So results are in. I decided that it had been almost five weeks that as I hadn’t heard from the genetics specialist that I would call to see if they had heard anything with regards to my genetic testing to see if I have the BRca gene. I did eventually speak to Lisa Walker (although she was pretty off with me telling me that I was impatient. I’m not going to dwell on it but at the time I was pretty upset by her comments) The results had been received two days before and she was about to send me a letter (which don’t arrive for 3 weeks- in my experience and from what she told me aside form the fact she had said she would call me immediately once received). Anyhow, she simply said that ‘nothing had been found’. Then went deafly silent. I was totally shocked by this news. I had convinced myself I guess that as I had cancer, my grandmother had breast cancer and both my mum and aunty had melanoma that surely it must be genetic. Nope. She told me this was good news as it means I don;t have the higher risk of ovarian cancer.
This fact I guess is very true. It would save me having to have my ovaries removed plus also is a sigh aof relief for my mum, aunty and sister who had I been told I have the BRca geen would have had to be tested themselves and that may have meant they were at greater risk of cancer and then have to make the awful decision of elective mastecomy and oophorectomy.
For me I was pretty down as this mean the clinical trial for Parp Inhibitors is now off the table. We had heard great results with this treatment and not only does it kill the cancer but there are little side effects. Also I think becasue I had convinced myself that I must have thegene mutation.
As usual Pete came home and made everything alright again. He reasoned it through with me and actually said that it is a good thing really. It eliminates a lot of worry. I had been beating myself up for not having had a test done sooner and that all of the last two years could have been sorted much quicker if knowing I had the gene I would have had double mastectomy and oophorectomy. i was kind of blaming the NHS for having helped me sooner and I woud not be where I am today. I would have been clear. BUT.. it wasn’t so. A relief really.
So now to get to grips with knowing there is genetic reason for this cancer. OK I can’t have that trial (which although seems to have good results- it is isn’t 100% successful) but I am now waiting for results back from having my tumour tested to see what mutations that has to see what other trials may help me.
Knowing all of this, I do feel in my gut that I am now unsure I want to have any more chemotherapy. Not unless the docs can give me figures and statistics to the success rates. Let’s face it they don;t know how I got cancer, what causes its continuous growth and they certainly don’t know how to treat it, so do I really want to be guinea pig made to feel utterly awful, ripping my body apart just to find out it doesn’t work?
I listen to what they have to offer but I think right now I’m going to take my chances. It’s odd how such little news can turn my whole thought process upside down. I’ve gone from feeling devastated today, thinking that I’m never going to get through this to now thinking, this could a blessing in disguise. I’m not genetically programmed to have breast cancer (nor are my family), so let’s crack on deal with what I do know.
Just a note on doctors and professors of medicine- They are amazing minds in general who are very knowledgeable. Let’s face they are scientists. But I so wish they had better communication skills. Some are blunt, sometimes hesitant and assuming how much pressure they are under can let themselves become rude and don’t spare a thought to the person that they are speaking to and what turmoil they are going through. I’m not upset anymore. But it shocks me every time.. Maybe I am impatient but isn’t it expected of me?
I’m booked for a return to Germany next month to continue with that treatment. I have a CT scan at the end of this month to see what has happened inside me.(I promise I won’t pin my hopes it has miraculoulsy gone) and I await to the 10th Sepetember to find out results on the tumour and what happens next with the NHS.
I would still be in the doldrums if it wasn’t for my Bear having such a sense of clarity. He makes everything better. What would I do without him. Struggle 🙂