BRCA1 monitoring

Sorry, ladies, I didn't really know what topic to use.

I started seeing a new oncologist in September due to insurance changes. She referred me to her hospital's breast care center.

I went for my imaging yesterday and the radiologist for the Breast Care Center told me a monitoring regimen different from what I'd been told before.

I had been told if I didn't want to do the prophylactic double mastectomies, I should have mammograms every six months. Every other time (once a year) I should have a breast MRI.

This radiologist told me that was wrong; that if everything appeared stable I should have alternate, so I'd have a mammogram, six months later have a breast MRI, six months after that a mammogram, etc.

Was anyone else told this? She said there was some concern about excess radiation from all the imaging, but that I could have mammograms twice a year if I insisted. I told her I just wanted to do what was considered the best preventative measure.

Any input?

Thanks.

By DebbieP
Posted November 4, 2009 at 9:57 am
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I'm also BRCA1+ and following the regimen of alternating mammograms and breast MRI every 6 months - I'm seen at Sloan in NYC and that is what they are recommending for me. So far all is fine.
Best,
DebbieP

By monthemon1
Posted November 4, 2009 at 10:10 am
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is removal of the breasts a recommended treatment. i have stage 3c fallopian tube ca. my mom got breast ca at 37 y.o. died at 49 y.o. of mets to lungs.I find out nov 9 if brca1 positive. I will ask my onc but I just wondered what others had done in this situation as far as a mastectomy goes.

By cubsmom
Posted November 4, 2009 at 12:30 pm
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Hi. I had a complete hysterectomy in May 08 for OVCA at the age of 41. My Paternal Grandmother died from metasticized breast cancer to her lungs at 53 (diagnosed at 46). She was my only "relative" with issues, but they tested me anyway and I turned out BRCA-1 positive. I had the double mastectomy in August of this year, and am very glad I did.

Wishing you the best with your results and your decisions. I'm here if you have any questions or want to discuss it with a survivor! Karen

By verlinda
Posted November 4, 2009 at 3:51 pm
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That is one of the recommended alternatives. However, just as removal of the ovaries and uterus doesn't guarantee against peritoneal cancer, removal of the breasts doesn't guarantee you won't get breast cancer. It does reduce your chances to 1 or 2%!

I chose not to do that because I saw my mother and a dear friend suffer from infections that got from breast cancer surgery. I know the odds are greatly against that; these events were nearly 35 years apart. However, two years ago my friend had to have two additional surgeries to treat the infection. It is not a simple surgery, propaganda to the contrary, although it usually goes well.

Since I have no ovaries, most research drops my chances from 80+ percent to around 50%, so I decided to go with the vigilant monitoring and decide whether to go with a double mastectomy if I have breast cancer. My understanding is that even with the BRCA1 mutation, the odds of having cancer in the second breast are around 25%.

I certainly understand why women opt for the mastectomies and support them. At this time in my life, it's not the right decision for me. That could change!

By verlinda
Posted November 4, 2009 at 3:58 pm
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I wanted to add a part 2 to the double mastectomy option. I was post-menopausal when I had ovarian cancer, so that was a factor for me, too. Had I been pre-menopausal that would have made me consider the surgery much more seriously.

If I reach the point of biopsy after biopsy, I'll probably opt for the mastectomies. I had had ovca surgery and chemo and a thyroid cancer scare (no cancer, but had half the thyroid removed after tests and biopsies), and I was absolutely sick of hospitals, doctor's offices and surgery. If there had been a couple of years between the ovca and the BRCA diagnosis, I might have reacted differently.

By Brandi
Posted November 4, 2009 at 11:54 pm
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I was treated in Los Angeles for IIIC Ov Ca at age 34 and found out that I am BRCA 1+ so now I have alot of screenings. I too get a mammogram 1x year and an MRI 1x year so that I get an imaging exam every 6 months. I also have a clinical exam every 6 months so I asked my breast doctor to schedule that in between imaging exams so that I am extra-super covered. She agreed and I am glad. It has worked out so far, fingers crossed!

Best to you all.

By monthemon1
Posted November 5, 2009 at 2:59 am
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Thank you for the input. I find out the answer to BRCA1 + soon. Who knows, maybe I am getting ahead of myself. I will pray about it. And also do more research. But, my sister, with no problems, got implants. So.... cubsmom, sounds like I would rest more easily to go with surgery once chemo done and all esle settled. Implants anyone??

By Elaine1
Posted November 5, 2009 at 11:18 am
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Note: I had genetic testing for BRCA 1 and 2, both negative. However, After a 21/2 year OV stage 3C firstline remission, came down with HER2 Breast cancer, ( an agressive type)...had left breast Lumpectomy, then an infection...thereafter, it's been OK.
Now, I've just found out that my 2729 test for Breast Cancer, which recently escalated, is also used to track OVCA as a companion to the CA-125 test. ( I get both, every 4 wks with my bloodwork for a recent OV recurrence being treated using Doxil.)

In my case, the CA-125 is not to be trusted...always stays in normal range, Now, I know I'm trouble if it moves to double digits. Normal range for me had been 3 to 8 or 9 with no symptoms of recurrence, EVEN when I'm recurring. If it starts to hit 10 through 16, then 20's, I KNOW that's a big, first warning sign.

With the lastest news about the 2729 test used ALSO as an OVCA indicater, I have a long talk coming up with both ONCs to find out which disease I should be worrying about! LOL

Am tolerating Doxil well, after 2 treaments, due for next one soon, and will have some talk-time with my DOCs.

If any of you have similar experiences to mine, re: testing,would love to hear from you.

Elaine

By Shearaw
Posted November 6, 2009 at 9:26 am
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Verlinda, I have been recommended to use the same alternating imaging protocol by my team at Dana-Farber. Double mastectomy was never discussed, probably because I am still dealing with recurrent OvCa, but possibly because of age. It seems that the younger women (40s and below) who are into complete remission have this procedure more often than us "elderly" with some lingering disease.

I am in the same boat as Elaine1 as far as CA125 being a good indicator. For me, a doubling to 15 was matched by the appearance of two enlarged lymph nodes. By the time it had more than doubled again, the two nodes had each more than doubled also. I know that we are each different, and we have to continue to try to find the processes that work for us.

Welcome to Inspire!

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