Treatment Plan - Your thoughts please.

Hello MS58,

This would be a conversation to have with your oncologist. I think they usually don't like delaying the RT for more than 6 months after starting HT, as there's a risk it might start being less effective, and they want to do the RT before that happens, but 7 months is probably OK. I delayed my RT because I wanted to get my PSA lower and my oncologist said delaying the RT while the HT is still dropping your PSA at a good rate is no problem, but not to go longer than 6 months.

Your projected total time on HT seems rather short for a high risk patient although I don't know what your staging is. Typically it's done for 18-36 months in this case.

Hi Andy,

Wow, I just read your Bio. You are one very amazing warrior for the cause, and your treatment history is incredible. Thanks on behalf of all fellow PCa sufferers for what you are doing and thanks also for answering my question.

I note that you resisted having the Barrier Gel prior to your RT treatment. Would you reconsider that decision now seeing you are having some minor rectal issues? 

Also, I note that you mention a lower dosage of HT that can be taken. Can you be more specific as to what this drug is and is it taken orally or injection? Would a person with my diagnosis be able to commence using such a lower dosage HT medication for the 6 - 7 months prior to the big guns (BBT + IMRT). You may be asking why would I want to wait. Well as mentioned I am retiring in June 2024 but also in March next year I have a 7-week overseas commitment in the pipeline and to be honest, I am hoping not to feel too bad during that time. I have noted that some people have deferred their treatment for 18+ months after receiving a GS 8 and a very high PSA level and then find after that wait time that hardly anything had changed in the diagnosis. In fact Covid had proven that all those who had to wait 12+ months before they could be treated, their condition hadn't changed much at all. 

So as you can see, this entire issue is complex and confusing but people like yourself who have thrown your 100% energy into wanting to learn all there is to know about this horrible disease, are a "blessing" to us who know very little. So thank you again.

Anyway, I look forward to hearing back from you. 

Anyway, my impression is that oncologists are prepared to be flexible when it comes to the period of HT prior to RT. At least, in my case - which was salvage RT in response to a PSA rise following surgery several years earlier - they were happy to extend it when there was an issue of rectal bleeding needing investigation. In the end I was 8 months on HT (Zoladex) before the first RT. As Andy says there is a risk the cancer cells lose their hormone dependence (hence inhibition by HT) but you wouldn't expect that to happen quickly. But you need to talk to your oncologist to find out how much of risk that is thought to be for you specifically. I think there is a good chance your plan may be acceptable.

It seems to me that oncologists vary a bit on their advice about continuing HT after completing RT, though that may depend on the particular patient. Any cancer cells that have been successfully "zapped" by RT will either already have died, or will do so once they (unsuccessfully) try to divide as the HT wears off. But if the oncologist thinks there might be cells that escaped damage by RT - especially if there is a risk of cancerous cells that have moved out of the zone targetted - a longer period on HT means they are likely to die too. And I suspect if they are not sure they err on the side of caution, no one wants a relapse.

Hi MS58, there isn't a lower dose of HT you are either on it or not. Andy chose to have his RT a little later i.e. when he had been on it longer, and stayed on it a little longer than he needed to, to get as much benefit out of it as possible. That could be described as having a higher dose, but not a higher dose rate.

There are different types of HT, some block absorption of testosterone and others block production of testosterone. In theory either approach is equal though in practice they have different side effects and may work better in different stages of the disease.

As a general rule people joining this forum are in a bit of a panic and want to rush in to treatment, your post is a nice change. With RT it is fairly standard to have 6 months of HT first, so your RT would be about mid April on that time scale. Delaying until June would almost certainly do no harm. The treatment is not very disruptive, obviously you can't have it when you're committed to be elsewhere, but it wouldn't be too disruptive to your job. If your job offers sick pay I would take that.

Thanks Dave, I did note that Andy had said in his Bio that he started on a low dose HT but that it didn't work so I guess that means there is no point using such a drug if it is ineffective. 

I must admit that I was one of those that did panic when I first found out about having PCa. But thanks be to forums like this, I've come to realise that panic does nothing to help and having PCa is far better than having many other types of cancers. 

I really enjoyed reading how you coped with your diagnosis. That was brilliant. Mind over Matter - it can really help to remain positive and upbeat and you have certainly done that. 

Anyway, thanks for your reply and I hope you continue to remain positive for many more years to come. 

Hi MS58,

I didn’t have barrier gel before RT. For me RT was a breeze …unlike HT😟
it needn’t stop you though, you maybe just need to adapt a little. I get tired (not fatigued) but that’s easily solved with a little nap, and my joints ache(but getting better with effort, you need to keep moving!).
Some people don’t get many side effects but a friend of mine on the same treatment path as me suffers from extreme fatigue and can’t do anything physical without getting exhausted. I can’t see why it would affect your travel plans although you may need to take it slower, especially if you DO get fatigued. What I would say is that after 4 months you may not have many of the side effects, the only one I got initially was hot flushes big time which was helped by carrying a pocket fan with me. The other thing is you’ll need to make sure you time your travel in between injections, mine are every 13 weeks.

Cheers,

Derek

Edited by member 20 Oct 2023 at 07:43  | Reason: Not specified

Thanks for your reply Derek. You give me some encouragement that heading overseas while on HT is doable. I like the idea of having a portable fan. Great idea. I will also now (or will eventually) understand a woman going through menopause. I’m sure that generally most men probably never really understand the difficulties that woman endure at that stage of life. Well those of us who have and will experience those flashes have a new found respect for our women folk. 

I am really keen to get some more info as to why some guys including yourself are not having Barrier Gel prior to RT. Seems there are a few now. But why? It is promoted as a simple procedure that will greatly reduce the chances of rectal RT damage. So why do people not do it?? 
I would really like to get some feedback about that. I did note that “Andy” didn’t have it and is now having some rectal issue's. 
I have to make a decision at some stage so would love to get some feedback on this. I may need to start a new topic on this subject. 

I am retired so dealing with work wasn't a problem - but looking back we went on three skiing holidays, two cycling holidays and a walking holiday while I was on HT. (Sounds a lot, but once we knew that August was blocked off for RT and September for recovery, we contrived to do everything we normally spread over a longer timescale).

One possible issue is getting your repeat injections if that is what your HT involves. They gave me Zoladex which comes in either 3 or 1 month doses; I assume if you talk to the nurse who gives it you may be able to swap between the two so you are easily within a 3 month period while away.