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This Prostate Cancer Awareness Month we’ll be sharing two blogs stories written by our volunteer cancer information reviewers about their experience with prostate cancer. In this first blog, Alan shares his story of advanced prostate cancer and how his support network and positive outlook have helped him cope with cancer.
Prior to summer 2015 I had no idea that I had a problem with my health. I walked regularly with my wife and cycled. I did go to the toilet 2 or 3 times a night, but didn’t think this was a problem. In June I started to notice I was getting more back pain and stiffness, together with occasional constipation. I visited my GP at the end of July, but we both assumed the problem was stomach related.
At the end of August, I suddenly developed double vision – no pain, I just couldn’t see clearly. After a visit to my GP the following morning, she arranged for me to have tests at the local hospital later that day. At a follow-up appointment two weeks later, she arranged an MRI scan of my head. I got my results the following day, and learnt the MRI showed a growth in my skull.
I was referred to a brain surgeon within a week, and he arranged further scans. I had x-rays, CT scans, and another MRI scan of my head and abdomen. The result of these tests was a diagnosis of advanced prostate cancer with secondary growths in lymph nodes, and two bone growths - one behind my nose, and one on my spine. At this stage my PSA level was 590.
The urology oncology team discussed my case, and wanted to start me on hormone therapy immediately. I have received injections of hormone therapy every four weeks since. They will continue for the rest of my life.
The week after starting treatment I met the oncology nurse to discuss my cancer. I have had meetings with this nurse regularly ever since. It is very comforting to know that he is completely familiar with my case and how I have been feeling at every stage. I told him about the pain in my back and was immediately admitted to the emergency department (A&E).
He explained that the weakness in my leg indicated that the tumour on my spine was starting to press on the spinal cord, which could become serious if not treated. Within 24 hours, I had my first dose of radiotherapy on my spine. In total I received five doses on each tumour. Before the treatment was completed, the pain in my spine was gone and the double vision had improved enormously. The only side effects I noticed were a chesty cough and losing a patch of hair on either side of my head where the radiotherapy had been.
When I was admitted to the Beatson hospital, I was told that there was a Macmillan Centre where patients and their friends and relatives could go to relax. This facility turned into my favourite place. I would go there every afternoon with my wife, and then in the evening I would go myself to relax and read in comfortable surroundings.
Following radiotherapy, I returned home and basically continued with life. I felt much weaker, but continued to walk and cycle - just much shorter distances. It was a case of making sure I didn’t overdo any exercise. I started lying on my bed for an hour after lunch to stretch my back and just think quietly.
Just before Christmas, I met with the consultant to discuss starting chemotherapy. Around this time I also started to have a loss of appetite – not ideal for Christmas dinner! I had 6 doses of chemo at 3 weekly intervals. It went by with no real fuss. It is common to read about all the side effects of chemo, but I was very lucky. I was cautious not to do too much, and continued to go to bed for an hour in the afternoon just to stretch and relax.
I have had side effects of the treatments - I lost appetite for a while, I was tired, couldn't exercise as much, and I continue to have hot flushes. However, for the last 18 months I have had no appetite problems and the tiredness is gone. I now walk 4 miles when I can and I cycle when the weather allows it. Not to an Olympic standard, but I am 68! I never did lose the hair on my head - some chest hair, but who cares about that? I now live a normal life, but with the knowledge that I have cancer that is incurable, but treatable.
I am an optimist - quite a few people have commented on my positive attitude, and I believe this is helping me to fight this disease. In the last year I have started to go to a yoga class, and a Chi Gong class. Both of these work towards calming the mind, and I have found them extremely beneficial.
I have been fortunate with the support I have had from relatives and friends, and especially my wife. I have had excellent support and treatment from the NHS – starting with the GP, ophthalmologist and brain surgeon and then my urology oncology team. I also find the Online Community extremely useful and check it most days. Because of all these people, I continue to live a normal life with the knowledge that the cancer is inside me, but isn’t stopping me from enjoying my life.
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Great blood Alan. I presume your PSA is very low currently?
Hope you continue to enjoy life for a long time to come.
Yes, My PSA did drop dramatically after I completed radiotherapy, to 390 at the end of 2015, then after chemo early in 2016 it dropped to 250, and over the next few months to around 20 at the end of 2016. It stayed at that level for about a year, but in the last few months it has started to edge up again.
This wasn't a surprise, my oncology nurse had warned me that the cancer would try again, so I am now waiting for scans, prior to a review of my treatment. The options are probably going to be a tablet in addition to the hormone injections I've always had, or further chemo. The main thing is that I still feel fine, so we'll continue the fight with this beast!!
Great blog Alan and v comforting
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