I can have removal or Hormone/Radiotherapy

Hi David (Trainerman001 ), that sounds reasonably positive and having started HT you can relax for a while.  At 69 and with a low Gleason then the PCa should be suppressed for years.  Was any other treatment proposed now?  Don’t forget that not all the side effects are going to happen and apart from the shrinkage and libido most are pretty manageable.  Come back with any questions but I guess your head is still trying to explode with all the info received.  It does get better.  David

Hello Trainerman, I may have missed something in the thread but I don't think you have said whether or not the tumour is contained within the prostate or , to use Brian's terminology, gone walk about? If it is contained you are the same Gleason as my husband 4+3. He had 2 tumours and ? spread ooutside the wall or bulging against it with no secondaries detected. He was told at different times that he would need ht for 6 months, 2 years, 3 years, 18 months. By 18 months he felt life was not worth living so they advised him to stop the HT. There is eveidence to support a shorter period for intermediate risk HT time and evidence to support HT time for high risk. 4+3 =7 intermediate to high - there is no evidence for this!!! (Or that's what we were told!). Yes, he did find the HT miserable and so did I but its not intolerable! In my mind it was better than having him 6 ft under!

So, why not try it and see how you feel? Some men are doing wonderful things and are very little troubled by the HT. Others are not so lucky. You have nothing to lose by giving yourself a chance at stopping or slowing the cancer. 

HTH

I went for removal, click on my profile for full story. 6 months posy prostatectomy.

Hi David (Trainerman001 )

I have been in a very similar situation to that which you find yourself even down to having a hospital that was reluctant to provide detail. You may read how my journey has been by reading my profile, I'm 76 next week.

Maybe I have been one of the lucky ones where the HT & RT side effects have been concerned as I have had a minimum of them. No moobs, half a stone weight gain, penis & scrotum shrinkage (hopefully can be encouraged to return to nearer normal), some muscle weakness, hot flushes (frustrating but not intolerable) and minimal mood swings.  I am now looking towards the slow wearing off of HT effects after this implant period ends in mid January.

Like all who have been in this situation I can only watch my PSA level over the oncoming years with fingers crossed hoping that it does not rise again.

I have a wonderful wife of fifty-four years who understands my situation and has supported me through the last twenty months. 

I wish you all the very best with what ever course you chose.

Rod

Rod I think you just summed up perfectly what I was going to write couldn’t have put any perfectly myself Robert

Hi folks 

thanks to all of you for your knowledge and encouragement. Sorry for the delay in replying but amongst other things I had to do a mercy dash to Heathrow  to bring home a friend whose husband had had a heart attack, and then follow up support.

Back to normal now though and all of your replies have been very helpful and it has been heart warming to read of how the ladies have been involved and so supportive.

I am amazed at Psticks  story. You have done so well and so quickly. Made me think about that option again, but ( like you) there could be a considerable delay and I am concerned about possibility  of nerves cut. Thank you though. A very positive story.

One thing I did not make clear is that I had the scan whereby they inject a radioactive tracer. This was about 4/5 weeks ago and although it took a long time to get results, they said it has not spread yet.

The other thing that puzzles me is that they will not do further PSA test until well after the radiotherapy. I am thinking of trying to get private test(s) as I would like to know where I am now and in the future. I think that this might also let me stop the HT early as I can then keep a close eye on PSA.

There does seem to be suggestion that one can minimise the effects of shrinking bits and muscle loss. I would be keen to know how !

You people are terrific. I did start coming back here to help after my lymphoma but then like an idiot my attendance faded. That will not happen again, and as I go through this I will try to advise and support others.

Is there a way for me to set up my account so that I can get a notification of any new thread that I could contribute to ?

Thanks again. You are the best.

Hi T

Going back to your original post , if the cancer is def contained within the gland then possibly there is an argument for HT for less than 3 years especially with a low Gleeson and PSA which yours does look like.

PSA testing normally starts 3 or 6 months after RT finishes , suppose u could have it done privately , not sure if will mean that much though.

all the best

Steve

I would say that there are 2 times when a PSA test can be most useful. Firstly at 3 months post initiation of ADT, along with a testosterone test, which would confirm that the ADT is working and that the castrate state has been reached. Occasionally the implant may fail or the cancer does not react to the HT as expected. The second time is 6 months after ADT initiation as the rate of decrease, along with its level at this point can inform as to the likelihood of a recurrence at some time in the future. Ideally the 6 month level would be <0.1 but if it has not reached this then the actual level it goes down to is important.

Add in to this the radiotherapy then this can reduce the PSA further as it continues to work for 18+months. With younger men, and those who have Brachytherapy or the new 6 x 6 Gy regime there is often a bounce in PSA either during or soon after treatment as it is thought this is due to the cells splitting open as they die and releasing protein into the blood. Having a blood test during the 3 months of starting radiotherapy can be worrying as the PSA can bounce around but it should have settled down at the 3 month level. The nadir (lowest level) of PSA ( usually at the 18 month point) is also predictive of possible future recurrence. There are several risk factors taken into account when deciding the duration of HT but if you achieve the targets then this might play into whether you can stop HT sooner than originally planned. 

You have also asked about penile health. There are tablets which can be prescribed to help with blood flow, as can vacuum pumps. Part of the problem is that there is usually a loss of libido so it can be useful to get your partner to initiate sex, plus manual stimulation can help. Basically use it or lose it. 

Exercise is very important but also adding in some resistance training can help with muscle loss -some men find it useful to go to the gym.

You might find this video useful.

https://youtu.be/E_zZ-lG6eeY?si=dVnJNz7MdMiIlWcV

Trainerman001 said:

Is there a way for me to set up my account so that I can get a notification of any new thread that I could contribute to ?

The easy way to do this is to "bookmark" our forum - your bookmark is the 3rd icon along on your home page after notifications and messages.

Once you have bookmarked the Prostate Forum, any new or unread threads will come up on your home page in bold.

I hope this helps.

Best wishes - Brian.

Thank you Brian,

I have done this, and although probably too new to this at present, as I go through treatment I hope to help others.

David