Cycling UK Forum

PROSTATE CANCER

I am 85 years old and have just been I have prostate cancer. The cancer is in one prostate only and I have no cancer in the other one and none in my bones. However the cancer in the one prostate is more of the high risk variety which apparently only occurs in about a third of cases. Initially I was promised radiotherapy together with Bicalutamide, Contiflo and Zoladex medication. However, when I saw the Cancer doctor this week I was told that I was to have no radiotherapy and that I should continue with the current medication. With luck, I would live for 5 to 7 years I was told.

There are two points I have difficulty in dealing with. The way I was told and the reason for the change. In the first case I was forced to attend the hospital on my own. All three members of my family have Covid. Luckily, I live on my own. However, I was quite unprepared for the news I got at the hospital, especially as the nurse had phone me up a few days before with the good news that the the MRI scan had shown no cancer in my bones and had given no warning of the change of direction.


I cycle three or four times a week, usually about 25 miles a trip and I resent being treated as an average 85 year old. This was the attitude of the doctor. He did not like to be told this.

I very much appreciate any comments from those of you who have similar experience. I do want to take on a hard pressed NHS as I need their support but I do feel cheated and wish to have my views fully taken into account. Am I being unreasonable? Perhaps the medication side effects are affecting my attitude.

I have no experience of prostate cancer, but I was offered a heart operation in 2013, then when I accepted they withdrew it. I've asked why, in writing, by recorded delivery, but they just ignored the question.

The prostate
You only have one prostate gland, not two. To help understand what you're being told I recommend:
https://en.wikipedia.org/wiki/Prostate
https://www.nhs.uk/conditions/prostate-problems/
https://www.nhs.uk/conditions/prostate-cancer/

Your treatment, and the reason for the change
I suggest writing to the oncologist as soon as possible to ask why that treatment has been recommended. And if you wish why radiotherapy has not been recommended. I'd do that by email, and I'd get someone else to check it before I sent it.

I can recommend some sources about those drugs if you would like.

You could also talk to your GP about the choice of treatment but this is a specialist area and that wouldn't be my first choice.

Your care and the communications
If this is in England I recommend contacting the hospital's PALS service. You could also register it as a complaint which would guarantee that someone senior sees it and that you get a response within a specified time. If you tell us the hospital I can look up the contacts for each of those.

Again you could talk to your GP about this, but they'll probably recommend the same routes.

Jonathan

Use every avenue you can to get the treatment you need, there has been some good advice here and no doubt a lot more will be forthcoming.

I no longer trust many in the NHS. Three years ago my wife was in intensive care following a botched operation to remove a tumor. Whilst in a coma an very arrogant doctor put a DNR order on her. telling me that she was old, she wasn't strong enough for chemotherapy and she couldn't be operated on again. I argued for her getting proper treatment regardless and eventual someone eventually listened.

This week so far at the age of 75 she has cycled 124 miles and spent two days walking.

Hope all goes well for you.

I have no experience of OP diagnosis, situation, etc. and I'm having massive issues with access to NHS consultants (been on a 2 week "emergency" referral since back in Dec last year and just keep getting "We'll contact you when we have appointments available ...").

But a recent barium swallow identified something not desperately serious and all I got was a letter "Your recent tests identified a <xxx>". How serious an <xxx> is depends on a load of things e.g. how big. So I called the hospital dept and said I had questions so could I have another talk with the consultant (in my case I said a telephone conversation would suffice) and they were very helpful and arranged for the consultant to call me 7 days later. So maybe OP think more about the questions (maybe "why is radiotherapy no longer being offered?" and/or "would radiotherapy affect my prognosis?" - write down all questions in advance) and ask for another consultation.

If you have further questions and are getting nowhere talking to appropriate hospital staff to get the answers, maybe talk to the hospital PALS who can sometimes help sort stuff in a non-formal complaint way.

(Above just some thoughts based on very limited persona experience).

Ian

Something I thought of while out on my ride that could be of help to the OP. The best source of help and advice I got when my wife was at the worst, was from three Macmillan nurses who were attached to the oncology unit at Worcester Hospital, Maybe there are similar in your area that you can approach for help and advice..

Psamathe wrote: ↑19 Mar 2022, 11:52amSo I called the hospital dept and said I had questions so could I have another talk with the consultant (in my case I said a telephone conversation would suffice) and they were very helpful and arranged for the consultant to call me 7 days later. So maybe OP think more about the questions (maybe "why is radiotherapy no longer being offered?" and/or "would radiotherapy affect my prognosis?" - write down all questions in advance) and ask for another consultation.

bikepacker wrote: ↑19 Mar 2022, 2:01pm Something I thought of while out on my ride that could be of help to the OP. The best source of help and advice I got when my wife was at the worst, was from three Macmillan nurses who were attached to the oncology unit at Worcester Hospital, Maybe there are similar in your area that you can approach for help and advice..

Good advice x2.

Jonathan

Psamathe wrote: ↑19 Mar 2022, 11:52amIf you have further questions and are getting nowhere talking to appropriate hospital staff to get the answers, maybe talk to the hospital PALS who can sometimes help sort stuff in a non-formal complaint way.

Yes. From the original post I think that you should contact them without delay. And they can help with complaints if you're considering that route.

PALS can give you information about:
• the NHS
• the NHS complaints procedure, including how to get independent help if you want to make a complaint
• support groups outside the NHS
https://www.nhs.uk/nhs-services/hospita ... n-service/

Jonathan

As an example of how PALS can help (my own case, personal experience), I'd had an NHS MRI scan as requested by consultant and hospital had had it done by a private 3rd party scanning company (though based in a Portacabin thing on hospital grounds). A consultant read the report and it omitted some important information so he wrote to them to get the needed information, got no reply and so wrote to my GP asking they case up this information from the scanning company. GP got nowhere so eventually consultant asked me to chase up this relevant important info! So I contacted PALS on the telephone who then chased up radiology ("Oh, we've had a letter from Prof ... from months ago" (and never responded!)) and PALS got the MRI scan report amended with the details and I put in a Subject Access Request for the updated report and provided it to the consultant.

All my dealings with PALS were over the phone, no confirmations in writing. To get the report I had to do a standard Subject Access Request to Medical Records (which does require proof of ID, signatures, paperwork) but the PALS side was very easy. Sometimes they can be difficult to get hold of (I guess they are very busy with the NHS backlog and 18 weeks being broken much of the time).

Ian

Off topic discussion has been moved to viewtopic.php?t=150266

There is only one prostate do you mean testicles?

crossy wrote: ↑20 Mar 2022, 7:36am There is only one prostate do you mean testicles?

Probably not: the treatment regime includes bicalutamide.

Jonathan

I have had radiation treatment for prostate cancer and the oncology treatment was excellent. What delayed my treatment was the uncertainty from the urology department and I had 9 months of zoladex implants - should have been 6!
You haven't given much detail about your diagnosis and it sounds as though you need to enquire more detail. What is your result on the Gleason scale? It will be a total of 2 figures. You should have been given details of this and an explanatory booklet about prostate cancer and treatment. If you haven't received this you need contact your oncologist. Have you been given details of a Macmillan nurse you can contact? If not ask for details. I know it's a bit of a worry and maybe you didn't quite take in what you might have been told when you saw the consultant.
You also need to be clear why you are not being given radiation treatment.

Many men take contiflo/tamsulosin and I don't think that generally any side effects are problematic, but zoladex has side effects, as it reduces testosterone production which "fuels" the cancer, but it is also needed for other functions.

crossy wrote: ↑20 Mar 2022, 7:36am There is only one prostate do you mean testicles?

I wonder if he is confused about the 2 figures that make up the Gleason scale?

Many thanks for those thoughtful responses. My Gleason reading is 4+ 5 = 9. Yes, I have an allocated Macmillan Oncology Nurse. My wife and daughter are on the case. The thing I find hard to accept was to be told that radiotherapy was out when I was at the hospital on my own when I had had no previous indication of the change of plans. I would have taken a Covid free friend with me instead of my wife if I had some pre-warning.