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Clatterbridge

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User
Posted 17 Dec 2023 at 23:15

Anyone have any recommendations of docs at Clatterbridge for private consultation ? .(not treatment) 

I'm am ex pat scouser living in the US and was recently diagnosed and having HT and RT . Im not happy at all about the HT treatment protocol I am being prescribed (6 monthly eligard shots for min of 2 years) as the side effects are making my quality of life dreadful and want a 2nd opinion . I will be back in the UK in feb and would like to use Clatterbridge as they are local to me and have a great reputation .

Thanks 

 

 

 

 

User
Posted 18 Dec 2023 at 07:28

We have experience of a surgeon at clatterbridge who comes highly recommended and I know he does private work but not (yet!) an oncologist for HT/RT. We’ve been v pleased so far with the treatment received. If you need the surgeons name happy to pass it on if I’m allowed to? He did operate on my OH who was quite advanced - he was given options of RARP or HT/RT at that time borderline T3a/b. 
good luck 

kate 

User
Posted 18 Dec 2023 at 09:22

The HT is a gamble - do you go for it now which halves the recurrence rate in high risk cancer, or do you duck out of it now and increase the risk of having to go on it lifelong later?

Having said that, the most important part of it is before RT, concurrent with RT, and after RT. The further out you go after the RT, you are probably gaining proportionally less. However, the case where it probably is most important is where you have a high risk cancer with micromets because you are probably relying on the HT to kill the micromets after the main tumour has been killed (in so far as we understand how it works, which is rather limited). It sounds like they think this could be your case with possibly lymph node involvement. In the UK, in the case of lymph node involvement, you might have got chemo or one of the more advanced hormone therapy drugs in addition to Eligard (which is same drug as Prostap here, except Prostap doesn't come in 6 monthly doses).

Did your RT also target pelvic lymph nodes?

 

Edited by member 18 Dec 2023 at 09:24  | Reason: Not specified

User
Posted 18 Dec 2023 at 20:04
The use of HT in parallel with RT is well established in the UK where the financial incentive is less perverse. It is also backed by lots of research.

But ultimately it's your life and your choice, just make sure it's an informed choice!

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User
Posted 18 Dec 2023 at 07:28

We have experience of a surgeon at clatterbridge who comes highly recommended and I know he does private work but not (yet!) an oncologist for HT/RT. We’ve been v pleased so far with the treatment received. If you need the surgeons name happy to pass it on if I’m allowed to? He did operate on my OH who was quite advanced - he was given options of RARP or HT/RT at that time borderline T3a/b. 
good luck 

kate 

User
Posted 18 Dec 2023 at 09:22

The HT is a gamble - do you go for it now which halves the recurrence rate in high risk cancer, or do you duck out of it now and increase the risk of having to go on it lifelong later?

Having said that, the most important part of it is before RT, concurrent with RT, and after RT. The further out you go after the RT, you are probably gaining proportionally less. However, the case where it probably is most important is where you have a high risk cancer with micromets because you are probably relying on the HT to kill the micromets after the main tumour has been killed (in so far as we understand how it works, which is rather limited). It sounds like they think this could be your case with possibly lymph node involvement. In the UK, in the case of lymph node involvement, you might have got chemo or one of the more advanced hormone therapy drugs in addition to Eligard (which is same drug as Prostap here, except Prostap doesn't come in 6 monthly doses).

Did your RT also target pelvic lymph nodes?

 

Edited by member 18 Dec 2023 at 09:24  | Reason: Not specified

User
Posted 18 Dec 2023 at 19:05

thanks - think the problem is that I really don't feel I have enough information to understand the risk if I either - stop/go to intermittent/change prescription 

The oncologist and urologist basically ( I felt ) gave me no options . Im also becoming very cynical about the system here in the USA and how conflicted docs are when they are clearly motivated to overprescribe expensive drugs . (my gastro wanted to change my UC meds from one thats $30/month to one thats $8k a month without any clear justification)  Hence I want my 2nd opinion to come from Canada or the UK .

I do know that mentally I cant face 2 years of this - primarily due to mental health due to the loss of libido and ED- I lost a lot of my 40s to bad health (ulcerative colitis ) and just got though 3 yrs of pain from knee and hip surgery - Im only 61 . I had no symptoms and this was a bolt from the blue . Ive suffered depression before in my 50s to the point of attempting suicide . Quality of life even if it's at risk of longer life is paramount to me. 

 

User
Posted 18 Dec 2023 at 20:04
The use of HT in parallel with RT is well established in the UK where the financial incentive is less perverse. It is also backed by lots of research.

But ultimately it's your life and your choice, just make sure it's an informed choice!

User
Posted 20 Dec 2023 at 02:11

I spoke to the oncologist this morning and they are using RT on the localized lymph nodes as well as the prostate but he said they are using the same radiation levels as if they showed no positive signs as the results were borderline . 

 
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