6 years into HRT I'm now told to stop???

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Good day fellow gentlemen with this ghastly disease, loving carers, beautiful wives, girlfriends, boyfriends, children and friends, I am new to this group and new to any such group where I have shared my experiences so I am rather pensive. Please therefore bear with me as I reveal my dilemma.

A Brit Citizen, Cardiff born and having been brought up in and lived in Africa all my life (and dealing with the stresses that go with it), I was in Feb of 2014 at the age of 45 diagnosed with metastatic (bone and lymph node) stage 4 prostate cancer. A very simple symptom made me seek medical advice and that was the inability to completely empty my bladder. Go figure! Entirely my own fault for ignoring the symptoms which did indeed go on for several months. Only myself to blame so a good lesson to those who are wise enough to catch it early.

Once diagnosed I was immediately put on a "stampede trial", a combination of HMRT and chemo under the supervision of an Indian oncologist form HCG (Health Care Global) Bangalore who was visiting Kenya on a regular basis. At this stage I was under private medical aid. I was to undergo 8 fractions of chemo but by number 6 my body rejected the drugs and I suffered a nasty anaphylactic reaction. Then followed 3 months of radiotherapy in India. This included tomotherapy to my lymph nodes and cyber knife to my prostate and rib. I learn now (detail below) that this was a "radical" treatment. Just to mention that once my medical aid policy came up for renewal, the premiums sky rocketed and they would not touch me with a barge pole. This being said however I have since the very beginning of my treatment remained on HMRT with a daily tablet and quarterly subcutaneous Zoladex injection.

Losing the privilege of private medical aid, we decided to relocate back to the UK. Now 3 years back and under the treatment of the NHS with an Oncologist at Belfast City Hospital, it was recommended recently that I take a holiday from the HMRT as they feel that the "radical radiotherapy" might have "cured" an incurable disease??? Correct me if I am wrong but is stage 4 not incurable? I am now left extremely confused as they are about to pull my meds. What if the snake rears its ugly head again after having been kept at bay for 6 years? If it does, who is to say they can get it back under control? Does the NHS have the right to make such a life changing decision without further consultation and possible further scans to back up thier theory?

Ant advice would be most highly appreciated. Respect to you all and remain strong and positive.

BW over 2 years ago

Hi Zimbot,

What a fascinating post you have shared. I truly wish I knew the answers to your questions but I confess I don't, just more questions. My partner and I are new to this and I am forever searching for answers and information myself.

You certainly did have "radical" treatment considering it was 6 years ago and being part of the Stampede trial was incredibly fortunate.

As for having your HT stopped, I was wondering if your consultant gave you a solid reason for this? I did read something a while back that may be of interest to you, It was about "Intermittent ADT' and how investigations are being made into delaying the development of hormone resistance in men that have been treated for a few years. As you probably know there is a limit to how long hormone treatment will work long term in a lot of cases. The idea of Intermittent ADT involves the patient having breaks from hormone treatment rather than taking the medication continuously. The idea is that the cancer cells will take longer to build up resistance to the therapy and it could kickstart the body to react again as if HT is a newly introduced treatment after that break. Could it be possible that this is what's happening? It would be worth having this discussion with your consultant. I would also imagine that after having HT for so long it would be an idea to see how your body is performing without it. Has your PSA been rising? or has it stayed consistently down? There is constant change and improvements in treatment and combinations of meds, I would imagine it could be very interesting to see if the treatment and combination of new and "radical" treatment that you originally had, has brought about new information towards a cure for advanced cancers? There's always hope..

Though I do agree with you that you need more information about why and reassurance that if your PSA starts to climb you will immediately be put back on HT. I would ask for another appointment with the consultant or have a second opinion if you feel unsure, this is a reasonable request as you need to understand the reasons as to why.

Best wishes to you and your family, keep us posted on any developments.

Grundo over 2 years ago

Hi Zimbot Interesting post particularly as it is something I have thought about. IE: if the cancer returns after treatment and I ended up on HT indefinitely.

I certainly would consider having a break just to see what happens, obviously you can always go back on again if necessary, and you would be closely monitored.

The other thing to consider would be a second opinion although that may muddle it a bit.

Keep us posted especially if you decide to go down that route

Best wishes

Steve

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6 years into HRT I'm now told to stop???