On being in the system.

Apologies for part three of the saga not forthcoming. During the intermission, I bring you my thoughts on today.

Some of you reading will know that I lost both my parents to cancer some years ago. What most of you won't know is that I was referred to the Genetics Service by my GP, finally, because of familial history cancer history. Essentially, you go and meet with a nurse who charts your family history and then does what research she can. In my case, it was pretty clear that I have a high risk of cancer number one (from Dad's side), but I was not expecting to be called back in relating to cancer number 2 (Mum's side).

With Dad, no genetic testing was ever done. When Granny died (AKAIC Patient Zero), they didn't know bowel cancer carried a family risk. When my uncle was diagnosed and treated, this was in Ireland and Dad - well Dad knew he was at high risk, but either wasn't recalled or (more likely) refused to go back to the GP, despite knowing he had polyps (indicating an increased risk). Dad also didn't consent to any of the genetic screenings when I initially raised this. That said, normally one primary relative OR two secondary relatives gets you at least a review. In our case, a letter has gone to my GP stating I'm to be put into the bowel cancer screening system very early and get early referral if I have changes before that. I get Full Monty screening too. Yes, you can ask. No, you probably don't want to know and yes, I've already had two screenings done.

After being called back in, the Genetics service told me they'd decided to review the risk of #2 (Ovarian) and plotted my risk factors for both Breast and Ovarian. Breast cancer came back with a population average and ovarian did not. I should probably explain at this point that unlike Angelina Jolie, there's no evidence of BRCA1 or 2 in my family or any of the more recently identified different genes known to be implicated in its development. Research is ongoing.  Anyhoo, off goes my case to Gynae for review and I received a letter informing me that I do, in fact, have a moderate risk of developing Ovarian Cancer. Prophylactic surgery is recommended, so today I popped along to see my  consultant for a chat about options. Yes, at 42 and childless, I was facing having both my ovaries whipped out and instantaneous menopause (I'm crazy enough, thanks). I think he was relieved that a) I'm a nurse and b) am clearly well informed about such matters and we had a good discussion. In the end, we decided that the way forward is for me to go "into the system". What this means, in practice, is that until such time we decide that I am going to have the operation (this will be in around 8 years time, or sooner if anything shows up) or not, I will have annual ultrasound and Ca-125 blood tests and a yearly review.  Ultrasound will show up physical changes potentially and the Ca-125 is a hormone secreted by tumours and generally the gold marker to indicate if something suspicious is going on. I am now "in the system". I am now being monitored.

I was, in actual reality, really anxious about meeting my consultant: I have been thinking about whether or not I want children or not (plus the early menopause thing) and if today was an "all or nothing" kind of a deal. I'm really glad it isn't. And I'm kind of pleased that child-bearing is still an option for the time being. And that I'm being monitored. Yes, I'm at higher risk, but I am in the system and being monitored.

I think there is a small comfort in that.