I'm sorry to hear of your situation - I can see you have also posted in the 'Ask the Nurses' section of this forum and received a reply from a nurse as well as another member of the forum, so I hope that this has been helpful, and that the forum can be of some support to you.
We are always here if you need it so do write things down and reach out to others as much as you'd like to.
Hi Rainbowmolly I'm 63yo diagnosed with advanced metastatic prostate cancer in July which after CT, MRI and bone scan revealed cancer had spread to my spine lower and middle back, neck right arm and shoulder as well as lymph nodes. Never did a biopsy as knew it was aggressive and had spread however initial PSA results where 1,973. My treatments have been monthly Hormone injection which brought it down to 370s where it seemed to plateau. After a short hospital stay when I was in a lot of pain and metastatic spinal cord compression was suspected but ruled out after MRI scan. I was put on a course of enzalutamide tablets as chemo wasn't deemed to be best option for myself and this has brought my PSA down to 2.2. Apart from the short hospital stay feeling okay suffer from erectile dysfunction which can be depressing but as my beautiful wife says its not the be all and end all. Urinate a lot at night and mobility isn't quite what it was but can get by walking and taking a rest where needed. I know that like yourself the outlook is poor I'm not going to cured but hopeful that the treatment I am receiving and the support of my cancer team and family I can enjoy what time I have left and hopeful that I have a few years in me yet.
I just wondered how you are? You are brave to join a support group, my husband, has and will not attend a group either online or in person. He has shared his diagnosis with very few people. I have only just joined this group because I believe sharing is caring, and sometimes just knowing that someone understands the process of prostate cancer investigation and treatment helps. I just wanted to show some support, not as a cancer patient but as the wife of a man who is almost 1 year into prostate cancer treatment. My husband, who is 58 yrs old, was diagnosed in May last year after being admitted to hospital on 6th April 2024 because he couldn't pass urine. Long story short, he was diagnosed with advanced prostate cancer and he was fitted with a permanent catheter due to the size of the prostate, which occluded his urethra so that he could not urinate. The catheter remained in situ until the middle of December 2024. Initially, his PSA was 107, he had 30 biopsies taken, all were positive. His Gleason was T4 N1 M1, after his whole body/bone scan that was revised to T4 N1 M0., We were obviously grateful. So, please try to be positive, sometimes things aren't always as they seem. In my husbands case, just as with yours, there was/is no possibility of removing the prostate, therefore, he began chemotherapy in August 2024 and completed his 6 cycles by December 24. He received chemotherapy every 3 weeks. Chemotherapy took its toll, however, the Filgrastim, which stimulates white blood cell production, was worse than the chemotherapy, it is taken for 5 days following each cycle, and is a self administered injection. This made him feel nauseous and increased pain levels, however, obviously, it is far too beneficial to refuse because chemotherapy kills of the white cells, which are part of the immune system and makes one very susceptible to infections. Thankfully, my husband had not infections and no sickness, nausea after Filgrastim, but no actual vomiting.
All in all the chemotherapy was manageable for him, the main side effect, that still affects him now is peripheral nerve damage, he cannot feel his toes and they ache, his feel and hands are permanently cold. The damage to his nail plate means he has swollen nail beds which bleed and his nails remain lifted. So far none have fallen out. To make sure he does not snage his nails to cause bleeding her wraps micropore take around them.
Currently, he receives hormone therapy every 3 months and the main side effect from that is hot flushes, which are, he says manageable considering his PSA is no 0.04 that is a small price to pay.
My husband is now on the cusp of beginning Radiotherapy, beginning on 4th January, it will be 37 sessions, carried out over 7 weeks of mon-friday with breaks at weekends. How does he feel about this, well, he still works for a couple of days each week, doesn't claim benefits, though he applied for PIP to help with the cost of travel to and from hospital. Which increases dramatically one treatment begins, and tries to maintain as normal a life as possible. However, the Radiotherapy regime is going to be be difficult because he has a 72mile round trip for 5 days each week, this is at a time when his pain and fatigue have increased, his sleep pattern is dreadful, despite the help of sleeping medication.
What would he say to you, he would say, be positive, wait for all of your results before you make any decisions about treatment, if you can survive the biopsies, you can survive anything.Be prepared for an emotional roller-coaster, rest as much as you can, don't sweat the small stuff, try to remain active, walking is a great medicine, try to carry on as normal but remember, you are human and you will be taking some seriously powerful medication, so slow down and know your limits. Some days your limits will be walking the dog and making a cup of tea, accept that and don't feel anyone expects more of you. Try to get family and friends to pitch in to help with travel, appointments can be long and tiring, make sure you keep in touch with your consultants, your appointments will arrive thick and fast,and if you are unsure of anything ask. Make sure your GP is onside, they can be invaluable if you have problems with medication etc.
From me, it all seems like doom and gloom at first. but as time goes by and you settle into your treatment plan, you see there is light at the end of the tunnel, no matter what the prognosis. As the year has progressed my husband and I are far more optimistic because there is evidence that the chemotherapy and hormone therapy have stemmed the spread. Yes, the side effects were not pleasant and heaven knows my husbands emotions, and my own, have been up and down, but my husband is still here and far more optimistic that his will live near enough his normal life span. His consultant put it this way, 'you are young, have no other illnesses and you are trying to remain as active as possible, I see no reason why you should not live your normal life span.' Is that true, we don't know, but it certainly spurred him on in times of despair. So please take heart, you may feel quite despondent at the moment, but things change quickly.
I am hoping that by now you have had your bone scan and have a clearer idea of you treatment plan......I sincerely hope you have support and someone as a sounding board.
Thank you for your kind words I haven’t kept diagnosis from any one of my family only my grandchildren don’t want burden them with what’s going on still what my fun time I’m only just starting my journey a week today told I have cancer and no cure only treatment
