Another few steps down the road!
July saw me travelling to Eastbourne for a breast MRI. My experience of being placed in a noisy plastic tube with a cannula in my arm was surprisingly fine! The radiologist was very reassuring throughout and I lay down and listened to Calvin Harris on some massive headphones. Singing along helped, especially when they pumped dye through the cannula and I thought my hand may have numbed out completely.
I’d been told the MRI was a very noisy experience so I expected not to really hear the music - but apart from the occasional “pneumatic drill” type sound and lots of beeping I barely noticed. Maybe having 2 tiny children means I’m used to background noise….. Whatever, I can say that being placed face down on a table with lots of warm blankets over me nearly induced sleep.
Thankfully the MRI was clear.
August saw me back in Worthing Hospital to see Anna. Anna ran through the implications of having the BRCA1 gene once again and discussed my potential screening vs treatment pathways. By this point I had already come up with a plan in my head:
Firstly, surgery feels like the safest way to go. Yearly breast screening (via MRI or Mammogram) is available to BRCA1 carriers through the NHS however ovarian cancer has no effective screening in place. Ovarian cancer is often referred to as “the silent killer” as symptoms are hard to spot until it is too late and it the cancer has spread outside of the ovaries.
Removing the ovaries and fallopian tubes (salpingo-oopherectomy) is usually a minor keyhole surgery operation, and can also significantly reduce the risk of breast cancer. However, taking away the ovaries also results in full on menopause. And, should breast cancer ever occur, there would be no option of taking HRT to compensate for the immediate oestrogen withdrawal.
Menopause at 34? Not something I fancy either! No more oestrogen can a massive impact on heart health, sexual pleasure, bone density and mental functioning. Yep, that sounds wonderful.
So, here’s the plan: breast surgery first. I will opt for a double mastectomy which will reduce my lifetime chance of contracting breast cancer from 70% to around 10%. I will opt for immediate reconstruction (I like my curves!). Mastectomy and reconstruction are more major surgeries but should mean HRT is safer when I come around to removing my ovaries and tubes.
Then once reconstruction is complete I will re-visit the salpingo-oopherectomy. Current evidence suggests that a BRCA1 carriers risk of ovarian cancer dramatically increases at 40, and removal should be happening a few years before this. I will want immediate HRT to curb any menopausal symptoms.
Anna seemed satisfied with my knowledge and so that’s the last appointment we have for the near future!
Moving onto September (and post a very warm, sunny, fun and needed camping holiday to France), and my most recent appointment(s). Friday I went to the Royal Surrey County Hospital for a specialist “gene” clinic. Here I got to meet a breast surgeon, gynaecological-oncologist and breast care nurse all on the same afternoon to discuss treatment options.
The team at the hospital were fantastic and helped ease the pain of a very intense afternoon. First, I met with the family history nurse, Susan. She was kind so of course I bawled my eyes out (usual for me, really, rather understandable). Then I moved onto the gynae-oncologist and bawled my eyes out again. She suggested the same treatment pathway to what I’d come up with which was really reassuring. Basically - leave the ovaries be for the next few years whilst the boobs get chopped, then come back in a few years time. She was very quick to reiterate that ovarian cancer is not a monster to mess with - and said the vast majority of her referrals are already Stage 3/Stage 4 cancer patients. Horrible.
Then, a 3 hour wait for Tracey Irvine, the consultant breast surgeon. She’s a lady in demand! Meeting Tracey was an interesting experience - she’s very no nonsense and straightforward. And then, of course you have to strip down to your knickers while she gains intimate knowledge of your breasts and assesses your body for any excess skin/fat to use in the reconstruction process. I’m not sure what to say! Except that it’s an integral part of the process and it has to be done. Apparently there’s not enough excess skin/fat anywhere on me (except, maybe, the thighs - no revelation there) to completely reconstruct 2 breasts so implants are looking like the way to go. I don’t plan to put on weight just to rebuild my boobs - unless she explicitly advises it - I’ve lost just a small amount over the summer yet feel so much better for it.
Friday night I made a more “public” announcement of what I’m going through (i.e. Facebook!). I’d told quite a few people already and was starting to lose track of who did and did not know! Doing this was interesting - although there was an overwhelming amount of support it did not bring joy. Facebook cannot replace those people in the real world who bring cake, cocktails and real laughter to life. I think also this - combined with the appointments - has eventually brought it all to life. I haven’t been living in denial but at the same time it all seemed a bit surreal.
I’m now exhausted. In so many ways. Tired of the journey already and the surgeries have not even begun! I don’t want to be the patient, I don’t want to be dependent on others, I don’t want to lose my boobs. I didn’t want to have to curb nursing around Ellie’s 3rd birthday. I certainly don’t want to lose my ovaries and face menopause and the thought of losing fertility is a mind-spinner for all ladies at some point!
I’m having a real “don’t want to, don’t like this, get me out!” tantrum. Wouldn’t you?
