Once, my diagnosis had been shared, I was fortunate to be given a choice of treatment. Either Hormone Therapy followed by radiotherapy or an operation.
Sitting in the consulting room with my head still spinning from the shock of the diagnosis, my immediate gut reaction was to go for the hormone therapy. I didn’t feel that the operation was right for me.
However, I was given lots of information about both options through @Prostate Cancer UK booklets and also through information from @Macmillan Cancer Support. I was also offered the chance to meet the consultants who led on each option.
We had decided that at this stage we would not share the news of the diagnosis with our family because we did not have a complete picture of the situation, the treatment or whether the cancer had spread. (I will share more on this in another blog.)
We did contact a close friend and ex-colleague who themselves had prostate cancer a few years previously. This was a good decision, and he has been very helpful in sharing his experience and offering insights.
Going back to the booklets, I discovered that I wasn’t ready to read them. I think I was genuinely in shock and denial and reading things made it real-which I wasn’t ready for. So, Sarah read them and shared with me the key information and was able to do so in a managed way recognising when I was able to take things in.
The day after my diagnosis at the start of February (on my birthday!) we went away for a week on a long time planned special 70th birthday holiday to fulfil a lifetime ambition to go to the original Doctor Who Convention in Los Angeles and to spend time walking on Venice Beach. This time and space turned out to be so important and think we were incredibly fortunate that it happened. (By the way, I think walking on a beach is always a very good place to think and reflect.)
On our return, we contacted our key link person, the urology oncology advanced clinical practitioner, at the hospital to say that I would go ahead with the hormone therapy and radiotherapy option. We met with them within days and things went into motion immediately. I would have a PET scan which would show whether the cancer had spread beyond the prostate which happened at the end of February. Immediately after the scan, I would be able to start taking the hormone medication and I was given a prescription for Relugolix and talked through the possible side effects of taking this drug.
The main side effects that I have experienced have been:
-Hot sweats numerous times during a day. An interesting experience which Sarah regularly reminds me is the norm for many women so no sympathy there!
-Hair loss from my legs, arms and back! I have always been ’blessed’ with a hairy body but losing hair from these areas hasn’t been an issue and, in some ways, has been a positive!
In the scheme of things these are both minor issues.
The appointment for the PET scan came quickly and this happened at Oxford. When the results came back it showed that the cancer was in the prostate and in the surrounding seminal vesicles. The overwhelming emotions were of relief that it hadn’t spread further and also gratitude and appreciation that the PSA test had happened quickly and had set off the trail of events which led to an early diagnosis.
Once all the information had been gathered, I had my initial appointment with the consultant in March which was our first experience of the Oxford University Hospital Radiotherapy Centre at The Great Western Hospital in Swindon. A place we would get to know very well in the coming months. Sarah has come with me on all appointments, and this has been really important. There are so many emotions going through you when you are talking with any medical professional and it is easy to only hear part of what you are being told or only hear the negative things or only the positive things. Having that second pair of ears in meetings has really helped to ensure that everything is heard. We always talk about the questions we want to ask and have them written down. Sarah has been able to ask questions from her perspective as well as mine.
The consultant was brilliant from the start and made us both feel at ease but also confident. She talked about the early diagnosis meaning that it was a cancer that could be cured.
She talked with us about the process and possible time scales and about the option of taking a second drug- Abiraterone which in trials had reduced the chances of the prostate cancer returning by 40%. I would also have to take steroids alongside this drug. She talked through the possible side effects and that there would be regular blood tests and blood pressure measurements and that I would continue taking all three drugs for approximately two years. We decided it was certainly worth taking this opportunity.
I see the consultant monthly, always preceded by blood tests. I have reacted well to the medication and my PSA has fallen consistently over six months to 0.02 prior to me starting radiotherapy toward the end of July.
My main side effect has been as a result of the steroids, which have increased my blood sugar levels. I did get emotional about this as I had been type 2 diabetic for many years but over the previous three years had lost significant weight and reduced my blood sugar levels enough to no longer take diabetic medication. I am back on that medication again but have come to terms with it being a necessary thing in the short term, while the other drugs are dealing with the cancer.
I feel incredibly grateful that I had a choice of treatments and feel that the hormone therapy has so far been the right one for me.
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