BRCA testing
I am triple negative and my surgeon wants me to see a genetic counselor for BRCA testing. There is NO family history of breast cancer, although my grandmother did have ovarian cancer. After doing lots of research, I don't think I want to be tested. Everything that I have read seems to point to the conclusion that whether you have the BRCA gene or not, they still cannot predict if you will get the cancer. Why go through all the pain of bilateral mas(I had lumpectomy) and ovary removal if you may/may be at risk. I know of women who had their ovaries out and still got a form of ovarian cancer, so what is the purpose of having your ovaries out?
Thanks for letting me rant, and am I crazy for not being tested?
Comments
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I understand your feelings.
I am not a doctor, but it would seem to me that if you test positive on the BRCA test, that could mean that you should have your ovaries removed, esp based on your family history of ovarian cancer. Ovarian cancer is so stealthy, I'd rather be safe than sorry, and that's why I have decided to get tested. I am also triple negative, with a Grade 3 cancer. My birth mother and her mother had breast cancer and both died when it spread to the bone, and if I test positive, I definitely want a hysterectomy. Do you have children? If you test positive on the BRCA test, it would mean your children need to be aware of their potential risks, but you're right, it feels like a toss-up either way.
If you are worried about pain with a bilateral mastectomy, I'm here to tell you that I had a bilateral in November of 2008 and never had any pain whatsoever. The surgery was only 1.5 hour (I did not have reconstruction), I was home the next afternoon, and I was back at work and driving and feeling great in four days. I know everyone has a different experience, but for me it was no big deal at all. And removing the ovaries these days is no big deal either for most women. I will definitely do so if I test positive on BRCA. I've posted photos of my mastectomy to show women that it's not that bad, and have been interviewed by San Francisco Magazine (April 2008 issue) because of my photography and how I'm spreading the word about the importance of mammograms. Those links are on my profile. - Deborah
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It might depend on whether you have children, especially girls (I know men are also affected).. I am a previvor. I had my tests results last May. Since then I have had a hysterectomy/ooph and a PBM with reconstruction. When they did the PBM they found a precancer. I am so happy I don't have to face this (yes I know I have a low risk).
Other reasons to get the testing would be to find out if you are more likely to have a recourances. Your grandmother is family history. I think this whole issue is quite frightening and it took me months to come to decsions. If you were positive you are much more likly to develop another cancer. Wouldn't it be better to remove the problem and lesson your risks? Just my 2 cents.
I would also suggest you look at the force network: www.faceingourrisk.org. The board is very helpful and I have met a lot of nice women.
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Wow -
I guess if I end up having cancer, I will get tested but I have been avoiding it for insurance reasons. I have 3 boys but 2 sisters. Mom had BC. I do have ovarian problems. Mostly cysts. ddlat - I will be wanting to talk to you for courage if I do end up with BC. I have already decided during my first scare that I would go for bilat mast if I have any kind of BC. Tired of waiting for the other shoe to drop.
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well, there really is a point to being tested. First of all, a family history of ovarian cancer is VERY suspicious for BRCA+. As d5Holmes pointed out, that is a very sneaky disease(and quite awful too-you wouldn't wish it on your worst enemy). There are no really reliable tests for it, and it usually is not found until very late. No, there is no guarentee that if you are BRCA+ you will get it, but if you have your ovaries removed your chances will be greatly reduced. And as far as the ppc you mentioned (the "other" form of OC), that is even more rare. Removing your ovaries by 40 not only reduces your risk of OC, but also greatly reduces your risk of BC.
I assume that you know that triple neg. tends to be very agresssive and fast growing-that is probably the reason your doctor is suggesting the test. Your chances of having it reoccur or having a new primary in the other breast are higher if you are BRCA+.
That said, genetic testing is a very difficult and personal decision. I urge you to consider it, and please be sure you see a Certified Genetic Counselor. This is a specially trained person medically and also trained to help people deal w/ this kind of news. As suggested earlier, you can go to www.facingourrisk.org and get help finding a CGC.
As for the mastectomies-they are difficult emotionally-no doubt about it. But you can have reconstruction, which can be quite natural looking and feeling. I had bilateral mastectomies in Feb. and no regrets. I had a hard time making the decision, and hired a psychologist, but I am soooo relieved now to know how much I have reduced my risk.
If you go to the top of your screen, you can get a members list. Type in CarynRose, who is also triple negative-and read her posts. Then you will understand why testing is so important. Please go to your library and take out "Pretty is What ChangeS" -the true story of a young girl who finds out she is BRCA+. I make all these suggestions b/c it is so important.
Only you can decide-but please get the facts b4 you decide. Good luck. Feel free to send me a pm.
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I recently learned some interesting things about getting one's ovaries out and the risk of ovarian cancer. Turns out, it is VERY important for those of us with a higher cancer risk to have our ovaries taken out by a surgeon who specializes in gynecological cancers, and not just have a "regular" gynecologist do the surgery. The techniques used in our cases are different, and both are more certain to remove ALL of the ovarian and fallopian tissue and do a far more thorough job of examining the tissue removed. I recently met with a Gynecological Oncologist to discuss the procedure, and learned from her that when she is doing ovary removal for healthy women who are BRCA+, in about 10% of cases the pathologist finds microtumors in the ovarian (or fallopian) tissue removed. She thinks this is what explains the issue of "ovarian" cancer in women who've had their ovaries removed already. In her practice, having done about 1,000 Oophectomies, she has had ZERO cases of high-risk women who's ovaries and fallopian tubes were clear having "ovarian" cancer later on. She's convinced that using techniques to be assured of getting all of the tissue out "whole" and very thoroughly examing all tissue following surgery eliminates this risk for currently healthy, high-risk women.
I also have family history of ovarian cancer (and colon, prostate and uterine cancer - with some bc more remotely). Once I had a bc dx, I did get tested. The test came back negative - no known BRCA mutation. This doesn't mean the cancer in my family isn't genetic - just that it is not caused by a known mutation. In a strange way, I wish the test had come back positive, because then my next steps would be more clear. As it is, I'm left sort of "hanging." How high is my recurrence risk? No one can say, really, since we don't know if there is a genetic link or not. The DCIS I had was small, but high grade and ER/PR negative. But the surgeon got very good margins (I had a lumpectomy and rads). So at this point I'm sitting tight with my breasts and looking into getting my ovaries out instead. Oddly, for us ER/PR negative women, ovary removal DOES decrease our risk of bc pretty dramatically - even though tamoxifen and other ovary-suppressing drugs don't. But I'm contemplating having my ovaries out more because of the ovarian cancer history in my family, and the extreme difficulty in finding ovarian cancer early enough. For me, the bc benefit is a nice bonus.
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I hope I do not sound too ignorant; however, I am about to start my chemo tomorrow, 4/30 (AC&T) and have seen all the docs one goes through from diagnose to rads and from that point on. No one has suggested being tested for this. Am I safe in assuming that it is because of my age (Diagnosed on 62nd birthday), and the fact that no one in my entire family has had any cancer of any type ever, for as far back as we can trace. I am post menopausal, but was diagnosed with IDC 1.2 cm right breast, stage 1, grade III, no node involvement. Am I missing something here that I should have done?
Linda
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Hi, Deb
My genetic testing is complete. My family history includes my mother who had ER+ breast cancer 15 years ago, my father who died last spring of an unusually aggressive form of prostate cancer, two of his brothers had breast cancer and my father's mother died of either ovarian or uterine cancer when she was 62 years old. I was definitely a candidate for BRACA testing. Ovarian cancer is very frightening it is called the silent killer because it goes undetected so long. I'm still in shock because my BRACA testing was negative. My oncologist tells me that this means that I am no more likely to get ovarian cancer than the general public and only slightly more likely to get breast cancer again.
Like Eldub there is a part of me that wishes it were positive so that there was a clear plan of action. I'm glad to keep my boobs and it's nice not having surgery ahead of me. I don't think the insurance will cover any more surgery on me at this time.
LRM216
In order for many insurance companies to cover your BRACA testing you have to have a pretty significant history of certain cancers. Breast, ovarian and prostate cancers are included.
That's my two cents and what little information I've gleaned so far about that.
God Bless
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Thanks, Deb - I suppose that's why it's not been pushed by anyone I've seen so far.
Linda
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Of course you're not crazy! Some people do decline to have the test, for one reason or another. I'm BRCA2 so all of my family have the option to be tested-and most have, but a few have also declined.You have done research, and don't want to pursue this avenue-and that's fine. It may be that you'll change your mind in the future, and that too is fine. You're quite correct in saying that prophylactic surgery is not a gurantee that the cancer won't recur. I had a prophylactic hysterctomy, and the second breast removed-and still the cancer came back.
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ElaineD
How did the cancer come back with no tissue? Is that a stupid question? I thought if you remove the breasts and ovaries, you are clear of a reoccurance? i see my doctor today for my BRCA results and am scared out of my mind. I also heard that my risks for colon as well as pancreatic cancer increase but this info is through the internet and we all know how unreliable that is at times. Does anyone know if that is true? I found out today at 2:30 and have so many questions (all written down) but was wondering if you all could give me some additional insight. Hoping it calms me down before I get there (2:30 today)!
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Sadly no-as it's impossible to remove all the breast tissue. By removing the ovaries and remaining breast (I had already had primary cancer in one breast),it reduced the risk of recurrence. But the risk can never be fully eradicated.What you have read is quite correct-the BRCA misprint does increase the risk of other cancers-as you said, often of the pancreas, and melanomas. Genuinely not sure about colon though.
Hope all goes well with the testing.Not sure where you live (I'm in the U.K), but once diagnosed with the misprint you will be monitored-indeed prioritised -if necessary.
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thanks for all the comments and the advise, I am still thinking about it and know that I don't have to make my final decision now.
I'm glad I found this website and all you wonderful ladies, it gives me a nice fuzzy feeling to know you are here
I'm almost to my initial 50 post and won't be limited to how many times a day I can post replies
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"CONCLUSIONS: Women with early-onset triple-negative breast cancer are candidates for genetic testing, EVEN IN THE ABSENCE of a family history of breast or ovarian cancer."
From a recent research paper entitled "The prevalence of BRCA1 mutations among young women with triple-negative breast cancer". (Young meant "below the age of 40" in the study).
http://www.biomedcentral.com/1471-2407/9/86
Deb6563, the preventive surgeries are more than 90% effective ... islets of breast tissue outside of breast, and of ovarian tissue in the peritoneum, might still exist, and that's why the protection isn't 100% perfect, but it is very close.
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Deb: Given your questions I would definitely recommend that you see a genetic counselor and discuss genetic testing. Seeing the counselor does not commit you to anything from what I've been told As I understand it, you would go over the pros and cons and types of genetic testing with the genetic counselor and this would help you decide whether or not you want to do the genetic testing. If you decide you want to go ahead with it you would have to go back to your physician who would then send a blood sample to Myriad laboratories along with the reasons the testing is being recommended. Myriad would then confirm whether or not your insurance would cover the appropriate level of testing and get back to you if you didn't have coverage so you could decide if you wanted to foot the bill. (There are at least two tests they perform, one less extensive and less expensive than the other).
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I want to thank you for your bravery. my BRCA1 was positive and I have had three breast cancer surgeries.Reading your story I am more convinced to have the ovary and uterus removed next year since I am going thru chemo now. At 60 with two children , my 23 year old daughter will get tested next month, thanks again and God bless you
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This is just my opinion & my story. My mother was diagnosed 20 years ago when she was only 38 with Stage 4 breast cancer. A few years ago, my sister was diagnosed with stage one breast cancer at the age of 34. My sister did do the BRCA1 & BRCA 2 testing, but she was negative. I am having preventative surgery in 2 days...double mastectomy with immediate reconstruction (DIEP Flap). The oncologist (who also is my sister's doc) said that it was up to me whether I wanted to get tested or not. But he said that regardless, because of such strong family history, I could be negative, but still be at high risk. The testing isn't cheap. And seeing how my risk is still high, I opted not to have the testing done. Good luck in whatever you do!
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I hope the surgeries went well, please keep us informed about the risks and whatever can prepare us next time. What I didnt mention before was that I lost two sisters to BC, one was buried last week and the younger one at 33 last year. And another thing I was advised to keep stress out of my life especially the work place. Good luck to you and everyone dealing with BC, remember to question your doctors well, do the research before you go under the knife.
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My BRCA testing came back negative. My mother who is triple negative has not been tested. I have five sisters and I am the first to get breast cancer...but was not triple negative.
My mother's great aunt died of breast cancer and now I found out her daughter was diagnosed with breast cancer. I have done genealogy research on family names and have a lot of German surnames on this side of the family ( Speegle, Eppler, Lentz, Muller, Helsey, Cobb)....so who knows if there is a gene. Also noticed that my great-great grandmother's sister had two daughters die at age 39 years after her 3rd child was sick over a few years and another one died at 33 years. So I am trying to find out more regarding what these two young women have died of.
Anyway, should I get my mother to get tested? I can be negative but maybe one of my sisters could be positive....they will not know if my mother is not tested.....am I correct?
Anyway, I got tested for me and my two daughters who are in their 20's.
Any further information on this would be appreciated. I had to call my oncologist after two months because no one called me with the results.
Hugs,
Terry
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I READ THAT YOU HAD A HYSTERECTOMOY. I RECENTLY WENT THROUGH PBM WITH TISSUE EXPANDERS AND AM LOOKING TO PERFORM THE NEXT SURGERY FOR THE OVARIES. MY CONCERN IS WHETER OR NOT YOU CAN TAKE HOROMONE REPLACEMENT THEARPY FOR A SHORT TERM. IS THIS OK. HOW DOES IT INCREASE YOUR RISK OF BREAST CANCER IF YOU ALREADY HAD A MASECTOMY? PLEASE RESPOND. THANKS
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Terry, it may be the best to work with a certified Genetic Counselor rather than an oncologist. The oncologist's world is too narrowly focused on cancer, and they aren't really trained on interpreting test results in the full context of family patterns. And your oncologist didn't even care about your test in the first place!
If your mother has a mutation, then you would know that your cancer had nothing to do with the family history of cancer in your mother and her relatives. it would also mean that your daughters have nothing to worry. And also, your sisters could then be tested just for the one specific mutation, which is easier and cheaper. But if your mother's test is negative, then will remain a bit of uncertainty about the whole situation. The most probable answer would be that there is no genetic risk there at all. But there is a small chance that your family has one of very rare mutations which could not be detected by standart tests. So some reason to worry might still be there. A GC would be able to evaluate these chances.
By the way facingourrisk.org site could help you find local GCs.
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I have just recently had the BRAC2 gene test and have it. I am in two minds about what to do, to have a masectomy or not, I have already had 2 kids and if anyone has had this done or has any information it would be greatly appreciated.
Renee
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berrynice80, I am brca2+also. I found out last year and have had my ovaries out and a mastectomy. My advice to you? Breathe. Now, breathe again. It is going to be OK. May not feel like it, but you are stronger than you think.
Were you tested with a Certified Genetics Counselor? If not, I would strongly urge you to get one. I may be able to help you find one if you want. If you already have one, she should be a great source of info for you. And what you really need now is info. I also recommend checking out www.facingourrisk.org , a site devoted to hereditary cancer. You will find many people in the same boat as you.
The big thing is, unless you have a cancer right now, you do not need to rush. Info is your best friend. Remember, this is a major trauma in your life, and you should not make decisions when you are afraid-make them in strength.
Please PM me if you have any specifics tyou would like to ask or share.
gentle hugs,
Alice
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