A Five Part Series from TTBOOK!

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BRCA gene - Listener Letters

Program 08-11-02-A

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In the first part of our recent program DNA AND DISCOVERY, Jessica Queller told Anne Strainchamps why she decided to have a double mastectomy after she tested positive for the breast cancer gene and her mother died of ovarian cancer. These are some of the letters from listeners who heard that conversation.

Jessica Queller, Pretty is What Changes: Impossible Choices, the Breast Cancer Gene, and How I Defied My Destiny (Spiegel & Grau)

Hello.

I just heard the interview with the author of "Pretty Is What Changes."

I was diagnosed last April with breast cancer in my right breast. After a lumpectomy, my surgeon recommended a mastectomy because the cancer had spread. Because of a family history of breast cancer, my age (60), and the fact I am Her-2 positive (+3), I chose to have both breasts removed since the cancer was aggressive and would probably return in my left breast.

I chose to not have reconstructive surgery and live happily without breasts. My scars have healed nicely. I don't have to wear a bra, and what may seem odd to many women is that I feel a sense of freedom over my choice.

I finished chemotherapy in late September and just started Herceptin treatments. Now I'm listening to your interview with the young woman about patients who have a protein that's resistance to Herceptin. What amazing young women.

Thank you for your program.
Kristina
Albuquerque, NM

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Thank you for this segment. I thought i heard an invitation to comment.

I chose, at age 37, much like Ms Queller did, except that I already had breast cancer. My doctors delayed mammograms and downplayed my requests for evaluation because they thought I was "too young and healthy", and it was "not statistically likely". When they did find it, the cancer was advanced and required a mastectomy and chemotherapy. The next year, following a divorce, I had a second
mastectomy. I like feeling balanced, and I did not like the cystic
tissue in the remaining breast. For financial and other reasons, I did not bother with reconstruction, or prosthesis, and I have not regretted that sad decision, made a decade ago.

I have regretted that I chose to poison my body with chemotherapy.
For that process damaged my body so deeply I have not yet fully recovered. Again, more thorough understanding of existing but
undisclosed information, could have made a difference. Someday I
would like to make available my experience with celiac disorder and the misunderstandings which occurred because care persons were unaware of this genetic anomaly and the consequences of not knowing or ignoring it.

Things are not always what they appear!

More moving to me than the cause of cancer is the issue of patenting genes. It seems to me that breast cancer is a rather popular and
"titillating disease". But there are many other conditions that are
also dangerous. The opportunity to access information (and treatment
options) by which one may make decisions about how to care for one's
body is a signifier of an advanced humane and intelligent society.
There is more lost than flesh when respect for individual persons is replaced by the idea of "ownership".

Thank you for such interesting shows. I am grateful that I can access them by means other than radio, that I am still on the planet.

How amazing and complex is the world we (briefly) inhabit!

Thanks again for the chance to comment.

Linda
Montana

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I am responding to the interview with Jessica Queller - and I have been in her position. I tested positive for a BRCA 1 mutation in April 2005 and had a bilateral prophylactic mastectomy in June of 2006. It was an emotionally agonizing year - simply put- I don't think we are meant to voluntarily sacrifice part of our own body. However, I also think that having the surgery is one of the best decisions I ever made. When I woke up from the anesthesia the burden and fear that I had carried consciously and subconsciously since I was six and saw my mother's jagged scar and concave chest (a result of her first mastectomy) was gone. And my new body - though numb from nerve damage as a result of the surgery - is beautiful.

I am absolutely heart-broken to hear Jessica's story and very torn in the way I feel about the actions she took to prevent what could have been breast cancer. I don't even want to imagine the pain and suffering that she watched her Mother endure throughout her battle with cancer, and I understand her wish to avoid it at all costs. However, I think that to operate out of fear when it comes to the "possibility" that you may get cancer is in my mind abandonment of your body.

Last summer, just before my 30th birthday, I was diagnosed with endocervical adenocarcinoma (cervical cancer). With barely a second thought I listened to my doctor and immediately had surgery to remove a portion of my cervix. The results came back in my favor saying that they had removed it all, but three months later it had returned. My doctor insisted on another surgery but everything in my being told me not to do it. I wanted to have children which would have still been possible but with far more potential complications, and what was so obvious to me was that it didn't work the first time, the surgery was not getting to the root of the problem, and who's to say that it's not going to come back again. At this point I told my doctor that I was not going to have the surgery and that I was going to take a natural approach to healing myself and if that didn't work in a matter of 4-6 weeks, I would consider surgery again. He said "Bridget, this is cancer, this is serious...no mind, spirit, nothing is going to cure your cancer." I told him that I wouldn't be neglectful, but that this was something I had to try. Through much research, treatment from a Naprapath in Chicago, Castor oil, complete change in diet, and daily meditation, my cancer was gone in a matter of five weeks. So you may see why I find it absolutely astonishing that someone would willingly mutilate their bodies before they were even diagnosed with cancer, when I truly believe that it's not surgery that cures it. It's you.

Thanks for your great programming,

Bridget
Chicago, IL

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My story is different from Jessica's as I tested negative for BRCA. However, my mother, grandmother, great grandmother and aunt all died from breast cancer. I found a lump in August of this year, was diagnosed with cancer and made the decision to have a double mastectomy with a large part of that decision based on my family history. Our genetic counselor, Peter Levonion, at Gundersen Lutheran in LaCrosse, WI was a large part of that decision, as he told us that there are probably many other genes that have not yet been identified. He didn't really expect my BRCA to come back positive, as there was no ovarian cancer in our family.
I am 52 years old, am an RN working in public health and community/home care, so have been educated in this field. My husband is a funeral director, so we have seen firsthand how this cancer can turn out eventually. It was not a hard decision when faced with the probability of breast cancer recurring in the other breast if we had decided on lumpectomy with radiation. As it turned out, there was a previously undiagnosed tumor in the supposedly unaffected breast, so now we know without a doubt that the right choice was made. The diagnosed cancer was an infiltrating ductal carcinoma, the surprise cancer was a tubular carcinoma.
I have 5 sisters and 2 daughters, so my disease has increased their risk of developing breast cancer.
It has been 5 weeks since my mastectomies. It has not been a cake walk but each day is easier and I expect to be back working part time this coming week. Reconstruction is ongoing, the final surgery will be 2 months from the last injection into the enhancers.
I enjoy listening to WPR and I also like to tell my story, and if it can help any other woman to save her life, I will shout it from the rooftops.
Thank you.
Laurie
Waukon, IA

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Your show on "preventive" mastectomy…...made me cry with rage. Why did you not mention that only ten percent of breast cancers can be predicted with the BRAC test? Instead your show presents another hopeful strong image of a woman "beating the disease" (with her bare hands so to speak) and getting a lovely pair of breasts that she adores in the bargain.
From whence comes this (apparent) increasing need to convince everyone that cancer treatments are so wonderful? In fact, over 40,000 American women die from breast cancer every year...and nearly 600,000 American people died from cancer last year. Yet her you are with another upbeat story about the rare few. Never mentioning that hormonally driven cancers are on the rise, never mentioning that we are doing essentially nothing toward real prevention of this disease. 90% of breast cancers are caused by our environment, and cannot be predicted or avoided as described in your show. Millions of women are having their breasts amputated every year, and if they get reconstructions, it is not like what you describe on your show. And even after going thru the amputation, the radiation, and the chemo (which cannot be described in their awfulness) many of these women die of cancer anyway. The reality of cancer for most women is just not like it the way you describe it in your show.

I believe that you could be serving the public better with a far more important line of thought, namely: Why have cancer rates more than tripled since l930? And why, instead of trying to identify cause for REAL PREVENTION have we resorted to convincing the general public that is really OK, even NICE to remove your breasts...so you won't have to worry. This is the 2nd show in the last month that I have heard on NPR about the 10% of women who have the BRAC gene. Why aren't you talking about the fate of the other 90%?
Why aren't you talking about the continued rise of all cancers, the continued wildly expensive cost of cancer, and its contribution to our failing health care system?

1 of 2 American men and 1 of 3 American women will be treated for a life-threatening form of cancer. This is an epidemic that deserves to called out for what it is. Until we stop the cause. Until we find a cure.

I have written an essay on this. Would you care to read it?

best regards,
carol

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Hello,

Thank you for your story on the BRCA genes. I was diagnosed with stage IIIC ovarian cancer in June, 2005 (at age 56). Since my maternal aunt died of it at age 50 and her daughter died of breast cancer at age 50 (the young age was significant), my insurance was willing to pay for the test for me. My result was the most annoying of all: inconclusive. I have a variation on my BRCA 2 gene but it is not the standard variation. There is one lab in the US (in Utah) that does this testing. They had 8 or 9 other people with the same variation but apparently none of them were related. The lab volunteered to test my 85-year-old mother for free. She also has the variation but has never had cancer.

BTW, I went through the standard surgery and chemo plus I did some extra consolidation chemo and I remain cancer-free three years later. (The statistical prognosis for my stage and type of cancer is a 30% five-year survival rate so I feel I am doing well.)

Again, thank you for covering this topic.

Ladonna

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The urge to create life is a strong one and arrives to each of us in such different, sometimes miraculous ways. Your guest’s decision to have a baby before having surgery is a testament to the force of life. While some women (and men) will never be challenged to make such a difficult decision, behind each decision is hopefully as unique and optimistic a story as your guest’s. The best of luck to her!
Tim

return to DNA AND DISCOVERY

Distribution dates: week of 11/02/2008 - hour 1 click HERE for timings and cues

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