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Consultants not being clear about treatment!

User
Posted 11 Mar 2019 at 17:38

Hi there.

My 72-year-old dad has been diagnosed with prostate cancer.  That was in mid-December and he's yet to start treatment. This is mainly due to conflicting information he's repeatedly received from different consultants. Each one recommends the below, but they can't seem to agree as there's very little communication between them, and a previous operation for incontinence has created additional complication of side effects of treatment, so my dad wants clarification.

  • One consultant has said to him he needs to have his prostate removed (that'd get rid of the cancer and his long term protratitis) but comes with other side effects.
  • Another consultant recommends a brachytherapy which might worsen the existing prostatitis.

To add to the hassle, his local hospital called him in today for a meeting - my dad hoped this would provide him with a final recommendation. Instead, the consultant is sending him to a hospital in London to see the other consultant, who he's already spoken to.

Can anyone suggest an effective course of action to get this sorted?

Is there an organisation we can contact that could somehow 'pull rank' on the consultants to get them to provide my dad with the best course of action ASAP?

My younger brother was treated for testicular cancer last summer/ autumn in Cambridge Addenbrookes Hospital, yet the route to treatment was crystal clear as soon as they'd diagnosed him. Sadly, my dad is experiencing the complete opposite.

Thanks

Edited by member 11 Mar 2019 at 20:15  | Reason: Potential identifying info removed.

User
Posted 11 Mar 2019 at 18:54
Good evening,

Any consultant will only suggest the treatment that they can offer, that is all they "know about" and are expert on.

It has been suggested here that a consultant has recommended a treatment option outside of their specialist field, but I doubt that it was actually the case. Imagine - a plumber recommending a fuse in your electrical circuit. How and what would they know?

The reality is that you and Dad, will have to weigh up all the information, bearing in mind it is largely "best guess" information, about his condition and then make a choice. Like we all do or did.

I am truly sorry and sad that you have felt the need to post as you have, but the reality of PCa is that there is no clear "leader" in terms of the treatment. If there was, all the others would be on the dole.

Surgery is, as I understand current thinking, mostly recommend for younger patients, with many many years ahead hopefully?

You and Dad may wish to consider his expected longevity, in context of other family members, before making a decision on treatment?

atb

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 11 Mar 2019 at 19:34
I'm afraid that's just the way it works. There are two available treatment options for your Dad, and it's up to him to decide which one he wants to go for - nobody is going to make the decision for him. This is absolutely normal - your Dad is not being "mistreated" in any way.

If you've not done so already, I'd suggest downloading the "Toolkit" from this site which will give you a lot of helpful information about the pros and cons of the different treatments. You can also phone the Freephone number at the top of the page and have a chat with the specialist nurses, who will be happy to answer any medical questions you may have.

Best wishes,

Chris

User
Posted 11 Mar 2019 at 19:43
It would help if you could post your dad's full diagnosis - his Gleason score, staging, etc plus his PSA at diagnosis and if you know it, the % of cores that were cancerous.

Usually, that makes the diagnosis look something like T2 G7(3+4) NoMo or T1 G8(4+4) N1 Mx or something like that. Some hospitals don't give a Gleason score now and report it as a stage 3 or similar.

Depending on his results, he may also have the option of active surveillance (regular testing & monitoring but no radical treatment) - it seems that is the path he is on while decisions are made anyway, but some men will choose to stay on AS for as long as possible, particularly if treatment is going to make other medical conditions more problematic.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Mar 2019 at 20:13

Many thanks for your replies and explanations. That helps clarify the usual process.

It's a very daunting decision of course, and I feel my dad needs much more guidance from the professionals (I have ME and so can't be with him as I have my own health struggles, otherwise, I'd go to appointments with him and ask more questions to help him decide.)

To briefly provide more context to the frustration - my dad has had great support from Macmillan and it was their support worker who sat with my dad recently to explain his consultants should have met to discuss his treatment. They hadn't, and so my dad requested that they do so. The earlier-mentioned meeting was the outcome. My dad feels like he's going round in circles.  

I'm sure that once treatment gets underway, it will be excellent. It's distressing hearing my dad being so upset in the meantime.

 

 

 

User
Posted 11 Mar 2019 at 20:25

Originally Posted by: Online Community Member
It would help if you could post your dad's full diagnosis - his Gleason score, staging, etc plus his PSA at diagnosis and if you know it, the % of cores that were cancerous.

Usually, that makes the diagnosis look something like T2 G7(3+4) NoMo or T1 G8(4+4) N1 Mx or something like that. Some hospitals don't give a Gleason score now and report it as a stage 3 or similar.

Depending on his results, he may also have the option of active surveillance (regular testing & monitoring but no radical treatment) - it seems that is the path he is on while decisions are made anyway, but some men will choose to stay on AS for as long as possible, particularly if treatment is going to make other medical conditions more problematic.

The diagnosis is 2/11 cores positive Gleason 4+4

Thanks

 

User
Posted 11 Mar 2019 at 21:14
I really don't think there's any more that anyone can do. As I explained previously, your Dad is following the same path that pretty much everyone here has followed: he's been given two options, one surgical and the other radiological, and now he needs to make a decision which one to go for.

There is no "right" answer; both surgery and radiology have life-changing consequences, and it's a matter of deciding which is least objectionable to him personally. As I suggested before, download (or order) the Toolkit which will give you the pros and cons of each treatment, and talk to the nurses (or ask here) if you have any questions - there are lots of people here who've opted for each choice.

At the end of the day, though, you need to decide.

All the best,

Chris

User
Posted 13 Mar 2019 at 15:12

Thanks, Chris.

My dad is going to call Prostate Cancer UK again for some more advice on making his decision. Hopefully, they can help reassure him. 

Interesting you say there is no 'right' answer. It may make his process of deciding a little bit less stressful.

 

 

 

 
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