ANYBODY DECIDED NOT TO DO BRCA TESTING

corey50 · September 2014

Hello, Everyone,

I was just wondering if there is anybody out there that has decided not to do the BRCA testing after already being diagnosed with breast cancer. I was diagnosed 9 years ago (47 years old) with stage 1 IDC, had lumpectomy, 4 rounds of chemo and radiation. the BRCA test was not recommended by my dr's when I asked about it, I was told that most bc's are not from a genetic mutation and that if it were you would see lots of it in one family and at that time I was the only one in my family that had been diagnosed. I have 2 sisters, my mother was still alive, 2 nieces and several female cousins as well as aunts and to my knowledge none had b/c. So I went to the genetic counselor but decided at that time not to have the testing done. 6 months ago one of my nieces, 37 years old, was dx with stage 1, had chemo (oncotype 19) and now doing rads. Her oncologist and surgeon strongly suggested because of her age that she meet with the genetic counselor, she did and basically had the test the same day. She is now awaiting her results. I feel like for me this was behind me but now if her test is positive it will mean that I could be too. Even if its negative, which I pray to God for her sake it is, I know I should have the test too to find out about ovarian cancer risk. Has anybody else decided not to have the test done. I have a daughter who is 20 and I worry constantly that I could have passed something on to her, and I know having this information is vital in making screening decisions (even though I could be pos and she could be neg) I could have my ovaries removed in a heartbeat (chemo put me into menopause) but I would have a very hard time deciding to have a prophylactic mastectomy. It seems to me that so many women just have this test routinely done now, I can't be the only one that feels this information would be hard to handle.

Thanks for sharing your stories. God bless and good health to us all.

joannstar · September 2014

Knowledge is power

In my opinion, if the test is offered I would take it. Yes, the information would be difficult. My onc told me that if I was positive, I would be looking at removing the ovaries and a double mastectomy, and thankfully it was negative (both times--a new gene was tested the 2nd time). I felt that it was only fair to be fore-warned so that I could inform my niece and sister (I don't have any children).

There is so much uncertainty with this disease--the waiting for results each appointment is so hard.

I want to be not only a survivor but also a THRIVER!

Hugs,

JoAnn

ComfortablyNumb · September 2014

I chose to be tested

I chose to be tested after my first dx, because I was only 30 and didn't have children yet, I felt if it was positive I wanted to be aware before I have any. I was also tested for other cancers because my father and aunt both died at a fairly young age of colon cancer. I was just told today that there are absolutely no genetic markers for any kind of cancer.

I don't know if I consider it good news or not honestly, on one hand it does mean I don't have to stress as much about colon cancer on top of the cancer I already have..but on the other hand, it would have at least been an answer, some sort of explanation as to why this happened to me.

Alexandra · September 2014

BRCA testing

I am from ovarian board. I was diagnosed with stage 3C ovarian cancer in May 2012. I had BRCA testing done 1 month later, mostly for the sake of my daughter. I turned out BRCA1 positive. I already had total hysterectomy because of ovarian cancer, I opted out of preventative mastectomy and chose "active surveillance" (bi-annual mammo + annual breast MRI). Latest MRI was abnormal, biopsy came back inconclusive but I left it alone, because ovarian cancer has recurred and "something" in the breast is currently not the biggest priority for me.

I assumed that my gene mutation came from my mother's side, because 15 years ago she had in situ BC. My mom got tested, and she is BRCA negative and cancer-free. Which means that BRCA gene was from my father's family. My daughter had 50% risk of being BRCA1+ but fortunately she tested BRCA negative.

I strongly recommend getting tested and if god forbid you're positive, take your ovaries and fallopian tubes out asap.

camul · September 2014

i did not have it on the first go round.

8+ years later when dx with mets, it was done. I am negative. My grandmother died of bc, my mom had Malenoma and later head and neck which is what she ultimately passed from. I was 44 at first dx, 2 cousins have had bc, they like me. were 49 and 38 at dx. We all tested neg. for brca 1 & 2. Yesterday I met w/genectic counselors. They said in the last 2 years or so, the brca tests have become more comprehensive, so they are reviewing mine. We have what he considers an extra ordinary amount of cancers in our family, on my moms side, I have a son, and a sisters son, and brothers son, who all have had childhood onsets of , liver, non hodgekin lymphoma, and my son with a blood cancer, as welll as me with cervival cancer at 21-22, bc, a brother at 53 with bladder, a brother dx at 60 with cll and now hr is also fightin small cell lymphoma. and my mom was 53 when dx withmalenoma , her brother died of lung cancer at 55 dx at 53, another bro at 58 w/bladder, her sister at 59 with colon, another sister at 63 w/liver, and 2 more rothers with lung and proste in 70's. Onr of my cousins sons at 8 also had liver cancer. So, we qualify for a study which I agreed to yesterday where they will do genetic testing. Hr was pretty excited as a researcher with my family history and already knew what 3 tests he wanted to do first. It wont help me, but it certainly could help any of my neices and nephews mainly, and possibly cousins children. Main way is if I am positive on any of the genetic.markers, then they would take blood from any family.members diagnosed and ins would most likely cover genome testing which whould let them see what treatments work before just doing hit and miss using random chemos. After being on so many chemos myself over a 2 1/2 year period, none of which were effective, I would love it if anyone else dx could forego that. Another benefit for family is if ther is a positive marker, they would automatically test them if the have any kind of cancer and it could speed up the process and they , knowing we have that possibility, would get checked out quicker if anything does come up. I still think it is all experimental but if I can doanything that would make it easier, I am willing. It is then up to them if they want to pursue it further. Best to you. Carol

cati0314 · September 2014

genetic testing

After being diagnosed with locally advanced IDC my doctors ordered genetic testing. The surgeon didn't think I would be positive but I was for BRCA1. Result was bilateral, rather than the single mastectomy my first doctor recommended. Also had radical hysterectomy. My daughters tested negative for the gene mutation. I'm glad I sought out 2nd opinion and went with the new team of doctors.

New Flower · September 2014

cati0314 said:
genetic testing
After being diagnosed with locally advanced IDC my doctors ordered genetic testing. The surgeon didn't think I would be positive but I was for BRCA1. Result was bilateral, rather than the single mastectomy my first doctor recommended. Also had radical hysterectomy. My daughters tested negative for the gene mutation. I'm glad I sought out 2nd opinion and went with the new team of doctors.

Male breast cancer

Men can carry the gene too and have breast cancer.

VickiSam · September 2014

New Flower said:
Male breast cancer
Men can carry the gene too and have breast cancer.

EXCELLENT point - New Flower

I sometimes forget about our 'Brother's' in PINK ..

Vicki Sam

disneyfan2008 · September 2014

BRCA I hear of it often but

BRCA I hear of it often but have NO idea what it is?

Denise

corey50 · September 2014

disneyfan2008 said:
BRCA I hear of it often but
BRCA I hear of it often but have NO idea what it is?

Denise

BRCA

FROM THE NATIONAL CANCER INSTITUE: BRCA 1 and BRCA 2 are human genes that produce tumor suppressor proteins. These proteins help repair damaged DNA and, therefore, play a role in ensuring the stability of the cell’s genetic material. When either of these genes is mutated, or altered, such that its protein product is not made or does not function correctly, DNA damage may not be repaired properly. As a result, cells are more likely to develop additional genetic alterations that can lead to cancer. there is a genetic marker test that can be done to see if you carry a mutation in these genes that are for breast cancer and ovarian cancer.

thank you all for your replies. I've come to realize that this is a personal decision and that every case is different. By the way my niece's results came back and she was negative (thank GOD) for both markers.

Health and blessings for all.

disneyfan2008 · September 2014

corey50 said:
BRCA
FROM THE NATIONAL CANCER INSTITUE: BRCA 1 and BRCA 2 are human genes that produce tumor suppressor proteins. These proteins help repair damaged DNA and, therefore, play a role in ensuring the stability of the cell’s genetic material. When either of these genes is mutated, or altered, such that its protein product is not made or does not function correctly, DNA damage may not be repaired properly. As a result, cells are more likely to develop additional genetic alterations that can lead to cancer. there is a genetic marker test that can be done to see if you carry a mutation in these genes that are for breast cancer and ovarian cancer.

thank you all for your replies. I've come to realize that this is a personal decision and that every case is different. By the way my niece's results came back and she was negative (thank GOD) for both markers.

Health and blessings for all.

Thanks for the info

Thanks for the info

ANYBODY DECIDED NOT TO DO BRCA TESTING

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