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RT without HT

User
Posted 21 Jun 2023 at 14:01

Hello, newbie here, trying to decide if I can avoid the HT as part of RT


I have localised T2 PCa with Gleason 3+4, PSA 22, all contained within the prostate, not in lymph nodes and no PNI; biopsy done in March 2023


I have had 3 MRIs, first pre-Covid measured at 50cc, second post-Covid at 38cc, this month at 42cc; the biopsy surgeon remarked that it was 'quite small'. No discernible waterworks issues and no noticeable deterioration since my first PSA test in May 2019


It's been a while coming (denial) but I've finally accepted that I need treatment and am opting for RT but there's a big question mark for me about the HT. Both the MDT and the radiologist are saying I should have it but that seems to be purely on the basis of NICE guidelines, risk algorithms and 'because that's the way we do it'. I asked the radiologist how many men out of 100 has she treated without HT before RT and she said none. I asked if she would treat me without HT and I received a quite reluctant yes. I don't feel that I'm being treated as an individual


The radiologist is also suggesting that I have 7.5 weeks of RT to also zap the lymph nodes even though there's no cancer there (apparently there may be microscopic traces); it seems to be based on new NICE guidelines


I don't want HT because of the side effects and because there are enough of them with RT. I understand that HT is designed to shrink the prostate pre-RT and to stop the cancer cells growing but the radiologist admitted that mine wasn't 'massive' and my cancer appears to be slow-growing


My view is that I'd be prepared to have HT if it was wholly necessary and whilst it may help the RT be more effective it won't necessarily impact the risk of recurrence


My question (yes, finally) is: are there any people here who have had RT without HT and did they have any regrets afterwards?


Another factor is time. With HT I wouldn't have the RT for probably 5-6 months whereas without it would be weeks so I just feel that I want to get on with that


BTW the HT they are recommending is bicalutamide and as that does cause breast swelling, they are offering a small dose of RT on my chest beforehand which apparently has a 1 in 100 chance of resulting in breast cancer so for me another argument against


Sorry, that's a little longer than I anticipated so hope you can pick out the important bits


 

User
Posted 22 Jun 2023 at 11:02

Very many thanks Everyone, all most helpful as I try to get my head around this and make a decision


Taking it all in, further thought and chats I'm now (finally) coming to realise that the cancer is the danger not the side effects of any treatment; one can kill, the other not so


Trust the experts, trust the science, get rid of the cancer


I'll have final deliberations over the weekend but I think I'm there


Thanks again

User
Posted 22 Jun 2023 at 00:18

Originally Posted by: Online Community Member


I didn't have HT with the salvage RT, the MDT decided it was not right because of a stricture I developed, so in my case treatment was tailored to me.


The oncologist said it was optional but advisable.



And, unfortunately, your salvage RT failed so perhaps a good example of why Peter might benefit from following his MDT / onco's advice?   

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2023 at 07:53

Bill, the discussion and follow up letter, said the thought it was too toxic for the stricture. It was salvage RT to the prostate bed and a urethral stricture so presumably it was related to being in the area of treatment.


Thanks Chris. 

User
Posted 25 Jun 2023 at 18:40

Chris, if your oncologist was more open to discussion, it would be worth asking what the damage is that he's thinking of.


Its main use is for women to take 20mg/day for 5 years after treatment for hormone sensitive breast cancer, where it reduces recurrence rates. (Other drugs for this are also available now, so use of Tamoxifen has probably reduced.) It's a bit like a female version of Bicalutamide, i.e. an estrogen blocker, except it's a selective estrogen blocker which blocks estrogen receptors in breast and some other tissues, but notably not bone, so it doesn't cause osteoporosis (and neither does Bicalutamide alone, but for a completely different reason).


One issue with it is that about a 1/4 of the women on Tamoxifen for 5 years end up with non-alcoholic fatty liver disease, and a small number of these will go on to get liver cirrhosis. In that case, the risk is considered worth it because it saves more lives against breast cancer recurrence than it causes problems with liver cirrhosis. There is also an increased risk of DVT.


The considerations are different with prostate cancer. Tamoxifen is not a life-saving treatment, so the risk of liver cirrhosis isn't balanced by a higher life-saving effect. However, the dose is usually much lower - typically 10 or 20mg/week, which is much less likely to cause non-alcoholic fatty liver disease, and the duration for Bicalutamide treatment (and hence Tamoxifen) is usually 2 years max. Also, it's really easy with a liver function blood test to check that your liver is coping with it OK, which I always suggest asking for after a few months. The DVT risk is there, but many people are happy to risk that with things like transcontinental flights.

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User
Posted 21 Jun 2023 at 15:17
I think the quick answer is if, despite medical advice, you are so keen to have RT without HT, what is the point of having the RT? Why not just go an AS until you are forced to do something more radical?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Jun 2023 at 16:00
Have a prostatectomy. You will avoid any HT and radiation.
You will also know after your first PSA if you have a chance of complete remission without further treatment.

User
Posted 21 Jun 2023 at 16:46
Hi Peter,

You may find my experience interesting but every man has to make his own decision and weigh up the Pros and Cons on this aspect as well as in others respects. I think you also need to take into account the latest advice which comes through experience of medical bodies throughout the world as best choice.

I started my HT directly after diagnosis towards the end of 2007, the idea being that I would have 3 months of HT and then RT. I can neither remember nor find anything in writing advising that I should have HT post RT. (My PSA on diagnosis was 17.6, my staging T3A, locally advanced with no spread seen outside the Prostate and Gleason 3+4). I had no idea whatsoever about PCa but began to research it extensively and decided to have my RT in Germany where I was accepted into a trial. I remember writing to the Royal Marsden saying my RT would be delayed for operational reasons, so how would they consider two further months of HT to cover the period up to and including most of the RT. The Marsden replied that this "would do no harm, no harm at all" . It was subsequently established that having 6 months of HT before RT produced better results than 3 so I was on the right side of chance as it happened.

So I had my last injection of Zoladex in Germany during treatment and then resumed care under The Royal Marden who never suggested I have further HT. Years later I was offered it when my case was taken over by UCLH but I declined it saying i just wanted HIFU.

In retrospect, I think I was lucky to have had the extra HT prior to and during RT when it has been shown to be more beneficial. Although for a time it was thought 3 years HT post RT would be beneficial, this seems to be less rigidly followed now with men having variously less time on it according to their individual feelings, progress and views of their Oncologists. My view is that HT is of greater benefit earlier rather than post RT but that's only my view I am sure there are individual cases where post RT, HT helps.


Barry
User
Posted 21 Jun 2023 at 18:43
Post RT HT studies have subsequently shown no additional benefit after 18months..
User
Posted 21 Jun 2023 at 20:51

Peter, I have had surgery, salvage RT two courses of SABR treatment. I swore I wouldn't have HT.


Three weeks ago I started six months of 150mg daily bicalutamide. It has caused a bit of constipation and upset stomach possibly a bit of pain in my already defective kidneys. After changing my mind a few times I took the view that if it gets too much I will stop taking it.


I didn't have HT with the salvage RT, the MDT decided it was not right because of a stricture I developed,so in my case treatment was tailored to me.


The oncologist said it was optional but advisable.


Good luck with your choice.


Thanks Chris 

Edited by member 21 Jun 2023 at 20:53  | Reason: Not specified

User
Posted 21 Jun 2023 at 23:41

The HT does two things in your case.


It shrinks the prostate by around 1/3rd meaning a smaller RT beam can be used, which causes less collateral damage and less RT side effects. It also puts the prostate cells to sleep, making them more receptive to the RT treatment.


It tends to half the relapse rate, although this depends on your original risk. You are a high risk patient because of your PSA > 20. This is also reflected in your oncologist wanting to include pelvic lymph nodes, and is because being a high risk patient, your risk of relapse is higher due to the chances of micro-mets (mets too small to show on scans) having already escaped the prostate. Including the pelvic lymph nodes would hopefully wipe them out there, and the post-treatment hormone therapy tends to kill them elsewhere after the main tumour has been treated.


If the RT isn't successful, you could end up on HT for life.


Most people handle HT OK. If you did find it unacceptable, you could stop it early, and you would have got some of the benefit.

Edited by member 21 Jun 2023 at 23:57  | Reason: Not specified

User
Posted 22 Jun 2023 at 00:18

Originally Posted by: Online Community Member


I didn't have HT with the salvage RT, the MDT decided it was not right because of a stricture I developed, so in my case treatment was tailored to me.


The oncologist said it was optional but advisable.



And, unfortunately, your salvage RT failed so perhaps a good example of why Peter might benefit from following his MDT / onco's advice?   

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Jun 2023 at 02:27

Originally Posted by: Online Community Member
Both the MDT and the radiologist are saying I should have it but that seems to be purely on the basis of NICE guidelines, risk algorithms and 'because that's the way we do it


Forgive me Peter but your reluctance seems to be more related to what you describe yourself as "denial" than a rigorous evaluation of the treatment you've been offered. Unless you have strong, evidence based reasons to reject the advice of your MDT and radiologist you'd be silly not to follow it. The use of HT prior to RT is not restricted to the UK, it's practiced worldwide, including here in Australia. This is not a case of merely following algorithms or doubtful conventions.


Occasionally people pop up on this forum who find treatment, particularly HT, so threatening they can't go ahead with it. They often disappear off the radar here. I fear for all of those who deny themselves treatment  because your first chance to deal with this cancer is your best chance. Many of us here have gone through this successfully  but you're at a key moment where what you decide to do now will decide whether you effectively remove your cancer or if inadequate treatment leads to recurrence later. Recurrence is no fun and raises the chances of needing prolonged HT in the hope of holding things in check. Please, examine your thinking closely, reject the suppostion and get on with the job.


Jules


 

Edited by member 22 Jun 2023 at 06:21  | Reason: Not specified

User
Posted 22 Jun 2023 at 04:50

I had 18 months of bicalutimide.   Started 3 months before my salvage radiotherapy. 


I've no regrets.  As my prostatectomy hadn't succeeded, it was my last chance of a cure.


It worked.  PSA now <0.006.

User
Posted 22 Jun 2023 at 05:30

Originally Posted by: Online Community Member


I didn't have HT with the salvage RT, the MDT decided it was not right because of a stricture I developed,so in my case treatment was tailored to me.


The oncologist said it was optional but advisable.



Hi Chris


Are you able to elaborate on why a stricture would mean HT is not advised with RT.


Is a stricture affected by HT?


Cheers


Bill

User
Posted 22 Jun 2023 at 07:49

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


I didn't have HT with the salvage RT, the MDT decided it was not right because of a stricture I developed, so in my case treatment was tailored to me.


The oncologist said it was optional but advisable.



And, unfortunately, your salvage RT failed so perhaps a good example of why Peter might benefit from following his MDT / onco's advice?   



Lyn, I did think about mentioning that very valid point, and is one of the reasons I eventually decided to go ahead ahead with the HT this time.


Thanks Chris 

User
Posted 22 Jun 2023 at 07:53

Bill, the discussion and follow up letter, said the thought it was too toxic for the stricture. It was salvage RT to the prostate bed and a urethral stricture so presumably it was related to being in the area of treatment.


Thanks Chris. 

User
Posted 22 Jun 2023 at 11:02

Very many thanks Everyone, all most helpful as I try to get my head around this and make a decision


Taking it all in, further thought and chats I'm now (finally) coming to realise that the cancer is the danger not the side effects of any treatment; one can kill, the other not so


Trust the experts, trust the science, get rid of the cancer


I'll have final deliberations over the weekend but I think I'm there


Thanks again

User
Posted 22 Jun 2023 at 21:59

Hi Peter, I had RT without HT back in 2004, 19 years ago. It was never even suggested then that I should have HT as well.  I was unlucky as my PC  has come back slowly over the last 4 or 5 years and my PSA is now bouncing around 10.


I fully understand your reluctance to have RT as I have declined it after my PSA went to 12  a couple of  months ago. It has now gone back down to 9.1 !  My CT scan was clear and as I am fit and active at 74 I have decided to wait until symptoms appear, if they ever do then reconsider my options. That is my decision.  


 

User
Posted 23 Jun 2023 at 01:43

Originally Posted by: Online Community Member


Hi Peter, I had RT without HT back in 2004, 19 years ago. It was never even suggested then that I should have HT as well.  I was unlucky as my PC  has come back slowly over the last 4 or 5 years and my PSA is now bouncing around 10.


I fully understand your reluctance to have RT as I have declined it after my PSA went to 12  a couple of  months ago. It has now gone back down to 9.1 !  My CT scan was clear and as I am fit and active at 74 I have decided to wait until symptoms appear, if they ever do then reconsider my options. That is my decision.  


 



I think you meant reluctance to have HT rather than RT in your second paragraph.  As regards your comment about not doing anything until symptoms appear, sometimes  PCa can advance quite extensively without any symptoms, so I would urge you to consider PSA and follow up scans rather than ignore until symptoms appear.

Edited by member 23 Jun 2023 at 01:55  | Reason: Not specified

Barry
User
Posted 23 Jun 2023 at 05:15

Deleted

Edited by member 23 Jun 2023 at 05:18  | Reason: Not specified

User
Posted 23 Jun 2023 at 14:31

Hello Jules, I wanted to say sincere thanks for your post as it did give me the kick up the a*se that I needed and make me think differently about my diagnosis, having effectively been in denial and on self-imposed AS for four years


I know now that the cancer is the enemy, RT is my army and HT is a band of mercenaries which will fight on my side, albeit at a cost


The HT won't kill me and I accept that whilst it may affect how I live, at least it will help me to live and hopefully help avert any recurrence


So here we go, MDT advised and now waiting for the get-go


Thanks again


Peter


 

User
Posted 23 Jun 2023 at 16:14
Well done Peter 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jun 2023 at 00:53

Gutsy decision Peter, so congratulations and all strength to you. I hope you'll stick around here to add your voice to the support system. There's some terrific knowledge and experience here and it's helped many people, including me.


You'll probably find the mercenaries a bit hard to handle for a short period but in a couple of years time I think you'll be very pleased you went the way you did.


Thanks for your very generous post 😀


Jules

User
Posted 24 Jun 2023 at 08:08

I had a prostatectomy in 2014, then a rise in PSA in 2017 and went on 2 years HT Bicalutamide and RT


the HT wasn’t too bad except for breast pain and breast tissue growth which I am about to have surgically removed. I requested Tamoxifen prior to HT but was refused. In retrospect I would have been MUCH more insistent so make that choice for yourself


ps


PSA currently undetectable, all is fine apart from my new moobs which are soon to be gone

User
Posted 24 Jun 2023 at 08:54

Bicalutamide is more liable to generate breast gland growth than the injectable hormone therapy drugs, and it really should be given with Tamoxifen to prevent this unless there's a medical reason you can't take Tamoxifen (such as a history of DVT or cardio issues). The 28 day anti-flare dose isn't long enough to cause this though. Other than this issue, the side effects from Bicalutamide are significantly lower than from the injections, but also it's less effective for some use cases. If you're on Tamoxifen, you should have a liver function test after 3 months, to ensure your liver is coping with it.


The injectable hormone therapy drugs can also generate breast gland growth but it's rarer. You can still ask for Tamoxifen if you start getting breast pain (usually the first sign of breast gland growth), or can feel breast gland tissue developing.


It's good to have a really good feel of your breasts and nipples before starting hormone therapy, so you can later identify any changes.


Tamoxifen only works for breast gland tissue growth (gynecomastia), not breast fat tissue (moobs, which are painless). The NICE recommended dose is 20mg/week which may work if you start it with Bicalutamide, but if you wait until you have breast pain, you'll probably need a higher dose at least to start with. The doses prescribed vary considerably from 20mg/week up to 20mg/day, but doses that high do cause non-alcoholic fatty liver disease in some women who take it for breast cancer, hence important to keep an eye on liver function and catch any issues early before they start causing problems.

Edited by member 24 Jun 2023 at 08:55  | Reason: Not specified

User
Posted 24 Jun 2023 at 10:20
All good info Andy but as you are aware, more and more NHS Trusts are refusing to prescribe Tamoxifen
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jun 2023 at 14:56

Hello Lyn,


Other than your husband, I rarely hear of anyone being refused Tamoxifen for gynecomastia, except due to the medical contraindications I mentioned. The 20mg tablets are dirt cheap (other sizes aren't).


I was refused it prophylactically when I started Bicalutamide, but as soon as I mentioned I was developing symptoms (3 months later), I got the Tamoxifen the same day.


The use of 150mg Bicalutamide for 1-2 years instead of injections is increasing, and the use of Tamoxifen with it.

Edited by member 24 Jun 2023 at 14:59  | Reason: Not specified

User
Posted 25 Jun 2023 at 14:44

Andy, you perhaps saw me post the other day that my onco point blank refused any suggestion of using tamoxifen a few weeks ago when being prescribed bicalutamide.He said the damage it causes to the body does not warrant the good that it does. Unfortunately he doesn't like questions so no futher explanation was forthcoming, May be a question for one of your very useful zoom support groups. I am paying for my treatment through my insurance company,so in my case cost shouldn't be an issue. 


I have researched it's use but can't say I have found any consistent reasons for not using it.


Thanks Chris 

Edited by member 25 Jun 2023 at 14:45  | Reason: Not specified

User
Posted 25 Jun 2023 at 18:40

Chris, if your oncologist was more open to discussion, it would be worth asking what the damage is that he's thinking of.


Its main use is for women to take 20mg/day for 5 years after treatment for hormone sensitive breast cancer, where it reduces recurrence rates. (Other drugs for this are also available now, so use of Tamoxifen has probably reduced.) It's a bit like a female version of Bicalutamide, i.e. an estrogen blocker, except it's a selective estrogen blocker which blocks estrogen receptors in breast and some other tissues, but notably not bone, so it doesn't cause osteoporosis (and neither does Bicalutamide alone, but for a completely different reason).


One issue with it is that about a 1/4 of the women on Tamoxifen for 5 years end up with non-alcoholic fatty liver disease, and a small number of these will go on to get liver cirrhosis. In that case, the risk is considered worth it because it saves more lives against breast cancer recurrence than it causes problems with liver cirrhosis. There is also an increased risk of DVT.


The considerations are different with prostate cancer. Tamoxifen is not a life-saving treatment, so the risk of liver cirrhosis isn't balanced by a higher life-saving effect. However, the dose is usually much lower - typically 10 or 20mg/week, which is much less likely to cause non-alcoholic fatty liver disease, and the duration for Bicalutamide treatment (and hence Tamoxifen) is usually 2 years max. Also, it's really easy with a liver function blood test to check that your liver is coping with it OK, which I always suggest asking for after a few months. The DVT risk is there, but many people are happy to risk that with things like transcontinental flights.

User
Posted 25 Jun 2023 at 19:55

Originally Posted by: Online Community Member


Chris, if your oncologist was more open to discussion, it would be worth asking what the damage is that he's thinking of.


 



Andy,we also have a difference of opinion about PSA testing. I do trust his ability and treatment plan but don't appreciate his attitude to my questions, especially as we are seeing him privately. I certainly don't feel the need to change to a different oncologist at this point.


Thanks Chris 


 

Edited by member 25 Jun 2023 at 19:56  | Reason: Not specified

User
Posted 26 Jun 2023 at 08:58

Thanks Andy, interesting read


My MDT has proposed breast-bud radiotherapy before starting bicalutamide and that was endorsed by the radiologist when I spoke to her. Tamoxifen as an alternative hasn't been mentioned so I'll ask


Whichever way you turn there seem to be potential issues further down the line and with breast-bud there's a 1% risk of developing breast cancer but I guess you add that to the general risk of other cancers developing anyway from RT for the prostate


If anyone has experience of BBRT it would be useful to know what to expect in a real-life situation as opposed to what the leaflets say


Peter

User
Posted 26 Jun 2023 at 10:05

When I was reading about these, I found a research paper saying the BBRT had a 50% success rate, whereas Tamoxifen had a 70% success rate. I think there was also a 2% chance of minor damage to heart muscle with BBRT, but no cases where this had ever caused any symptoms, and it was only found by going to look for it. Last time I checked, NICE recommended the BBRT first, but in practice, I think few places do it, and it never gets organised in time because clinicians never mention it and patients don't discover until too late. I've never had much confidence in what's said on the timing of either procedure, which is usually that treatment must start before any breast gland growth starts. Certainly it's not true in the case of Tamoxifen which can reverse recent breast gland growth, but not anything long-standing.


I recall one person here having both BBRT and Tamoxifen, as a belt and braces approach.

User
Posted 26 Jun 2023 at 22:17

How about using Zoladex rather than bicalutamide? If potential [though not definite] breast growth is a concern, my understanding is that Zoladex is less likely to have this side effect. Possibly a harder drug to live with, though Peter will only be on it for a short period from the sounds of it.


Jules

User
Posted 05 Jul 2023 at 14:20

Thanks Jules and sorry for delayed reply but I'm going to stick with the plan and get my chest zapped before starting the Bicalutamide


I haven't found any posts on here about pre-emptive breast bud RT so I'll start a fresh story once it's done and share my experience


Thanks again everyone


 

 
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