a. There was a mutation in the BRCA1 or BRCA2 genes in my family and I didn't inherit it or,
b. There is another hereditary cause of the breast and ovarian cancers in my family.
What are my options?
Breast cancer: I have been placed on the high risk screening register and should go for annual mammograms from the age of 40. This is still 7 years away! What happens between now and then? At the moment, nothing! The reason I have been given for annual mammography to start at age 40 is that mammograms are not reliable at spotting cancer before then due to tissue density. I've been told that because my BRCA1 and BRCA2 test was negative that MRI screening in my 30s is not recommended for me. So for the next 7 years it's just me poking and prodding about myself and hoping I don't see or feel anything suspicious.
Ovarian cancer: There is currently no screening in the UK for ovarian cancer.
Screening is one of the things I need to learn more about - and there will be future posts on this topic.
Tamoxifen is chemopreventive - ie it is a drug that some people who are at high risk can take to reduce their risk of developing breast cancer. I have been told that I am eligible to take it (when I'm a few years older) but it turns out that this is actually not an option for me because I also have a family history of blood clots. (If I took tamoxifen I would reduce my risk of cancer but increase my risk of death by blood clot - not sensible.) There is some introductory information about tamoxifen for chemoprevention on the Breast Cancer Campaign website.
Risk reducing bilateral mastectomy
As I have been tested and don't have a BRCA1 or BRCA2 mutation I've been told a risk reducing mastectomy is not currently recommended for me. This is something I need to think about and research a lot more because I'm not happy with this. I might not have a BRCA1 or BRCA2 mutation but I'm far from being in the clear and while there is nothing about this surgery that is nice, I wouldn't hesitate for a second to go for it if I could. Why? It's not as bad as getting cancer.
To give my fear some context: my mother had inflammatory breast cancer at age 47. This is a rare type of breast cancer, and is never diagnosed before stage 3 - ie it is only diagnosed when it has already spread, and prognosis is generally around 2-6 years. The experience of cancer in my family is that no-one beats it. The cancer is aggressive*. The treatments don't work. I don't take the impacts of this risk reducing surgery lightly but it's a no-brainer to me. Get rid of these ticking time bombs! I can live without them.
(*In fact, in the case of inflammatory breast cancer this is 1. unlikely to be detected by mammograms and 2. develops and spreads very quickly meaning annual screening is not frequent enough anyway to be likely to lead to earlier diagnosis and better prognosis).
Risk reducing bilateral salpingo-oophorectomy (in English: ovaries out)
It was mentioned to me that this might be a possibility when I am around 40 years old. Or it might not. This surgery would almost eliminate risk of ovarian cancer, and it would also reduce risk of breast cancer by around 50%. The downsides are it instantly puts you through the menopause. There are lots of side effects to this (the hot flashes etc) but it also puts you at an increased risk of heart disease and osteoporosis.
I have been told to contact the Genetics Clinic when I am 35 and when I am 40 to see if there are other genetic tests and options available.
So in summary:
- Screening - not until I am 40 and remember, screening is not prevention. It is still a "wait and see if you get cancer" approach.
- Tamoxifen - not an option for me personally.
- Risk reducing mastectomy - not being offered to me under current NHS rules.
- Risk reducing salpingo-oophorectomy - not being offered to me under current NHS rules but might be a possibility when I reach 40.
- See what else might be available or have changed when I am 35 and 40 years old.