Tuesday 12th November

Yesterday was just under 2 weeks since I had my second operation.

I feel as though I have recovered from this one really well, I stopped my pain killers pretty quickly, the wound has healed well and swelling seems to have gone down (pleased to report it is no longer square shaped!). I have been struck with a nasty cold and cough but I think that’s more to do with the time of year, and the bugs going around, than anything to do with recovery.

I have already been into the unit once since the operation to have my dressings removed and my wound checked. So, I have already seen my left breast without it’s nipple. No great surprise there, it now looks just like the right one – there’s something to be said for symmetry.

It’s strange how being on a journey like this (where something is threatening your life) how quickly you can adapt to losing a part of you permanently. I think you just see it as collateral damage in a bigger battle you are determined to win and as a result you don’t mourn it’s loss.

So, as per before, I received an appointment to go and see the surgeon and get my pathology results. Dave was abroad so a good friend of mine accompanied me for moral support and as another pair of ears to take in any imparted information.

I wasn’t particularly concerned about this appointment to be honest. All I was waiting for was confirmation that the surgeon had achieved clear margins on the 3rd and final tumour and the Her2 results from one of the other tumours previously removed (this had just been missed first time around).

What I should have known by now is that I can’t afford to ‘expect the norm’ on this unpredictable journey.

It turns out she didn’t get the clear margins she was hoping for.

This means there are still cancer cells in my left breast (despite 2 operations) and I still need to have another procedure she referred to as a ‘shave’. (If only she was referring to my top lip!)

This was a blow. I really wanted to avoid more surgery if possible but it seems I can’t.

She recommended that they don’t do the operation now as this will just delay my chemotherapy. Instead I am going to have my 6 or 8 rounds of chemo during which they will do the BRCA gene testing. I will get the results of that test within 8 weeks. If I am BRCA positive they will be recommending a double mastectomy at the end of the chemo anyway which will negate the need for the ‘shave’. If I am BRCA negative (fingers crossed I am) she will do the procedure then and before I start radiotherapy.

I asked her if there was any risk involved in the leaving the cancer cells there. She said not as the chemotherapy may well clear them anyway and even if it doesn’t they will be doing the ‘shave’ at the end.

We discussed the BRCA testing a little further. It seems that under ordinary circumstances the results take 6 months to come through – it is very specialised testing and she thought there was only 1 lab that does it. Apparently because I have bilateral breast cancer (in both boobs) I fall into a category of people that can get their results fast tracked to 8 weeks. Whilst this is good news for me, it’s also slightly alarming as it suggests a sense of urgency in finding out.

This got me thinking that if I happen to be BRCA positive then how do I know I am not sat here with both breast cancer and ovarian cancer? (This is the other thing the BRCA gene can cause). My surgeon had never been asked that question before and stumbled slightly over the response. She assured me that the risks of ovarian cancer with the BRCA gene are lower than the risks of breast cancer but did encourage me to talk to the oncologist about this next week.

I asked whether it was worth me having a scan/blood test for ovarian cancer and whilst she didn’t rule this out, she said also pointed out that if I go down that road and they find anything at all that is not ‘normal’ (ie a small cyst which may not be malignant) they are obliged to check it out and again something like this could delay my chemotherapy treatment.

We did not really reach a conclusion on this train of thought, I think I need to pick it up again with the oncologist next week.

The slight problem for a patient like me is that each division of the NHS is extremely specialised and brilliant at what they do, but on this kind of journey you cross divisions.

My surgeon is fantastic as looking at a diagnosis and deciding how best to remove the cancer. You then move to the oncologist who is undoubtedly an expert at eradicating any remaining cancer cells and trying to stop it coming back.

The problem is when you have something like the BRCA gene testing lying over the top of both of those things, neither division is an expert in that area so suddenly you have questions that possibly no-one has come across before. The experts on gene testing are in Birmingham but I’m sure they are not experts in treating cancer and I don’t have the luxury of time to see them.

It’s difficult to get a holistic approach. The individuals in each area are fantastic but the very fact you are moving from one department to the other means there is nobody to totally oversee your case from start to finish. I understand why this can’t happen but it does leave you having to make a few decisions for yourself. Do I push for a test for Ovarian cancer just to put my mind at rest or do I ignore the fact there’s a slim chance I might have that too and just press on with treatment for the cancer I do know I have?

The answer is I don’t know.

I’m hoping a few blanks might be filled in by the oncologist next Wednesday.

In the meantime, I’m back at work so I don’t have time to dwell on this question for too long. (It’s a deliberate strategy)

I have sales people to go out with, recruitment to do and targets to hit.

I can’t tell you how nice it is to just think about that, at least until the oncologist gives me another raft of information to process next week.