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Advice please - inconsistent information from oncology

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User
Posted 16 Jun 2021 at 17:56

Hi


I have T3bN1M1a (PA lymph nodes)


initial PSA of 5.22 and Gleason of 3+4=7


diagnosed Jan 2020 after 2 years of ‘watching’ 


started Prostrap Jan 2020


36 grays Radiotherapy June/July 2020 


Current PSA 0.03


no chemotherapy as immunity damaged 


I have extensive ‘tumour’ in hips and behind heart and stomach 
At a recent meeting with the oncologist I was told that actually I am T4 and that the T3b is referring to the Prostrate only, being metastatic it is T4 - OK I get that 


however when asking about survival time lines (everyone is different) and the likely mortality times I was unprepared for that reply - that for advanced metastatic cancer ‘from diagnosis Prostrap is around 2 to 3 years (max) and further hormones another 1-2 years (max) making a rough timeframe of 4 - 5 years of which 18 months has gone. 


also comments like ‘will not do periodic scan unless PSA increases’ did not fill me with confidence as for the two years watch and wait it was around the 5 mark and nothing happened no biopsy nothing.


1) I am looking for a second option as to future treatment options (NHS) as on small pension  - any first class oncologists that you can recommend (so I can compile a short list)


2) anyone in similar circumstances? I would like to hear your treatment and are you being told the same timeline outcomes ? 


I appreciate your time for reading this as to be true the recent conversation (of which they were not that happy about) really took the wind out of me. 


cheers 


Don 


 

User
Posted 16 Jun 2021 at 20:16
Someone with just bone mets could potentially be around for 10-15 years if they respond very well to the hormones and are then well enough to have chemo, abiraterone or enzalutimude,etc when the hormones stop working. With mets to soft organs and chemo not an option, 3 to 5 years seems about par for the course.

I am not sure what purpose you think additional scans will serve? Men with advanced prostate cancer don't usually get regular scans.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2021 at 20:44

Hi


thank you for your comments which do give me a more optimistic view than another 2 years or so (differences permitting) 


I was not saying or seeking a more proactive scanning system but more of ‘what do others find in similar circumstances’ as I basically know no one going through this


again thanks


Don

User
Posted 16 Jun 2021 at 21:24
Okay. The fact that your PSA is at 0.03 and stable after 18 months of Prostap is a really good sign- some men become hormone independent within a few months and for some men, the hormones don't work at all so obviously their timelines will be much shorter than yours. With your diagnosis though, 5 years from now would be a good outcome.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Jun 2021 at 21:28
PS I suspect you have confused stage 4 and T4 - they are not the same thing. You can be a T3b but stage 4.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Jun 2021 at 09:33
Hi
Thank you for your time to help with information - it all helps
Kind regards
Don
User
Posted 07 Sep 2021 at 19:36

I joined today and saw this as I was searching for something else I wanted to comment on but as I was reading your post it became clear that this confusing information question must affect more than just you and me. You should re-title this - Oncologists playing god.


I was told Prostap was only good for 2 to 3 years but if it held the cancer in check, it could be three to five or possibly even seven years. 


Then two months ago I was told that once my Prostap stopped working in the next two to three years, they would have to put me on Enzalutamide to extend my life by a further ten months and it was when the course of tablets was started,  I could start planning for my death.


Recently I wanted to get a further brain scan to see if it had spread to my mind as I was becoming quite forgetful and it looks as though driving will have to stop soon. Yet this was refused.


There is no back up once you go to metatastic cancer, simply observation, which is rubbish, (stronger word removed), it should be there if the patient has concerns. It is our lives they are playing god with.

User
Posted 07 Sep 2021 at 20:19
Oncologists will be able to give a best guess based on thousands of previous cases both here and overseas. The average may be that a man with advanced prostate cancer that has spread to soft organs will have a good quality of life for 3 years, and abiraterone or enzalutimide can extend that by an average of 10 months. But these are averages so obviously there are men who do much better ad sadly, men who do far worse. If a man becomes hormone independent within months of starting hormone therapy, it is unlikely that chemo or abi / enza will give him an extra 5 years On the other hand, if a man starts HT and his PSA rops quickly & then is maintained at a low level for a couple of years, it may be that he will still be well 10 years or more later. We have certainly had members here who have lived good lives with advanced PCa for 15 years plus and others who were dead within months of diagnosis. Mets to the brain or skull tend to become terminal very quickly - mets to the bone may not.

Your forgetfulness is much more likely to be a side effect of the HT than anything else. It isn't true that there is no back up once you have metastatic cancer - if that is your experience, it may be worth you asking for a second opinion from a different oncologist.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Sep 2021 at 21:10

Hi


I have found (my) oncologist (head of department) to be unwilling to discuss anything about future options, currently having treatment for post radiotherapy bleeding  of which the oncologist flatly refused to believe it was radiation related, yet general surgery said, we get lots of it and the head of oncology does not know what s/he is talking about ! 

confidence in oncology was low before now zero


tried to raise about immunotherapy or TACE - the silence was deafening ! 


currently oncology have signed me off back to urology- who were the very people that for two years did nothing, no tests no scans until well spread into the lymph’s hips and soft tissue. 


feel very much annoyed and actively looking for a private appointment for a better discussion on ‘next steps’ for the future than a one sided blank look. 


wish you look 


 


 

User
Posted 07 Sep 2021 at 23:49
Yes Don, I think that you have been rather let down and if you were my dad or brother, I would be thinking about a second opinion from another oncologist - but not a urologist at this point. Immunotherapy is a bit of a red herring at this stage in your cancer - when other treatments have failed (in your case this could still be a few years off as you seem to be responding well to the Prostap) you can perhaps ask about immunotherapy but there are so many other things for you to try first - abiraterone or enzalutimide, or possibly apalutimide, Radium 223, docetaxel, cabazitaxel ... and then who knows what other new or trial drugs might emerge!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Sep 2021 at 07:29

Don 


I started passing blood , clots ,debris and tissue a few months after salvage RT. Urology blamed SRT and Radiology blamed surgery. 


By the time I got an out of area diagnosis of radiation cystitis it was too late and the bladder was severely damaged. My level of damage is rare and hence is not easily recognised. I now have a suprapubic catheter for life. 


Keep pushing and don't get fobbed off, I was given the names of a couple of consultants to go and see one in Manchester and one in London, my GP did a referral and I saw one of them within a few weeks, all pre covid.


I got in touch with the pelvic radiation disease association, who helped with information.


Thanks Chris

 
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