I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Struggling on Hormone Therapy

Email this conversation Print this conversation
User
Posted 21 Feb 2024 at 21:51

In short,


Last year (April) my PSA went up to 0.3 from being 0.1 for 18months after my Prostatecctomy. I was offered radiotherapy and waited for my date to start. Unfortunately I was missed in the process of being told that I had to be on Hormone Therapy. After a phone call I was told to pick some pills up the next day and had to start taking them immediately, reluctantly I agreed. When I questioned that there was only 30 pills in the box and do I get some more I was informed that I would be getting an injection. When I got the injection I was told that I needed it for the radiotherapy treatment and had to be on it for three months or it would effect my RT date. I had my treatment but was then told I needed to have an injection every six months for two years. I am struggling with the side effects quite bad, I have a very active Job and also home life. I regularly go to the gym which I am struggling to maintain.


My question


I have now had two injections with the next one due in July. Has anyone ever said no more injections and been ok

User
Posted 23 Feb 2024 at 01:06

Originally Posted by: Online Community Member
The Oncologist said to him he had 2 years to live if he didn't go ahead with HRT and RT ( he is expecting to die in 6 months )


Lizzo, from your recent posts it seems that you and your husband have decided not to have RT/HT because of your own personal views on treatment. Your husband has been and probably still is, in a position where RT/HT could remove any traces of cancer and save his life.


You appear to be mixing up some of the terminology here. RT with a recurrence after an RP will most probably be targeted at the prostate bed [not the "pelvic bed"], possibly the seminal vesicles  and specific lymph glands. I realize whole pelvic treatment sounds way over the top but that's not what happens. Modern RT machines like LINACs are able to very accurately target areas a few mm across without subjecting other parts of the body to excessive radiation.


Laying out the facts doesn't add up to pressure and bullying in my book. You and your husband have been in the position to follow advice that has saved the lives of many men, including me and it's tragic to see that due to your urging and some rather odd personal views on hormone therapy, he might finish up dealing with the very unpleasant development of a cancer that could have been treated.


Jules

User
Posted 22 Feb 2024 at 11:08

Ha ha ha 😝 - that’s a dangerous road to go down. It’s a good job I don’t do social media, I’d soon be having to hide 😶‍🌫️.

User
Posted 22 Feb 2024 at 17:33

Originally Posted by: Online Community Member


I was only on Bical for a couple of months and needed a B cup.



I hear that there is quite an income to be made on Onlyfans :P

Show Most Thanked Posts
User
Posted 22 Feb 2024 at 00:10
So when did your radiotherapy finish?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Feb 2024 at 08:53

Hi Nigel,


I feel for you and know your pain. I’ve been on Prostap for 20 months with another 16 to go. 😩 There are so many members on here posting that they are struggling with side-effects. You are doing all the right things but nothing I have tried seem to make much of a difference.


I have also thought about giving it up but am not sure if you go against advice and need treatment in the future what the outcome would be. 
The pills you took would probably be Bicalutamide which is to stop a testosterone flare when you get your first injection (after 2 weeks). 


I’m going to see my physio this morning and see if he has any suggestions to ease the joint ache and stiffness.


I would speak to your CNS to see if anything can be done.


Good Luck,


Derek

User
Posted 22 Feb 2024 at 10:15

Hi,


I’m on Prostap and trying to live with side effects. It’s certainly no fun as this drug is trying to turn my body into a woman’s. I feel my strength being sapped away each day and the puppy fat piling on. I find it difficult to try do all the active things I’ve previously enjoyed doing. I particularly struggle with hot sweats which wake me up every 1-2 hours during the night. I’ve contemplated stopping it, but seriously, I know that I need to keep on with it, I don’t think that they’ve prescribed me it for the fun of it. I’ve got 2 and a bit more years of it to go, need to learn to live it and I’m sure that with a bit of determination I can deal with it.
Stick with it, good luck and all the best.


Spongebob

User
Posted 22 Feb 2024 at 10:31

Originally Posted by: Online Community Member
It’s certainly no fun as this drug is trying to turn my body into a woman’s. I feel my strength being sapped away each day and the puppy fat piling on. 


Ian! Are you insinuating  that women are weak and plump? 😆


I was only on Bical for a couple of months and needed a B cup.

User
Posted 22 Feb 2024 at 11:08

Ha ha ha 😝 - that’s a dangerous road to go down. It’s a good job I don’t do social media, I’d soon be having to hide 😶‍🌫️.

User
Posted 22 Feb 2024 at 16:51

My radiotherapy finished on the 22nd December last year

User
Posted 22 Feb 2024 at 17:33

Originally Posted by: Online Community Member


I was only on Bical for a couple of months and needed a B cup.



I hear that there is quite an income to be made on Onlyfans :P

User
Posted 22 Feb 2024 at 18:44

I urged my husband to wait when he was being pressured to have HRT and RT 


He had RP in  Oct 2018 PSA 8.13  Gleason score 4+4 tb3 


PSA undetectable after RP 


July 2022 PSA 0.13


The Urologist said to him he had 2 years to live if he didn't go ahead with HRT and RT  ( he is expecting to die in 6 months )


He had scans  inc PET no mets showed up but  they  still wanted to radiate his whole pelvic bed willy nilly 


I didn't like the pressure and bullying involved  that's what alerted me and put me on my guard 


 


 

Edited by member 23 Feb 2024 at 15:01  | Reason: Not specified

User
Posted 23 Feb 2024 at 01:06

Originally Posted by: Online Community Member
The Oncologist said to him he had 2 years to live if he didn't go ahead with HRT and RT ( he is expecting to die in 6 months )


Lizzo, from your recent posts it seems that you and your husband have decided not to have RT/HT because of your own personal views on treatment. Your husband has been and probably still is, in a position where RT/HT could remove any traces of cancer and save his life.


You appear to be mixing up some of the terminology here. RT with a recurrence after an RP will most probably be targeted at the prostate bed [not the "pelvic bed"], possibly the seminal vesicles  and specific lymph glands. I realize whole pelvic treatment sounds way over the top but that's not what happens. Modern RT machines like LINACs are able to very accurately target areas a few mm across without subjecting other parts of the body to excessive radiation.


Laying out the facts doesn't add up to pressure and bullying in my book. You and your husband have been in the position to follow advice that has saved the lives of many men, including me and it's tragic to see that due to your urging and some rather odd personal views on hormone therapy, he might finish up dealing with the very unpleasant development of a cancer that could have been treated.


Jules

User
Posted 23 Feb 2024 at 02:24

Hi Nigel, so you were on HT for about 6 months, then had RT. You are still having 6 monthly HT injections (presumably the most recent in January) and are due your next in July. With the prospect of being on HT until Dec 2025.


It is not so common to have HT for salvage RT as it is when RT is a primary treatment, however your oncologist has seen all your results so will know far more than anyone on this forum will. When RT is the primary treatment a total of two years HT is common, three years is not unknown, and occasionally only six months is recommended. There is research suggesting that 18 months is as much as is required.


Going with your oncologists recommendations is always the preferred course of action. They are trying to balance the best probability of cure with the least inconvenience from side effects. However they are thinking in terms of the average man with average side effects. None of us are average.


For an average man the probability of SRT working is 50/50, and the side effects are bearable. If the side effects for you are unbearable then you could stop HT early, but you will reduce your chances of a cure. It may go from a 50% chance to 45% or maybe to 10% I doubt anyone can answer that question, but you could try asking the oncologist.

Dave

User
Posted 23 Feb 2024 at 06:45

People have stopped HT early. It's a gamble and if you get it wrong, you'll have little choice but to go back on HT for the rest of your life.


Given that, I decided to stay on HT longer than my oncologist said I had to, just in case it gave me an extra percent chance of a cure, but that was easy for me as I wasn't getting any side effects that I couldn't put up with for a bit longer in the hope of never having to go back on to it.


I have come across men at the opposite end of the scale - i.e. finding the HT so dire and depressed they are likely to have taken their own lives before finishing it, and in this case the balance is definitely shifted -longevity and quality of life is likely to be bettr by coming off it sooner.


Another option to discuss with your oncologist might be to try switching to Bicalutamide (with low dose Taxmoxifen). This has fewer side effects as it's a less punishing HT which works in a different way. It's more likely to cause breast gland growth and pain, hence the Tamoxifen to counteract that.

User
Posted 23 Feb 2024 at 08:16

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
The Oncologist said to him he had 2 years to live if he didn't go ahead with HRT and RT ( he is expecting to die in 6 months )


Lizzo, from your recent posts it seems that you and your husband have decided not to have RT/HT because of your own personal views on treatment. Your husband has been and probably still is, in a position where RT/HT could remove any traces of cancer and save his life.


You appear to be mixing up some of the terminology here. RT with a recurrence after an RP will most probably be targeted at the prostate bed [not the "pelvic bed"], possibly the seminal vesicles  and specific lymph glands. I realize whole pelvic treatment sounds way over the top but that's not what happens. Modern RT machines like LINACs are able to very accurately target areas a few mm across without subjecting other parts of the body to excessive radiation.


Laying out the facts doesn't add up to pressure and bullying in my book. You and your husband have been in the position to follow advice that has saved the lives of many men, including me and it's tragic to see that due to your urging and some rather odd personal views on hormone therapy, he might finish up dealing with the very unpleasant development of a cancer that could have been treated.


Jules



 


I just want the best for my husband ?


And I do sometimes  worry if I am doing the right thing but different NHS trusts have different protocols they wanted to get my husband on ADT and RT when his PSA was at  0.18 whereas in Norfolk NHS  they wait until it's 0.4 I know this bc I was watching a guy on youtube last night who is making  videos on his prostate cancer journey it's like he can't wait to get treatment but their reasoning is nothing will show up in a scan until 0.4 so it's a waste of resources and money 


So if we lived in Norfolk we would be in just the same position 


I have big  reservations about  ADTs ie Zoladex  which  interfere with the pituitory gland - DHT is what causes prostate cancer so why can't they target the enzyme alpha 5 reductase that converts some testosterone into DHT  ?  cancer treatment has hardly progressed in decades 


I don't think my husband has been missing out so far but after his next PSA test I have told him its going to be up to him its his body 


Also  it's not my personal opinion in all this it's my research 


 


 


 

User
Posted 23 Feb 2024 at 10:59

Originally Posted by: Online Community Member
DHT is what causes prostate cancer so why can't they target the enzyme alpha 5 reductase that converts some testosterone into DHT ? cancer treatment has hardly progressed in decades


The prostate does prefer DHT to Testosterone (although it's not accurate to say that DHT causes prostate cancer). Androgen receptors which prefer DHT manufacture it in situ from Testosterone as it's used, using the enzyme 5 𝞪-reductase.


There are 5 𝞪-reductase inhibitors such as Finasteride and Dutasteride, and it sounds like they'd be perfect to stop prostate cancer without the full set of side effects of losing Testoserone. Well, they've been tried and don't work. They slow down the growth of non-cancerous prostate cells so they're used to shrink enlarged prostates, and they even reduce PSA which initially looks promising, but they don't have any effect on cancerous prostate cells which simply switch to use Testosterone and probably grow more androgen receptors to compensate, which we know prostate cancer cells can mutate to do. So, very nice idea, tried many times, but sadly doesn't work.

Edited by member 23 Feb 2024 at 11:31  | Reason: Not specified

User
Posted 23 Feb 2024 at 14:54

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member
DHT is what causes prostate cancer so why can't they target the enzyme alpha 5 reductase that converts some testosterone into DHT ? cancer treatment has hardly progressed in decades


The prostate does prefer DHT to Testosterone (although it's not accurate to say that DHT causes prostate cancer). Androgen receptors which prefer DHT manufacture it in situ from Testosterone as it's used, using the enzyme 5 𝞪-reductase.


There are 5 𝞪-reductase inhibitors such as Finasteride and Dutasteride, and it sounds like they'd be perfect to stop prostate cancer without the full set of side effects of losing Testoserone. Well, they've been tried and don't work. They slow down the growth of non-cancerous prostate cells so they're used to shrink enlarged prostates, and they even reduce PSA which initially looks promising, but they don't have any effect on cancerous prostate cells which simply switch to use Testosterone and probably grow more androgen receptors to compensate, which we know prostate cancer cells can mutate to do. So, very nice idea, tried many times, but sadly doesn't work.



 


I wouldn't touch Finesteride with a barge pole it's linked to prostate cancer there are online forums for men struggling with long term side effects from Finesteride 


 Saw Palmetto is a natural alternative 

User
Posted 23 Feb 2024 at 21:32
This discussion seems to have gone in two different directions.

One is support of Nigel the OP. I too went through HT and RT due to a PSA increase after prostatectomy (also reaching 0.3) and on referral to oncology the recommendation was for just 6 months HT with RT during the second 3 months. In the event there were delays (partly Covid, partly the need to pause for some other investigations) and I had 9 months HT. I agree that being on HT was something that slowly grinds you down and the shorter the better in that respect. And my experience does suggest that the "right" length of HT is not something absolute.

The second discussion in parallel is about whether it is necessary to follow the consultant's advice, led by Lizzo's enthusiasm for alternative approaches; I am a bit worried given we aren't hearing the patient's own views in that instance. My view is that Nigel's oncologist is both far more expert than anyone here and has much more detailed information about Nigel's personal clinical situation, so probably has good reasons for the proposed treatment. However the fact that there is variation in salvage treatment means I think Nigel would be justified in discussing with his oncologist how much benefit another year on HT will bring.

(For what it is worth, my understanding is that while RT can be effective on its own it is often more effective if the cancer cells have been stopped from dividing in preparation using HT. However if there is a risk of recurrence after RT due to particularly rapidly dividing cancer cells, or because there is a real possibility of cancer cells that are already distant from the prostate bed, then longer HT treatment is justified to minimise the chance of recurrence. As Andy says, if the cancer isn't eliminated Nigel is likely to find the next approach will be HT for the rest of his life - much worse than the 2 years currently recommended).
User
Posted 23 Feb 2024 at 21:40

Originally Posted by: Online Community Member
This discussion seems to have gone in two different directions.

One is support of Nigel the OP. I too went through HT and RT due to a PSA increase after prostatectomy (also reaching 0.3) and on referral to oncology the recommendation was for just 6 months HT with RT during the second 3 months. In the event there were delays (partly Covid, partly the need to pause for some other investigations) and I had 9 months HT. I agree that being on HT was something that slowly grinds you down and the shorter the better in that respect. And my experience does suggest that the "right" length of HT is not something absolute.

The second discussion in parallel is about whether it is necessary to follow the consultant's advice, led by Lizzo's enthusiasm for alternative approaches; I am a bit worried given we aren't hearing the patient's own views in that instance. My view is that Nigel's oncologist is both far more expert than anyone here and has much more detailed information about Nigel's personal clinical situation, so probably has good reasons for the proposed treatment. However the fact that there is variation in salvage treatment means I think Nigel would be justified in discussing with his oncologist how much benefit another year on HT will bring.

(For what it is worth, my understanding is that while RT can be effective on its own it is often more effective if the cancer cells have been stopped from dividing in preparation using HT. However if there is a risk of recurrence after RT due to particularly rapidly dividing cancer cells, or because there is a real possibility of cancer cells that are already distant from the prostate bed, then longer HT treatment is justified to minimise the chance of recurrence. As Andy says, if the cancer isn't eliminated Nigel is likely to find the next approach will be HT for the rest of his life - much worse than the 2 years currently recommended).


 


I don't want to have to resort to alternative medicine ?


I want NHS treatment but  big pharma runs NHS now 

User
Posted 26 Feb 2024 at 01:05

Originally Posted by: Online Community Member
He had RP in Oct 2018 PSA 8.13 Gleason score 4 4 tb3


You haven't given a complete picture of your husband's general health or cancer [and I don't know how old he is though you might have mentioned it somewhere] but based on the above I take it he's G8 t3b, so there's spread beyond the prostate.


Given scans have yet to show up anything it's probable that he's looking at prostate bed cancer at least.


You and he will have to make a decision if that's the case because neither conventional HT nor the PATCH trial [used as intended] remove cancer.


Your comment that after his next psa test he will be on his own is pretty weird!


Jules


 

Edited by member 26 Feb 2024 at 01:25  | Reason: Not specified

User
Posted 26 Feb 2024 at 07:46

Originally Posted by: Online Community Member
Your comment that after his next psa test he will be on his own is pretty weird!


But consistent. 

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK