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So many treatment choices What to do?

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User
Posted 27 Apr 2022 at 18:38

After being diagnosed  with Prostate Cancer and doing a little research I do not understand why there are so many  treatment options offered as we all want the same outcome of a good quality of life with minimal lasting side effects surely all  Consultant with their vast knowledge and experience of Prostate Cancer must know the best treatment with the best possible out come given the patients results. They all seam to want the  patient to decide the best treatment. In my  case my gleeson score is 7 after a biopsy. Need advise on what to do.


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

User
Posted 01 May 2022 at 00:50

So many treatments... I wish.


For me the "menu" has been rather limited, and realistically there were no real choices.


The Doctor who performed the DRE didn't even wait for the lab results to confirm prostate cancer.  He was certain it was locally advanced prostate cancer, and there was no time to waste.  About 30 minutes after the DRE was over I was given two Degarelix injections, and referred to Weston Park, where they recomended Chemo (Docataxel) followed by Radiotherapy.  I put my trust in the Doctors and went along with everything they recomended.


The only real choice I ever had was Abiritone or Enzalutamide?  I went for Enzalutamide, because it was easier to take.  Now I'm on Cabazitaxel and reaching the end of the treament road, so the total number of treatments is a mere 5, and only once did I have to chose between drugs.  The only real choice was having treatment or not, and for me there was no real choice - I signed the forms there and then.  As I see it the meds buy me time, and I want as much of that as I can get, so whatever is offered I'm taking - it's the only way I can fight the cancer, and I'm fighting it all the way.


A few words of reassurance for anyone considering treatments, and who may be worried or concerned about all those horrible possible side effects they warn you about.  I wondered about those too, but went ahead anyway.  So far I've had plenty of side effects, but they have all been manageable with meds, or changes to lifestyle, and I wouldn't complain about anything.  At the end of the day these meds have bought me nearly three years of life I wouldn't otherwise have had (and I'm still going strong), and the quality of life I've had has been generally very good (with just small and infrequent bits of "down" time).  So take heart, and don't be afraid.

User
Posted 01 May 2022 at 08:52

To be honest don't know if any off us truly gets rid off this desease some are lucky with treatment path but we all know anything can change at any time even now with a psa off 0.01 I don't feel like I am sorted just waiting for the next problem to arise thats what it has done to my mental health hope most have better mindset than me it's hard 

Edited by member 01 May 2022 at 08:54  | Reason: Spelling mistake

User
Posted 27 Apr 2022 at 18:38

After being diagnosed  with Prostate Cancer and doing a little research I do not understand why there are so many  treatment options offered as we all want the same outcome of a good quality of life with minimal lasting side effects surely all  Consultant with their vast knowledge and experience of Prostate Cancer must know the best treatment with the best possible out come given the patients results. They all seam to want the  patient to decide the best treatment. In my  case my gleeson score is 7 after a biopsy. Need advise on what to do.


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

User
Posted 28 Apr 2022 at 11:05

Hi,


Welcome.


Yes it is a pity there isnt a simple proven path to follow. If you can provide a bit more info it would help. Apart from a Gleason score there should also be a Stage factor. T#N#M#. Which describes the tumor volume and spread with and or beyond the prostate. If you dont have that yet then you may need a scan to provide that.


It's those variables that can make some treatments possible and others not worthwhile. The more advanced the disease the fewer curative options. Early stage low volume, low Gleason disease has more choices and can be hard for an individual to choose but at least it is slow moving so not necessary to panic.


The other factors are age and life priorities so it's a question of the individual weighing up treatments and risks relevant to their own life situation.


Regards


John

User
Posted 28 Apr 2022 at 11:40

As mentioned by Chevy57, it is the variables that make choosing the right treatment so problematic. Each of the various treatments have side effects and  with low grade and potentially curable prostate cancer it does make sense for the patient rather than the consultant to decide what is the best treatment. In my case I chose surgery as I wanted  a treatment that would only take a day or so to complete, that had, for my circumstances, a very good potential outcome, that meant I could opt for another treatment if the one I chose failed and meant that I would know the actual and real grading of the cancer present (the prostate is sliced and diced when removed).


 


lvan

User
Posted 28 Apr 2022 at 12:23

Hi....we found it a bit unnerving that husband was just given two leaflets...one for radiotherapy and the other for prostatectomy and not given a "best" option from the consultant. I have found this online community invaluable in the information provided and we decided on Radical Prostatectomy. Hubby had the op on 12April. Please read as much as you can and ask questions on this forum. I haven't posted much but have found so much comfort from following treatments and outcomes here.

User
Posted 28 Apr 2022 at 17:33

So to give you a background as to choices, after my biopsy and discussion with consultants, I was given all the leaflets under the sun and spent a while reading the pros and cons of each one. 


I was the same as you with Gleason of 7(3+4) but after the MDT meeting and a call with the consultant, I was only given two choices of which one was not my preferred choice and really only had one left which was prostatectomy. 


so arm yourself with the info and maybe you may not have the full choices as you think 

User
Posted 01 May 2022 at 09:10

Yes Gaz,


I agree, it's always there to some degree. If anyone cares to ask I say it has consumed my life for 7 years. Doesnt mean there aren't lots of positives to balance the negatives. Just a bit of a mental load.


John

User
Posted 01 May 2022 at 09:52

Originally Posted by: Online Community Member


i am still thinking that if recovery is good at 2 years with few lasting side effects for all treatments why would you choose surgery with a gaurantee of incontinence in the short, medium and possibly long term and the other risks associated with a major operation  ?



Well, one reason is that surgery gets it "over and done with" in one go, whereas with the HT/RT option you're typically on hormone therapy for six months prior to RT, you then have six weeks of daily (Mon-Fri) trips to the hospital for RT, and then you're still on HT for another year to 18 months afterwards, so it's a much more drawn-out process. 

In my case HT/RT was the recommended treatment, but where there is a choice it's entirely understandable that many men do opt for surgery. 


Best wishes,


Chris


 

Edited by member 01 May 2022 at 09:53  | Reason: Not specified

User
Posted 01 May 2022 at 10:36

That's right Chris. You have to take control of the things you can influence. Once on the path then no point in going over steps already taken, follow it through and make the best decisions you can.


Like Lynne's quote said. Life can only be lived forward. (Or similar).


John

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User
Posted 28 Apr 2022 at 11:05

Hi,


Welcome.


Yes it is a pity there isnt a simple proven path to follow. If you can provide a bit more info it would help. Apart from a Gleason score there should also be a Stage factor. T#N#M#. Which describes the tumor volume and spread with and or beyond the prostate. If you dont have that yet then you may need a scan to provide that.


It's those variables that can make some treatments possible and others not worthwhile. The more advanced the disease the fewer curative options. Early stage low volume, low Gleason disease has more choices and can be hard for an individual to choose but at least it is slow moving so not necessary to panic.


The other factors are age and life priorities so it's a question of the individual weighing up treatments and risks relevant to their own life situation.


Regards


John

User
Posted 28 Apr 2022 at 11:31

Well sometimes it is a clear choice. In my case the specialists all agreed only one path had a chance of working.


However it is quite often the case that several options are equal.


How would you like your eggs cooked: boiled, poached, fried, scrambled? It makes no difference to your nutrition, or the chef, but you may have a preference.


So some of the prostate cancer treatments may have different side effects, It makes no difference to the outcome, or the medic, but you may have a preference.


Having had many breakfasts I know how I like my eggs. As you are probably going to only have one prostate treatment, you can listen to all of the opinions, or take a lucky dip.


Next time the waitress asks how you would like your eggs cooked, ask all the other diners their opinions, you will be none the wiser, and the same applies for prostate treatment.


p.s. I had my prostate fried (radiotherapy), which coincidentally is how I like my eggs.


 

Dave

User
Posted 28 Apr 2022 at 11:40

As mentioned by Chevy57, it is the variables that make choosing the right treatment so problematic. Each of the various treatments have side effects and  with low grade and potentially curable prostate cancer it does make sense for the patient rather than the consultant to decide what is the best treatment. In my case I chose surgery as I wanted  a treatment that would only take a day or so to complete, that had, for my circumstances, a very good potential outcome, that meant I could opt for another treatment if the one I chose failed and meant that I would know the actual and real grading of the cancer present (the prostate is sliced and diced when removed).


 


lvan

User
Posted 28 Apr 2022 at 12:23

Hi....we found it a bit unnerving that husband was just given two leaflets...one for radiotherapy and the other for prostatectomy and not given a "best" option from the consultant. I have found this online community invaluable in the information provided and we decided on Radical Prostatectomy. Hubby had the op on 12April. Please read as much as you can and ask questions on this forum. I haven't posted much but have found so much comfort from following treatments and outcomes here.

User
Posted 28 Apr 2022 at 12:33

There is not always a choice of treatment for a number of reasons. There are different types of cancer and different stages and the amount of cancer and where it is located can be important together with a persons age and treatment preferences. In order to give you our most relevant thoughts, we need need your full diagnosis which you can ask for if you don't have it and ask to be copied in to all your GP/Hospital correspondence. If you enter salient details into your Profile/Bio and keep this updated members can check on this and make more meaningful replies. We may express our views on certain aspects but ultimately personal decisions have to be made by you on the basis of what your Hospital team/Consultant says is suitable and your preferences. You can see what most people have written by clicking on their avatar.


As regards treatment, there are generally 4 main types which can be given in different ways. That is by removing the Prostate entirely Prostatectomy or part of it (TURP), one of several types of radiation or a form of focal therapy of which there are several types. Then there is Hormone Treatment. All of the foregoing may be administered singly or in combination.  I have not included Active Surveillance as that is monitoring rather than active treatment.


I would suggest you download or obtain a hard copy of the 'Tool Kit' which is published by this charity. It not only provides basic details about the disease but also on treatments and potential side effects. This may help you with your treatment decision and if you want a one to one, you can contact the Specialist Nurses on this Charity but remember they will not be in the same position as your Hospital Consultant. Then there is your GP who is the sort of link person and the knowledge of these varies. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100


 

Edited by member 28 Apr 2022 at 13:32  | Reason: to highlight link

Barry
User
Posted 28 Apr 2022 at 17:33

So to give you a background as to choices, after my biopsy and discussion with consultants, I was given all the leaflets under the sun and spent a while reading the pros and cons of each one. 


I was the same as you with Gleason of 7(3+4) but after the MDT meeting and a call with the consultant, I was only given two choices of which one was not my preferred choice and really only had one left which was prostatectomy. 


so arm yourself with the info and maybe you may not have the full choices as you think 

User
Posted 28 Apr 2022 at 19:21

Just to add a little to my previous reply, we don't have a lot of information about your diagnosis so can just generalize at present. There is not a great deal of difference between the successful results of the two main treatments of surgery and radiotherapy. Surgery is not likely to be offered if the cancer has broken out of the prostate and gone to bone. Other places PCa likes to go to is seminal vesicles and lymph nodes although sometimes suspect nodes are taken with Prostatectomy. Radiotherapy can treat beyond where the knife can go which is a determinate in some cases. Some men just can't wait to get their Prostate removed but in a significant number of cases it does not do the job completely and needs to be augmented by Radiotherapy and possibly Hormone treatment too, thereby adding to side effects of Prostatectomy. So some men take the view that they might just as well have RT in the first place. Some men don't mind surgery and the greater risk of incontinence (although risk of long term incontinence is quite small). Some men don't like the idea of being subject to radiation and the need to attend 20 or more sessions (called fractions). There are many pros and cons to each form of treatment and side effects that I haven't even touched on, so when you have a choice, the patient can weigh these up and make his decision. So differences in men's diagnosis and their attitude to treatment means it is best left to the patient where he has a choice. Some men opt for a Focal treatment where there is a choice so again more pros and cons. You therefore need to get a handle on this highly complex disease and the 'Tool Kit' is a good place to start. Don't be over swayed by results anybody may have had here or what men might say in the pub. You might have a similar diagnosis as any of them but have very different results.

Edited by member 28 Apr 2022 at 19:25  | Reason: Not specified

Barry
User
Posted 30 Apr 2022 at 10:26

Thank you for replies.  I have an oncology appointment next week and then an appointment with a surgeon 2 days after i will ask them for their advise but my concern is that the oncologist will offer radio therapy and the surgeon surgery i am still thinking that if recovery is good at 2 years with few lasting side effects for all treatments why would you choose surgery with a gaurantee of incontinence in the short, medium and possibly long term and the other risks associated with a major operation  ?

User
Posted 30 Apr 2022 at 11:31
User
Posted 30 Apr 2022 at 14:00
That's a useful thread Dave and one that I have bookmarked as the reasoning and clarification sought by DA has been sought before and no doubt will be raised again by another newbie in due course.
Barry
User
Posted 30 Apr 2022 at 18:45

My husband “only” had two options. HT+RT or RALP. When he was diagnosed at end of Jan 22 he said from the very beginning he wanted the prostate removed - at that stage we weren’t sure if we would be offered surgery as further scans were needed. We met with the oncologist and discussed HT+RT. Incidentally, both options in my husbands case would give the same curative outcome. It really is down to personal choice, in my husbands case he felt happier knowing the tumours would be removed and if required he could have salvage RT if required, it was another string to his bow as it were. He felt the HT and RT route was quite long winded and his preference was to have the prostate removed.  It was explained to us, that to remove the prostate following RT is quite complex and not really recommended. We were grateful for one option and that the cancer could be treated with a curative intent. So for us, once surgery was an option it wasn’t too difficult a decision. Once you have all the facts, you will probably lean one way or the other. There are so many people on here who can help and this forum has been invaluable in terms of support and advice. Incidentally, he is 6 weeks post op and doing well. Good luck with your decision.

Edited by member 30 Apr 2022 at 18:54  | Reason: Not specified

User
Posted 01 May 2022 at 00:50

So many treatments... I wish.


For me the "menu" has been rather limited, and realistically there were no real choices.


The Doctor who performed the DRE didn't even wait for the lab results to confirm prostate cancer.  He was certain it was locally advanced prostate cancer, and there was no time to waste.  About 30 minutes after the DRE was over I was given two Degarelix injections, and referred to Weston Park, where they recomended Chemo (Docataxel) followed by Radiotherapy.  I put my trust in the Doctors and went along with everything they recomended.


The only real choice I ever had was Abiritone or Enzalutamide?  I went for Enzalutamide, because it was easier to take.  Now I'm on Cabazitaxel and reaching the end of the treament road, so the total number of treatments is a mere 5, and only once did I have to chose between drugs.  The only real choice was having treatment or not, and for me there was no real choice - I signed the forms there and then.  As I see it the meds buy me time, and I want as much of that as I can get, so whatever is offered I'm taking - it's the only way I can fight the cancer, and I'm fighting it all the way.


A few words of reassurance for anyone considering treatments, and who may be worried or concerned about all those horrible possible side effects they warn you about.  I wondered about those too, but went ahead anyway.  So far I've had plenty of side effects, but they have all been manageable with meds, or changes to lifestyle, and I wouldn't complain about anything.  At the end of the day these meds have bought me nearly three years of life I wouldn't otherwise have had (and I'm still going strong), and the quality of life I've had has been generally very good (with just small and infrequent bits of "down" time).  So take heart, and don't be afraid.

User
Posted 01 May 2022 at 08:52

To be honest don't know if any off us truly gets rid off this desease some are lucky with treatment path but we all know anything can change at any time even now with a psa off 0.01 I don't feel like I am sorted just waiting for the next problem to arise thats what it has done to my mental health hope most have better mindset than me it's hard 

Edited by member 01 May 2022 at 08:54  | Reason: Spelling mistake

User
Posted 01 May 2022 at 09:10

Yes Gaz,


I agree, it's always there to some degree. If anyone cares to ask I say it has consumed my life for 7 years. Doesnt mean there aren't lots of positives to balance the negatives. Just a bit of a mental load.


John

User
Posted 01 May 2022 at 09:21

Thanks John not on my own then my life has changed from a to z in last 2years wondering if I should have left it and had a couple off good years instead off all this my choice but would think again next time 

User
Posted 01 May 2022 at 09:52

Originally Posted by: Online Community Member


i am still thinking that if recovery is good at 2 years with few lasting side effects for all treatments why would you choose surgery with a gaurantee of incontinence in the short, medium and possibly long term and the other risks associated with a major operation  ?



Well, one reason is that surgery gets it "over and done with" in one go, whereas with the HT/RT option you're typically on hormone therapy for six months prior to RT, you then have six weeks of daily (Mon-Fri) trips to the hospital for RT, and then you're still on HT for another year to 18 months afterwards, so it's a much more drawn-out process. 

In my case HT/RT was the recommended treatment, but where there is a choice it's entirely understandable that many men do opt for surgery. 


Best wishes,


Chris


 

Edited by member 01 May 2022 at 09:53  | Reason: Not specified

User
Posted 01 May 2022 at 10:26

Gaz and Chevy,I know many of us share the same views i asked if it was too late to opt out of surgery when having the cannula put in for anesthetic, i wasn't having salvage RT but i did . I have dodged HT by going on a trial. 


It is bad enough wondering "what ifs" about a three year delay caused by my GP practice.


Consider the alternative, your next treatment may work and be adverse effect free. Are you mentally strong enough to ponder the what ifs in the future if you do nothing.


Thanks Chris


 

Edited by member 01 May 2022 at 10:32  | Reason: Not specified

User
Posted 01 May 2022 at 10:36

That's right Chris. You have to take control of the things you can influence. Once on the path then no point in going over steps already taken, follow it through and make the best decisions you can.


Like Lynne's quote said. Life can only be lived forward. (Or similar).


John

User
Posted 04 May 2022 at 10:10

Hi David, Can you share your detailed history and investigation results?

 
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