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My journey to diagnosis - treatment options limited to RT

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User
Posted 04 Feb 2022 at 11:03

I'm 62, single, I thought reasonably fit and healthy, but late summer/ early autumn 2021 developed urinary tract symptoms (increased frequency, reduced flow rate, some retention etc). After having been treated for possible cystitis, I was eventually sent for a PSA blood test, which came back as medium high (13). Had an MRI scan late November: PIRAD = 5, but also spotted a large aneurysm of R iliac artery. Had a tranperineal biopsy 7th Dec 2021. Have since had a PET CT scan 12th Jan 2022. No contact with urology post biopsy until 1st Feb 2022, when I had a brief telephone call from a urologist to tell me the news that I had prostate cancer - Gleason 3+4 = 7, T2, confined to prostate, no mets seen on PET CT. He told me that because I have an aneurysm, the MDT have ruled out radical prostatectomy so I will have to go down the HT/RT route. He prescribed Bicolutamide, which he advised me to pick up and start taking immediately - no explanation of side effects or what's involved until I asked him. Not happy with this so have decided to hold off until I can get more information. Have a telephone consultation with my urology oncologist consultant on Monday 7th, so I'll wait until I've spoken to her before I start taking the Bicolutamide (disappointed I don't get a face to face meeting). I find the prospect of the HT scary, but would endure it if there was some hope that I could eventually come off it


I'd love to hear from men who have taken the HT/RT path. How long do you have the HT? What percentage of men can eventually come off HT following RT treatment?

User
Posted 27 Feb 2022 at 18:33

Bicalutamide works and reduces PSA. For me, the worst side effect is gynecomastia.


Contrary to a comment on this topic, health professionals are currently not recommending any treatment other than surgery as they regard male breast enlargement as irreversible. Research indicates that previously gynecomastia could be treated by radiation, medication or surgery.


The prevailing view, to the best of my knowledge, is that radiation may cause breast cancer and tamoxifen (preferred medication) can introduce a range of undesirable side effects in addition to hormone therapy effects. 


To be frank, my experience indicates that some health professionals regard gynecomastia as an acceptable price men should pay for prostate cancer treatment. Over 70% of men taking bicalutamide have gynecomastia, yet despite this being known, no treatment is offered before gynecomastia occurs. I have been told that surgery is the only option once breast tissue has formed.

User
Posted 04 Feb 2022 at 11:21

I went through the radiotherapy hormone therapy route 37 fractions on decapeptyl for 2 years with minimal problems PSA down to 0.01 from 24.9 so far so good 👍

User
Posted 04 Feb 2022 at 13:08
I've also gone along the RT-HT path, starting with a Gleason 9 score plus nearby mets. For me it's been Zoladex before and after RT. The before RT bit reduces psa level and "starves" the cancer cells, temporarily. Achieving low psa levels prior to RT are regarded as helpful for a good outcome.

Long term, I'm on Zoladex for 3 years post RT, though that might be shortened if my psa stays ultra low, which it has so far.

HT takes a bit of getting used to and isn't a barrel of laughs but with careful management of your diet and exercise you'll come out the other end fine.

Jules
User
Posted 04 Feb 2022 at 16:42

Yes only on hormone therapy for two years if things carry on as planned another 11 months to go bit tired at times but nothing that stops me carrying on as normal 

User
Posted 04 Feb 2022 at 18:13
They should have explained to you that the hormone treatment will be for somewhere between 6 - 36 months and is to weaken your cancer so that the radiotherapy is like a killer blow rather than a shove.

Only men who have metastases (spread) and are incurable stay on HT for life ... and some of them manage to have intermittent breaks!

One of the things you will want to clarify with the specialist nurse or oncologist is whether you will be on bicalutimide throughout. You are correct that it is sometimes given just for a couple of weeks before the injections start but, where the diagnosis isn't too high risk, bicalutimide is sometimes the only hormone treatment you will have. The side effects of tablets & injections are different because the two things work in different ways - the injections stop your testosterone production (in effect, chemical castration) whereas with bicalutimide tablets, your body still produces testosterone but it is disguised so that the cancer can't 'see' it. The injections will switch off your libido, the tablets won't so much. The worst side effect of bicalutimide for many men is the risk of growing breasts but there are things the hospital can do to minimise that risk.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Feb 2022 at 23:52

I went down the HT/RT route as others have said you have no mets so you will be off HT after a couple of years at the most.


Oncologist really should be explaining this to you. I guess they do it everyday so it is second nature to them, but us patients do not, so we don't know things like side effects until we are told. Fortunately people on this forum can keep you informed.

Dave

User
Posted 05 Feb 2022 at 01:29

Originally Posted by: Online Community Member
Need to get my overactive bladder sorted, though, otherwise I'll never be able to lie on the RT treatment table for 10 mins with a full bladder!


 


That can be tricky! I found the suggested technique of drinking 600 ml [I think that was the quantity, quite a large amount anyway] shortly beforehand wasn't a great option. Starting from the night before, drinking small amounts regularly and doing the same before the RT, with maybe one visit to the toilet an hour beforehand, followed immediately by a small-medium drink, with maybe another before RT gave less problems. Worst case was going out for a run in the morning before RT, and then drinking enough to balance water lost while running ... shocking!


RT itself does cause some irritation of the bladder which can add to urgency.


If you're waiting for RT and busting, it's usually possible to have a small urination [if that's a term 😀] without letting it all out.


 


Jules

Edited by member 05 Feb 2022 at 03:09  | Reason: Not specified

User
Posted 05 Feb 2022 at 09:55

For my treatment I had to have an empty bladder, which is much easier. It depends on the hospital and where the tumour is.


So don't start worrying about the procedure until you know you have something to worry about.

Edited by member 05 Feb 2022 at 09:57  | Reason: Not specified

Dave

User
Posted 05 Feb 2022 at 15:00
I'm on Tamsulosin as are many men who've had RT. One side-effect of RT is to make the prostate swell up and restrict urine flow. Tamsulosin completely solves the problem, though.

Best wishes,

Chris
User
Posted 27 Feb 2022 at 19:12

Originally Posted by: Online Community Member


Bicalutamide works and reduces PSA. For me, the worst side effect is gynecomastia.


Contrary to a comment on this topic, health professionals are currently not recommending any treatment other than surgery as they regard male breast enlargement as irreversible.




This is completely false. The majority of men are given the choice of either surgery or radiotherapy. The small dose of tamoxifen taken to counteract breast growth is unlikely to cause side-effects; it's a far smaller dose than is taken by women being treated for breast cancer (the primary use of tamoxifen).


Regards,


Chris


 

User
Posted 27 Feb 2022 at 19:39

I think you have misread it CC but I also think Holmdene has been given misinformation.


Like just about everything else with this bloody disease, it is a postcode lottery ... in some areas, men are automatically prescribed tamoxifen if it is expected that they will be on bicalutimide for an extended amount of time. In other areas, it is only given if requested. In some areas, tamoxifen isn't available but RT to the breast buds is given if the man asks nicely before he starts taking the tablets. Where we live, neither is available - funding, probably :-(


My understanding is that breast growth is irreversible which is why RT or tamoxifen must be done or taken before bicalutimide starts. I am aware though that Andy did some research and found data to suggest that tamoxifen can reverse some moob growth but not all.


It is true that if you do grow actual breasts, the only solution is surgery - getting that on the NHS is extremely difficult and I can only think of 2 or 3 men on this forum who have been successful.

Edited by member 27 Feb 2022 at 23:50  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2022 at 21:21
I certainly experienced no noticeable side-effects from tamoxifen, Nigel.

Cheers,

Chris
User
Posted 28 Feb 2022 at 05:50
No not always, but these days more likely than not because evidence from trials supports its use.

User
Posted 28 Feb 2022 at 10:38

I have not been given false information.


When I started on bicalutamide, I was advised that I may develop sensitive breasts and experience some swelling. There was some vague discussion about medication alleviating some of these issues if they arose. Six months later, I have been informed by UCLH that they do NOT carry out radiation on patients medicating with bicalutamide and do not recommend either small or large doses of tamoxifen because of the additional side effects.


The significant point here is that neither radiation or tamoxifen were offered prior to taking bicalutamide. Consequently, if breast enlargement occurs, surgery is the only option.


I cannot comment on whether this issue is subject to regional interpretation and can only comment on my experience. 


 

User
Posted 03 Mar 2022 at 21:18
Most men have HT before RT - the exception might be if the cancer is very, very small but in that case, you would question why they were bothering to offer RT anyway.

HT is not normally given before RP - it has been used recently only because of Covid and the serious delays in some parts of the country while operating theatres were closed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 04 Feb 2022 at 11:21

I went through the radiotherapy hormone therapy route 37 fractions on decapeptyl for 2 years with minimal problems PSA down to 0.01 from 24.9 so far so good 👍

User
Posted 04 Feb 2022 at 11:36

Thanks for getting back, Gaz


Good to hear a positive story about life on HT.


I gather that the usual path is to start with Bicolutamide before going onto injections - i guess decapeptyl must be an injection?


Will you ever be able to come off the decapeptyl?

User
Posted 04 Feb 2022 at 13:08
I've also gone along the RT-HT path, starting with a Gleason 9 score plus nearby mets. For me it's been Zoladex before and after RT. The before RT bit reduces psa level and "starves" the cancer cells, temporarily. Achieving low psa levels prior to RT are regarded as helpful for a good outcome.

Long term, I'm on Zoladex for 3 years post RT, though that might be shortened if my psa stays ultra low, which it has so far.

HT takes a bit of getting used to and isn't a barrel of laughs but with careful management of your diet and exercise you'll come out the other end fine.

Jules
User
Posted 04 Feb 2022 at 13:29

Thanks, Jules


I'm now a lot happier about having to start the Bicolutamide and starting my treatment journey. I will collect the prescription  today, and start taking it on Monday after the consultation with the Urology Oncologist.


Nigel

User
Posted 04 Feb 2022 at 16:42

Yes only on hormone therapy for two years if things carry on as planned another 11 months to go bit tired at times but nothing that stops me carrying on as normal 

User
Posted 04 Feb 2022 at 18:13
They should have explained to you that the hormone treatment will be for somewhere between 6 - 36 months and is to weaken your cancer so that the radiotherapy is like a killer blow rather than a shove.

Only men who have metastases (spread) and are incurable stay on HT for life ... and some of them manage to have intermittent breaks!

One of the things you will want to clarify with the specialist nurse or oncologist is whether you will be on bicalutimide throughout. You are correct that it is sometimes given just for a couple of weeks before the injections start but, where the diagnosis isn't too high risk, bicalutimide is sometimes the only hormone treatment you will have. The side effects of tablets & injections are different because the two things work in different ways - the injections stop your testosterone production (in effect, chemical castration) whereas with bicalutimide tablets, your body still produces testosterone but it is disguised so that the cancer can't 'see' it. The injections will switch off your libido, the tablets won't so much. The worst side effect of bicalutimide for many men is the risk of growing breasts but there are things the hospital can do to minimise that risk.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Feb 2022 at 23:52

I went down the HT/RT route as others have said you have no mets so you will be off HT after a couple of years at the most.


Oncologist really should be explaining this to you. I guess they do it everyday so it is second nature to them, but us patients do not, so we don't know things like side effects until we are told. Fortunately people on this forum can keep you informed.

Dave

User
Posted 05 Feb 2022 at 00:46

Thanks everyone,


I'm already starting to feel more positive about the HT/RT route. Less invasive with pretty much the same outcomes as radical prostatectomy. Need to get my overactive bladder sorted, though, otherwise I'll never be able to lie on the RT treatment table for 10 mins with a full bladder!


Nigel

User
Posted 05 Feb 2022 at 01:29

Originally Posted by: Online Community Member
Need to get my overactive bladder sorted, though, otherwise I'll never be able to lie on the RT treatment table for 10 mins with a full bladder!


 


That can be tricky! I found the suggested technique of drinking 600 ml [I think that was the quantity, quite a large amount anyway] shortly beforehand wasn't a great option. Starting from the night before, drinking small amounts regularly and doing the same before the RT, with maybe one visit to the toilet an hour beforehand, followed immediately by a small-medium drink, with maybe another before RT gave less problems. Worst case was going out for a run in the morning before RT, and then drinking enough to balance water lost while running ... shocking!


RT itself does cause some irritation of the bladder which can add to urgency.


If you're waiting for RT and busting, it's usually possible to have a small urination [if that's a term 😀] without letting it all out.


 


Jules

Edited by member 05 Feb 2022 at 03:09  | Reason: Not specified

User
Posted 05 Feb 2022 at 09:55

For my treatment I had to have an empty bladder, which is much easier. It depends on the hospital and where the tumour is.


So don't start worrying about the procedure until you know you have something to worry about.

Edited by member 05 Feb 2022 at 09:57  | Reason: Not specified

Dave

User
Posted 05 Feb 2022 at 13:00

Thanks Dave and Jules,


I will try to get my waterworks issues sorted out. I have partial retention - my bladder does not completely empty, but the medics haven't come up with a reason for that. I had a flow rate test in October and on a full, really stingy bladder, I peed out 307 ml, but retained 235 ml. My flow rate is not as good as it was prior to the symptoms escalating last summer


During the biopsy I mentioned my issues with the Urologist and he showed me my urethra passing through the prostate on the ultrasound scanner, which showed that the urethra looks a decent calibre. My prostate is not enlarged, so the retention is so far unexplained.


The Urologists have prescribed Tamsilosin, which I will take to see if that helps (not started yet though). The stingy urinary tract has caused me more grief than the cancer diagnosis to be honest, but I wouldn't have sought medical help and got my cancer diagnosis if I'd been symptomless.


Nigel

User
Posted 05 Feb 2022 at 15:00
I'm on Tamsulosin as are many men who've had RT. One side-effect of RT is to make the prostate swell up and restrict urine flow. Tamsulosin completely solves the problem, though.

Best wishes,

Chris
User
Posted 27 Feb 2022 at 18:33

Bicalutamide works and reduces PSA. For me, the worst side effect is gynecomastia.


Contrary to a comment on this topic, health professionals are currently not recommending any treatment other than surgery as they regard male breast enlargement as irreversible. Research indicates that previously gynecomastia could be treated by radiation, medication or surgery.


The prevailing view, to the best of my knowledge, is that radiation may cause breast cancer and tamoxifen (preferred medication) can introduce a range of undesirable side effects in addition to hormone therapy effects. 


To be frank, my experience indicates that some health professionals regard gynecomastia as an acceptable price men should pay for prostate cancer treatment. Over 70% of men taking bicalutamide have gynecomastia, yet despite this being known, no treatment is offered before gynecomastia occurs. I have been told that surgery is the only option once breast tissue has formed.

User
Posted 27 Feb 2022 at 19:12

Originally Posted by: Online Community Member


Bicalutamide works and reduces PSA. For me, the worst side effect is gynecomastia.


Contrary to a comment on this topic, health professionals are currently not recommending any treatment other than surgery as they regard male breast enlargement as irreversible.




This is completely false. The majority of men are given the choice of either surgery or radiotherapy. The small dose of tamoxifen taken to counteract breast growth is unlikely to cause side-effects; it's a far smaller dose than is taken by women being treated for breast cancer (the primary use of tamoxifen).


Regards,


Chris


 

User
Posted 27 Feb 2022 at 19:39

I think you have misread it CC but I also think Holmdene has been given misinformation.


Like just about everything else with this bloody disease, it is a postcode lottery ... in some areas, men are automatically prescribed tamoxifen if it is expected that they will be on bicalutimide for an extended amount of time. In other areas, it is only given if requested. In some areas, tamoxifen isn't available but RT to the breast buds is given if the man asks nicely before he starts taking the tablets. Where we live, neither is available - funding, probably :-(


My understanding is that breast growth is irreversible which is why RT or tamoxifen must be done or taken before bicalutimide starts. I am aware though that Andy did some research and found data to suggest that tamoxifen can reverse some moob growth but not all.


It is true that if you do grow actual breasts, the only solution is surgery - getting that on the NHS is extremely difficult and I can only think of 2 or 3 men on this forum who have been successful.

Edited by member 27 Feb 2022 at 23:50  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2022 at 20:20

Lyn,


It was the statement that "health professionals are currently not recommending any treatment other than surgery" that I was saying was false. RT is assuredly still a recommended treatment!


I'm certainly not disagreeing that breast growth is permanent in most cases.


Cheers,


Chris


 

Edited by member 27 Feb 2022 at 20:22  | Reason: Not specified

User
Posted 27 Feb 2022 at 21:04

Thanks All,


I have noticed today and yesterday a strange feeling round round my nipples, so I guess my moobs are starting (I'm starting my 3rd week of Bica). I will mention this to the nurse specialists to see what is possible  


I think there should be a more information given about the side effects of all medications, particularly ones that you may have to take over a long period. (up to 3 years for primary treatment) This hasn't happened at all in my case.


Psychologically, I'm quite resistant to taking meds, so it took me a couple of weeks to start taking the Bica. I'd hate to have to take another med to counteract the side effects of the Bica, but would if it helped reduce the moobs - as long as the side effects of tamoxifen are minimal


Are moobs only a worry if on Bica or do the injected HT meds have similar side effects?


Nigel

User
Posted 27 Feb 2022 at 21:21
I certainly experienced no noticeable side-effects from tamoxifen, Nigel.

Cheers,

Chris
User
Posted 27 Feb 2022 at 22:15

Thanks, Chris


I really appreciate your input on this. People's real experience of treatment is so valuable


Cheers


Nigel

User
Posted 27 Feb 2022 at 23:37
Generally speaking, moobs are more of a side effect of bicalutimide and Stilboestrol and are less common with injected HT such as Zoladex or Prostap
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Feb 2022 at 23:43

Originally Posted by: Online Community Member


Lyn,


It was the statement that "health professionals are currently not recommending any treatment other than surgery" that I was saying was false. RT is assuredly still a recommended treatment!


I'm certainly not disagreeing that breast growth is permanent in most cases.


Cheers,


Chris



I think he meant "health professionals are not currently recommending any treatment other than surgery for gynaecomastia" (which is also incorrect but perhaps applies in the area where he lives) not "health professionals are not currently recommending any treatment other than prostatectomy"? 

Edited by member 27 Feb 2022 at 23:49  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Feb 2022 at 05:39
is HT always prescribed before RT? My husband has the option of either removal or RT, but so far nobody told us about HT being part of the treatment with RT. Thank you
User
Posted 28 Feb 2022 at 05:50
No not always, but these days more likely than not because evidence from trials supports its use.

User
Posted 28 Feb 2022 at 10:38

I have not been given false information.


When I started on bicalutamide, I was advised that I may develop sensitive breasts and experience some swelling. There was some vague discussion about medication alleviating some of these issues if they arose. Six months later, I have been informed by UCLH that they do NOT carry out radiation on patients medicating with bicalutamide and do not recommend either small or large doses of tamoxifen because of the additional side effects.


The significant point here is that neither radiation or tamoxifen were offered prior to taking bicalutamide. Consequently, if breast enlargement occurs, surgery is the only option.


I cannot comment on whether this issue is subject to regional interpretation and can only comment on my experience. 


 

User
Posted 03 Mar 2022 at 18:59
my husband has the choice between RP and RT, is HT always given before RT? Is HT given before RP? Thank you
User
Posted 03 Mar 2022 at 21:18
Most men have HT before RT - the exception might be if the cancer is very, very small but in that case, you would question why they were bothering to offer RT anyway.

HT is not normally given before RP - it has been used recently only because of Covid and the serious delays in some parts of the country while operating theatres were closed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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