Peter goes nuclear - a prostate cancer diary

Prostate cancer - Conveniences and inconveniencies

My initial concerns welled from a need to spend too may pennies in the night. Eight years later the nocturnal calls persist, despite treatment. But at least the swelling of the gland that persists is probably down to age as much as the cancer. It just means planning journeys differently - where are the nearest conveniences? Never leave a pub or a restaurant without taking advantage. If you happen to be with guests, better to say your goodbyes and explain you need to make yourself 'comfortable' and that you may be a while. I learned the need to do that after a splendid lunch not long after my first course of treatment back in 2015, when I left a pal stranded in the foyer of a delightful hotel overlooking the entrance to Poole Harbour.

It is not just diminished control over your bladder you need to be aware of. But I had an eight-week course of conventional radiotherapy in October 2015, which resulted in peripheral damage to my colon - leaving it delicate and inflamed. My treatment started with hormone therapy targeted at my nuts to kill of my testosterone - which 'feeds' the prostate cancer. That was very successful with my prostate specific antigen dropping to near zero from 22 quite quickly. But that did not deal with the cancer cells. Surgery was ruled out due to spread. The recommended action was radiotherapy. That required tattoos - so small - I couldn't see them, but the radiologists could and used then to 'aim' the radiotherapy device at the infected area.

That treatment had a hilarious side. There was me - finding it difficult to maintain bladder control through the night, and I was asked to drink one-and-a half litres of water every morning, five days a week, for eight repeat eight weeks prior to being splayed on the treatment table for what seemed an eternity. Then it was a dash.....to avoid a splash. You might have thought that the conveniences were in the treatment suite. Unfortunately not, the facilities were designed for breast cancer treatment! So, the call of nature often involved a trot across the waiting area in scrubs before an audience of bewildered gazes.

A year later, a burning sensation developed in my colon and my GP referred me for a colonoscopy. The results showed nothing adverse other than an inflammation of the lower bowel known as 'Radiation proctitis' - not a pretty sight.

But the doctors were satisfied that medically I needed no further treatment on that account. Just keep off foods that might irritate the bowel - not so many peanuts, poorly digested crisps and so on. (Nuts again!)

Learning to live with these inconveniences has been all part of a process for me of continuing to enjoy life, albeit differently. I don't want to trivialise them, but with brilliant NHS medical care, a large loving family and caring friends you can get through it. Tomorrow, joy of joys, I will be discharged from the health and safety requirements of my first dose of radioactive medicine and be able to give all my family and friends, including the grandchildren a hug.

 

 

 

Excited by knowing the radioactive medicine reached my cancer cells

This treatment is exciting. The medics and technicians can see more or less precisely where the medicine has gone. That to me is amazing. So how is it done? On Day 1, as I reported in my first blog, I was given my first dose of 177Lu-PSMA-617 - a radioactive medicine that targets and attacks prostate cancer molecules. Unpicking that, the fluid which was pumped into my arm comprises a tracer that attaches to a Prostate Specific Membrane Antigen plus the radioactive medicine that starts to attack the cell and hopefully kill it off. I am now radioactive for seven days and carry a card to prove it. There are lots of dos and donts resulting from this new state for me. But more of that later. On Day 2 the medics wasted no time while I am radioactive to take detailed images of what radioactivity I am emitting and from where. I spent nearly two hours trussed up like a chicken in a special scanner. The results were than compared with those taken pre-treatment to check where the cancers cells were in my body. They had a match. That procedure will be repeated the day after each six-weekly treatment. The results will show how successful or not the treatment has been.

I am still wrestling with the idea of why me when this treatment is still on trial in the UK. From my chats with my consultant, it was becoming clear that a drug called Darolutamide was no longer suppressing the cancer. My PSA was starting to rise above the trigger level of 2 six-months ago and is now six-times higher than that. There were uncertainties about whether the trial would be re-opened. They vapourised. I started to do so some on-line resarch.

I found clues as to my condition in a decision of the UK Medicines and Healthcare Products Regulatory Agency published on 5 April 2022. It was entitled "Lutetium (177Lu) vipivotide tetraxetan in the treatment of prostate-specific membrane antigen (PSMA)-positive metastatic castration-resistant prostate cancer (mCRPC)". I don't wish to raise alarm you chaps, but this is the first time I have heard that my cancer was CASTRATION-RESISTANT. I shall be having words about this at my next consultation. But there is no point in concealing the fact that prostate cancer is not sex-life enhancing, at least not for me. But hey, we have been blessed with four children and nine grandchildren and an ongoing rich and fulfilling life.

Nevertheless, my private parts are not what they used to be, and that is something my wife and I have learned to live with amicably. Castration-resistant, however, came as a bit of a shock. I prefer to focus on the reasons why the decision was taken. In lay terms my cancer has spread and is not responding to previous treatment, so authorisation has been given to extend its use to patients like me.

Hurrah, even if they have been targeting my nuts.

 

Going nuclear - targeted molecular radioactive therapy - Day 1

Yesterday I went nuclear. My prostate cancer, first diagnosed in January 2015, is no longer responding properly to treatment. My NHS Consultant suggested joining a drugs trial called PSMAfore. After lots of tests and scans, I had my first dose of 177Lu-PSMA-617 - a radioactive medicine that targets and attacks prostate cancer molecules. I feel a fraud. I enjoy rude health, apparently. But what’s going inside my body needs tackling. So I’m going to restart blogging to record what’s happening to me, and the extraordinary work going on around the world to provide better care for people like me and possibly you. My story started with me peeing at night in 2014 and wondering silently did I have CANCER. I said nothing to anyone. It was the run up to Christmas. But immediately after New Year, I rang our local NHS GP.

I was a little apprehensive. My late Father did the same in 1952. He was, to put it politely, fobbed off. He died six months later of colon cancer on 17 April 1953. I was just seven years old. But, I needn't have worried in 2015. My GP listened kindly as I set out my symptoms - waking up at night wanting to got to the loo very frequently. He donned a rubber glove, explained he need to examine my rectum - a procedure known as Digital Rectal Examination (DRE). So, I dropped my trousers and lay on his couch. My prostate gland was swollen. Next step, a blood test to check my Prostate Specific Antigen (PSA) level - a crude but helpful pointer to a possible prostate cancer.

That led to an all-body scan – my skeleton was mercifully cancer-free, next a prostate gland biopsy - long strands of flesh extracted with a sort of apple-corer barely 1 millimetre in diameter. Diagnosis - an aggressive prostate cancer requiring immediate hormone treatment. But surgery was ruled out as the cancer was already seen in an adjacent seminal gland - so it was on the move.

Today, seven-and a half years later, I learned that in the last three months, the cancer after having been suppressed through radiotherapy and hormone treatments has escaped into and through my lymph glands and is showing up in my pelvis and spine. The good news is that the first dose of 177Lu-PSMA-617 has attacked every cancer molecule in my body.

This treatment is administered six times in a six week-weekly cycle, so it is far too soon to tell whether it will work for me. But what I am sure about is that we guys just need to talk openly a lot more about this disease, like broadcaster Bill Turnbull, who died of it recently. One of my pals who commented on my Facebook post last night, has revealed that that post alone crystallised his thinking about his own condition. That alone makes me very happy.