6 weeks (and a bit) into the hostage crisis

(The title won’t make sense unless you read the last post where I said that I don’t think of cancer as a journey so much as being taken hostage after a hijacking. I don’t think of my situation as a crisis, but I haven’t had any of the scary treatments yet. Surgery I can/did deal with; the idea of chemo and radiation freaks me out.)

Well, I’m 6 weeks into this, and I still don’t know where I’m at. I’m still waiting for the Oncotype DX test results which will determine if I need chemo.  I didn’t mind the wait during the first week because when it comes down to it this waiting period  allows me to continue life as normal (sort of). The second week I read too much – most clinical studies – and depressed myself. Now in the 3rd week of waiting, I’m feeling more relaxed and focusing on seeing friends. It has helped to be back at work and more mobile again. On the whole I’m a lot more positive this week.

Before the surgery we thought I had a grade 2 tumour, but after the doctors got their hands on the whole thing it was determined to be a grade 3. It has to be the single worst upgrade you can get in life. It’s a game changer.

I had punched all my results into the NHS Predict tool to find out what my likely prognosis might be based on the then grade 2 tumour. I haven’t spoken to any doctor about my individual prognosis, so everything that comes next is little more than speculative.

NHS Predict gave me this for a Grade 2 tumour after keying in information about my tumour size, grade, age, hormone and Her2 senstivity and lymph nodes.

grade-2-prognosis

Those seemed like pretty good odds to me. It made me question whether any adjuvant treatment is really necessary. Then I looked at the deal for a grade 3 tumor and I got this:

grade-3-prognosis

Not bad, but I can’t say I’m crazy about that 10-year survival rate, but 88% with Tamoxifen and chemo seems ok. This tool doesn’t answer some obvious questions. What on earth is the morbidity rate? Is it 10 good years? How many of these 78% (or 88% for that matter) are dealing with a recurrence and simply haven’t died? It’s not good enough to just live – not saying I don’t want to – but I’d like more clarity.

Also this tool gives information about the added benefit of chemo and endocrine therapy only, but I am not sure if it assumes people are getting radiotherapy or not. I can’t seem to find that out and I have not directed that question to the horse’s mouth.

I found an article that looked at survival rates among women who refused adjuvant therapies and the results weren’t pretty. Someone made the point that chemo is very expensive and they wouldn’t put me through it for nothing. Also, I keep reminding myself that this Oncotype DX test is a worthwhile thing and I should believe in the results and just go with the advice.

Do you see the circular pattern? All this goes round and round in my head. A good way to break it, I found, was to go see La La Land. I don’t usually like musicals, but this one was pure escapism. I didn’t think of the “C word” the whole time I watched it, so on that basis, I recommend it!

Waiting for results is somehow worse than getting them.

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