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Help! Looks like they cant treat me

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User
Posted 16 Oct 2021 at 08:38

Hi thanks for letting me join the group. I was diagnosed with PC 2 days ago stage T2c and grade 7. Not so bad but the Urologist says he wont operate due to my existing health situation. I had stage 4 cancer 40 years ago had surgery (testicle removed) very aggressive radiotherapy and chemotherapy. Great for 30 years but last 10 years kidney problems, adrenal glands don't work, damaged bowel, etc. Urologist says operation would be life threatening but I have had two major operations without general anesthesia recently, including a full hip replacement. He says its still in the prostate and not spread but it is a high risk cancer. 

He says I cant have radiotherapy because of the levels of radiotherapy I had 40 years ago and they cant do it on the same area twice? 

My concern is if they don't do something whilst it is localised I will not be able to have chemotherapy if it spreads because my kidneys will not be able to take it.

Im seeing the oncologist next week so hopefully get some better info but if anyone has any ideas that would be great.

Regards Tim 

User
Posted 16 Oct 2021 at 13:56

Hi Tim, it can be v scary when diagnosed, but it does get easier. 

My husband had intermittent hormone treatment which reduced his PSA significantly during that year and for the year after the treatment. 

 There are lots of experts on this forum who no doubt will share their thoughts -  radiotherapy & surgery are not the only options available. 

Teresa x

User
Posted 16 Oct 2021 at 14:16

Well hormone therapy, can hold the cancer at bay for a number of years.

Focal therapy like HIFU might be appropriate. Not very common in the UK, but it may be suitable for you. It is less invasive than surgery and won't take you over the radiation limit.

Dave

User
Posted 16 Oct 2021 at 16:45

Radiotherapy for testicular cancer is usually not in the same place as for prostate cancer, and I've come across some men who had that for testicular cancer many decades ago, and go on to have radiotherapy for prostate cancer. (One challenge can be finding the original testicular cancer radiotherapy dosing plans. They should still exist, but can be a challenge finding them if the original hospital doesn't do radiotherapy anymore.) Brachytherapy might be an option even if external beam isn't, but they can do very clever things with directing external beam nowadays.

User
Posted 16 Oct 2021 at 20:39
My guess is that the surgeon you met only does laparoscopic (keyhole) RP; it isn't possible to stay awake for keyhole RP as you are tipped head down for a number of hours. You could ask for a referral to another surgeon who does open surgery but the recovery takes longer and it may still be the case that your other health issues make the op too risky.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Oct 2021 at 20:42
An afterthought - the urologist is not an expert in radiotherapy so the opinion of the oncologist this week matters more. Certainly worth you asking about focal treatment like HIFU, cryotherapy or laser ablation- you might be able to get on a trial?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Oct 2021 at 22:15

Originally Posted by: Online Community Member
I dont think they will have the records as it was 40 years ago and the hospital was knocked down 25 years ago.

They will exist, but finding out what hospital they got transferred to and finding them in their archives can take a while.

User
Posted 17 Oct 2021 at 01:56
I would also suggest you check other options suggested before accepting you cannot have a radical treatment for your PCa. I suggest you get a second opinion from a leading hospital in particular the UCLH in London because they provide a range of treatments including the focal ones. Additionally, whilst Proton Beam has not been shown to be better than Photon Radiation for PCa, It might be a possibility for you if the conventional radition is ruled out. (The Proton Beam unloads almost completely on the tumour so the paths of previous treatment might not be so critical) UCLH are in the course of treating with Proton Beam and there is a functioning unit at The Christi in Manchester. Otherwise, there is a centre where you pay at the Rutherford in Newport.
Barry
User
Posted 17 Oct 2021 at 14:00
I investigated HIFU and it is available privately - if I reacll correctly the cost is about £12,000.
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User
Posted 16 Oct 2021 at 13:56

Hi Tim, it can be v scary when diagnosed, but it does get easier. 

My husband had intermittent hormone treatment which reduced his PSA significantly during that year and for the year after the treatment. 

 There are lots of experts on this forum who no doubt will share their thoughts -  radiotherapy & surgery are not the only options available. 

Teresa x

User
Posted 16 Oct 2021 at 14:16

Well hormone therapy, can hold the cancer at bay for a number of years.

Focal therapy like HIFU might be appropriate. Not very common in the UK, but it may be suitable for you. It is less invasive than surgery and won't take you over the radiation limit.

Dave

User
Posted 16 Oct 2021 at 16:45

Radiotherapy for testicular cancer is usually not in the same place as for prostate cancer, and I've come across some men who had that for testicular cancer many decades ago, and go on to have radiotherapy for prostate cancer. (One challenge can be finding the original testicular cancer radiotherapy dosing plans. They should still exist, but can be a challenge finding them if the original hospital doesn't do radiotherapy anymore.) Brachytherapy might be an option even if external beam isn't, but they can do very clever things with directing external beam nowadays.

User
Posted 16 Oct 2021 at 18:11
thank you for taking the time to reply. That is helpful. I dont think they will have the records as it was 40 years ago and the hospital was knocked down 25 years ago. I think they just used really big doses back then in an attempt to do the cancer. Sadly Ive now had to have stents in renal arteries, got bowel issues and kidney issues etc but at least Im still here. Hopefully the oncologist might have some ideas when I meet him next week. Thank you again.
User
Posted 16 Oct 2021 at 20:39
My guess is that the surgeon you met only does laparoscopic (keyhole) RP; it isn't possible to stay awake for keyhole RP as you are tipped head down for a number of hours. You could ask for a referral to another surgeon who does open surgery but the recovery takes longer and it may still be the case that your other health issues make the op too risky.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Oct 2021 at 20:42
An afterthought - the urologist is not an expert in radiotherapy so the opinion of the oncologist this week matters more. Certainly worth you asking about focal treatment like HIFU, cryotherapy or laser ablation- you might be able to get on a trial?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Oct 2021 at 22:15

Originally Posted by: Online Community Member
I dont think they will have the records as it was 40 years ago and the hospital was knocked down 25 years ago.

They will exist, but finding out what hospital they got transferred to and finding them in their archives can take a while.

User
Posted 17 Oct 2021 at 01:56
I would also suggest you check other options suggested before accepting you cannot have a radical treatment for your PCa. I suggest you get a second opinion from a leading hospital in particular the UCLH in London because they provide a range of treatments including the focal ones. Additionally, whilst Proton Beam has not been shown to be better than Photon Radiation for PCa, It might be a possibility for you if the conventional radition is ruled out. (The Proton Beam unloads almost completely on the tumour so the paths of previous treatment might not be so critical) UCLH are in the course of treating with Proton Beam and there is a functioning unit at The Christi in Manchester. Otherwise, there is a centre where you pay at the Rutherford in Newport.
Barry
User
Posted 17 Oct 2021 at 14:00
I investigated HIFU and it is available privately - if I reacll correctly the cost is about £12,000.
 
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