Deb, a Pink Hope Outreach Ambassador, has the BRCA1 gene fault yet unlike other families with the gene fault the dominant cancer in her family is ovarian cancer. She highlights that in the recent media coverage as a result of Angelina Jolie sharing her BRCA1 status and preventative double mastectomy the focus has been on breast cancer and that ovarian cancer should also receive coverage. In this blog post she educates us about ovarian cancer, symptoms and screening options and shares her decision to have a preventative oophorectomy and total hysterectomy aged 35.
So by now we know the news that Angelina Jolie is BRCA1 positive and has had a preventive bilateral mastectomy to reduce her risks of breast cancer and is contemplating having a preventative surgery to also remove her ovaries sometime in the future. This is great to bring the challenges of high risk women into focus, yet we all still remain focused on the fact that she has had a mastectomy to reduce her breast cancer risk and the fear of ovarian cancer has barely been touched. In my eyes this ovarian risk is a very real issue more so then the breast cancer risk and yes I too am BRCA1 positive.
Firstly let’s go back to some simple facts:
- BRCA1 and BRCA 2 refers to a region within the human genome present in everybody but in women classed as BRCA1 or BRCA2 positive there has been an identified fault or mutation that is commonly linked to an increase risk of either breast or ovarian cancer or both. (It is important to realise that there is a possible 1000 mutations so far identified in BRCA region that have been associated with woman diagnosed breast and ovarian cancer).
- 5% of all breast cancers can be genetically linked (this number maybe as high as 10% in some countries and does not include genes not yet identified).
- 15% of ovarian cancers can be genetically linked (and again this number does not include genes not yet identified).
- If you are a carrier of a BRCA gene mutation it is not a guarantee by any means that you will get breast or ovarian cancer it just means you are in a higher risk group then many others with no family history. (some figures quote 80% risk of breast cancer and ~ 60% risk of ovarian cancer).
- Even with the gene, the high risk is not cut and dry and still takes into account family history, lifestyle and other environmental factors.
- You can also still be classed as high risk without having a confirmed gene mutation, normally classified as inconclusive, with a really strong family history but gene not yet isolated.
- Preventative surgeries are not something that should be considered if family medical history does not indicate that there is a risk.
Ok so like I said I am BRCA1 positive but my gene mutation is very different to Angelina Jolie or many of the other women known to Pink Hope. My reality has and always will be ovarian cancer first, my mother was diagnosed with ovarian cancer aged 58, my oldest sister was diagnosed with ovarian cancer aged 37 and I had a cousin that died 18mths ago from ovarian cancer aged 46 (her BRCA status is unknown until her children choose to check their status), out of the six women tested in my family so far only two are negative (one of my sisters and one aunt).
So within a month of confirmation of my BRCA status I decided that the risk for me was to great. I have three children of my own (two girls and a boy) and I didn’t want my children to see any more women suffer through ovarian cancer, and I didn’t want to have that fear of when will it happen. So I booked in for the preventative oophorectomy and total hysterectomy aged 35. Now based on current guidelines I really should have done this at age 32 (for any preventative surgery for cancer the surgery should be done 5 yrs prior to earliest onset), and yes I take HRT (oestrogen only) having had the hysterectomy also done.
Now prior to knowing my BRCA status when discussing family history I would always say “at least I don’t have breast cancer to worry about” and in many ways I still have that thought in the back of mind but it’s not as strong as it use to be.
So why do I feel women with BRCA mutations should be just as proactive about their risks of ovarian risk, first and foremost ovarian cancer symptoms are so vague and can easily be mistaken for many other less severe disorders so by the time you suspect something more serious is amiss it is often too far advanced.
Ovarian cancer symptoms: abdominal pelvic pain, increased abdominal size or bloating, need to urinate, feeling of fullness, change in bowel habits, unexplained weight gain or loss, back pain, bleeding between cycle, tiredness, nausea indigestion.
Screening measures in place for early detection of breast cancer is very adequate due to the accessibility and superficiality of the tissue associated with the disease; however with ovarian cancer you cannot screen in any way despite the test being out there to monitor and aid diagnosis. CA125 a cancer protein associated with ovarian cancer is only used to monitor disease state, and tumour response to treatment in patients with known ovarian cancer. Why – mainly because so many other conditions can elevate a CA125. Regular ultrasounds of the pelvis mat miss microscopic changes and by the time the next ultrasound is due tumour growth is well under way. It is now widely regarded that in BRCA patients the tumour growth actually begins within the fallopian tube but growth is often very fast, therefore small changes will easily be ignored.
So what are the options for high risk women concerned about ovarian cancer:
- Be vigilant of the symptoms, however this may see you fearing the worse on a regular basis due to the symptoms that present so ambiguously.
- Consider fallopian tube removal; salpingectomy (as this is the suggested starting point in hereditary ovarian cancer).
- Consider bilateral salpingo-oophrectomy (BSO), depending on your age you will be faced with the decision of having HRT (note BSO are not often encouraged before the age of 40).
- Do nothing and take your chance which regardless the opinions of other people, it is truly your right to do so.
- HRT now depending on gene mutation and whether you have kept your uterus which is a whole other topic in its self.
It’s really important to realise that any choice to be proactive, (or ignore), your cancer risk is going to be one of the hardest and emotionally fuelled one you can ever make. For me having a mastectomy would have been an easy choice (and still is a choice I have no problems with) as I didn’t need my breasts anymore so if I had the means to do so they would be gone tomorrow (but like I mentioned earlier breast cancer was not my worry). But to choose to have an oophorectomy, to take away the chance to have any more children, and then place your body into early menopause (even with HRT) was one I wrestled with until the surgical team put me under. However today, actually even once I woke up post op, I can honestly say I do not regret my decision. I am a menopausal woman who made the choice to be that way before my body was ready. I gave all that up to ensure that my children did not have to worry about me getting cancer.
So, recently whilst visiting a high risk clinic with my sister my choice was validated when her doctor said that with our family history the general % risk would alter to about 85% for ovarian cancer and although tube removal was an option available he still would recommend the full BSO which for my sister should be done now (in that it should be done 5 yrs before earliest onset).
Remember if you are looking for someone to make your decision for you, no one can and no Dr would say that you have to do a preventative surgery, they will highly recommend it if they feel family history and genes strongly indicate it as a useful option. And all choices relevant to your history and risks will be laid out for you. Pink Hope members will be a supportive shoulder for you to make that decision.