Guest Blog: BRCA2 and Don’t Know What to Do

10 06 2009
Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Please meet Jenny Fink, a BRCA 2 carrier, who pens Blogging ‘Bout Boys. (Check it out — I’m guest blogging over there tomorrow.)

Breast cancer has haunted me my entire life.

From the time I was little, I knew that breast cancer stalked my family. My maternal grandmother died of breast cancer when I was just five, and one of my maternal aunts had breast cancer sometime when I was a kid. I don’t remember the details, but I do remember my mom ducking into the bathroom to see her scar.

My own mother didn’t develop breast cancer until I was an adult, a married twenty-something living out-of-state. Still, I remember seeing my mother’s mastected breast, dyed green and slice for analysis. It’s not the kind of thing you forget. (My mother, a nurse, specifically asked to see the samples, and I was in the room when they wheeled them in.)

It wasn’t until she was diagnosed with ovarian cancer ten years later that we learned about our genetic mutation. Despite the fact that we knew we were at risk for breast cancer, no one had ever bothered to inform us that ovarian cancer is sometimes linked to hereditary breast cancer.

When we learned about the link between breast and ovarian cancer, I pushed for genetic testing. I’d had enough of health care professionals pushing my concerns under the rug. If I tested positive, I reasoned, I’d have absolute, solid proof of my risk status – and no one could ever again brush off my concerns by saying, “Yes, but has your sister had breast cancer?”

That was a little over two years ago. Finding out I had a BRCA2 mutation was really no big deal; strange as it may sound, for me, the bigger deal would have been finding out I was negative.

Doing something about it has proved to be a little harder.

First, I was nursing. My youngest child was not yet a year, and I was determined to breastfeed him to completion. Continued breastfeeding, I reasoned, was best for both of us.

Now, though, he’s been weaned for the better part of year. It’s time to schedule a screening, but our health insurance recently changed from full coverage to a high deductible ($5,000!) policy. I’d scheduled an appointment at the regional academic medical center to discuss screening and my options, but cancelled it when I realized I’d be paying out of pocket. My plan now is to wait til my annual physical (covered at 100%) and to ask my family doc to recommend a mammogram (which, I think, should also be covered.) As for the MRI I should probably have – well, I’m not sure how I’m going to pay for that just yet.

My situation is not unique. How many of you have a mutation, but limited insurance coverage?

I’m not sure yet what I’ll do regarding prevention; if I’ll try Tamoxifen (though I recently learned that some antidepressants basically disable Tamoxifen) or if I’ll schedule preventive surgery. The scary thing is that I’ve already calculated that surgery may be the cheaper route: if I decide on a prophylactic mastectomy and oophorectomy, I’m pretty sure I’ll meet my $5,000 deductible. If I simply decide to do screening each year… each year, I’ll have to pay $1,500 out-of-pocket for an MRI.

How do you cope financially? Has insurance coverage (or lack of coverage) influenced your healthcare choices?

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7 responses

4 08 2009
Kristina

I am in an oddly similar situation. My mother was diagnosed with breast cancer at the age of 53. She had a single mastectomy and I remember being horrified as I watched her difficult recovery. She never opted for reconstruction and, though I was happy she had survived the cancer, was saddened for her about her disfigured body. At age 62, (November 2007) she was diagnosed with Stage III Ovarian Cancer. Her cancer was in remission by mid-2008, but she died unexpectedly in her sleep in November of 2008.
Because of a particularly conscientious ob-gyn, my mother got genetic testing. She was adopted and so not much family history exists. Unfortunately, she died the day before we were to go receive her results. I went and got them on my own with my husband for support. I would learn that she was positive for BRCA 2 and later would find out that I too am positive.
I was pregnant during all of this and that prevented me from really doing much in the surveillance arena. It’s like I focused on being pregnant and just sort of swooshed the positive result and all it means under the rug. Now my son is 2 months old and though I am breastfeeding, I am starting to schedule consultations. I know that I will have prophylactic surgeries. I feel that there is no other option for me. My family needs me and I have no desire to go down the same road my mother did. Isn’t that why we got tested? I think this knowledge is the gift she left for me. The problem is that, now that all of this is on the forefront, I am absolutely terrified. I have been googling information and photos and I am scared to death. I’m 35 and have never had a mammogram and can’t until I am done nursing. When I can’t sleep at night and my mind wanders, I find that I am fearful of already having cancer. I guess I see myself as having one foot in the grave and I don’t want to die. I don’t know yet what insurance will cover nor what I will do if they won’t cover my surgeries. I suppose I’ll cross that bridge when I get to it.

4 02 2010
Natalie

Dear All,

I received the results of my test today – and I carry the BRCA2 gene. I guess I knew I did, although until this morning I still lived with that tension between being resigned to the fact that I probably did have the gene, and that secret, guilty hope that I might not. The probability having been 50/50, I always had that image of a coin flipping, or Schrodinger’s cat, and imagined myself getting either the good, or bad, news, and my two very different reactions.

I’m 29, my mother first got cancer when I was 11 (when she was 39), so the time for me to start the process of preventative treatment is now. I’m British and I live and work in Spain, and the one thing that shocks me, culturally, reading the above posts, is the additional stress that these women have to go through regarding what the insurance will or will not pay for. Obviously health care is free in the UK and Spain and my mother, having had three separate cancers, is still alive, happy and strong and has never had to pay a single penny.

I also just happen to work as a researcher in a medical anthropology department and plan on writing a paper on the differences that my sister and I have encountered in the Spanish and British genetic testing services (genetic counselling is obligatory in the UK, whereas it is not offered here in Spain).

I plan to make further posts in the future and I’d be interested to hear about other peoples experiences of genetic testing etc.

Like my doctor said today, this is not a life sentence, there are actions we can take, and it is not the end of the world.

Having written this post I’m starting to feel better already :).

Besos desde Barcelona,

Natalie

22 01 2011
Becky Woods

Hi! I just had my prophylactic mastectomy on January 11,2010. I’m so glad it is over. I have BRCA 2, I actually got the gene from my father, whose dad, sister and brother all had cancer. I had a pre-melanoma removed this summer. It is such a wonderful thing to have a choice.
I am thankful my insurance has covered most of my surgeries. I had a hysterectomy in October. Don’t let money hold you back from your decision. The hospitals all have payment plans. Your life does not come with a price tag. Your family needs you more. If you have any questions, please feel free to contact me.

20 04 2011
Geri

I received a call today from my genetic counselor –I thought 1st she was calling to say it (BRCA 2) was negative. But she said she was sorry but I am positive. I was told I need to see a gyn/onc/surgeon ASAP—and that there is a “major sense of urgency” as I has a bi-lobed mass on my left fallopian tube.

My mother was diagnosed with ovarian cancer in 2004 and was encouraged to be tested then and would not do it..she is still alive and in her last days on her journey–treated by palliative out-patient at Dana Farber–got the tests as it was a prerequisite –I heard about this on facebook, and had to go through hell to get results–my gyn surgeon wanted them..

So I am to see a gyn/onc/surgeon–ASAP—and at the same time I am not sure when my mother is going to leave–the earth–any day-week-or month..

Sadly we do not have a good relationship–I have tried for years..I never had kids–I am 43 and was told 7 years ago that I would have eligible for egg retrial and frozen–and now no eggs no kids, Mom dying, uncle just died, positive BRCA2, and a mass..

I am so scared…

Any feedback is much appreciated–

9 09 2011
Debra

I received the call yesterday, BRACA 2 mutation positive. Just as my twin sister was diagnosed in March 2011. We both had early breast cancer DCIS. She was 38 and I was 41. No one had much genetic testing in 1995 and 1997 due to discriminatory insurance scares. I had a hysterectomy in 2004, routine. No cancer. My sister had a hysterectomy March 2011 after learning of the BRACA 2 diagnosis. No ovarian cancer found. I took Raloxifene for 12 years. and went through 3 lumpectomies and radiation. I wish I knew back in 1997 about the BRACA 2 diagnosis. It would have saved me a lot of medical visits and stress. My sister and I are in the same boat. We both have one existing breast. We are at this point choosing surveilance through mammogram and MRI. We are lucky to have insurance.
This mutation is most likely inherited through my father side of the family.
We are now 55 years old and both have adopted sons. We do have to mention this to cousins.

22 09 2011
Pamela Thomas

Hi all, I have the gene and was tested over 10 years ago when te testing was being piloted.
Mine came from both my maternal grand mother (ovarian) and my maternal grandfather(breast). I am tested regularly, both with trans vaginal scans and mamography. I have recently started having MRI breast screening.
i don’t feel that I have been given a death sentence, I just feel that I have been given the opportunity to catch any problems before they get out of hand. I am encouraging both my children (one son, 19 and one daughter, 17) to get tested as soon as they feel ready.
I have also lost many family members too young, but I feel blessed that have a chance that they never had. Having a defective does NOT mean that you WILL have cancer. Please consider all options and do what is best for you x x x x

7 01 2012
Breast Implants Adelaide

Great article guys. My partner just had the process done. Much more confident now!

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