Curative radiotherapy with lymph spread

User

Posted 10 Dec 2018 at 18:42

Hello all. So my father had a Psa of 2000 at a routine blood test. Biopsy showed aggressive cancer and scan showed spread to lymph nodes. We received the pet scan results today and they say that unbelievably it is contained within pelvis and it will be curative rather than palliative radiotherapy. He has already started monthly degeralix Injections plus other hormones I think which he will be on fir 2 years . I can't quite believe it could be curative Any viewpoints on this or types of radiotherapy likely? Thanks!

User

Posted 10 Dec 2018 at 21:36

Hey Gemma. I sure will. Has your husband had scans and biopsies?

User

Posted 11 Dec 2018 at 09:19

Gemma, if you have medical questions you could phone the freephone number at the top of the page and speak to the PCUK nurses. They're incredibly helpful and can answer most questions!

All the very best,

Chris

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User

Posted 10 Dec 2018 at 19:52

Hi Elww,

I honestly can't answer your question, but it's great news that your dad has been told his treatment will b of curative intent. My dad has just completed 38 radiotherapy sessions and has tolerated it well. He is pretty tired and it has affected his bladder a little, he's up more in the night to pee, etc. Now we wait till the end of Jan for a follow up appointment with the consultant to check progress. It's likely your dad may not start radiotherapy for a few months, whilst the hormone therapy stops it in its tracks for a time and shrinks the tumour before they start zapping it (technical term!!). I wish you both all the best and I'm sure someone with far more knowledge than me will come along soon with an opinion. Take care.

User

Posted 10 Dec 2018 at 20:11

Great news - just goes to show that the PSA cannot always be relied upon to predict the seriousness of the situation - we have men here who had full skeleton bone mets and a PSA of less than 4 and then here is your dad with a PSA in the thousands and curative intent!

Not sure what you mean about types of radiotherapy - he is unlikely to be suitable for brachytherapy because of the lymph nodes so it will be external beam RT (EBRT). More specifically, it is probably IMRT (intensity modulated RT which means they use a computer programme to work out exactly how deep into the pelvis each zap needs to go to target the tumours while minimising the collateral damage) and if the hospital has very modern equipment he may well have IGRT (image guided RT) where they scan him at the same time as zapping him to improve the accuracy of the rays.

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

User

Posted 10 Dec 2018 at 20:34

What you post about RT with curative intent is encouraging. There are quite a number of lymph nodes that may need to be treated as well as tumour(s) within the Prostate and only so much radiation to focus on all although we don't know the extent of these.

No doubt there is a reason why this would not be done but I wonder if the Prostate was removed more of the RT could then be focused on the nodes and Prostate bed.

Hope all goes to plan.

Barry

User

Posted 10 Dec 2018 at 20:35

That's amazing. My husband is in the same situation.

We're waiting for hormone's to work and then radiotherapy after 3 months. Just had an appointment through for the 22nd January to meet oncologist.

I think like you it was such a relief after such a high PSA. Good luck with everything

Edited by member 10 Dec 2018 at 20:37 | Reason: Not specified

User

Posted 10 Dec 2018 at 20:57

Thanks for all your replies! Lisa very encouraging to hear that the radiotherapy wasn't horrendous. Lyn thanks for your informstion on radiotherapy. He's being treated at a big hospital in Poole that's supposed to have good facilities. Gemma - yes. With such a high Psa and gleason of 4+4 we were expecting much worse! The consultant said they might do a report on my dad as they were surprised! Old Barry - they have never offered prostate removal not sure why! My dad is 69? We have an appointment with oncologist this Wed. Thanks again!

User

Posted 10 Dec 2018 at 21:08

Wow Wednesday is so soon!!

Can you let us know what's discussed at that appointment?

My husband was diagnosed a month ago and only person we've seen is a clinical nurse specialist. Closest appointment with oncologist is 22nd January which seems like forever especially as I have questions about the treatment plan which we'll be 2 months into at that point.

Spoke to clinical nurse again today about concerns with treatment ( I'm wondering whether they should be treating more aggressively) but her only answer is I'll have to wait until oncologist appointment!!

User

Posted 10 Dec 2018 at 21:36

Hey Gemma. I sure will. Has your husband had scans and biopsies?

User

Posted 10 Dec 2018 at 22:02

Good news , Good luck

User

Posted 11 Dec 2018 at 07:54

Thank you

Yes he had all tests about a month a go, he's started hormone therapy. I just have so many questions and no one to ask until 22nd January

User

Posted 11 Dec 2018 at 09:19

Gemma, if you have medical questions you could phone the freephone number at the top of the page and speak to the PCUK nurses. They're incredibly helpful and can answer most questions!

All the very best,

Chris

User

Posted 12 Dec 2018 at 19:19

My dad saw the oncologist today. He will be given 37 radiotherapy sessions along with hormone treatment but the radiotherapy won't start for another 8 weeks to ensure he has had 3 months of hormones

We asked about prostate removal but cancer in pelvic lymph nodes so no point. His cancer is rare and aggressive. His PSA, was 2200 at routine psa test. No other symptoms.

They did ask about early chemo but they said no. Didn't get a great description as to why as I wasn't there and my parents didn't ask further questions.

The curative intent is there but it will be a big battle to achieve due to the aggressive nature of the cancer itself

Should we get 2nd opinions for treatment plan? Is there a centre of excellence we should try such as the Christie Centre? Want to make sure we have examined all. Options

Thanks!

Sent from my Huawei phone

User

Posted 12 Dec 2018 at 20:05

Hard to see what you would challenge when you don't seem to have all the information or you have some misinformation. You want him to have chemo but chemo isn't given to men who are on curative treatments, because chemo doesn't actually kill prostate cancer, it only makes the hormones work a bit better for men with advanced cancer and long term HT

So much else to clarify - what did they mean by 'rare'? If they actually told dad that he has a rare type of prostate cancer then it may be that he has a type that doesn't respond to chemo anyway, or that this is the reason he had such high PSA and only local node involvement. On the other hand, they could have been making a general broad statement of 'oh it is rare to have such high PSA without mets".

Personally, I would be reluctant to seek second opinions in your case - I would be worried that other hospitals would refuse to offer curative RT and he would miss his opportunity. .

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

User

Posted 12 Dec 2018 at 20:29

Hi Lyn .Thanks so much for your reply. What you say makes sense. It's such a help to have another perspective and I am glad that curative intent is still being mentioned - I do know that it's the cancer itself they described as rare and they said that my father's case had been extensively discussed amongst a number of professionals .

User

Posted 13 Dec 2018 at 16:14

I'm going to disagree with Lyn again on chemotherapy. She keeps peddling this myth that chemo doesn't kill Prostate Cancer cells. It does (or at least can) and I have seen the evidence on my own scans backed up by a radiologist's description of necrosis (cell death) in areas where I have had mets. It does not necessarily kill off large tumours. It may merely reduce their size or hold them at a given size for a period. I have also seen the evidence of that. It is certainly not a complete treatment nor a universally applicable one but it is one of a number of tools in the kitbag which can kill off prostate cancer cells. So there!

User

Posted 13 Dec 2018 at 17:25

Agree with you AC, I previously posted links about Chemo killing cancer cells on another thread some time ago.

I would also go for a second opinion on removing the Prostate first. If studies are being done to show the efficacy of removing the Prostate after radiotherapy, it would seem to make sense to me to remove the Prostate first (a much less difficult job) and then treat the Prostate bed and lymph nodes with radiation but how many clinicians think outside the box? Don't see why a hospital would go back on a treatment offer unless it resulted in undue delay. Of course double treatment does increase the risk of side effects but many men have their Prostatectomy followed by RT as it is accepting increased risk of side effects.

Barry

User

Posted 13 Dec 2018 at 18:11

Completely agree; just had a discussion with McMillan who agree it kills all cells not just cancerous ones but the healthy cells can repair themselves.

Trouble is they keep saying they can only treat what they can see and this isn't standard treatment.

I wonder what they'd do in the same situation?!

Any recommendations on getting a second opinion?

User

Posted 13 Dec 2018 at 18:43

This is such a tricky one My mum rang the nurses on this sites helpline and they were saying that upfront chemo could be good . Found this good article too

https://www.onclive.com/web-exclusives/role-of-chemotherapy-remains-strong-in-highrisk-localized-prostate-cancer

Not sure whether my dad should have one of those scans that would show micro mets 🙄

User

Posted 13 Dec 2018 at 20:07

You miss the point of what I was saying, I think AC. Chemo cannot cure prostate cancer; there is no doubt about that. It can kill individual cells and perhaps even clusters of cells and it can shrink a tumour but it cannot cure. People generally (out there in society) think “oh cancer ... cure it with chemo” without realising that there are only a very small number of cancers that chemo can cure, that for prostate cancer it certainly can’t cure but it can weaken the cells enough for other treatments to work.

I don’t get why people don’t get that, to be honest ... it seems pretty straightforward to me. You would never hear of a woman cured of breast cancer by chemo alone; she has surgery and / or radiotherapy with hormones and possibly some chemo to help mop up stray cells. I can’t think of any other cancer except lymphoma where chemo is the radical treatment rather than adjuvant.

No one at Stampede has started claiming, as far as I know, that chemo can kill prostate. All they have said is that giving it alongside RT/HT might make the RT/HT more effective. In AC’s case, there had been other treatment not just chemo, I think?

Regardless of the above - it isn’t available yet, it hasn’t been approved by NICE, it is one small scale study in a much larger research trial so unless you have an onco who can break rules or you can be referred to someone involved in the trials, it isn’t an option anyway.

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

User

Posted 13 Dec 2018 at 20:24

I agree, I'm talking along side HT and RT and not curative by itself

It doesn't seem unreasonable if it is of some benefit to want to go down that route. I appreciate it isn't standard YET but you obviously want the best for your loved ones.

If NICE haven't approved it would it be possible to do it privately?

Fighting for my husband

User

Posted 13 Dec 2018 at 22:49

Possibly but I don't really get why you would push him towards that just based on a small scale piece of research in 2015 that found there probably wasn't any benefit, and which Stampede chose not to continue or repeat? Chemo is not to be taken lightly as you will remember from his previous cancer; we have a member here who died recently as a result of an infection during chemo.

It might be better to stop second-guessing and wait to hear what the onco thinks in January. Early chemo can wait a few weeks without making any difference to outcome.

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Taken from the PCUK website:

Can I only ask for chemotherapy alongside hormone therapy if my prostate cancer has already spread to other parts of the body?

If your prostate cancer hasn’t yet spread to other parts of the body, but has spread to the area just outside the prostate, you can still ask, but the STAMPEDE trial results we’ve seen so far don’t show a clear survival benefit from taking docetaxel alongside hormone therapy in this situation.

The researchers found that, on average, men with advanced prostate cancer (prostate cancer that has spread to other sites in the body) survived an extra 15 months. And the researchers said that they hope doctors will offer chemotherapy to all men newly diagnosed with advanced prostate cancer.

They also think that men with locally advanced prostate cancer (prostate cancer that has just started to spread out of the prostate) might want to consider having chemotherapy earlier on alongside hormone therapy, because it can give them longer before their cancer starts to grow again.

But the evidence doesn’t show a clear survival benefit from giving docetaxel chemotherapy at this stage, so your oncologist may not agree to prescribe you docetaxel alongside hormone therapy if your prostate cancer hasn’t yet spread.

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Edited by member 13 Dec 2018 at 22:50 | Reason: Not specified

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

User

Posted 14 Dec 2018 at 00:08

I Quote from the Patient Information Book supplied to me by the Royal Marsden, arguably the leading UK cancer Hospital, entitled 'Cancer of the Prostate Your questions answered.'

"Chemotherapy means treatment with anti-cancer drugs and they are given to destroy or control cancer cells. This is a systemic (whole body treatment) and will kill cancer cells any where in the body.

Chemotherapy is used in the treatment of late prostate cancer and when prostate cancer is no longer controlled by hormone treatments." Since this book was written, we know that Chemotherapy is being used earlier but this does not change the assertion made.. I could in need again find links that reinforce the foregoing.

Whether Chemotherapy can be the coup de grâce treatment to PCa remains a moot point and may be patient specific. Cancer cells can be relatively resistant to both HT and RT so don't always provide a cure either.

Barry

User

Posted 15 Dec 2018 at 17:40

I really appreciate everyone's viewpoints which are so helpful as we navigate the treatment options. Thank you! !

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