Waiting...

Ellie’s at nursery, and I’ve just had a moment to put my work down and write about all that’s happened over the past few months BRCA1 journey wise. 

I recovered from the September gene clinic which really was a shock to the system. Meeting all the specialities at once was good calendar wise but overwhelming! So overwhelming. There were tears afterwards, and sadness, but it did pass. 

Two months after I travelled to East Grinstead to meet Martin Jones, an amazing reconstructive surgeon specialising in using other body tissue to recreate the breasts. This was really helpful and he was an absolute gentleman, putting me at ease as soon as I stepped into the room. It helped that I only spent a few minutes de-robed, and most of the consultation happened with clothes on! Martin explained he could use thigh fat to reconstruct the breasts (up to about a C cup size). He showed me lots of photos of his previous work and I was amazed by how neat and natural some of it looked. However, just as I was about to submit my body as a living work of art to East Grinstead hospital, he pointed out that the hair travels with the tissue………and I didn’t fancy hairy boobs (especially pubic hair!)…….so as impressed as I was, I made my mind up to go back to Tracey at Royal Surrey and go with implants. 

After this, I had a very frustrating wait for various specialities before being able to go back to Tracey. A prolonged case of telephone tennis finally landed me an appointment with Helen, one of the breast care nurses. I was curious about the implants, the surgery and the recovery and after 90 minutes of her time I felt we left no stone unturned! 

My final challenge before the surgeon appointment was to book in with the consultant psychologist, another necessary step in the pathway before committing to surgery. I’d been waiting for an appointment since September, and then, just out of the blue in February I managed to get an appointment 2 days later. 

Katherine was fantastic; one of those people who is positive, yet realistic, who reassures you, builds you up and gives you plenty of space to talk. I honestly did not think it was possible to spend 90 minutes talking about my relationship with my boobs (peppered with a lot of stray chatter as we both seemed to like to talk!) - however it was. And although at the time I didn’t feel it necessary, the meeting has helped me affirm my feelings and has really boosted my morale along such a tough journey. I think it would be hard to meet Katherine and NOT leave feeling better - whatever you happened to be going through. And I did not feel run down in the first place! 

So, for now, I’m back to waiting. Waiting for an appointment for Tracey; which will hopefully lead to a more concrete idea of surgery dates. I’m trying to be patient. I’m ok at it ;)

Slowly moving through this journey, I’ve become to realise the waits have been both bad and good. Bad - in that I’m really bored of basing my life around the prospect of surgery. Of not being able to book holidays and trips away for the family. Of not knowing whether those concert tickets we’ve bought are useable. Bad in that I recruited an assistant for the business mainly so that she could cover for me while I was out of action post-reconstructive surgery. And the longer things drag on, the higher the chance that she may not be there for me when I need her. 

But good, good in that the more time I have to absorb the information, the more convinced I am that surgery is the right pathway. The more I come across people who’ve walked the same path, who can encourage and inspire. 

MRI's, decisions, decisions.....

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?

Finding out ...

8 days since I found out I have a BRCA1 mutation…..

In most ways, nothing has changed. It’s been a lovely week. Sunshine, beach walks, swimming, laughter with the family. Sports day! 

And in other ways, it’s been weird, slightly disturbing, odd. Rather confused.

I found out in January there was a BRCA1 gene abnormality in my family (: http://en.wikipedia.org/wiki/BRCA_mutation). My dad was tested October time but he hadn’t mentioned it then - life was pretty stressful as was.

When dad gave me the letter from the genetics team in January, I was feeling pretty shocked. His words of caution early last year of “another one of your cousins has breast cancer, you should ask for screening” didn’t really phase me. Around 1 in 7 women get cancer at some point in life, so two cousins didn’t seem really indicative to my risk.  But, there it was in writing, a letter inviting me to genetic testing. A letter explaining that there was a recognised mutation to the BRCA1 gene in his family - which, unfortunately he had and therefore I had a 50% chance of having too. A few google searches told me that if I did share the same mutation my risk of breast and ovarian cancer were much higher than I thought. Individuals with a BRCA1 mutation are predicted to have a 5 times higher risk of breast cancer, and a risk of ovarian cancer 10-30 times normal.

Testing isn’t compulsory. I could have taken that letter and thrown it in the bin. No one would have chased me. 

But I chose to find out. Because in my mind, when you’re facing cancer, knowledge is power. Although it’s uncomfortable finding out that your risks are massively increased, you also open the door to a range of preventative options, or more regular screening. 

It took around 4 months to receive an appointment letter from the genetics team, and I then had an appointment scheduled for the end of May, just before my birthday. A 5 month wait in total - pretty mad. I had a couple of health scares during that time that thankfully amounted to nothing but I became uber aware of my body! 

The counselling appointment went smoothly. My genetic counsellor, Anna spent time running through my understanding of the testing, the possible outcomes etc. There was very little covered that I hadn’t had a chance to mull over and research in the 4 months prior! I had blood taken straight after, had a little emotional wobble, and then carried on life as usual again. 

Three weeks later, the phone call. Anna called at 1730 on a Monday evening. As soon as she called, I knew. Thankfully real life CRAP situations don’t call for the kind of X Factor 30 second pause situations. So there it was - I got the wrong side of the coin. I have a BRCA1 mutation. 

I let my husband and some close friends know immediately. I am so tremendously grateful for the support they gave and give. I have been showered with cake, flowers and kind words! 

I honestly don’t know what the next few years at least hold. I’m considering all options seriously right now. Emotionally, I’m mostly feeling extremely grateful - grateful to a cousin I’ve never met for pursuing the family genetics, grateful that I live in a country with a free health service and grateful preventative surgery is possible. Grateful for friends and for family. But sometimes, fear and sadness creeps in - fear that I’ve passed it on to our children, of possible surgery, of cancer, of ill health, of not being able to feed my youngest daughter to term. 

So, this is the beginning of this journey. I’m still me of course, but with added complexity. Sigh.