BRCA 1 & 2 and optional ovarian surgery?

Question

I was diagnosed with breast cancer 3 years ago when I was 29 years old. I am ER+ and Her2 +. I had bilateral mastectomy, the right side as prevention. My dr wrote to my insurance company asking them to approve the BRCA tests. They turned me down. Twice. I have not had them done myself since they cost about $3000.
I am supposed to have my ovaries out next week, by my own request, but my onc told me this past week that he doesn't agree with my decision. I am currently in a study where my ovaries are shut down each month, for another 2+ years. He is worried about the long term effects of being in menopause at my age. I am worried about ovarian cancer as I am not sure if I have the BRCA mutation or not. If I have it, I have read that there is a 16-60% chance of getting ovarian cancer.
As a side note, I had an ovarian cyst rupture, which in itself is odd since less than 2% of women in menopause have ovarian cysts.

Has anyone else been in this situation? I don't know what to do.

For the one who thinks that it doesn't believe it costs that much for the test, I have found independent labs who charge just under $3000. I suppose it could have changed in the 3 years when I last checked it. I do know it is very expensive. And it was my choice to have the preventative mastectomy. I was 29 with 2 young kids and was willing to do whatever I needed to. That surgery was not forced on me, and unless you have been in the position, I do not think you can tell me what you would or would not have done.

Answer 1

Do you have any other family history of breast or ovarian cancer? That would affect your risk of carrying a BRCA mutation. Have you thought about seeing a genetic counselor. They will do a complete family history and then they can use special models to calculate your risk of carrying this mutation. This may give you a better idea of what your risk is. If I were you I would have my ovaries out. If you do have the mutation your risk for ovarian cancer quite high. Ovarian cancer is sneaky (we do not have a good way to diagnose it early, produces vague symptoms) and is usually diagnosed at a late stage when we do not have good treatments for long term survival. You will be menopausal and since you are ER+ you will not be able to have hormone replacement but there are some non-hormonal meds to help with your symptoms. (ask about effexor). Trust me, I have had several patients who had breast cancer at a young age, did not know if they had a BRCA mutation, had bilateral mastectomies and developed ovarian cancer down the road because no one addressed their ovaries. I think if you were brave enough to proceed with mastectomy I would be on the safe side and protect yourself with the removal of the ovaries. I commend your initiative and courage.

Answer 2

This is a tough situation, BriteHope. If you'd like we have a group here on Yahoo called Sisters in Survivorship with all young breast cancer survivors, you could come join and tell them Lori sent you.

I think you need more help getting the BRCA testing approved. There is a great organization called FORCE, Facing Our genetic Risk of Cancer Empowered, if you go to their web site you can get some help there. It's ridiculous they won't approve it.

I understand about the risk of ovarian cancer. In the meantime you could get transvaginal ultrasound and tumor marker for ovarian cancer testing every six months to help detect it early if you did get it.

Maybe you want to get more information before having the ovaries removed. However, if you do decide to do this, you should be able to find a doctor who will do it and agrees with your decision. Yes, the long term effects of being in menopause suck, but some chemotherapies cause you to go into menopause anyway!

Are you on Herceptin or did you get it?

I would think you could still have an ovarian cyst because you're not really "in menopause", you are just shut down with meds. But I don't really know.

Good luck

Lori

Answer 3

My partner just had the BRCA tests done, and the cost was around $3800. Fortunately she has outstanding insurance that covered most of it. Her mother was recently diagnosed with ovarian cancer and she wanted to assess her risk (four women on the same side of the family with ovarian or breast cancer). She has a mutation in the BRCA 2, which gives her a 84% chance for breast cancer and 27% ovarian. She will have her ovaries and oviducts removed, we are considering the uterus, and we are looking into options for breast health.
So, I don't have much to offer by way of suggestions, but you're welcome to email me if you'd like to chat.

Answer 4

Hi BriteHope. I am surprised your docs did a prophylactic mastestomy without having your BRCA status. These prophylactic surgeries (breast, ovaries) are radical therapies and should only be considered when you have all of the evidence needed to make a rational decision. So, you need to have the genetic testing done - even if you pay for it yourself.

As a side note, I have had genetic testing done for certain genes and it only costs a few hundred dollars. I am not familiar with the costs for BRCA genes, but I am having a hard time believing it costs $3000. Great Smokies Laboratories is a leading medical lab and does genetic testing. You may want to check their website for prices. (I just checked the website, they have changed their name to Genova Diagnostics and they do NOT offer BRCA gene tests - so much for that suggestion!)

Best wishes and good luck.

Answer 5

Try Vitamin C therapy. A few years ago a cancer researcher came out with a paper saying that the best cancer and infection fighter as yet found was Interferon, but, at the time, it cost $15,000 a gram. The good part was that Interferon was a product of the natural breakdown of Vitamin C in your system. The FDA says that the RDA for Vit C is 64 mg a day, just enough to prevent scurvy. Linus Pauling, who got a Nobel Prize for his work with Vit C and a second Nobel Prize for organic chemistry, said 1000 mg a day as a minimum and 2000 mg a day if you are sick. On a personal note, I was sick twice a year, for 2 weeks at a time, for 20 years, and was flat on my back for at least a week each time. To this day the doctors have no idea what the problem was. After I gave up on the doctors I tried Vit C. I took enough to keep from being sick and just below too much to get diarrhea. It followed a bell curve over 2 weeks with a peak at 40,000 mg a day – about 300,000 over the 2 weeks. I was not sick for those 2 weeks and after a couple of years of that I have not been sick since. I did not dissolve my kidneys, as some doctors said would happen. I did not get any calcium build up or stones and did not dissolve my cones or solidify my joints. Try it, but drink a lot of water – Vit C is a natural diuretic.

Answer 6

Before I had the surgery I would go to the alt.support.cancer.breast discussion group accessed via Google Groups and ask the same questions there. I'd also ask if anyone knew of no cost or low cost BRCA testing options to found in the US. I'd guess this resource is available if you knew exactly where to look especially given your previous medical history. good luck