It starts

Once upon a time there was no breast cancer. Well there probably was, but I didn’t know about it. Here we are in early April, diagnosed, stage 1 of my treatment completed (wide area excision plus sentinel lymph node biopsy), a few days away from the dreaded pathology report and decisions on what comes next. I thought it might help me to write a blog, in particular to explore my thoughts, hopes, and fears. 

I am mid 60s, fit, active, and have enjoyed the feeling of being in complete control of my life. I am happy, otherwise healthy, no other worries. 
January 10th was a day like any other day, except I had my routine mammogram. I remember wondering if I would bother to have them once I dropped off automatic recall, as I had always been ok. 10 days later there is a suspicious looking letter waiting for me. Odd, when I had asked for a result by email. Recall to the breast clinic, allow 4 hours. Desperate poking of breasts reveals absolutely nothing. 

At the breast clinic, I am told there is a suspicious lump in my right breast. I have more mammograms, ultrasound, biopsy. I am left in no doubt it’s likely to be cancer but encouraged that it’s small, my lymph nodes don’t seem enlarged, and they are giving me positive vibes about treatment. 
Another couple of weeks later, a few more bricks fall out of the wall when they tell me it’s triple negative and grade 3. Surgery first. Chemo is “a possibility” “tbc”. I read up on this extensively and find chemo is usually advised for TNBC unless it’s very small. At this point I think we are looking at 14mm so we are T1c if no lymph node involvement. I joke that the cancer is Boris  I want to get rid of him but hope he hasn’t left me with any babies.

The date for surgery comes round. Long day, but day surgery. Wire insertion, as it’s going to be wire guided. Radioactive injection for sentinel node tracing, then the operation itself. Wake up delighted to find there is just 1 incision, on the outside of my breast, from which they had removed the tumour and 3 lymph nodes. They haven’t cut around my nipple which seems a common thing (let’s minimise scarring, never mind whether we destroy feeling). Apart from bruising, a residual blue stain from the tracing dye, and a nice line of glue, I have come out of this bit remarkably well. Full movement of arm, and I was more or less back to normal the day after surgery, other than needing to wear a sports bra 24x7 and having had to take a couple of weeks or so away from running, swimming etc. 

Now comes the difficult bit. When I go back for my follow up, I expect to be advised to have chemo. This particular cancer has a high recurrence rate, with early metastasis, and no targeted treatments. Those who die of it typically die in the first 2-5 years after diagnosis. I have access to a lot of medical resources, and it’s fairly obvious that chemo, to misquote President Macron, is quasi-ineffective. Basically it reduces the relative risk of death from recurrence by about a quarter to a third. Relative risk is useless unless you know the absolute risk, and I don’t know for certain what my absolute risk is, as in particular I don’t know what (if anything) lay in the lymph nodes. But NHS Predict Breast encourages me that it will be relatively low if there’s no lymph node involvement.  If there’s cancer in my lymph nodes I will have chemo. But I vacillate from day to day about what to do if the lymph nodes are clear. Sometimes I think hit me aggressively with all you’ve got, because I want to maximise my chances of living. Other days I wonder how many quality years I have left, and about whether the cancer will return despite chemo. I don’t want to waste a significant portion of my remaining healthy time being ill with chemo if I am one of those who will die of it anyway (or indeed of other causes in the next few years). I am terrified of maiming myself for the rest of my life through chemo - unresolved peripheral neuropathy from taxanes, heart damage from anthracyclines - yet these seem to be the most effective forms of chemo for my TNBC. Who knew I would be contemplating poisoning myself with synthesised yew poison, because that’s what taxanes are.  I have built a quality of life model that shows it’s a really, really marginal decision based on my current assumptions.

it’s going to be an interesting appointment. Not sure many people are likely to turn up to their appointment with a spreadsheet demanding data for the inputs into their model. It’s probably worth mentioning my background is mathematics. 

Anonymous