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Treatment -no choices?

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User

Posted 13 Feb 2023 at 09:48

Good morning guys,

I'm new to the forum. Age 73+, diagnosed with advanced PCa, Gleason 8, 2 mets in left pelvic lymph nodes plus one in a rib on the left side. I have seen two consultant urologists. Pre CT and bone scans, the first told me that I would be put on hormone therapy plus radiotherapy. After the scan results, a second urologist has put me on bicalutamide for two weeks, after which I will transfer to a LHRH agonist (which, not known) then finish of the bicalutamide to prevent tumor flare. But not a mention of radiotherapy now, although he did say he was referring me to oncology with a view to including me in the Stampede trial.

My questions to all of you who have been or are going through treatment are as follows: As I have read that radiotherapy is shown to benefit those with a low metastatic burden (which I'm assuming mine is as there is no widespread mets), why hasn't this been offered?

Secondly, I am apprehensive about the LHRH treatment as I have read in several sources that it can have adverse effects on the cardiovascular system. I am already on BP medication and several years back I had tachycardia attacks of unknown cause, although metoprolol has kept them luckily under control for many years. Should the urologist take this into account when making the decision for ADT with LHRH?

Your views on these things would be much appreciated.

User

Posted 13 Feb 2023 at 11:43

Just to be clear the radiotherapy was mentioned prior to the discovery of the bone mets? Once bone mets were discovered they made the decision for just HT and no RT, presumably the HT will be for the rest of your life.

That all sounds like the standard NHS treatment for advanced prostate cancer.

With bone mets in the pelvis and rib and also with cancer in the lymph nodes, the onco will be assuming there are micro-mets allover your body so systemic treatment is required.

There is some evidence that treating the primary tumour may reduce the growth of the bone mets. There is also a doctor in the USA who treats patients bone mets and has seen long remissions. I have not seen randomised control trials so the US doctor may be cherry picking his cases.

At the moment you are having the best standard of care that has been proven to work and be affordable to the NHS. If you go on a trial you may have some novel treatment and it may give you a better outcome; it may give you a worse outcome (you will never knowingly receive treatment worse than the current standard of care). Don't go on a trial expecting a miracle cure, do go on one to help the next generation of cancer patients.

As for your heart condition, yes LHRH may increase your risk of death from cardiovascular problems, but I would way without LHRH you would probably die of cancer within 5 years; with LHRH you will probably avoid dieing of cancer for five to fifteen years.

Dave

User

Posted 13 Feb 2023 at 12:15

In the UK, men with newly diagnosed advanced prostate cancer can now receive radiotherapy to the prostate providing the metastatic tumor burden is low, up to 4 small bone mets, but no visceral metastases. (Visceral metastases means in organs or nervous system. Lymph metastases are not visceral metastases.) The treatment is not curative, but extends the length of time the hormone therapy works. As with any treatment, it also depends on other medical conditions you have, and would only be done if you would benefit from the treatment.

The criteria are:

• Newly diagnosed hormone-sensitive prostate carcinoma with low burden metastatic disease; AND
• No previous radical treatment; AND
• Within three months of starting hormone therapy or within 6-12 weeks after completing docetaxel if given.

This treatment would be decided by the MDT or oncology, and not just urology.

Clinical Commissioning Policy:
External beam radiotherapy for patients presenting
with hormone sensitive, low volume metastatic prostate cancer at
the time of diagnosis [P200802P] (URN: 1901)

Edited by member 13 Feb 2023 at 12:18 | Reason: Not specified

User

Posted 13 Feb 2023 at 15:02

OK, thank you gentlemen for your very informative replies. I wasn't doubting for a moment that the recommended treatment wasn't the best option. Perhaps it was to do with the timing between the two consultations and what was known diagnostically at those times. I dare say I will be finding out more after three months of LHRH when they want to see me again.

User

Posted 13 Feb 2023 at 23:33

Hi Gawain,

Could you also look at the Atlanta trial and maybe be considered for that? Not sure what area you are in and if your hospital is involved, but I contacted the trial directly when I was interested and they sent me lots of information (my husband didn’t ever join the trial though).

Best of luck

Elaine

User

Posted 14 Feb 2023 at 07:40

Thank your for that suggestion, Elaine. I will certainly look into that. I'm in the Portsmouth area

User

Posted 27 Feb 2023 at 21:31

I was concerned about the potential side effects of the prostap injections. With that in mind I took another route - but you need to be brave! Bilateral orchidectomy - quick operation, sore for 3 or 4 days then fine - no more injections needed.

When you're doing your research, remember you don't have to follow the chemo, then radiotherapy route. Some of the newer drugs have been tested to show similar results - eg enzalutamide, apalutamide , darolutamide.

User

Posted 28 Feb 2023 at 17:09

I've had my first Prostap monthly dose last week and saw the MO today. She suggested that I start chemo. The alternative is enzalutamide. Then RT after. However, because of my age (early seventies),she was strongly favouring docetaxel now as she thought that having it now would hold off the disease for longer and I may not be robust enough to take the chemo later down the line if the enzalutamide ceased working. So I have a hard decision to make which isn't made any easier by the fact that I will be entering a Stampede trial and I have to decide by next week which way I will go.

User

Posted 28 Feb 2023 at 21:12

I've just completed cycle 5 out of 6x3 week cycles for docetaxel chemo. For about 10 days in each cycle I am very tired and it gets worse as you go. I've had no other side effects but by now I am a bit fed up with it and just want it over. I've travelled to France three times during treatment and now back at work(ish). I also make sure to treat myself to a nice restaurant in week three when my taste buds come back to normal. So if you do decide to go this path I wanted to let you know that although it is not a walk in the park it is manageable. It sounds like you are getting good advice and treatment options from your oncologist so good luck with whatever you decide.

Edited by member 28 Feb 2023 at 21:12 | Reason: Not specified

User

Posted 28 Feb 2023 at 21:25

Also, look up Irun (member here) or google his name - Kevin Webber. He continued to compete in ultramarathons during chemo, has raised hundreds of thousands of ££££, been awarded a BEM and written a book about living with incurable prostate cancer. Not everyone is an ultra-athlete of course but some men manage to continue working full time throughout chemo and my father-in-law sailed through - the biggest problem he had was not being allowed to go to the pub on days 5 - 8!

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

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