High risk breast surgeon undergoes PBM...
Fascinating article on two medical doctors who are high risk and how they chose to deal with their risk.
Marcia
Comments
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Very interesting article from a publication that I read frequently when I lived in DC. It also made me stop and pause before concluding that the surgeon may have over reacted. As she stated, she might not be BRCA1 or 2 but those are the genes currently known. It's very sobering to realize that we make our decisions on the best info available at the time and much of that info can change and change quickly.
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This article is great and I got very emotional reading it. I tested brca negative but my family history was like this doctor's. Stanford genetic department felt I might have a mutation not yet discovered but advised me to do high surveillance. My gut wanted the prophys and that's what I did. There were doctors who thought I was overreacting, others encouraged the BMX. In the end, I had to make that choice and I'm damn glad I did. I really felt this article. Thanks for the post.
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Good article. There were a number of things in there that made me feel better about my decision to do bilats (like the three young women who recurred in their 'good' breast)...and about my chances of beating my cancer.
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Wow. I'm little confused about the kind of bc her mother had the second time. It was stage III right? But then there were the comments about metastic bc and "wanting 10 more years". Her treatment plan seemed very stage III typical. And it was some aggressive type but they didn't specify. I'm guessing maybe triple negative? Does it run more in families?
She had a mother with post-menapausal bc and probably a great aunt. That is not a strong family history. That's what my kids have and I certainly don't think they should have prophlactic mastectomies. Of course, the missing part of this story is what kind of bc her mom had the second time, that could make a difference. And was it the same kind the great aunt had? Missing pieces might make this story make more sense. I am surprised her insurance paid for it, but I suppose one of her collegues could make the arguement for her.
It is very interesting to me when doctors make decisions that aren't really grounded in evidence based medicine.Sort of like when Dr. Weiss had bc (she's the radiation oncologist who runs this site) and she choose mastectomy with reconstruction rather than breast conserving surgery and radiation. Makes you go "hmm".
If Tricare is paying for alternating MRIs and mammograms, I'm going to have to have a talk with my HMO which is only going for mammograms. Oh wait, that's standard of care, breast MRIs haven't been shown to have a greater benefit than risk. Silly me, I thought that was the kind of thing we made health care decisions based on. No wonder heath care costs are skyrocketing. So our tax dollars paid $80000 for non-medically necessary surgery.
Just my humble opinion. I know there are many others.
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I'm BRCA negative, too. I have/had two sisters that had breast cancer. One died in February from breast cancer. So, not being BRCA positive doesn't mean that you can't have a "strong family history" for breast cancer.
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So glad you all found it empowering and informative.
Nurse Ann, I tested BRCA- in 2002 based on family history and a BRCA + cousin..and was diagnosed stage 2B in 2004,retested (full sequencing)as was my stage 4 mom ,and it turns out despite awful family history I am uniformative negative as she was - also...
But the BRCA - status back in 2002 prevented me from having PBMs as it was not An "option" with insurers unless one was BRCA+... so glad things have changed in that regard! -
This surgeon made her decision on her reasonable fear of the unknown and the "yet to be discovered". She did not want to gamble her life only to find that some development would totally invalidate common practice or "scientific method".
When I was diagnosed, my treatment followed the current standard which they now question. As I said in my prior post, we do the best we can with the information that we have. I would also have to say that about twice a day, the Stage IV group welcomes 2 new members. Many of these women were Stage 0, 1, or 2 at diagnosis. Some were under the "impression" that they were "cancer free" for 10, 15, or even 21 years.
An Onc or BS is very aware of what can happen and how often it happens and did not want to risk that.
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My statement about the doctor not having a strong family history wasn't related to her BRCA status, it was related to the fact that she had a mother with postmenopausal bc and an great aunt who we don't have any medical information on. That's only one first degree relative and the postmenapausal status makes it a weaker genetic possibility. Two sisters is a much stronger genetic link.
An Onc or BS is aware of what can happen, but also has a very skewed view of what can happen. Sort of like reading this website can give us! If this doctor had had any indication of cancer or precancerous conditions I would have felt differently. As it is, I think she acted out of unjustified fear. But I do recognize that the article didn't give us all the medical informatio needed to understand the situation.
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I thought even if you just have one first degree relative with breast cancer, your risk is double or triple that of the general population (so instead of 1 out of 8, it would be 2 or 3 out of 8, right?)
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If my memory serves, the surgeon was also reacting to her mothers second breast cancer and the amount of time it went undetected. As ILC ladies know, testing can be very unreliable. This surgeon did not want to bet her life on the reliability of these tests.
I went into my mastectomy after being told that I had no node involvement based on the testing - as you can see from my bio, the tests were wrong. I should also note that I had annual mammograms.
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I, too, tested negative for BRCA1 and BRCA2, yet there I was with bc. Oncologist was surprised... I opted for bilat mx altho I only had cancer in one breast (against the advice of everyone I knew, I might add)... Pathology came back with 2 more areas of cancer....Tested negative, only one spot showed up on mammogram, had 2 more that I would have been dealing with in the near future if I'd only had the lumpectomy. . Did I want to go thru that again??? DUH........yep, I made the right decision!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We should not condem anyone for having a mx, whether they have bc or not. It's a decision we all have to make for ourselves. My mother died of ovarian cancer. Thirty yrs later I had an oopherectomy. Was that wrong? I think not!
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If a person has any indication of cancer, however small, I think it becomes entirely their decision on how to proceed with treatment. I just think this doctor, despite her medical background, overreacted. I had no risk factors. None. In fact, when new risk factors are announced it always is "look, another risk factor I didn't have." Yet I have bc. Should all women have mastectomies? All women who tend toward obsessive thinking? All women who have any relative with cancer even though the link is not strong? Where do we draw the line? And who pays? When does it become elective surgery?
mitkita I am sorry for your loss.
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I had a really strong reaction to this too.
The woman never even had a lump or a funky mamm, people!
Having a post-menopausal parent with a history of BC (especially one who took hormone replacement therapy) does NOT make you high risk.
When I was diagnosed, I had a long talk with my onc, since my brother had also had prostate cancer, and my MIL died of BC (at 80). My daughter is at normal risk.
And so is this woman. Would we have spent $100,000 on a woman with normal risk if she weren't a breast surgeon -- don't forget that Tricare is our tax dollars, ladies.
Think of all the MRIs for women who are actually at high-risk we could have paid for.
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Yes, but you are basing your comment on "what is currently known and currently disseminated". All that could go out the window in two years. The difference between what you are saying and what others have posted is that not all of us believe this stuff. If that seems harsh to Oncology, consider my earlier remarks. When I was diagnosed, it was common to give AC and Paclitaxol to women with high estrogen/progesterone - I was stage III then. Now (5 years later) they realize that this in not effective and women like me would have been better off by going on AI's immediately. Chemo for high estrogen is not effective even the dose dense chemo that I had. Oh well, it's just my life - who cares but me.
It would not have mattered what Onc or hospital I went to 5 years ago - this was common practice. Also, after re-reading your post, you seem to put a lot of trust in mammograms. I had one every year and ended up with a large tumor and heavy node involvement. These tests (Pet Scans, mammo's, CT Scans are not effective for many people but that's a whole different story. If you are up for some really scarry reading, go to the Stage IV forum and find out how many women went from Stage 0, 1, 2, 3 under the care of Oncologists. Both mother and daughter in this article would like to avoid this although it may be too late for mom.
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THANK YOU soooo much for this article. When my mom was diagnoised 22 years ago with BC (i was 28) I went to her surgeon and said I would like PBMX. He rightly said that I was over reacting. So over the years I had several biopsies, etc. the last came back ALH (precancerous) - my new surgeon said that PBMX was an option. My mother was tested - BRCA negative, but I also had a aunt and cousin that died from BC, genetic counselor said there was probably a unknown mutation. The surgeon in the article said, "it wasn't just cancer she feared, waiting for test results is torture." SO TRUE. I felt relieved after my surgery, even though many were against it (including my mother, which I can't understand), but now that it is a year behind me - I have had many people, including doctor friends say I made a good choice. As the surgeon in the article stated, "I don't feel brave - I feel lucky." I too feel lucky!! The choice may not be right for everyone, but it was for me.
Hugs to everyone, Valerie
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If I only knew what I know now. I would of had my breasts removed. If I had know my dense breasts were too dense for a mammo to see any cancer!! MY 8CM tumor!!! never seen by the mammo... I found it and the ultra sound could see it!!! Faithful to get one every year!!! The docs never told me dense breasts are 6 x more likely to get cancer!!! This is our body we should know what is going on!!! Areyoudense.org is helping women get laws passed in the their states so WE all know what the risks of DENSE breasts are!!! I would of gladly had them removed before all of this nightmare.. As far as I am concerned.. it should not matter what the history is if a woman wants something removed ... it is their decision not anyone elses... they are the one who have to live with it!!! I would rather be cancer free with no breasts!!! any day...
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TOWNY: AMEN, SISTER
! ! ! ! ! ! I've never heard that about dense breasts and I had them. I knew I had calcifications for a couple yrs, but no one suggested cancer until they formed their cluster. I had the 'cancer free' one removed too and I don't regret it. If I had to do it again, I'd do it all the same! If anyone can avoid bc, I say, DO IT!!!
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Thanks to all for sharing your thoughts. I am getting more informed every day! Being our own best advocate is what it is about. When I was diagnosed a non-dedicated breast surgeon just wasn't big on telling be to do Bi Mx, and I tested positive!. She even said during an exam "we spent years perfecting breast conservation surgeries and now people are just getting these Bi Mx's without much research"...paraphrasing here...then I spoke with dedicated Breast Cancer Surgeon's and THREE said that it was the choice I should make...I was BRCA pos and was surprised the one non dedicated surgeon didn't give the same advice. We have come a long way! THANK God we have more knowledge today than even a few years ago.
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MRDRN,
You must speak with a Certified Genetics Counselor if you have not already done so. They are the most up to date on explaining what your particular mutation (ex:185 del AG) means for you. If you have not already done so please log onto
FORCE www.facingourrisk.org
for the most current information regarding BRCA ,
Warmly,
Marcia
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Marcia - Thanks for posting this. The bottom line is that each individual must be able to decide for themself how much risk they are willing to face. No doctor can tell you absolutely what your risk is and they will not be the one to go through the treatments if necessary. It is easy for others to learn of someone else's circumstances and say "I would never do that" or "I would definitely do that" and you can certainly follow that decision for yourself but you can not impose that decision on someone else. There is no one answer to this question which makes the only right decision the one made by the patient.
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My younger sister died of invasive ductile carcinoma in both breast it had mets to her spine, liver and pelvis she lived one year past her diagnosis. I had an aunt, uncle--- brother and sister and their mom my grandma die of breast cancer. My geneticist told me that a male relative is most likely a genetic mutation, but I am not BRACA pos. I chose prophylactic mastectomy with alloderm implants at the same time, no expanders. I also had an atypical lobular hyperplasia biopsy so that is what I decided. Sometimes I think wow what the f was I thinking.... I can't erase fate from my life. Should I remove every potential body part that is susceptible to cancer? Ovaries, uterus, cervix, colon I guess the body parts I don't need I'll have them removed--- my boobs I don't need, ovaries, uterus no need
But the pancreas you need so I don't know---- it seems like the useless body organs are breeders for cancer. Of course the ovaries and uterus you need if you want children. I guess we all do what we can to be as healthy as we can but we don't know God's plan, we can only walk with faith, and when my sister passed she was happy I know she was going somewhere beautiful and natural as she told me. She wasn't afraid she was innocent going to her new home. I won't fight death when it is my time, as I know dying is like being born. It's a new normal without my sister and it must be a new normal for her. I feel her trying to tell me not to get twisted and mired in the events of life... She is trying to tell me how wonderful it is where she is and it's our true home and we will see each other soon and we will be together forever, she wants me to have faith in the fact that she will be there for me when it is my time to die, and she is ok we will have eternity together. -
thatsvanity - very touching about your sister. I too had a strong family history, BRCA negative. When I got a diagnosis of atypical lobular hyperplasia I too decided prophylactic mastectomies. There aren't too many of us that have chosen this that aren't BRCA positive, but there are some.
Hugs, Valerie
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Don't forget - if you do PBMX - before any cancer is detected, you can avoid sentinol node biopsy. I had BMX no reconstruction for widespread DCIS on one side - and I'd had multiple biopsies on the other - but as of the surgery, no cancer. They took seven lymph nodes - all negative on the cancer side - and that' s the side that's still still bothering me. I have chest edema - pain that runs down my arm into my hand- pain in my shoulder. It's hard to do my activities that I love - guitar, bicyling - because my shoulder and arm hurt after about fifteen minutes. Even typing bothers me after a bit. And I'm at risk for lymphedema. The non-cancer side has come along just fine. A few twitches here and there. If I'd known what I know now, the second time they found calcifications in the "non-cancerous" breast, I'd have had them both off. I have no problem with the way I look - nor does my husband - or anyone else. My only regret is the complications resulting from removal of the lymph nodes.
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alexandria58 - so sorry you have to deal with pain - will it get better with time? I hope. I feel blessed to have had my PBMX before I got cancer - you are right I did not have to have any nodes taken.
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I'm hoping that the pain will get better with time, I'm only four months out - but I have the risk for lymphedema for the rest of my life. Still my doctor is urging me to get back to activities I love even if there's pain. I come back to this site, though, not only for support for the post surgery problems, but to remind myself that I am, also, very very lucky. the nodes were negative. It was only widespread DCIS, and the doctor got good margins. So many wonderful women here have to cope with so much more than I do.
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