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Treatment expectations

User
Posted 05 Aug 2019 at 03:25

Hello. My first post as I am trying to find information on behalf of my father who was diagnosed with PC 6 months ago and I'm worried he is not getting the correct treatment. He is 77 and gets confused so can't remember the gleason score etc so all I know is he has advanced PC that has spread to his lymph nodes but is not yet anywhere else that we are aware of.

Since diagnosis he was put on bicalutamide 150mg for a few weeks and then hormone therapy injections administered by a local nurse. No chemo or radiotherapy was suggested and he was told his asthma was too bad for it to be considered. Apart from a blood test a month after the injections started he has not had any check or blood test since. Seen no-one and when he asked the nurse how long he had to have the HT for she didn't know.

He is now in hospital after having an asthma attack a week ago and when I asked the nurses if the breathlessness could be linked to the cancer she said they hadn't looked at it. No chest xray or anything to see if it has spread. Still nothing from the original consultant. 

I am now getting involved as my father doesn't like to make a fuss but is scared and confused. I have no idea what would be the expectations for treatment and whether it is normal to have no check up etc after starting HT or whether RT is really ruled out..

Any help or advice much appreciated  

Lucy  

 

User
Posted 05 Aug 2019 at 07:36

Lucy,

Is he in the same hospital? I presume for asthma, he's not in urology or oncology department though?

You want to get the urology/oncology clinical nurse specialist to come over and speak with you two while he's in there - it's an excellent opportunity while he's in there and she can talk with you both together. Wander over to the oncology department and ask for them. They may be known as Macmillan nurses. They will have access to his records, and they're excellent at explaining what's happened, what the diagnosis is, etc. Write down all the test/scan results and the diagnosis.

If he's waiting on some action from urology or oncology, this might help get it moving again too.

User
Posted 05 Aug 2019 at 08:27
Thanks Andy. Yes he is in the same hospital. My sister asked the nurse on the ward if they could speak to someone in the team who dealt with his cancer to find out what was going on and was told no. I will try again today.

What should we normally expect in terms of blood tests and checks etc. Is it usual to go so long without any check ups.?

User
Posted 05 Aug 2019 at 09:19

Do yourself and your Dad a favour and order the ‘Tool Kit’ comprehensive prostate cancer information folder from PCUK here:

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

 

Best of luck.

 

Cheers, John.

Edited by member 05 Aug 2019 at 09:21  | Reason: Not specified

User
Posted 05 Aug 2019 at 09:33
He will be on the hormone injections (HT) or another version of these for the rest of his life. For men with advanced prostate cancer who are on HT, it would be common to have a PSA test every 3 or 6 months but this would often be managed by the nurse at his GP practice, and an oncologist would only be involved if the PSA results indicated that the hormones weren’t working.

Breathlessness is a known side effect of hormone therapy so people with asthma may be more affected. Radiotherapy is usually available only to men who have a chance of being cured or as a short zap to bone mets to reduce pain; it seems that neither of these is applicable to your dad.

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

User
Posted 05 Aug 2019 at 10:05

Originally Posted by: Online Community Member
Thanks Andy. Yes he is in the same hospital. My sister asked the nurse on the ward if they could speak to someone in the team who dealt with his cancer to find out what was going on and was told no. I will try again today.

Don't ask the local nurses, go through to oncology (or sometimes urology) and ask for the the clinical nurse specialist (CNS) for prostate cancer. You will find them very much more helpful, and I'm sure they'll come and visit you on any ward.

Edited by member 05 Aug 2019 at 10:06  | Reason: Not specified

User
Posted 05 Aug 2019 at 13:13
IBased on other recent posts on here, I bet they don't :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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