I was and had been feeling fairly relaxed about this...the medics afterall had said a BRCA positive result would be unlikely and my gut instinct was saying that the result should be negative...here goes...
I drove up to London and parked in my usual spot at the Chelsea & Westminster and hopped in a cab down to the Marsden. I met DW in the waiting area and it was only then that I started to feel a bit nervous. Thankfully the appointment started on time so the wait was short. We followed Kelly into the consulting room and pretty much went straight into the results...'you're a positive match to your cousin's mutation'...what? I felt like I had been bulldozed by a bus. In my minds eye I thought today's conversation was going to be you don't match your cousin's mutation but we're going to test further given the scenario behind your case....well that was not to be! There it was quite simply, you're BRCA1 positive. For whatever reason it felt like diagnosis day again. Tears started to well up. Stats and percentages were then mentioned but they all floated about my head as I couldn't grasp any of them. Then the next realisation was that I had to relay this news to my mother. My positive result meant that by proxy she is also BRCA1 positive as it would have been passed down through her gene pool. It also means that my maternal aunt is BRCA1 positive and would have passed this onto my cousin. What's so strange is that neither my mum or aunt have had either of the cancer's associated with the BRCA mutation (breast/ ovarian). Whereas both daughters have had the 'delight' of going through a treatment regime. They are both very lucky ladies who show that even when the odds are stacked against you, they are just that. Odds/ chances. Bizarrely with age the risk of breast cancer amongst the BRCA community decreases towards the lifetime average of 12.5% of women. The other person that is potentially affected is my brother. There is a 50% chance that he may be BRCA1 positive, which in itself presents little elevated risk to himself. It's more that he could pass this onto any future children. Science is wonderful but it is also quite scary that it can inform so much...ignorant bliss? In many ways I'm jealous of my mum's 65 years of this but given the medical circumstances of 2014 it's probably good to know...No knee jerk reactions please.
Prior to finding out the results I had made the decision that another boob job would be on the cards. But in the cold light of day I don't know if I'm quite ready to do this...logically I know it makes sense but living everyday with an implant boob that's not as soft and squidgy as its natural counterpart does bring this into question. If only for a moment. One of the first things that came into my mind was feeling like a ticking time bomb...you've got 50% of another breast cancer, 40-60% chance of ovarian cancer...ready steady go! I guess we all could say we're ticking time bombs from the moment we're born. Yes, you've been dealt a bad hand in the gene pool but at least there are options available. Don't forget it VW!
The utter positive of these results is that there is a reason behind all that has happened in 2014. I can stop, well try to, beating myself up with guilt factors around what food and drink I've consumed...it was apparently in the genes!
I came out of the appointment feeling completely bereft. Some reflection time was needed...a quiet corner in the waiting room provided this...it was late on a Friday afternoon so most people had gone home. No Gwynedd for a debrief hug, perhaps not the best time perhaps to pick for results! 2014 has dealt some harsh blows, most of which have been taken on the chin and got on with...this just felt like one too many....
DW needed to head back to work. This is one occasion where I really wished he hadn't... I needed to clear my head prior to calling my mum. A few days earlier Eoin had, after years of dedication, become FRCA positive (non medics - this is apparently a good thing!). So I could resist texting that although he may be FRCA positive, I was BRCA positive. Interesting how one letter can make such a difference. Phone call #1 went to Debbie, though it went straight to voicemail. Eoin had texted back saying he had time to chat so I phoned him next. It was good to just chat it through but also flow into a 'normal' conversation.
I walked along the Fulham Road chatting away to Eoin and then popped into Gail's for a chelsea bun...why the hell not?! They were all sold out...bugg@r! Pret it is then. Time to call my Mum. Deep breath...I am utterly thankful as her reaction was really positive, taking it all in her stride, noting the necessary steps for her and me. Phew...
I got in the car and drove to pick up DW from work. Despite feeling completely exhausted, I didn't feel like heading home just yet. I needed something to take my mind off of the results. So we decided to do a bit of Christmas shopping. Friday nights are always good to do this in London. We didn't stay too long as we needed to get back to cook dinner for nurse Lars who had come over for a short solo trip. A glass of wine was most definitely on the cards plus a comedy...we settled down to watch The Hundred Year Old Man who jumped out of the window and disappeared...catchy title! It's one of the rare instances where the film is much funnier than the book. I'd definitely recommend it if you need a laugh and tonight that's exactly what I needed. It made it all the more hilarious listening to DW giggling like a small child. Being wiped out and having had a glass or two of red, red wine, I dozed off into a glorious sofa snooze...
An unexpected day...I feel like I've been severely railroaded, punched in the chest, dealt an unfair blow. This is potentially one of the lowest days on this journey. Yes, there are positives to the results but also consequences which give this more of a legacy than just trying to grow my hair. Thankfully being exhausted I fell fast asleep...things will look better in the morning.
The next day I woke up to a new day, a blue sky and having had a great sleep. I was feeling a million times better than yesterday...positivity rebooted and restored. Regardless of my season ticket on the positivity train having been renewed, I still feel like there's a world of healthy folk out there and I'm in the outsider's club. Nothing can control this situation. I am totally thankful for living in a country where options, which I'd rather not have to think about, are available. So what are the options. Having had cancer in one breast already my other boob has a 50% chance of it being affected. The tamoxifen tablets that I'm taking should help alleviate this as well. In addition I can have annual screening mammogram (ouch!) and MRI. However, the surgical route eliminates the risk factor down to a 5% chance (7.5% less than the average UK woman). So, ok the surgical route seems viable. It was likely that a few tweaks would have been made to this boob to align it with my other boob job so to a certain degree it's a no brainer.
Being under 40 the ovarian risk is the one that is slightly harder to 'manage'. The guidance given yesterday was that the ovarian cancer risk does not dramatically increase until age 40 so under NHS guidelines they would not be advising me to remove my ovaries until then. Plus the side effects of early menopause are not recommended either due to other potential detrimental impacts on ones health. Unlike breast/ cervical cancer, there is is no approved screening programme for ovarian cancer. A few routes have been tested but they've often given too many false positives. Another option, having had a chat with Gwynedd is a drug called Zoladex. It's given by a monthly jab in the stomach...nice! This effectively puts the ovaries into a menopausal state but still allows hormones to access other parts of the body. Clever. Another drug...I'm not feeling so keen on this. Appointment needed with Dr Davis to talk through the options and to understand my current risk of ovarian cancer vs waiting 6.5 years to take any action. Prevention is the key! I took some time to read the Beginniner's Guide to BRCA by the Marsden - http://www.royalmarsden.nhs.uk/SiteCollectionDocuments/patient-information/brca.pdf. This confirmed the stats that had been floating over my head on the results day and put things into context. I also read for the first time, Angelina Jolie's article on her BRCA journey - http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=2& Having read both of these articles and some other info, it's given me the feeling that I can do things. Sure these are things that I would ideally like to not have to be considering but there are options out there.
DW is remarkably unphased by the the latest medical result, which is good. We had always thought our early 30s would be a time for starting a family. Another club that we're currently excluded from. Yes, it hurts but at the same time I think you have to count your blessings and carpe diem. You never know what tomorrow may bring.
Writing this entry on 8th January I don't quite know how this year will pan out in terms of preventative medicine. I don't feel materially different to pre 12th December. I suspect a second boob job in October/ November time. I'm due to see Dr Davis next week to discuss the ovarian aspect. It will be interesting to see how that discussion develops. Regardless of this 'stuff' there is a lot of things to be looking forward to in 2015 and beyond...top of the list visiting a new city and or country each month, getting back into the work groove, DW starting his new job, spending time with friends and family....and much more I'm sure! Bring it on!!! : ) xxx
