BRCA1-2 Genetic Testing

bobbiejo
bobbiejo Member Posts: 23
edited March 2014 in Breast Cancer #1
I was diagnosed in June 2002. I had a 2 cm lump and a micro amount in one lymph node. I had 6 treatments of AC and Toxatere and 33 radiation treatments. I had an appointment yesterday with oncologist and he recommended this test. My mom, her 4 sisters, my dad's 3 sisters, my 2 sisters have never had cancer. It was my understanding that if you have this gene it was passed genetically. He told me since no one else had cancer, I was probably negative, but I know there is always the chance.

I am questioning do I really want to know? If it does come back negative that would be great, but if it was positive, would I want to walk around the rest of my life knowing there was a 70-80% chance it would return. Even if I had the masectomy/ovaries removed it doesn't eliminate the lung/brain etc. I am telling myself I have my breasts checked every three months, a pap once a year (I am going to see if I can have it done more) so I am keeping up with my health.

My insurance will not cover it. HR tells me if we do switch insurances some companies will not cover expenses if the test comes back positive since it will be a preexisting condition if you decide not to do procedures in a timely manner.

I have a three year old and want to do everything I can to stay around, but I don't want to spend everyday waiting for cancer to return?

I would appreciate your opinions.

Thanks,
Bobbie Jo

Comments

  • sarajane
    sarajane Member Posts: 22
    #2
    I recently had the test because I was diagnsed with bi-lateral breat cancer and one side had the her2 gene. Since there was alot of cancer in the family my daughter wanted it done so she could be more aware of preventive measures ...get a mam. more often and be more diligent about self-exam. I paid for the test out of pocket and considered it a gift for my daughter's future well-being. Even if you should have the gene it merely alerts you to be extra-careful. If you do it be sure to go thru a genetics consellor. What you are buying is a bit of knowledge..my test was negative and so may yours be but even if it is positive all it does it gives you a head start on prevention. I have to say compared to everything else at this this is a painless test....
  • wingingit
    wingingit Member Posts: 48
    #3
    sarajane said it beautifully. A counselor can: determine your chances of testing positive for the BRCA1&2 gene mutations after taking a complete family history, discuss possible pros & cons of obtaining the knowledge of a positive test result, and advise you on existing laws that can protect you against insurance discrimination. If no counseling is available, your oncologist should be able to provide information from the genetic testing company, such as printed materials and a website (I found it to be remarkably unbiased.) I too felt like I would be empowering myself, my children, and other family to be proactive and make informed decsions concerning their risks for cancer. After being diagnosed at 47 (5-6cm) with a family history, and while undergoing neadjuvant chemo without knowledge of node involvement from surgery yet to come for several months, genetic counseling at a cancer center (surprisingly, only a 16% chance of positive results), insurance coverage, and the support of family members, I tested negative. I understand it being a difficult decision for you. It would be nice if you could hear from both those who have decided against the testing and those who have tested positive. Anyone?
  • Sandis
    Sandis Member Posts: 85
    #4
    I was diagnosed in November and had two lumpectomies before a bilateral mastectomy. After the first lumpectomy I had genetic testing done. I had lots of family history. My mother, aunt and cousin all died of ovarian cancer and my aunt, other aunt, and grandmother had breast cancer. I tested positive. I met with a genetic counselor first who strongly recommended the testing. My insurance covered most of the cost because of the strong family history but they would not have paid for it without the strong family history. I am really glad I had the test. It relieved me of the decision of a bilateral versus single mastectomy after they were unable to get clear margins. I am having a hysterectomy in December. One of my sisters and one brother tested positve after I had the test. The cost for second family members is much less than for first family members because the gene has been isolated. Two of my nieces have tested positive and one is having a hysterectomy. My daughter and other family members are having much more frequent testing, etc. I found it very helpful and found it didn't raise my anxiety because with my family history, my anxiety was already high. Also one sister tested negative so she has been really relieved. Anyway, I'm a strong supporter of testing. Good luck to you.
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    #5
    I went to see about having the test done and opted out. When you talk to the counselor they will tell you a negative test does not guarantee you don't have the gene, and a positive test does not mean the cancer will return. Course it does change the stats, but nothing is 100%. I think neg is 70% chance it won't reoccur (in the breast) and pos is 70% chance it might reoccur. For me the results were not worth the cost. I would have been out of pocket $2,700. However the consultation was free. Also, by looking at my family history they determined there was only about a 25% chance I had the gene.
    Sarajane, I thought that was about the sweetest thing I've ever heard, to have the test as a gift for your daughter! That's so thoughtful. I'm glad it came back negative.
    Anyway bobbiejo, those are my thoughts. The other side of the coin if you will. God bless you and guide you in whatever decision you make. hummingbyrd
  • epgnyc
    epgnyc Member Posts: 137
    #6
    Hi, Bobbiejo. I was diagnosed in May 2002 and went through a lumpectomy, chemo and radiation. Since one of my sisters had ovarian cancer at age 50 and a first cousin had breast cancer at age 44, I decided to go for genetic counseling (the precursor for testing for BRAC1-2) to help me decide whether to have the testing done. One of my other sisters went with me since she was interested as well (she has twin daughters, age 30). After reviewing extensive family history, it indicated that we were unlikely to have these gene mutations (mostly because of the type of ovarian cancer my sister had). Based on that, both my sister and I decided not to go forward with the gene testing itself. However we felt the counseling session, which lasted over 2 hours, was invaluable. They mapped out exactly how all our female family should be followed given our ovarian/breast cancer history. I am totally comfortable with my decision not to have the testing itself, but this is very much a personal decision like so many of decisions that have to be made following a diagnosis of breast cancer. You might want to consider having just the genetic counseling as it will give you lots of information and isn't very expensive (mine was about $300 for the two of us). Seeing as you're already being carefully monitored, I can certainly relate to your wanting to move on. Good luck whatever your decision.
  • epgnyc
    epgnyc Member Posts: 137
    #7
    Hi, Bobbiejo. I was diagnosed in May 2002 and went through a lumpectomy, chemo and radiation. Since one of my sisters had ovarian cancer at age 50 and a first cousin had breast cancer at age 44, I decided to go for genetic counseling (the precursor for testing for BRAC1-2) to help me decide whether to have the testing done. One of my other sisters went with me since she was interested as well (she has twin daughters, age 30). After reviewing extensive family history, it indicated that we were unlikely to have these gene mutations (mostly because of the type of ovarian cancer my sister had). Based on that, both my sister and I decided not to go forward with the gene testing itself. However we felt the counseling session, which lasted over 2 hours, was invaluable. They mapped out exactly how all our female family should be followed given our ovarian/breast cancer history. I am totally comfortable with my decision not to have the testing itself, but this is very much a personal decision like so many of decisions that have to be made following a diagnosis of breast cancer. You might want to consider having just the genetic counseling as it will give you lots of information and isn't very expensive (mine was about $300 for the two of us). Seeing as you're already being carefully monitored, I can certainly relate to your wanting to move on. Good luck whatever your decision.

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