugly, hard, beautiful and joyous all at once.
And in case you haven’t been reminded enough: Go get your mammogram.
www.standup2cancer.org
www.metavivor.org
www.thescarproject.org
#ThinkBeforeYouPink #StopTheDistraction #Pinkwashing #BreastCancerAction
Ebola - Question Everything
Question everything you hear about Ebola. Everything.
I'm far from being a conspiracy nut. I need facts to support any sensational reporting of ANY threat to us. The boob tube and the game show hosts (news correspondents) are doing a pretty good job of scaring the heebie jeebies out of the average American (key word: average).
I really have a problem with Ebola. (See prior post - Malaria)
To screen or not to screen? To quarantine or not to quarantine?
The reason for my skepticism:
1) though perhaps originally discovered in the wild, it is classified as "Category A biowarfare agent" [CDC 2002]
ref:
http://courses.washington.edu/eh451/articles/filoviruses.pdf
and by 2009, it was patented as intellectual property (engineered, modified?) [there's the private financial protection of 'owning it']
proof: http://www.google.com/patents/CA2741523A1
2) certain strains would appear to indeed be airborne by aersolized fluids and
3) there is really no legitimate reason this should be becoming 'a problem' AT ALL given the independent STATE-grant FUNDED academic science demonstrated below in the last couple of years:
http://www.ncbi.nlm.nih.gov/pubmed/24930448
http://www.ncbi.nlm.nih.gov/pubmed/21329775
"Ebola virus glycoprotein Fc fusion protein confers protection against lethal challenge in vaccinated mice."
"Filovirus GP Fc fusion proteins could be developed as a simple, safe, efficacious, and cost effective vaccine against Filovirus infection for human use."
Why would we be having this 'problem' right now? Is it just me, or is it easier to print rumors of 'flulike symptoms' than for THAT many people to suddenly make it to that many places in this country that fast?
The Center for Disease Control (CDC) has issued another 'Outbreak Update':
CDC is implementing enhanced entry screening at five U.S. airports that receive over 94% of travelers from Guinea, Liberia, and Sierra Leone.
A confirmed case of Ebola has been reported in Spain.
On September 30, 2014, CDC confirmed the first travel-associated case of Ebola to be diagnosed in the United States. The patient passed away on October 8, 2014.
New cases continue to be reported from Guinea, Liberia, and Sierra Leone.
The Democratic Republic of the Congo (DRC) has reported cases of Ebola. These cases are not related to the ongoing outbreak of Ebola in West Africa.
What?!
So how did the reported cases in the Democratic Republic of the Congo come into being?
Is it just me, or do you also have questions surrounding the Ebola outbreak that have not been answered?
Angry crowds in Africa have accused foreigners of bringing the virus into the country.
If you examine CIA activities and foreign policy initiatives in Central Africa in response to alleged threats posed by communism, black nationalism, and Third World populations, this fear is warranted.
The germ could be a laboratory creation, accidentally or intentionally transmitted via hepatitis and smallpox vaccines. Could. I'm not saying that it is ...
It is widely thought Ebola is first acquired by a population when a person comes into contact with the blood or bodily fluids of an infected animal like a monkey or fruit bat. Is there any proof for this theory? No. Mere speculation. This theory was floated around when AIDS came onto the scene back in the late 70s - early 80s. A monkey came into contact with a human back then as well.
I'm sorry ... 'you can fool some people sometimes, but you can't fool all the people all the time.' (Bob Marley)
Once infection occurs, the disease may be spread from one person to another ...
I love my country. I don't trust my government.
I'm far from being a conspiracy nut. I need facts to support any sensational reporting of ANY threat to us. The boob tube and the game show hosts (news correspondents) are doing a pretty good job of scaring the heebie jeebies out of the average American (key word: average).
I really have a problem with Ebola. (See prior post - Malaria)
To screen or not to screen? To quarantine or not to quarantine?
The reason for my skepticism:
1) though perhaps originally discovered in the wild, it is classified as "Category A biowarfare agent" [CDC 2002]
ref:
http://courses.washington.edu/eh451/articles/filoviruses.pdf
and by 2009, it was patented as intellectual property (engineered, modified?) [there's the private financial protection of 'owning it']
proof: http://www.google.com/patents/CA2741523A1
2) certain strains would appear to indeed be airborne by aersolized fluids and
3) there is really no legitimate reason this should be becoming 'a problem' AT ALL given the independent STATE-grant FUNDED academic science demonstrated below in the last couple of years:
http://www.ncbi.nlm.nih.gov/pubmed/24930448
http://www.ncbi.nlm.nih.gov/pubmed/21329775
"Ebola virus glycoprotein Fc fusion protein confers protection against lethal challenge in vaccinated mice."
"Filovirus GP Fc fusion proteins could be developed as a simple, safe, efficacious, and cost effective vaccine against Filovirus infection for human use."
Why would we be having this 'problem' right now? Is it just me, or is it easier to print rumors of 'flulike symptoms' than for THAT many people to suddenly make it to that many places in this country that fast?
The Center for Disease Control (CDC) has issued another 'Outbreak Update':
CDC is implementing enhanced entry screening at five U.S. airports that receive over 94% of travelers from Guinea, Liberia, and Sierra Leone.
A confirmed case of Ebola has been reported in Spain.
On September 30, 2014, CDC confirmed the first travel-associated case of Ebola to be diagnosed in the United States. The patient passed away on October 8, 2014.
New cases continue to be reported from Guinea, Liberia, and Sierra Leone.
The Democratic Republic of the Congo (DRC) has reported cases of Ebola. These cases are not related to the ongoing outbreak of Ebola in West Africa.
What?!
So how did the reported cases in the Democratic Republic of the Congo come into being?
Is it just me, or do you also have questions surrounding the Ebola outbreak that have not been answered?
Angry crowds in Africa have accused foreigners of bringing the virus into the country.
If you examine CIA activities and foreign policy initiatives in Central Africa in response to alleged threats posed by communism, black nationalism, and Third World populations, this fear is warranted.
The germ could be a laboratory creation, accidentally or intentionally transmitted via hepatitis and smallpox vaccines. Could. I'm not saying that it is ...
It is widely thought Ebola is first acquired by a population when a person comes into contact with the blood or bodily fluids of an infected animal like a monkey or fruit bat. Is there any proof for this theory? No. Mere speculation. This theory was floated around when AIDS came onto the scene back in the late 70s - early 80s. A monkey came into contact with a human back then as well.
I'm sorry ... 'you can fool some people sometimes, but you can't fool all the people all the time.' (Bob Marley)
Once infection occurs, the disease may be spread from one person to another ...
I love my country. I don't trust my government.
Primitive mother#@$ kers!
Islam is inherently a peaceful religion, blah, blah, blah ...
Who are they kidding?!
How many insane Muslim groups has Islam spawned today?
Hezbollah, Hamas, Islamic Jihad, Al Qaeda and its affiliates, Taliban, Lashkar-e-Taiba, Jabhat al-Nusra, Islamic State in Iraq and the Levant (ISIS), Islamic State (IS), al-Shabab in Somalia, Ansar al-Sharia in Lybia, Ansar al-Sharia in Tunisia, Jemaah Islamiah, Abu Sayyaf, Ansar Bayt Al-Maqdis, Hizb-ut-Tahrir, Al Qaeda in the Islamic Maghreb (AQIM), Boko Haram, Iran and the Iranian Revolutionary Guard Corps, Salafists, the Syrian Al Assad, radical salafi and jihadi networks. Perhaps one or two of the aforementioned groups don’t fit, so replace them with the dozen others not mentioned.
No sane person wants another regressive, repressive, and primitive Islamic state in the world. With over 18,000 deadly Islamist terrorists attacks in just the last ten years, it is time to call a spade a spade: Islam is the religion of poison. Quran Surahs 9:5 - 9:29, the "Sword verses" Muslims are advised to "... fight those who do not believe in Allah in the last day and who do not consider unlawful what Allah and his messenger (Muhammad) have made unlawful and who do not adopt the religion of truth (Islam)."
Note the picture below:
They are not allowed to listen to music, play chess or watch soccer games. Men can't shave their beards, women can't drive cars, little girls can't go to school and little boys can grow up learning nothing except Koranic verses.
#@$king animals!
Can you imagine not being able to fly a kite or sing? Music is my religion.
There is no Islamic option for equal rights. There is no such thing as moderation when it comes to this antiquated patriarchal religion. A moderate theocracy is still a theocracy. Moderate inequality is still inequality.
This multifaceted threat must be wiped off the face of the earth.
Anyone who believes in basic human rights would agree.
Who are they kidding?!
How many insane Muslim groups has Islam spawned today?
Hezbollah, Hamas, Islamic Jihad, Al Qaeda and its affiliates, Taliban, Lashkar-e-Taiba, Jabhat al-Nusra, Islamic State in Iraq and the Levant (ISIS), Islamic State (IS), al-Shabab in Somalia, Ansar al-Sharia in Lybia, Ansar al-Sharia in Tunisia, Jemaah Islamiah, Abu Sayyaf, Ansar Bayt Al-Maqdis, Hizb-ut-Tahrir, Al Qaeda in the Islamic Maghreb (AQIM), Boko Haram, Iran and the Iranian Revolutionary Guard Corps, Salafists, the Syrian Al Assad, radical salafi and jihadi networks. Perhaps one or two of the aforementioned groups don’t fit, so replace them with the dozen others not mentioned.
No sane person wants another regressive, repressive, and primitive Islamic state in the world. With over 18,000 deadly Islamist terrorists attacks in just the last ten years, it is time to call a spade a spade: Islam is the religion of poison. Quran Surahs 9:5 - 9:29, the "Sword verses" Muslims are advised to "... fight those who do not believe in Allah in the last day and who do not consider unlawful what Allah and his messenger (Muhammad) have made unlawful and who do not adopt the religion of truth (Islam)."
Note the picture below:
They are not allowed to listen to music, play chess or watch soccer games. Men can't shave their beards, women can't drive cars, little girls can't go to school and little boys can grow up learning nothing except Koranic verses.
#@$king animals!
Can you imagine not being able to fly a kite or sing? Music is my religion.
There is no Islamic option for equal rights. There is no such thing as moderation when it comes to this antiquated patriarchal religion. A moderate theocracy is still a theocracy. Moderate inequality is still inequality.
This multifaceted threat must be wiped off the face of the earth.
Anyone who believes in basic human rights would agree.
Let's Not Forget Malaria
The casualties due to Malaria have exceeded those of battle.
Estimates of the number of annual deaths from Malaria differ quite widely. One of the reasons for this is that we still don’t have accurate records. One statistic often quoted is that, today, Malaria kills about one million people every year, most of them children.
Most people who die from Malaria are killed before they have a chance to reproduce, which means that the disease will have had a very significant impact on population.
Malaria is especially serious during pregnancy, leading to septic abortion, still birth, and poor health in newborns. The World Health Organization (WHO) states that low birth weight due to Malaria in pregnancy contributes significantly to infant mortality; therefore, babies conceived but born dead, and infant deaths indirectly due to Malaria are significant as well.
The World Health Organization (WHO) states that during the first half of the 20th century, the world sustained around 2 million deaths from Malaria each year, so for that period alone, there were a hundred million deaths.
After that, mortality was halved by better treatment and eradication efforts.
Malaria Deaths Before 1900:
Malaria is the only one of the major epidemic killers of humans that is thought to have been with us throughout our entire evolution, so the death toll started right at the beginning, though numbers were likely low until we had permanent settlements with larger populations.
An interesting health warning by the U.S. Public Health Service in 1919 stated:
For the South as a whole it is safe to say that Typhoid Fever, Dysentery, Pellagra, and Tuberculosis, all together, are not as important as Malaria.
Estimates of the number of annual deaths from Malaria differ quite widely. One of the reasons for this is that we still don’t have accurate records. One statistic often quoted is that, today, Malaria kills about one million people every year, most of them children.
Most people who die from Malaria are killed before they have a chance to reproduce, which means that the disease will have had a very significant impact on population.
Malaria is especially serious during pregnancy, leading to septic abortion, still birth, and poor health in newborns. The World Health Organization (WHO) states that low birth weight due to Malaria in pregnancy contributes significantly to infant mortality; therefore, babies conceived but born dead, and infant deaths indirectly due to Malaria are significant as well.
The World Health Organization (WHO) states that during the first half of the 20th century, the world sustained around 2 million deaths from Malaria each year, so for that period alone, there were a hundred million deaths.
After that, mortality was halved by better treatment and eradication efforts.
Malaria Deaths Before 1900:
Malaria is the only one of the major epidemic killers of humans that is thought to have been with us throughout our entire evolution, so the death toll started right at the beginning, though numbers were likely low until we had permanent settlements with larger populations.
An interesting health warning by the U.S. Public Health Service in 1919 stated:
For the South as a whole it is safe to say that Typhoid Fever, Dysentery, Pellagra, and Tuberculosis, all together, are not as important as Malaria.
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