Peace, Love and a Cure 2011

Last week, the rain in the tri-state area stopped long enough for a few rays of sunshine to fall on New Jersey as the Triple Negative Breast Cancer Foundation celebrated its 4^th “Peace, Love and a Cure” event.  It was a beautiful evening, attended by over 300 supporters, with the highlight being our wonderful honorees: Karen Wittweger of Genentech, Dr. Lisa Carey and Jennifer Griffin.  Many of you are undoubtedly familiar with Jennifer through her work as a Mideast correspondent for Fox News.  Others may know her through her work as a tireless advocate for triple negative breast cancer, since her diagnosis almost 2 years ago.  Jennifer has brought new visibility to the TNBC cause through her many appearances, her blog and her determination to spread awareness.  We were honored to honor her with the Champion Award!

It is my pleasure to share Jennifer’s inspirational words:

When I was diagnosed with Stage 3 Triple Negative breast cancer on September 28, 2009, I was still nursing my son, Luke. He was just six months old. Our two daughters were 7 and 9 and I immediately realized that if I was going to beat my diagnosis that I was going to have to use all of the skills that I had developed over the years as a journalist covering other people’s wars. I had covered famine in Somalia, Mandela’s release from prison, nearly a decade of fighting between the Israelis and Palestinians, the Iraq and Afghan wars after 9/11. This, too, was a war. It just happened to be in my breast. Seventeen rounds of chemo, a double mastectomy, 6 and a half weeks of radiation and word from my oncologist on April 20, 2010 – my 41st birthday – that I had had a complete pathologic response to the chemotherapy and that there was no sign of cancer. My surgeons had rebuilt me and I felt like the bionic woman with my new breasts. I never would have gotten through my months of chemo and fear that I wouldn’t see my children grow up without the love and support of my friends and family and my extended family at Fox News. My mom, herself a breast cancer survivor, gave me a pep talk and told me I was going to survive. Greta Van Susteren gave me a video camera so that my girls could document the fight. My girls, Annalise and Amelia, kept me laughing and came with me to shave my head and buy my wigs, which they aptly named “the Miley” or after various American Idol stars. My husband Greg did what he does best – remained positive and diverted me by making me pen certain chapters in our book, “This Burning Land” about our years in the roiling Middle East while the doctors gave me chemo. My friends got together and hired a personal chef to start feeding me ultra healthy food because I soon learned that while Triple Negative patients don’t have a tamoxifen or herceptin, we do have a low saturated fat diet and 45 minutes of exercise a day that can lower our chance of recurrence by nearly two-thirds. My friends didn’t trust me to kick my bagel and cream cheese habit so they began food deliveries and nursed me back to health. I learned that food could be medicine and I took up Pilates, which gave me crazy core strength going into the mastectomy. My doctors at Georgetown University’s Lombardi Cancer Center saved my life. I don’t know how to thank them except to do what you all are doing tonight, raising awareness and funds to help the brilliant researchers out there find a cure for Triple Negative Breast Cancer so that no young mother or any woman for that matter will have to go through what I went through. I am the luckiest girl in the world. And with your help, we will find “Peace, Love and A Cure.”

Visit Jennifer’s blog for more on her life as a news correspondent, and about her TNBC journey.

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A Belated Mother’s Day Gift

This blog entry comes to us courtesy of one of the Triple Negative Breast Cancer Foundation’s longtime forum members, Natalia M., who shares with us her very personal story about motherhood and TNBC.  Thank you, Natalia, for your “gift” to us all!

Tough decisions (or my quest through whether or not to have a child after breast cancer treatment)

*** Disclaimer:  I hate to start my blog post with a disclaimer but this is the lawyer in me speaking. This blog post is the result of my own personal views and experiences and it doesn’t intend to give any type of medical advice or to influence anyone’s decisions with regards to the issues addressed herein.

  It was at my second opinion surgeon’s appointment that the issue of fertility and cancer treatment was brought to my attention after my cancer journey began. I had been married for over seven years and we had waited for the right moment to have children. I had a miscarriage on our first try. Thankfully we were able to get pregnant easily again and after an uneventful and very happy pregnancy I gave birth to a beautiful healthy boy.

 I had returned back to work and was juggling motherhood and work and I had never been happier. When I was diagnosed with breast cancer the news came to me like a shock; like if I had hit a wall in the middle of the road during a beautiful drive. Of course the first thing that came to my mind was my son. I didn’t want to leave a baby so young without a mother; I didn’t want to think about all the possibilities down that road. I immersed myself in research about triple negative breast cancer and what to do about it and how to improve my chances of being able to see my son grow up.

 But during those crazy, anguish-filled, uncertain and almost surreal weeks, I didn’t think about the possibility, or not, of having more children. When the doctors told us about the fertility issues related to cancer treatment we were faced with yet another important decision to make. We were given the option of seeing a fertility specialist in order to take steps such as freezing embryos or eggs in order to ensure that we could have more kids in the future. For both my husband and I our siblings are a very important part of our lives, so we definitely wanted our son to have them; and we enjoyed being parents so much that we had already talked about trying to have at least one or two more babies.

 However, when we researched about the fertility treatments we learned that I would have to receive treatment with hormones, which would put me in increased risk for cancer on its own (and it could also affect the breast cancer that I already had). So at that moment I decided to focus on getting rid of my breast cancer, as my son was my first priority and I needed to do all I could to make sure I would be there for him. We also knew that studies show that the younger a woman is when going through chemo the better her chances are of being able to conceive. We left it in God’s hands and went ahead with surgery and chemo.

 Once I was done with chemo and radiation I found myself looking forward to having my period back.  It was also the time for me to face the decision of what to do about my ovaries.  The fact that I have the BRCA 1 mutation makes me prone to both breast and ovarian cancer. When I talked about that subject with my doctors, the children issue inevitably came up. They all told me they believed I would get my period back and that it would be safe for me to eventually have children.  They all said that the body got rid of all residues from chemo and radiation quickly and at that time, about 5 months after finishing radiation, my blood counts and the rest of my body were back to normal and healthy enough for me to have a baby.  However their opinions differed as to when it would be wise for me to get pregnant again.

 Half of my doctors said that I should try to get pregnant as soon as I got my period back. They said I should go on with my life and not dwell on cancer and the fear of recurrence.  They also want my ovaries out ASAP. The other half believed I should wait until the three-year recurrence peak for TNBC has passed. As one of them put it, it is already bad to have a recurrence and having it while pregnant would make it worse. He reminded us of how after the three years the chance of recurrence fell and so we would be less likely to face the tough decisions that families face when fighting cancer while pregnant. They also said that since I am still young waiting for a little while will not make much impact on my ovarian cancer risk.

 So it has not been easy for us to decide about when to do it. I used to joke by saying I would split the difference. But it has been already two years and a half since my surgery and at this point I think I want to play it safe and just wait another six months before I decide to try.

 I am a nerd; I have to admit it, I have always been one. As a cancer patient, this means that I try to research and learn about everything I am facing. Although my doctors have all said that it is safe for me to have more children, I have read and heard about PABC or pregnancy associated breast cancer. This has cast some doubts on my decision whether or not to have more children.

 Breast cancer is considered to be associated with pregnancy if diagnosed during a pregnancy or, as in my case, within a year following delivery[1]. Doctors at MD Anderson and other cancer centers have studied it closely as in PABC the rates of death from breast cancer are high. Recent studies have shown that this is mostly due to the fact that diagnosis during pregnancy is difficult as the breasts are too dense for mammograms and tests like PET Scans and similar are not recommended[2]. In these cases treatment is usually postponed until the fetus is able to take the chemo without problems or even until it can be safely taken out of the patient. Since these patients are usually young women whose cancer is usually pretty aggressive, any delays in diagnosis and treatment could affect their survival rates.

 The links between the pregnancy hormones and breast cancer are not yet fully understood. Just recently, several studies have shed some light on how the inflammation of the breast tissue that takes place during pregnancy affects the rate at which breast cancer grows[3].  Another recent study found that giving birth multiple times was related to an increase in the risk of developing triple negative breast cancer[4]. But this still doesn’t answer the question as to whether the pregnancy induces or causes the cancer. Also, the surge in hormones that pregnancy brings to a woman’s body may also promote the development of breast cancer. Although there are no definite studies showing a link between this surge in hormones during pregnancy and breast cancer, there are several studies showing that estrogen levels do affect the development of breast cancer even in hormone negative cases[5].

 BRCA status may also affect the risk of breast cancer associated with pregnancy. Some early studies showed that BRCA related breast cancer risk was associated with pregnancy[6]. But, other studies showed no definite association between pregnancy and BRCA related breast cancer risk[7]. More recent studies showed that the effect of pregnancy on the risk of breast cancer may differ between BRCA1 and BRCA2 mutation carriers at the data seemed to show that an increased number of pregnancies did increase the risk of breast cancer for BRCA2 mutation carriers but not for BRCA1 carriers[8].  Also, some studies have shown that estrogen does play a meaningful role in the development of breast cancer in BRCA1 mutation carriers. Some are even contemplating the use of hormone therapy as an alternative for breast cancer prevention for BRCA1 carriers even in hormone negative breast cancer cases[9].

 On the other hand, a recent meta-analysis that was published last year[10] looked at various studies that followed breast cancer survivors that had children after being diagnosed and treated and in general their survival rates were better than those of women who didn’t. In fact, doctors are currently studying the role that pregnancy hormones play in breast cancer, as they actually seem to prevent it, and there are ongoing clinical trials in which women are being given the hormones to prevent breast cancer[11]. There are no studies showing that a pregnancy after being successfully treated for breast cancer increases the chance of a recurrence[12]. Furthermore, what the studies on the subject seem to show is that pregnancy seems to offer some type of protection from a breast cancer recurrence[13].

 So far my research has not given me a definitive answer; I guess that science isn’t able to provide one yet. I am still undecided as to what to do and although so far none of my doctors have advised me against having another child I don’t want to have any regrets and I am still haunted by the fact that I found my cancer within a few months after giving birth. In the meantime, I am enjoying my little one and have actually found this time I’ve waited to have another one as a blessing, as I am being able to fully enjoy my child.  I have found that breast cancer is more than just a challenge itself as it brings many challenges along side. Fertility and parenthood are some of the ones that I have encountered along the way and as with the rest, I will try to educate myself as much as I can in order to make a decision that I can live with.

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[1] See http://www.medscape.com/viewarticle/711009, http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=48783

[2] See http://www.mdanderson.org/newsroom/news-releases/2009/m-d-anderson-study-finds-pregnancy-has-no-impact-on-breast-cancer-survival-does-delay-treatment-diagnosis.html

[3] See http://www.sciencedaily.com/releases/2010/03/100329162938.htm

[4] http://www.medpagetoday.com/HematologyOncology/BreastCancer/25071

[5] A couple of such studies can be found here:

http://www.sbs.utexas.edu/dharma/sigcancerpps/akt.pdf

http://www.tufts-mori.org/kuperwasser/Kuperwasser2062.pdf

[6] http://www.ncbi.nlm.nih.gov/pubmed/15040392

[7] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1797022/

[8]http://demo.cancerconsultants.com/Content.aspx?Section=cancernews&DocumentID=35259

[9] http://jnci.oxfordjournals.org/content/94/19/1504.2.full

[10] See http://www.hopkinsbreastcenter.org/artemis/201004/21.html

[11] See http://www.hopkinsbreastcenter.org/artemis/201001/28.html ; http://clinicaltrials.gov/ct2/show/NCT00808522?term=hcg+AND+breast+cancer&rank=1; http://clinicaltrials.gov/ct2/show/NCT00700778?term=hcg+AND+breast+cancer&rank=2 ;

[12] See for example  http://www.medscape.org/viewarticle/707303 and http://www.breastcancer.org/tips/questions/pregnancy.jsp

[13] http://www.medscape.org/viewarticle/707303

You CAN Survive Triple Negative Breast cancer

 Written by Patricia Prijatel on her blog, Positives About Negative, and posted on April 11, 2011.

Triple-negative breast cancer has caught the attention of major researchers throughout the world, which is a great thing—it means that we are learning more and more about how to prevent and treat this illness. The downside of the research popularity is that the media and medical journals have developed depressing and frightening catch phrases for it, such as deadly, particularly aggressive or, my favorite, a lethal triad. People who write these words do not realize that they can terrify the women who read them, hitting like a heavy thud on our hearts. Researchers are trying to define the disease. Patients are trying to beat it.

 The aggressive nature of hormone-negative is a comparative measure. That is, these cancers are, in general, more aggressive than hormone-positive cancers—although, in some cases, only slightly more aggressive. And some hormone-negative cancers can actually be less aggressive than some hormone-positive cancers. Scientists work in generalizations, defining how the disease affects women as a group. Individual cases vary and, researchers increasingly say, are as unique as our DNA.

 How researchers classify triple-negative, for example, can vary. My own case—negative for estrogen and her2, but weakly positive for progesterone—puts me in a fairly narrow subset. Yet I had two oncologists tell me that they classify weakly positive as a negative, meaning I would be triple-negative. Researchers disagree, usually considering any level of positive as being positive. It is possible, though, that my weakly positive progesterone put me in a less agressive subset that is so small it is seldom researched.

 So let’s look at some of the data and what they mean. And rather than simply accepting the gloomy picture that is often presented, let’s approach this in the enterprising spirit of yeah, but….

It is true that hormone-negative breast cancers can be more aggressive than hormone-positive. But the majority of women who get the disease survive.

 It is true that most cases of recurrence come within the first three years. But that means that those who hit five years are looking at an excellent prognosis. A better long-term prognosis, in fact, than those with hormone-positive.

 It is true that triple-negative is more likely to have spread to the lymph nodes. But many women with TNBC have no positive nodes—and, if they do, they still beat the disease and survive.

 I have learned to turn statistics around to improve my perspective. For example, when research says that 30 percent of the women with triple negative died in a particular study, I turn this around and realize that 70 percent of the women survived. And I plan to be one of those women. And if, in another study, a triple-negative woman faces a two-fold increased risk of death compared with hormone-positive, I look at the fact that the difference might be between a 10 percent risk of and a 20 percent risk. And, while those decreased odds are startling and sobering, they still can mean an 80 percent chance of not dying. Even starting with a poorer prognosis, the odds can still be with you.

 NOTE: This is an excerpt from the book I am writing on triple-negative breast cancer.

 

Notes from San Antonio

While there was no “BIG NEWS” about triple negative breast cancer released at this year’s San Antonio Breast Cancer Symposium, there were several interesting and potentially impactful presentations and discussions.
Here are some highlights, taken from my notes:
Poster Session and Discussion on Metformin: Research is ongoing to demonstrate whether metformin, the most common medication used to treat type 2 diabetes, may also suppress breast cancer cell growth. Studies have found that diabetics who were treated with metformin were less likely to develop breast cancer than those who did not take the medication. Metformin may also have a positive effect on breast cancer outcomes, and that this effect may be more pronounced in TNBC.
Pamela Meiers and her colleagues at University of Toronto and Ying-Ka Lau at Columbia University presented posters that are exploring this connection that may prove to be important in the treatment of TNBC. Dr. Lau’s research involves the combination therapy of erlotinib (Tarceva) with metformin.
For more on metformin and its potential role in breast cancer, take a look at an article published by FORCE (Facing Our Risk of Cancer Empowered) in their Spring 2010 newsletter.
Lifestyle Factors and Breast Cancer: Again, there’s no earth-shattering news here, but the evidence continues to accumulate that obesity prior to a breast cancer diagnosis can mean a poorer prognosis. There is some debate amongst researchers about the role of fitness and weight loss as it relates to risk of recurrence and overall outcomes. Some evidence suggests that exercise and a lowfat diet with plenty of fruits and vegetables have more of an effect on outcomes than does weight loss. In the WINS study (Women’s Interventional Nutrition Study), 24% of the group who were randomized to follow a lowfat diet had a significant decrease in risk of recurrence. Other findings from the WINS study show better outcomes in the group that increased their physical activity.
In a related discussion about fitness, it was mentioned that many women are told that they should not practice upper-body strength training after surgery for breast cancer, out of concern about lymphedema. There is now evidence that slowly progressive strengthening of the upper body may be safe for these women. Katie Schmitz at the University of Pennsylvania and several others have shown that women participating in regular, slowly progressive weight exercise of the upper body had lower rates of lymphedema than women who exercised but did not do weight training.
The Upside of Irrationality- Dan Ariely, PhD
It’s uncommon for the SABCS to feature a non-MD in one of its plenary lectures. And it’s even rarer for those lectures to be centered around seemingly non-medical topics. But the plenary lecture given by Dan Ariely was just that. Dr. Ariely, the James Duke Professor of Psychology and Behavioral Economics at Duke University, has spent most of his career focused on how people make decisions on everything from their finances to their relationships with their healthcare providers. He became interested in the decision-making process while hospitalized for an extended period of time after being burned over 70% of his body in an accident. While being treated, he noticed that the nurses were making “intuitive decisions” about how much pain he was suffering. While they were trying to help him, in fact these decisions were based on incorrect intuitions, and they were causing him great pain and suffering.
Even in processing basic things which can be seen with our own eyes, our brains are filtering information which may be affected by external factors which lead to incorrect conclusions. Decisions are affected by the environment in which we make them, and this environment is often out of our own control. We are also affected in our decision-making by how complicated the decision is. In fact, Dr. Ariely showed, because of this, we often make decisions that are easier for us, not better for us.
How does this relate to the relationship a patient has with their doctor? Patients are asked to make difficult decisions under difficult conditions, often under time constraints, and often with limited information about outcomes and options. The doctor may not always appreciate how complex these decisions are for the patient, or that the patient may not have sufficient knowledge to make good decisions. Faced with what seems to be an overwhelmingly complex process, a patient may choose the easiest option- the example Dr. Ariely gave was a choice between mastectomy or a course of neoadjuvant therapy which might allow for more conservative surgery- but not necessarily the best option for them.
With the array of choices patients have at many points along their treatment continuum, Dr. Ariely recommended that doctors consider how to best support the patient in making decisions. With advocacy and patient-centered care being important buzz words now, it is imperative for the doctor to include the patient in a way that is meaningful to the patient. He closed his short but impactful lecture to his captivated audience of healthcare providers with the caution, “Doubt your intuitions; be willing to try different things.”
Dr. Ariely is the author of Predictably Irrational: The Hidden Forces that Shape our Decisions and The Upside of Irrationality: The Unexpected Ways We Defy Logic at Work and at Home.

Caregiving for Mom or Dad

By: Helen

It is strange how things get turned around when our parents get ill, especially with the diagnosis of breast cancer.  Yes, Dad’s can get breast cancer too. 

There is a subtype of cancer that is called triple negative (TNBC).  TNBC is a very aggressive cancer and can affect all ages and genders.  Steve has posted some valuable information about the hereditary, genetics and being tested for the genes that causes TNBC and how important this is.  Check his document out on this site!

As the oldest in a family of three children, I was the one who was the caregiver to my mom for many years. Chronic disease is ongoing and is very tiring for the patient and the ones who care for them, but we always hope for a cure no matter what!  Mom had COPD for many years and therefore I had to keep a close eye on her for her care that she had her medications, enough groceries in the house, if there was any housecleaning that she needed to have done, appointments to physicians, multiple hospital admissions and basically that all her needs were met before I could take care of my own life and children.

I guess you get the picture of what we must do for each other whether they are a parent or a friend.  We are each called to help the other out and do whatever we can without compromising your own health and that is what I want to speak to you about today.

As a single parent, working in the health care field, with two children, it was my responsibility to ensure that my mom had what she needed to have a good life and that is what I did right to the end of her life.  Was it difficult?  Yes, to say the least it was.  Was it worth it?  Yes, absolutely!  There is nothing like a clear mind when you get to finally put your head down on the pillow and say, I did my best and the rest doesn’t matter.  It is an awesome feeling! Especially when it is your mom or dad who you have loved all your life and know that they have loved you to the best of their ability and now you have no regrets! 

My parents separated when I was young so I was used to doing for each one separately.  It is difficult but doable. Planning is everything and even then, the best laid plans of mice and men….but if you have a plan, it works better.  I would say I spent 37 years of my life ensuring my mom had what she needed.  I worked two jobs to be able to sustain my two children and a home.  I was flexible with my time and usually took the children with me so they became very close to their nan and as they grew up they would help out when they were asked. 

Environment is very important to where your parents live and what resources they have around them, like neighbors, how far they are away from you in distance, I was 20 miles from mom so in twenty minutes, I would be at her door.  Fire Department services were close and due to a fall she had, they had to be called.  Thank goodness they were there but when our parents age they loose some of their balance and the things we take for granted become major issues to them.  She broke two of her toes and had a bump on her head but was very lucky the first responders arrived within 10 minutes. 

When mom was diagnosed with cancer in February 2007, it was a very difficult day! My sister met us at the Cancer Center and we both sat in disbelief when the medical oncologist told her there was nothing more they could do for her!  Well my sister’s son was in Afghanistan and he was due back home in August of that year so I spoke privately to the doctor in the other room and told him about mom’s grandson being away and asked if she would still be here when he came home and his answer was “very doubtful.”  What a SHOCK!  It was important to know in case mom had things she needed to do for herself, but WOW, I was not expecting that answer at all!  Mom had not been healthy most of her life, but now this was a time limit put on her life!

All mom said, as we left the office after getting ourselves together for 15 or 20 minutes, was “well I guess we are all washed up.”… that was a saying we had when things were over, done, finished.  Ohhhh.. I told her “we will never be washed up.”  I was supposed to return to work, but I called and told them it was not good news and I had to spend time with mom and could not leave her alone with getting this news.  Work was not very supportive, as they were concerned about getting the work done and I don’t think they ever dealt with life and death issues and so they didn’t know how to deal with it!  I went home later that night and closed up my home, packed and moved into mom’s one-bedroom apartment with her. There I stayed until she passed.

Work is our livelihood and if our employers do not get that we are the caregivers to our parents, we are in trouble in the beginning of the hardest part of our lives….

In Canada, we are fortunate to have Palliative Care (PC) in the home.  With that we have a nurse to draw up the IV meds that need to be given every four hours or more.  The PC physicians come to the home to check the needs of the patient, such as proper bed that the patient can be cared for in an ergonomic situation.  Most of the time we need a hospital bed so that it can be raise and lowered as needed.  They ensure there are enough supports in place to keep the person in their home. 

If the patient cannot go the washroom, then a portable toilet would be required.  My mom suffered from COPD so she would need her areosole machine with prescription nebules added three times a day.  Regular medications for diabetes, blood pressure, anxiety, etc. had to be set out in a weekly docette.  If  bladder or bowel control was an issue, maybe a catheter and/or adult sized diaper had to be used.  People who had limited movement in the bed needed to be moved from side to side and on their back every half hour to eliminate bed sores.  I must say neither parent had anything like that!  Bathing every morning and evening can be a chore, but needs to be done to keep them feeling fresh.  Clean sheets and pyjamas each day sometimes twice a day, according to how much they sweat. 

Everything has to be logged into a book to let each person know how each item that was done, the time and who did it, so that if there were others that helped out, they knew exactly where to pick up for that timeframe. 

I found that the medications that were prescribed for my mom were pretty heavy for her, as she was not the type to take a lot of medication and her behavior changed and she became much like a child in her actions.  Some things were funny and we both laughed, others like at 3 am when she wanted to sit up and chat, (she didn’t like the night time and patients get their time mixed up as they near their destination) when I had to be at work in a few hours.  There were many nights I just sat in a lawn chair next to her bed, so that when she stirred she would know I was right there rather than be on the chesterfield in the front room.  Had I known (understood) that this journey would be her last one, I would have taken time from work to care for her, but when you are right in a situation, you just go with the flow and do what you can.  Respite for one hour on the weekends was also given to us, so that if I needed to do things for myself, I had that time.  A well needed break…

As she progressed I needed to have someone with her on a daily basis so we found daily sitters who did not give medications so I would come home to give her meds then return to work.  If my daughter was in the area, she would do this for me.  My sister gave a few hours on Friday nights when I worked in another clinic, but she would not stay without her husband being there.  Each member of the family has their own gifts and to stay with mom was not one of her’s, so we just had to work around this.  My brother would come to give me an hour during the week.  Everything that was given was readily taken.  Meals were hard because she did not have good swallowing skills now, so soft foods were prepared.  Jello, pudding, ice chips to keep her mouth moist.  We used a lot of  Boost and Ensure which tasted good too!  Mom loved toast and tea, so we had a lot of tea parties! 

This process went on 24 x 7 days a week for three months until May 20th, Mother’s Day, when a room came available in our nearby hospital.  I called my sister, brother and daughter (she was like a daughter to mom) and told them the room is available, “I think mom is ready to go into hospital”, we all agreed.  By 2pm mom and I were on what we thought was the last journey by ambulance to a hospital that we new very well.   By 3 pm she was settled into a lovely room with peach walls, it wasn’t long before we had it looking like home for her.  The nurses were fabulous with her!  The physicians did their investigating and at one point in time, thought she would be a good candidate for a nursing home.  Oh my, that was one of my mother’s wishes “NO NURSING HOME”!  More decisions to make…… 

Stay tuned for more…..

Triple-Negative Breast Cancer in the Bahamas

By: Steve K.

Some months ago a young reporter, Candia Dames, at The Nassau Guardian, the island’s oldest (1844) and most respected newspaper, reported on the fact that scientists had discovered an African BRCA Founder’s Mutation much like the Ashkenazi BRCA Founder’s Mutation I have. I wrote Candia and arranged to meet her July 29th at their headquarters in Nassau. I brought her a copy of the book Positive Results that my daughter and I had written passages in. 

I told her that I felt it is important to get the word out that men can inherit the BRCA mutation and pass it on to their children. Turns out Candia lost her mother to breast cancer when she was 24. We had an extraordinarily intense 30 minute meeting and she “gets it.” She had told me in advance, that her time with me would be very short because she was leaving for two week holiday that night. Surprisingly, as we finished talking, she asked me “how would you like to be on TV tonight?”

I agreed and literally 5 minutes later a cameraman came out and shot Candia interviewing me. I think the interview was about 20 minutes long (I think they cut it to 5 minutes-I wasn’t able to view it..my hotel did not carry the channel…unfortunately, to date, I have been unable to get a copy of the interview. I will put it on the blog if I ever get one). I then introduced Candia to my friend who is very ill and it turns out his son was very much in love with her sister. Nassau is a small place..Lots of cousins marrying cousins over the centuries just like Ashkenazi Jews. Good breeding grounds for BRCA.

I am attaching the article Candia crafted in a remarkably short period of time…There is a minor error at the end, third paragraph from the end  misquoting me-I had said that fathers can pass the mutation on to their sons and/or daughters who in turn can pass it along to their children. But, overall I think she did an excellent job..and folks got the message that dads can carry this mutation and pass it along.

http://www.thenassauguardian.com/nationalreview/breast-cancer

The next morning I was having breakfast at the hotel and I had a copy of the paper on the table..A waitress came over to me and said “hey, that’s you, right?” and she called her friend over who said “I saw you on TV last night and I am glad I did because I am going to speak to my Daddy…His mother and two aunts and Grammy all had breast cancer early and they all gone..keep talkin’, man..this is important..for my daddy and maybe, me”

The waitress said it so genuinely…even if she is the only one to take action, I feel it was worth the effort…My advocacy work, in this country, feels so right and it was so heartening to have a reporter think the information was important enough to put it TV and on page one of the newspaper. But my satisfaction at getting the information out was tempered drastically by the following incident-

Fast forward a couple of months to last weekend at the ASCO Breast Symposium in National Harbor, MD. I was walking through the exhibit hall and I hear someone yelling “hey, Steve”…I turn and it is my friend’s surgeon from the Bahamas. He is an exceptionally nice young man…my guess is late 30’s…hey, that’s young to me…I will be 67 in a few months. I told him that I wanted to go back to the Bahamas and raise awareness and try to get more women counseled and tested for the new BRCA1 African mutation…”no, please don’t do that..” “Why?” “If a Bahamian insurance company finds out that a young woman has the BRCA1 mutation they will drop her coverage and her family, too…as a “pre-existing condition.”

In 2008, our Congress passed the GINA law which helps protect folks here with their health insurance..not so for life insurance…but at least for health there are some protections…albeit not perfect. But no such law exists in the Bahamas and if a young woman wants to test and the insurance company knows her status she can forget about getting her surgery paid for. Of course all genetic mutations are pre-existing…and the insurance companies use the fact that they are to deny women coverage.

The doctor told me that he treats his patients “as if they are positive”…”wow, what if they are not positive?”…”yes, I know, but what is the alternative?” I am afraid I did not have an answer for him. All I know is that teenagers and women in their 20’s, 30’s are being diagnosed with aggressive triple-negative-breast-cancer and it simply breaks my heart that these young women can’t test…can’t have prophylactic risk-reducing breast or gynecologic surgeries that will be covered by insurance..Lives are being lost because of these Neanderthal insurance policies..I think we can assume that there are no previvors doing risk-reducing surgeries and getting the procedures paid for as is the case in the U.S. A Bahamian BRCA1+ woman is denied coverage if the insurance company knows she has the mutation. If the insurance company doesn’t know the woman has to wait until she has breast or ovarian cancer until she has insurance coverage. There is no way a woman, at high-risk, in the Bahamas can try to test and then protect herself if she wants the surgery covered by insurance.  I would say that 99% of the women in the Bahamas would not be able to pay for the surgeries on their own. My daughter faced odds that meant that she faced an approx. 85% risk of getting breast cancer in her lifetime and a separate 45% risk of getting ovarian cancer in their lifetime.  These odds are tragically sad and the policy of “pre-existing” condition denial in the Bahamas is truly pathetic and unjust in my view.

As suggested by my dear friend’s surgeon, I am going to try to join the small, but growing, effort for new legislation in the Bahamas. It seems, according to the surgeon, that the Bahamian insurance companies take things to another pernicious level by not only denying the woman but also refusing coverage for her family. Hopefully, over the next several years we can get the laws to change. In the meantime, my heart aches. So, the waitress, above who wanted her daddy to test better tell him to do it surreptitiously..And if he and she, G-d forbid, have the BRCA1 mutation, what do they do with the information? Increase surveillance, at a high-risk clinic, would be the answer in the U.S. but what about the Bahamas? As I think about I guess it is important for the BRCA information to be made public in the Bahamas. On a practical basis, for sure there are Bahamian legislators who have been touched by early-onset breast or ovarian cancer in their families and they will, most likely, be the ones to champion the legislation. At least that is my dream and I am going to do my best to have the legislation changed.

As an aside, what is obvious to me, out of all this is that contrary to many racist beliefs held in this country that white is superior to black or brown the Human Genome Project of a few years ago has shown that we are all people, almost identical, most of the times, DNA-wise. Eighty percent of BRCA1+ women in the U.S. who have breast cancer have triple-negative breast cancer and the overwhelming majority of Bahamian women who carry the African BRCA1 founders mutation, I am told, also have triple-negative breast cancer. Folks with different histories winding up with a BRCA1 mutation and triple-negative breast cancer. We are one.

all the best,
Steve

p.s. there is a book that came out about a week ago Previvors, Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port that I have not read yet. It looks very interesting and I will post on the board or here when I do.

Welcome to the new Triple Negative Breast Cancer Foundation Blog!

By: Elizabeth Woolfe, Executive Director TNBC Foundation

On September 13^th I attended a book signing and reception in NYC for Nancy Brinker, the founder of Susan G. Komen for the Cure.  Nancy has written a new book, Promise Me: How a Sister’s Love Launched a Global Movement to End Breast Cancer, about how she came to found the organization that in many ways put breast cancer on the map as a cause to be reckoned with, almost 30 years ago (they will celebrate 30 years in 2012).  It is the story of Nancy’s incredibly close relationship with her sister Suzy, and how Suzy’s death from breast cancer in her mid-30s was the catalyst for Nancy in starting an organization we now know as “Komen”.  It’s an inspiring story, and one that many of the advocates in the breast cancer world know well, having witnessed it firsthand.

We have come a long way in what we know and what has been accomplished to fight breast cancer since the 1980s.  The five-year survival rate has gone from 74% when breast cancer is diagnosed before it has spread beyond the breast, to 98% today.  Nearly 75 percent of women over the age of 40 now receive regular mammograms, up from 30 percent in 1980. Science and research have moved exponentially to encompass new ways of conceptualizing breast cancer diagnosis, treatment and survival.  When I attended this year’s ASCO conference in Chicago after a 5-year hiatus, I was astonished at how much of the discussion is now taking place on the genomic level.  As one of our TNBC Foundation board members, Dr. Eric Winer has said, most of the likely advances in treatment will now be as a result of our understanding of the genetic makeup of TNBC (meaning targeted treatments like the highly-touted PARP inhibitors).

But, having recently come on board as the Executive Director of the Triple Negative Breast Cancer Foundation, I know that there is still so much that is unknown.  Even though it was always known that there were women with breast cancers that were “difficult to treat” or “highly aggressive,” TNBC has only recently even been assigned a name and any role in driving research.  Because of the efforts of some dedicated researchers and the founders of the TNBC Foundation, we are finally making progress and are learning more about TNBC.  I have been reading the TNBC forum postings and am inspired by our members and the passion they bring to helping other people while still going through their own struggle.  In their own way, they are each becoming advocates, for themselves and for others, just like Nancy Brinker did 30 years ago.

I welcome you to the new TNBC Foundation blog and invite your comments and postings.  If you are interested in blogging with us, please contact info@tnbcfoundation.org.

Does standard of care for women with TNBC have to be re-examined?

By: Steve K.

I have been actively posting on the TNBC Foundation website for the last 18 months, and I can tell you, that often, a woman has come on the board and said e.g. “I am 36 years old with triple-negative-breast-cancer and had a lumpectomy, followed by chemotherapy and six and a half weeks of radiotherapy.” There is, all too often, no mention of seeing a Certified Genetic Counselor or getting tested for the BRCA mutation. Six years ago, my daughter was such a woman. Although she was diagnosed with breast cancer at a major cancer center her Breast Surgical Oncologist (BSO) made no mention of genetic counseling or the BRCA mutation even though my daughter met all of the hospital’s guidelines for genetic counseling/testing as she was 36 with TNBC, Ashkenazi and had a profound family history of early-onset breast/ovarian cancer on her dad’s (me) side.

As was suggested to her by the BSO she had a quadrantectomy. Basically the quadrant of her breast below her left nipple was removed. It was further recommended that she have four months of chemotherapy followed by 6.5 weeks of radiation therapy. At the time I was on the board of a cancer center and I spoke to the CEO about my daughter’s experience. He strongly suggested that she get tested for the BRCA mutation. She tested BRCA1+ and I tested positive as well. At my daughter’s request, soon after she finished her chemotherapy she asked me to try to find out what significance the BRCA mutation had for her. Five BRCA experts told me the same thing….my daughter was at a high risk for a new primary in her contralateral breast or a recurrence and that she also had a very high risk of getting ovarian cancer.

Armed with this knowledge, and having experienced, what was for her, the devastation of chemotherapy she decided to have risk reducing surgeries. She went back to the same Breast Surgical Oncologist to ask her about having PBMs because of her BRCA mutation the BSO responded “of course, my dear..I understand” and she performed the surgeries. Well, the quadrantectomy compromised the cosmetic result of her PBM.  They had to stretch her skin on her left side and the result has been some puckering.

If everything had been explained to more daughter, originally, I think she may have chosen to have bi-lateral mastectomies as her first choice. To be honest, she may have still opted for a quadrantectomy and perhaps it was the experience of the chemo that pushed her to more risk-reducing surgeries but she was entitled to the information in our view. Turns out that her BSO was a ‘breast conservationist’ who did not believe in mastectomies. Of course she was entitled to her view but she also, in our view, should have presented all the facts to my daughter.

A study, published in 2009, by Dr. Steve Narod’s group at the University of Toronto recommended that all women, even those with no family history of breast/ovarian cancer, under the age of 40 who had triple-negative-breast cancer should be counseled regarding the BRCA mutation with a suggestion to test.  It is also my personal view that every woman with TNBC who has a family history of breast/ovarian history on either parent’s side should receive genetic counseling and possibly test for the BRCA mutation, regardless of how old she is at age of diagnosis
of TNBC.

http://www.ncbi.nlm.nih.gov/pubmed/19298662?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=22

Here is the conclusion from that study-
The prevalence of BRCA1 mutations among young women with triple-negative breast cancer. BMC Cancer. 2009 Mar 19;9:86. Young SR, etal., Women’s College Research Institute, Department of Public Health, The University of Toronto, Toronto, Canada. sryoung37@aol.com

CONCLUSION: Women with early-onset triple-negative breast cancer are candidates for genetic testing for BRCA1, even in the absence of a family history of breast or ovarian cancer.

It seems that 80% of the time when a BRCA1+ woman has breast cancer she has triple-negative-breast-cancer. The converse is not true. 80% of women with TNBC are not BRCA1+ but the link seems to be profound.

The other extremely important benefit of women testing for the BRCA mutation is that, hopefully, the information of a positive result is shared with other family members. The information is extremely important to the women in the family, but also to the men, who may not realize that they are at increased risks for prostate, breast and pancreatic cancers, and perhaps melanoma.  Increased surveillance may save lives. The BRCA+ male, if properly counseled, will now have the important knowledge that he can pass the mutation on to his children, as I did to my daughter.

In all of this, based on a recent large study, perhaps, what is potentially the most life-saving information is the fact that BRCA+ women are at high risk for ovarian cancer and if they have risk-reducing surgeries they drastically reduce their risk of ovarian and breast cancer (if surgeries are done pre-menopausally) but also may benefit markedly in life expectancy.

Association of Risk-Reducing Surgery in BRCA1 or BRCA2 Mutation Carriers With Cancer Risk and Mortality

Susan M. Domchek; et al.  JAMA. 2010;304(9):967-975.

Conclusions  Among a cohort of women with BRCA1 and BRCA2 mutations, the use of risk-reducing mastectomy was associated with a lower risk of breast cancer; risk-reducing salpingo-oophorectomy was associated with a lower risk of ovarian cancer, first diagnosis of breast cancer, all-cause mortality, breast cancer–specific mortality, and ovarian cancer–specific mortality.

Summing up, it is my prayer that more ob/gyns, internists, etc. inform their patients, when appropriate, that genetic counseling should be sought and the breast conservationists should present the whole picture not just their agenda.

A woman told me recently that she was told several years ago…when she was diagnosed with TNBC and asked her physician about mastectomies…His reply, ”that’s unnecessary…why would you want to lose your breasts?” (what woman does?). Turns out she was BRCA1+ and her cancer recurred and she is now in trouble. “Steve, if I knew I was BRCA1+ when this all started I definitely would have had the more extensive risk-reducing surgeries.”

I am not recommending that any woman have any surgery of any kind…I am not a medical professional but I think “standard of care” should include genetic counseling/testing…let women with TNBC hear the story and if they test positive let them decide with the advice of their Breast Medical Oncologist and/or Breast Surgical Oncologist if anything more extensive than a lumpectomy should be considered. Also, a BRCA+ woman should see a gynecologic oncologist to talk about ovarian cancer. In all of this it is essential, in my unprofessional view, that women who are BRCA+ see professionals who are BRCA savvy. They may be tough to find,
but they are out there.

The sad fact is that all too many physicians, in this country, still

-have never heard of the BRCA mutation.
-still are of the mistaken belief that a predisposition to breast/ovarian cancer can only be passed from mother to daughter.
-still tell women that cancer “doesn’t hurt”

I believe that standard of care for a woman with TNBC should in many, many instances, especially with a woman with early onset cancer, include a recommendation to see a Certified Genetic Counselor with a view towards testing.

We all need to become our own advocates…to do research and better understand…That is why I love the TNBC Foundation website. It is there for all of us to learn and support each other.

Steve