Scanxiety – Wozzers Journey with Cancer

40 – Cancer Scan Anxiety and Scanxiety

10 November 2022

I’d touched on the scan and especially reporting delays in my last post. And it appears to becoming an issue countrywide. One cancer patient I’m in touch with, was still waiting for his scan report, almost 3 months after the scan – and almost in time for his next scan!

So, what on earth is going on?

The system seems to be that once a patient has a scan, the images are interpreted by a Radiologist who then writes a report and forwards said report to the specialist doctor. The doctor then considers the report and decides on the best treatment for the patient.

All good and the system worked pretty well, until what appears to be a backlog due to a combination of Covid delays and lack of trained personnel.

I did a bit of delving, but didn’t get very far with my local NHS Trust. Certainly not without making a ‘Freedom of Information’ request. And I don’t have the energy or inclination, for all of that.

But, talking to a doctor recently, it’s clear that scan reporting is likely to be an ongoing issue for the foreseeable future.

As he put it to me ‘They can keep producing scanning units every day, but it takes around 10 years to fully train a Radiologist to interpret scans professionally’.

In a way then, my 3.5 weeks wait for the results wasn’t a long time in the big scheme of things, but an eternity in terms of anxiety, not knowing how things are.

And unfortunately, it wasn’t the news I was hoping for. The 18 weeks of chemotherapy didn’t shrink any of the tumours, and in fact the largest (Tom) had increased in size by some 50% from 40mm to almost 60mm. Dr Grant was also very disappointed by the results.

If there are any positives to take from this, no further spread has been detected. Whether that’s due to the chemo or just natural, is impossible to tell right now, but suffice to say that because the first-line (chemo) treatment was unsuccessful, then some careful consideration had to be given to the next steps.

These ranged from pause treatment for a few months and then scan again; use a different type of chemo or start with a course of Immunotherapy. We discussed the options and agreed to run with the latter. So later this month, I’ll be back for bi-weekly infusions of a drug named Nivolumab.

I begin next week 16^th November – with preliminary checks and tests and then my first infusion is scheduled for 21^st November and then every 2 weeks after that. I guess quite a bit depends on how I react to the treatment.

Dr Grant tells me that I have to be aware of anything ending in ‘itis’ (inflammation) i.e. dermatitis, colitis, hepatitis etc. This is because the drug alters the body’s own immune system and while generally well tolerated, it can have quite unpredictable and serious effects

Anyway, I’m sure I’ll learn a lot more in the next few weeks – if nothing else I’ll have lots more material for my blog 😊

So, all being well, I’ll write an update after my second cycle in December. Until then, wherever in the world you are – take care x

39 -FU2 Chemo and Scanxiety

12 October 2022

Ooh, I didn’t realise how long it’s been since my last post back in August. They say time flies when you’re enjoying yourself…

Well, I wouldn’t quite call it ‘enjoying myself’, as I’ve been on Chemotherapy continuously for the past 10 weeks. In fairness it hasn’t been so bad for me – I’ve had few side-effects, but still got all my hair and appetite.

Of course, it’ll take much, much more to stop me eating than a few doses of chemo!

I’m absolutely convinced that the Beerotherapy has helped, if only that following high doses of beer, I seem to forget about what’s up with me.

I might have also forgotten to tell my GP about the beer. She spoke to me a couple of weeks ago and says I’m ‘defying science’ when considering my treatment regime. I think my body has defied science for many years really, but I’m taking this latest medical opinion wholeheartedly!

As I write this, I’ve just started my sixth cycle of chemo. Each cycle is 3 weeks and goes something like:
Week 1 (Mondays) - I get two infusions in hospital – Carboplatin and Fluoroucil 5FU along with anti-sickness medication and Dexamethasone steroid, which I also get tablets to take at home.
Week 2 – No new infusions or drugs, just feel the treatments working (feeling of fatigue and occasional sickness), along with forgetfulness which I blame on the chemo, but really I suppose it’s a function of age ☹
Week 3 – This is a so-called recovery week where my body regains its white blood cells and has increased immunity from infection.

At the end of Week 3, I’m back in hospital on the Friday for blood samples and the consultant checks that I’m fit and well enough to start the poisoning cycle again on the following Monday!

So, being in my sixth cycle of chemo, I think this is the last for now. The regimen calls for six cycles of 3 weeks (18 weeks total) and then evaluation of the treatment and its success (or not) of slowing the growth of existing tumours and any spread to further parts of the body.

Evaluation is done by taking CT scans, which I had at the end of September and then my consultant Dr Grant, decides on the next steps. This could be more of the same to follow-on, a break in chemo and then restart when my body recovers or a completely different treatment.

That was a simple enough paragraph to write, but the actuality is more complex and frustrating.

It seems that post-covid the NHS are under pressure to increase scanning for many patients, especially those with cancer (or initial scans to find out) – and this appears to be happening 7 days a week here. This is the good news.

The not so good news is that the next step in the chain is the ‘Radiologist Principal Interpreter’ (as they’re called here in Gloucestershire), to write a report detailing what the scans show. It is this report that goes to my consultant for him to decide on prognosis and treatment.

But now we’re in a position that the Radiologists are completely overwhelmed with the higher volume of scans to interpret, meaning there are lengthy delays in getting these to the consultant.

Which is where I’m at right now – with no report available after almost 3 weeks and not knowing how I’m doing, or what happens next.

Hoping to know more soon(ish) and write an update on this in a week or so.

Normally the go-to chemotherapy for my type of primary and therefore secondary cancer, officially known as ‘head and neck squamous cell carcinoma’ is a long-standing treatment called Cisplatin. It’s a platinum-based drug and very toxic – especially to kidneys. And it was determined early on in the process that my kidneys might be damaged, to the point that I’d be worse off with renal failure than the cancer!

In fairness, my poor old kidneys have worked pretty dammed hard, filtering probably far too much alcohol over many sessions. Seemed great at the time though!

So, Cisplatin definitely isn’t for me. The alternative is two drugs, that when combined attack the cancer cells, but with lower risk to my kidneys. That’s not to say they’re milder – I understand that it’s more like 1+1=3, in that the combinations works better than either drug given in isolation.

For the past so many Mondays, I’m in Prescott Ward at Cheltenham Oncology Centre. It’s a day patient ward for cancer treatment infusions, and we’re in chairs rather than beds. My time there is around 1.5 to 2 hours. The staff – as ever – are amazing and highly professional – even more so because of the Cytotoxic (toxic to cells) drugs they have to handle and dispense. And of course, helping patients with varying stages of cancer.

It starts with a hook-up of a quarter litre of saline, which goes into my PICC line via a pump. This is just to give me a bit more fluid.

Then I get a dose of steroid (Dexamethasone) through the line to help my body resist the immediate effect of the chemo – then finally the Carboplatin is added to my line. It takes exactly 30 minutes for the 570ml of Carboplatin to be administered. That equates to a dose rate of 1140ml per hour.

Following that, the second infusion is the Fluorouracil 5FU. This is highly concentrated and quite strong. So much so that it takes 96 hours to infuse 192ml of 5FU. This equates to a dose rate of just 2ml/hour.

Back in the day patients would be in hospital for 4 days (96 hours) to receive this continuous infusion. But nowadays I have a ‘Baxter Infusor Pump attached to me and my PICC line and it stays connected for the full 96 hours – day and night. I did touch on this in a previous post – but now I’ve detailed some more by request.

The Baxter Infusor elsotomeric pump, to give its full name is known as an OPAT device. OPAT stands for Outpatient parenteral antimicrobial therapy, which simply means self-administration of complex drugs in the community (at home), under telephone helpline supervision.

At night, the pump is placed behind my pillow – but with only a short pipe (the pump that is), I have to be careful about how I move!

The ‘pump’ action is a combination of the pressurised balloon expelling the chemo through the fine tube and a flow regulator that is attached to the PICC line. Between them, they rely on body heat and I suppose a bit of capillary action to keep the flow moving at the correct dose.

FU2 Chemo is inside the balloon. The balloon deflates each day in line with the calibration marks.

On the fourth day – a community / district nurse comes to me at home – timed as close to the 96 hours (from the previous Monday) and disconnects the pump, flushes my PICC line with saline, changes my PICC dressing and then that’s pretty much it until the next cycle.

The empty Baxter infusor still has to be handled carefully and I’m provided with a special container to hold the pump, which I have to take back to hospital for specialised disposal.

And that’s pretty much how the chemo drugs are administered. Hope it helps someone who might be starting this process and hasn’t bored the remainder of my followers of this blog.

Until the next update of scanxiety and what’s coming next for Wozzer…

Take care and stay safe x

27-Learning new words about Cancer

This came about by doing too much of what I shouldn’t - which is hunting around the interweb trying to find information, about things of which only give me an incomplete picture as to what's likely to happen.

Let me back up a bit. My first full scan, post treatment was done last September – and that was a very anxious wait to find out the results.

Good and bad was the outcome of that scan. Good that the throat tumour has diminished – bad that metastatic (secondary cancer) tumours had been found in a couple of locations.

They weren’t deemed ready for treatment then, but another scan was scheduled for January 2021 to see if there’s any further development.

And there is.

No matter that I try and not worry about what I can’t influence, but waiting for that next scan and the outcome, is never ever far from my thoughts. Every day.

That is definitely Scanxiety.

And so I was ever so glad to have my January PET/CT scan and the subsequent appointment to discuss the results. The scan indicates a third tumour showing in my right lung and the original two in the same lung are still developing.

It wasn’t a great shock and I’m now back under the care of my oncologist – the excellent Dr Warren Grant. He phoned me the other day to get my thoughts and to update me on his thinking.

As ever with me, it’s not yet clear-cut. I will be starting treatment again, but right now it’s not definite when, or with what. By this I mean the choice will be either Chemotherapy or the much newer Immunotherapy treatment.

This is another new word for me. Immunotherapy ' which uses substances to stimulate my own body immune system to fight the cancer'. I suppose it's too much to wish these will be ganja-type substances, but one can hope - eh?

The decision depends partly on whether my cancer would be receptive to Immunotherapy and also on the overall effect of how my body will respond to either of the drugs.

That – and the schedule for treatment will become clearer on my next appointment with Dr Grant in mid-February.