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Meeting with oncologist Thursday

User
Posted 16 Jul 2022 at 21:32

Hi everyone, 

My dad was diagnosed with advanced PCa in May and finally has a meeting with the oncologist this coming Thursday to discuss treatment options. Completely  incidental find when having tests for something else- He is healthy and well, no symptoms whatsoever. His scores are- 

Age 64

PSA at diagnosis-170

Gleason-4+3

Think a couple of bone mets in pelvis and lower spine and some localised lymph involvement 

I was just wondering if anyone could please tell us  what sort of questions we should be asking? I’ve read so much about early chemo, things about enzalutamide/aberitone, triple therapy, cyber knife that my head is in a spin! 

Is it worth getting a second opinion?

Weve  also looked into the stampede trial, should he be querying his eligibility into that too? 

Thanks  in advance for any advice, we really appreciate it.

 

Edited by member 17 Jul 2022 at 07:46  | Reason: Not specified

User
Posted 17 Jul 2022 at 08:01

The Toolkit here will be helpful:

https://shop.prostatecanceruk.org/our-publications/just-diagnosed/tool-kit

There is a lot of other information under the publications section.

User
Posted 17 Jul 2022 at 11:39
It might be worth asking whether, if there are a limited number of bone mets, what the oncologist's view is of treating them with radiotherapy. Also, as you mentioned, some oncologists now like to use early chemotherapy. The problem with that is that, as you said, your Dad has no symptoms and is feeling fine. Chemotherapy is likely to make him feel very unwell indeed. Is it worth it in terms of balancing quality of life against the medical benefits of the treatment?

Best wishes,

Chris

User
Posted 17 Jul 2022 at 12:10

Reb, I don't want to give you false hope, so what I'm suggesting here is merely questions to ask to confirm you are on the right treatment.

One of our members elaine7848 got a second opinion and found the cancer had not spread so rather than treatment of HT to manage the cancer for the duration it became RP to cure the cancer. Now it is early days for Elaine but if the second opinion was right and the RP is successful, this is the difference between life and death and serious quality of life issues.

The next thing to establish is, whether radiation to the prostate and additional to the mets could cure the cancer (Chris' suggestion)?

Both of the above are unlikely to be the case and HT for life is the most likely treatment to be offered, HT is ok but it has many disadvantages. So I would want to be certain that was the only option before accepting it. ChrisJ who's profile you will find, declined HT for years until things started looking pretty grim, he is now on HT and doing OK. So your father could postpone treatment until he feels unwell.

As CheshireChris says the opinions of the oncologist are more valuable than a few people on the internet, but I guess we're giving you some talking points.

Dave

User
Posted 17 Jul 2022 at 16:08
I would suggest that consultant is asked what is the best treatment for your Dad and if this is not available to him where can he get it? He may qualify for a trial for example. Suggest a FULL diagnosis is obtained which is really a prerequisite. I would not consider a second opinion until this and answers to questions and recommendations obtained before considering a second opinion.
Barry
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User
Posted 17 Jul 2022 at 07:00
I wouldn't try and push for anything, personally. The oncologist is a professional; he'll know what the best treatment is more than random people on an Internet forum.

I would hazard a guess that the initial treatment will be hormone therapy. Because each treatment can only be used once, it's a question of what the best time is to use each one. If a particular treatment is used early, it's then no longer available to use later.

Best wishes,

Chris

User
Posted 17 Jul 2022 at 07:53

Thanks for the reply. ‘Push’ was the wrong choice of word- we completely respect his oncologists opinion. What I more meant was obviously not all treatments are available at all hospitals and he’s not going to offer something they can’t provide and we were just curious to know options. Eg- flags to research papers others have read or experiences others have had.

User
Posted 17 Jul 2022 at 08:01

The Toolkit here will be helpful:

https://shop.prostatecanceruk.org/our-publications/just-diagnosed/tool-kit

There is a lot of other information under the publications section.

User
Posted 17 Jul 2022 at 11:39
It might be worth asking whether, if there are a limited number of bone mets, what the oncologist's view is of treating them with radiotherapy. Also, as you mentioned, some oncologists now like to use early chemotherapy. The problem with that is that, as you said, your Dad has no symptoms and is feeling fine. Chemotherapy is likely to make him feel very unwell indeed. Is it worth it in terms of balancing quality of life against the medical benefits of the treatment?

Best wishes,

Chris

User
Posted 17 Jul 2022 at 12:10

Reb, I don't want to give you false hope, so what I'm suggesting here is merely questions to ask to confirm you are on the right treatment.

One of our members elaine7848 got a second opinion and found the cancer had not spread so rather than treatment of HT to manage the cancer for the duration it became RP to cure the cancer. Now it is early days for Elaine but if the second opinion was right and the RP is successful, this is the difference between life and death and serious quality of life issues.

The next thing to establish is, whether radiation to the prostate and additional to the mets could cure the cancer (Chris' suggestion)?

Both of the above are unlikely to be the case and HT for life is the most likely treatment to be offered, HT is ok but it has many disadvantages. So I would want to be certain that was the only option before accepting it. ChrisJ who's profile you will find, declined HT for years until things started looking pretty grim, he is now on HT and doing OK. So your father could postpone treatment until he feels unwell.

As CheshireChris says the opinions of the oncologist are more valuable than a few people on the internet, but I guess we're giving you some talking points.

Dave

User
Posted 17 Jul 2022 at 15:08

Many thanks for the replies. We are grateful of the talking points and will ask his oncologist his thoughts.

User
Posted 17 Jul 2022 at 16:08
I would suggest that consultant is asked what is the best treatment for your Dad and if this is not available to him where can he get it? He may qualify for a trial for example. Suggest a FULL diagnosis is obtained which is really a prerequisite. I would not consider a second opinion until this and answers to questions and recommendations obtained before considering a second opinion.
Barry
User
Posted 17 Jul 2022 at 17:13

If I may add a few thoughts which may spur other thoughts, acknowledging your head is already full.  Being prepared is good.

Sometimes they tailor treatment by age. 64 might warrant a more aggressive approach.  Hormones alone must seem to you they could do more, bearing in mind the quality of life issues others have mentioned.

I recall thinking I'd still want surgery whatever they found nearly 6yrs ago, although now I'd accept a full dose of RT instead.  I did look up private options and RT is very expensive.  However I had surgery and was told they wouldn't offer it if they thought it wouldn't be curative.

So this is probably very optimistic on the NHS but another writer on here surprised me when her husband was offered a trial on aggressive treatment recently.  I think he was quite a lot younger.

An aggressive treatment could be a psma scan that may show whether there is anything else of substance. If there is nothing else then focal treatment to the spine, followed by radiation mainly on the prostate but also to the other lesions if they're all in the abdomen area.  As you've already found, a triple dose of drugs next. That would be aggressive.

People have said on here that removing the main lesion has been found to be beneficial.

I noticed what Chris wrote above and perhaps he read the recent article about unqualified people on the internet not having the depth of knowledge needed.  Then again I've met people of status who remain resolutely within a constrained zone. Hopefully you can ask some gentle questions and what the doctor says will make more sense with your increased knowledge.  All the best Peter

 
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