Wednesday 28 October 2020

David update: the late October version

 Since I posted about David's 3 month post op PSA test, he has had a further test where the reading had increased by a third from 0.15 to 0.2 - this could be within the margin of error and apparently the level does fluctuate. But when the level gets to 0.2, any cancerous cells can be detected in a PET scan. Bloody hell, this man is proving costly ...

A bit of a false start for having the scan. The first attempt was thwarted because the radioative isotopes hadn't arrived in the country - I think that is what the woman said. But she only said it when we had got up early and driven for 1 hour and 45 minutes in nose to tail commuter traffic (I was going to say rush hour, but it certainly had no rushing, that is for sure) to get there for 8.45am. 

The second time, a week later, because these scans are only done on Thursdays, we went in by motorhome on Wednesday afternoon and stayed overnight at the NZMCA park in Plimmerton - that is more than halfway in to Wellington from here and meant we could rely on the journey being shorter and less stressful. And it was a lovely evening in Plimmerton which required a walk though the village and along the beach.

That's the CROW on the right - facing into the setting sun.

It's a popular place - at $3 a person per night. Your vehicle needs to be self contained as there are no facilities except water and grey and black water disposal.

In the foreground is Mana Island, the sun is going down over the South Island - it looks very close in this light!

Traffic was far less congested this time, so we had plenty of time to spare, and I left David in the motorhome in the Bowen Hospital parking area and walked to the local station - I had an osteopath appointment in the city. Free travel in using my GoldCard, free parking at the hospital - what's not to like except the $3k cost of the PET scan?

We had thought that David would be able to come back to have a lie down in the motorhome while he waited for the radioactive stuff to course through his system, but he texted to say he was in a hospital gown with a gaping rear view and a cannula in his arm, so he was lying down in the hospital ... Wise choice, I reckon!

I got back to the motorhome before David did and made a very late breakfast for us both - lots of fruit for David, who'd had to fast from the night before, and sourdough toast with tomato for me. David somehow found getting back to the motorhome a bit tricky - in spite of it being pretty much in a straight line from the main doors (albeit down a slight hill), he first of all went too many floors down in the lift, then when he finally found the door he'd entered by 3 hours before, he managed to deviate off the route back and found himself going down  to the lower ground part of the hospital again (Bowen Hospital is, unsurprisingly given it's Wellington) built on the side of a hill...) Back up the hill. and then he took the only option left to him and finally found it - considering it was the biggest thing in the carpark, I was a bit surprised he'd not managed it; but on thinking about it, I realised that it was par for the course for an absentminded boffin to not be able to retrace his footsteps.

We had exepcted we would have to wait some time for the results to come through, but they appeared on the medical records website before the weekend. And on Labour Day Monday, a public holiday, we had a call from the urologist to explain.

My apologies if this next bit reads a bit like a project update report … I thought it was probably easier to digest if it was set out like this instead of long paragraphs. And apart from that, it has helped me to clarify the information.

In our Monday afternoon call with the urologist, about David’s PETscan results, he gave us this info:
  • there are cancer cells in a lymph node that is located within the pelvic area, about a couple of inches below the navel.
    • the faint avidity (as it was identified in the scan and reported in the summary of findings) means that the tumour is very very small (the lymph node is no bigger than 5 - 8mm)
    • it is about what he would expect with a PSA reading of 0.2 (my question)
    • he cannot tell whether it was there before surgery or whether it has developed since (David’s question)
  • until PET scans were available, tumours of this size would not have been visible and therefore would not have been treated
    • there is still no statistical evidence that treating them at this early stage increases life expectancy (it’s apparently too soon to have enough data)
  • He is referring David to a radiotherapy oncologist at Bowen Hospital so we can have a consultation with him and get his opinion about whether treatment is advisable and when he would recommend it
    • we will hear from the oncologist soon - time unspecified
  • The urologist is not handing David’s care over to the oncologist
    • he wants to see David in 6 months for a follow up with a PSA test.
I asked the following:
  • given the PSA reading was higher than expected after the surgery, does this mean the cancer is aggressive?
    • His response: well, it’s a grade 3 (not grade 5 - very aggressive) so it’s moderately aggressive, and I expect it will grow, but we don’t know how fast.
      • David’s and my thinking based on his other statements: 
        • because he is planning a follow up consultation in 6 months, it isn’t rampant
        • there’s no need to be panicked into demanding to have radiation
  • given you can tell that we like to have full information, is there anything we have not asked (because we don’t know to ask it) that you can tell us?
    • his response: he laughed, and then said No, not that he can think of;
    • my supplementary request was that if he thought of anything, could he please drop us an email. He agreed he would.
Our plan, formulated since we got off the phone with Rod:
  • Diet:
    • Keep on with the raw veg/fruit/nuts diet, i.e. BIG salads (that are heavy on cruciferous greens) for lunch and dinner, fruit smoothie at breakfast (banana, kiwifruit, mandarin, tamarillo, cranberries, boysenberries or blueberries, cashew nuts, plus wheatgrass powder, amla powder and teff)
    • Keep on with the 1.5 litre of raw veg juice each day
    • Keep on with the supplements as prescribed by Lesley and the Chris Beat Cancer book as recommended by Jaq Biggs
    • no cooked food (apart from mushrooms, tomatoes and homemade 5 seed crackers) until the 3 months is up - on about 1 Jan
      • David plans on staying vegan for the foreseeable future, and he is very happy to do so.
        • he will go back on to coconut yoghurt after New Year, but in limited quantities because he needs to keep his fat intake low
        • I am doing the vegetarian thing which means I can still eat dairy
  • Monitoring PSA levels:
    • David has found out that for $17 a time, he can self refer for PSA tests, so he is going to have them monthly, starting on 5 Nov (last one was on 5 Oct)
  • Oncologist:
    • Have the consultation with the oncologist and get his thinking
    • Before that, we need to 
      • research the effects of radiation on the body, both short and long term
      • identify the information we need from the oncologist so David can decide what he wants to do re radiation yes or no, and if yes, when.

I think that covers it. Any questions, just ask.

By the way, David is in very good spirits -

it is uncertainty that knocks him around; so now he knows what is what and the next steps are sorted, he is chirpy! A bit pissed off he cannot have cheese scones, but apart from that ...

By the way, I am finding the new version of Blogger a bit of a bugger - probably partly explains why I am not posting as regularly. I get grumpy about the photos not appearing where I set the cursor, but showing up at the bottom of the post instead, so I have to move them. Also it used to be that all of the photos I would upload would sit in one place and I could then choose which ones to position where in the post. But now, it loads them into a different window each time. Does anyone else have these hassles? And how have you overcome them? Is it just patience that I am lacking?