NHS: Hi, Can anyone advise of the UK... - Advanced Prostate...

Advanced Prostate Cancer
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NHS

Fdccs
Fdccs

Hi,

Can anyone advise of the UK system; I have concerns over my husband's treatment plan and think they should be treating more aggressively. The only person we've seen so far is a clinical nurse specialist.

My husband is currently on HT and despite my treatment concerns I've been advised I have to wait until the 22nd January to speak to the oncologist.

Not sure where to go from here? We'll be 2.5 month's into HT at that point. Their plan is radiotherapy but I would like to speak to someone about additional treatments

9 Replies
oldestnewest

No one was in a hurry to treat my buddy. They said the hormone treatment was to shrink the tumour so radiation was more successful. So far he's doing well post 8 months radiation. Don't panic. Ask lots of questions when you finally do get to speak with his Oncologist.

I had to wait about a six weeks between seeing an NHS urologist and an NHS oncologist, with a CT scan in between. Those weeks were hellish for me, largely due to anxiety. But when I finally did get to meet the oncologist, I learned that they had spent that time reviewing my case, with discussions between a whole team of concerned carers.

It came as such a relief to discover that the time had not been a vacuum at all. I have nothing but praise for the treatment I have received since.

I mentioned my anxiety to the oncologist, who reassured me that they are aware than anxiety is part of the problem for cancer patients. So, I was prescribed Larozepam to help me cope. I take half a tablet at night to help me sleep.

As noted in another post, sometimes the prostate needs to be shrunk before radiation can be given. This is done using ADT (Zoladex, Androcur, something of that ilk). Perhaps this is what is happening in your husband's case. A simple phone call to the oncology unit treating him might lead to some reassurance.

Fdccs
Fdccs
in reply to Brent_Wilson

Thanks.

I know they had a MDT meeting to discuss his case and come up with an action plan, Im just anxious that given his high PSA and gleason they're only treating what they can see.

I have called Urology to voice my concerns but they keep telling me I have to wait to speak to oncologists in over a month's time.

Yes my husband is on the hormone injection so something is happening in terms of shrinking it to make radiotherapy more effective, I just want to be involved in the treatment plan.

Nothing to do but wait I suppose

Hi, I'm in UK (York), diagnosed in November 2014 with locally advanced PCa. I assume HT is Hormone Therapy and same as ADT. I was started on ADT immediately but radiotherapy didn't start until March 2015. I was also told this gap between starting ADT and receiving radiotherapy was to give the ADT time to shrink the cancer by inhibiting production of testosterone. Have you looked at tackleprostate.org? They produce an excellent information booklet covering diagnosis/treatment options/side effects. I was encouraged to speak to the Urology Nurse Specialists if I had any concerns - mine were really helpful.

All the best.

Pete

Fdccs
Fdccs
in reply to pete0550

Thanks Pete. It sounds like we're starting down the same road as you.

Did you just have ADT and radiotherapy?

How are you getting on?

pete0550
pete0550
in reply to Fdccs

Hi,

Yes, sounds similar - is your husband also locally advanced PCa?

I was seen by the Oncologist at a very early stage. My first meeting with him was when he broke the news to me. By that time, he and his team had worked out my treatment plan and the first step in hormone therapy happened on the day I learnt of my diagnosis. I had ADT for 15 months (Zoladex injection 3 monthly) with 37 radiotherapy sessions between March and May 2015. I came off ADT earlier than initially planned because of difficulties with side effects but the decision was taken with my Oncologist's agreement. Since then my PSA has risen, latest being 0.9. Whilst this is worrying, my Oncologist reassures me that it is perfectly normal and is to be expected as the effects of the ADT wear off and my PSA should plateau. I've been discharged by the Oncologist and now on 6 monthly follow up with the Urology Cancer Nurse when my PSA is checked and I'm in a watch and wait situation. If PSA doesn't plateau, then I'll be having a PET scan which I understand is much more sensitive than a CAT scan for detecting any cancerous activity.

In general terms, I'm getting on very well thanks. I make sure I get out on the bike daily for a bit of cycling, play golf every few weeks, walk as often as possible. I had a few days walking the South West Coast Path around St Ives in October which was pretty strenuous but very enjoyable, weather was amazingly good. Learning that I had cancer certainly made me focus on getting the most out of life, I've enjoyed a few long haul trips since and, hopefully, will be heading for New York on Saturday with my partner and our daughters for a week before Christmas.

I try to keep the anxiety locked away, occasionally it sneaks out but, on the whole, life is good!

There are some very knowledgeable members in this forum if you have more queries but not many are in the UK and obviously the system in the States is much different to our NHS. Your husband's treatment pattern seems similar to mine in terms of the delay between starting hormone therapy and undergoing radiotherapy. The tackle prostate cancer group has a helpline (0800 035 5302). I've never tried it but they may be able to help reassure you.

All the best to you both

Pete

Thank you again. Great to hear you're doing well.

I hope to feel a little better once we have seen the oncologist. His is locally advanced in the lymph nodes yes. All I know is they plan to do radiotherapy

You may wish to consider a complementary medicine strategy to augment your care regimen. It means of course some personal expense but nothing like purchasing cancer drugs.

Review these links and message me if you have any questions.

healthunlocked.com/advanced...

healthunlocked.com/advanced...

Enjoy your holiday season.

CalBear74

Sorry me again!

I was just reading on Prostate Cancer UK website that chemo should be considered for high risk locally advanced. This is based on the Stampede trial and as we know it more effective when given early.

I really don't know what to do as by the time we meet the oncologist my husband would of been on HT for three months which isn't early

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