Oligo APC mets

User

Posted 26 Jul 2019 at 16:32

My husband has APC, DX last Aug. PSA 320, G9 3 mets, one to spine, 2 to Pelvic floor, Hes had Chemo, On Lupron, and just had 6, one weekly sessions of RT to the Prostrate (palliative care) Ive been reading that spot radiation is only offered by the NHS if there is pain to the bone in question.

Has anyone had private Spot Radiation done, to eliminate a met ? Where did you have it done, and how much did it cost you. He has no pain, but surely if you can eradicate mets completely then this must be a bonus to OS ?

We live in Yorkshire.

User

Posted 08 Dec 2019 at 21:31

It seems that Oligo Mets are not so often treated aggressively in the UK, particularly if there are more than 3 mets. Even if all the Mets seen in scans can be wiped out by RT or surgery, even supplemented by HT Chemo or whatever, there is no guarantee that other mets won't form or how long before this may take. All one can say is that such treatment can set the advance of cancer back for an indeterminate time and for some very lucky men for a very long time if not permanently.

Consultants in the UK should have a good idea of who to contact in the UK to get more agressive treatment in the UK or abroad and it is up to the affected man to decide whether to decide whether he wishes to explore this possibility through the NHS or privately.

Barry

User

Posted 09 Dec 2019 at 15:56

My husband never thinks about his cancer, or so he says.

It is what it is,!

Its me that is constantly online looking at treatments etc.. To be fair to my Hubbie, will take anything , Supplements, Green T etc..

and WILL be up for future treatments ie LU-177 chemo, but hopefully that will be a long time off,

He does tire easier than before, lost his sense of taste during chemo, but continued to eat whatever I gave him, now back to normal. Although he has put a couple of pounds on due to the ADT.

So so far so good. Stay active, eat well. positive thinking.

Take care

User

Posted 09 Dec 2019 at 20:09

We are going to research targeted mets in the new year too. Birmingham hospital seem to have information about targeted mets on their website, so that could be a place to start. I’d be interested to hear of anything you find.

Best wishes to you Chris.

User

Posted 10 Dec 2019 at 11:05

Hi Starskycat

Im the same as you, I want to research everything and ask things. My husband says we can't control it, it is what it is also.

I know far more knowledgeable people than me have commented about it being pointless to do RT with lymph node involvement but my husband (diagnosed July this year, T3a, Gleason 8, PSA 289 with lymph nodes in pelvic side wall, abdomen and aorta) has been told he will be considered for pelvic radiotherapy. We saw the oncologist last week after his final chemo and I asked about the criteria for RT as I thought pointless if in lymph nodes. They just said wait to see what scan shows. I suppose my point is in some cases they do want to do RT with lymph involvement. Sorry to confuse things more.

Mrs MAS

Edited by member 10 Dec 2019 at 11:10 | Reason: Not specified

Mrs MAS

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User

Posted 26 Jul 2019 at 23:31

Hi Kim,

I haven't had SBRT for Oligo Mets - I think very few have but worth consideration. Your husband would need to be a suitable candidate for SBRT with it avoiding the paths used to deliver previous radiation. There are a limited number of places in the UK where this is administered but if memory serves me correctly, I believe one of our members, Roy, had this in Birmingham, possibly at the Birmingham Prostate Clinic or at the Queen Elizabeth Hospital Birmingham. I think another possibility is The Royal Marsden who I believe do this and would probably know where there was another center nearer to you.

This is a video lecture on the subject by the highly regarded Dr Eugene Kwon of Mayo in the USA. Reference in it is made to the Choline Pet Scan, although a better scan now is the PSMA one.

https://www.youtube.com/watch?v=NkqizmvqJPo

Edited by member 26 Jul 2019 at 23:33 | Reason: To highlight link

Barry

User

Posted 27 Jul 2019 at 00:19

Thankyou Barry, will watch the video tomorrow, this may be the same video I have seen, where I got the idea from ?

Just trying to be pro-active in my husbands treatment.

Will look at anything that will improve his chances

Thanks again

Kim

User

Posted 27 Jul 2019 at 01:08

The reason it is rarely offered is because where there is one visible bone met, there are often also other unseen mets. Having said that, our onco has stated that if J has a bone scan that identifies isolated bone mets not in or near the pelvis, he will give short RT.

I don't think private or NHS will make much difference; it needs an onco having good cause to believe the met is an isolated one.

In your first post, you said he had 2 spinal mets, one pelvic floor and one lymph node, which is slightly different to what you have posted above. Worth checking which is correct as 4 distinct mets would pretty much rule out spot RT I think.

Edited by member 27 Jul 2019 at 01:13 | Reason: Not specified

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

User

Posted 27 Jul 2019 at 10:44

Hi Lyn

Thankyou for your reply, yes must have been tired last night when I posted, sorry. Yes got that the wrong way round. 2 Spine mets and 1 Pelvic floor, didn't know that the Lymph node could be zapped also.

Why cant the pelvis have RT ?

When I see our OC, I do ask questions, but hes not very forthcoming, and I always feel rushed. I would rather ask knowledgeable people like yourself, so I am prepared ,

Also how often do you get any scans after all treatment (chemo, RT) finishes, can we request one in say 6months, or do we have to wait till the PSA level goes up ?

Thankyou for taking the time to respond, and appreciate you answering my questions

Kim

User

Posted 27 Jul 2019 at 10:49

They wouldn’t usually do more scans unless there was some some unusual activity that they couldn’t explain.

The pelvis can’t have more RT if it has already had the maximum dose. That may not apply in your case, it depends how many Gys he got in the weekly sessions.

You can ask but I don’t think they would usually offer spot RT to a lymph met because it is likely to be in other nodes as well.

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

User

Posted 27 Jul 2019 at 13:27

Thanks lyn, for your prompt reply.

I know a little more today than I did yesterday!

Kim

User

Posted 08 Dec 2019 at 16:32

Hi Starskycat,

I wondered how your research went for treating the oligometatasis? I am doing some myself and see that Birmingham hospital seems to be leading the way in this, in the UK at least, is that your findings too?

User

Posted 08 Dec 2019 at 19:08

Hi, My husband had the one a week for 6 weeks, EBRT at Leeds, he had a PSA after and his PSA had come down from 2.4 to 1.9, so it must have helped.

To be honest have not perused private treatment while PSA is still low and stable, he has another PSA test on Fri 13th, with results on Mon 16th, so see what happens then.

If you find out any interesting news< I would be glad to hear from you.

I did ask about spot radiation at Leeds hospital, and was told, we cant just be zapping people all over?

We could have it if my Husbands mets give him pain, so at the moment we are just on with the Lupron shots every 3 months.

We have bee in this fight just over a year now, how about yourself ?

Kim

User

Posted 08 Dec 2019 at 19:19

The current reasoning is that if you have had a long history of oligomets, then if mets only appear in 3 places then they may consider spot therapy instead of systemic HT and Chemo. However any more than that , and if you have lymph involvement , then they won’t do it. After 4 1/2 yrs of non detectable mets, I eventually have developed 2 large lymph’s and two separate spine mets. Only thing on offer is HT. I never had RT so I should have loads available for pain relief later

User

Posted 08 Dec 2019 at 19:54

My hubbie G9 PSA 320 went straight on to Chemo and Lupron, Then 6 EBRT, he has 2 spine mets, 1 pelvic met and one lymph node.

Hes on Lupron for life, Why wont they do spot therapy if you have Lymph node involvement ?

Thanks for your post

User

Posted 08 Dec 2019 at 20:08

I’m absolutely no expert as I’ve just entered this new stage myself , but I think 3 sites is the max allowed. Lymph nodes aren’t favourable as essentially if you have lymph involvement then they are going to keep cropping up everywhere however much you treat them. I’m having repeat scans but was told targeted therapy was off the cards and that I’d be on HT for whatever remains of my life.

User

Posted 08 Dec 2019 at 20:49

Thanks for that.

Wishing you good luck with your future treatment.

User

Posted 08 Dec 2019 at 21:31

Barry

User

Posted 09 Dec 2019 at 07:41

Thanks for the info. My dad has started out with ‘slight’ mets but no mention of radiation to them, only hormones and chemo. It seems that in the US some places pay more attention to radiating them, and I just think if it works with some people then why not try? Do you think we’d have to go private for this as he doesn’t have any pain?
This is all very new to us, only got the Dx about 10 days ago so my head is in a complete spin and the unknown is so hard to deal with. Good to know that your hubbie’s PSA is remaining low.

thanks for your replies.

User

Posted 09 Dec 2019 at 10:07

We were offered the 6 sessions of External Beam Rad Therapy after the chemo, as S.O.C , as suggested in the results of the STAMPEDE trial, I believe.

Yes in the US they seem to be more aggressive with their treatment plan, and I would imagine that we would have to pay also in the UK, as unless there is pain, it doesn't seem to be offered.

My Husband has had NO pain (thank goodness) but yes I would have liked his mets to have been zapped also.

After ypor dad has had chemo you have to wait a few weeks before you can have any Radiotherapy, so I would see how he goes on with that and how he responds to it. What is his Gleason score and present PSA ? (if you don't mind answering)

User

Posted 09 Dec 2019 at 11:09

Thanks for this. I will ask about the EBRT nearer the time. Can I ask is the radiation to the met bone spots or to the prostate? After watching the oligometastasis Youtube video that somebody posted in this thread, it seems that it can have quite a bit of success so it seems really strange to me that it's not readily offered. My dad doesn't have any pain either, which is one blessing in all of this. The symptoms are the mental/emotional impact.

His Gleason score is 8 and his PSA 43.

User

Posted 09 Dec 2019 at 11:47

Just to add, I don't have a subscription for the article but the start of it has some promise for oligo mets. Again in the US...

https://prostatecancernewstoday.com/2019/10/28/targeted-radiation-effectively-controls-prostate-cancer-with-limited-metastases-trial-results-suggest/

User

Posted 09 Dec 2019 at 14:23

The EBRT is to the prostrate only. If it hadnot escaped the prostrate it would be 30 sessions every day for 6 wks (mon-fri) but as my Husbands is also in his bones they only offer 6 sessions (1 per wk) don't really know why, did ask, but was told that is what is offered ?

I don't know why either they don't radiate the Mets, just told, only when you start to get pain . So I suppose would have to go private as I said before.if we needed this doing.

My Hubbie is G 9 320PSA now 1.9 after nearly 14months, another PSA test on Fri, so praying it goes lower or stays the same.

Yes the emotional stress is always there, for me in particular, we seem to live from 3month to 3month(PSA test)

Told it cannot be cured but will try EVERYTHING to keep this beast at bay.

Sending good luck for your fathers treatment.

Kim

ps. If he doesn't want to lose his hair during chemo tell him to ask for a cool cap, it is VERY cold, my husband could stand it, so only lost body hair, eyebrows, tash. its worth a go.

User

Posted 09 Dec 2019 at 15:06

Ah ok thanks for the info. Your hubby's drop in PSA is great and wishing you all the best for Friday's result too - hope it continues on a downward trend. How is your husband coping with everything?

I'm going to do some more research on radiation to the mets, if necessary we will have to go private or abroad. As you say, we'll do anything to keep it at bay.

Thanks for the info on the cap too, I think he's going to give it a go - helps with a little less disruption to normality I suppose.

User

Posted 09 Dec 2019 at 15:56

My husband never thinks about his cancer, or so he says.

It is what it is,!

Its me that is constantly online looking at treatments etc.. To be fair to my Hubbie, will take anything , Supplements, Green T etc..

and WILL be up for future treatments ie LU-177 chemo, but hopefully that will be a long time off,

He does tire easier than before, lost his sense of taste during chemo, but continued to eat whatever I gave him, now back to normal. Although he has put a couple of pounds on due to the ADT.

So so far so good. Stay active, eat well. positive thinking.

Take care

User

Posted 09 Dec 2019 at 16:02

I too am going to look further into targeted treatment as I only have 4 possible mets at present at the age of 52. It does seem we are only offered systemic treatments with all the unwanted side-effects , when some targeted RT could buy a few years HT and Chemo free. I’m still terrified of making that next step.

User

Posted 09 Dec 2019 at 20:06

My dad’s the same, it’s only me doing the research, he’s carrying out as normal but exercising more to build up his strength for chemo.

Thanks for all the info, sending lots of positive wishes.

User

Posted 09 Dec 2019 at 20:09

Best wishes to you Chris.

User

Posted 10 Dec 2019 at 11:05

Hi Starskycat

Im the same as you, I want to research everything and ask things. My husband says we can't control it, it is what it is also.

Mrs MAS

Edited by member 10 Dec 2019 at 11:10 | Reason: Not specified

Mrs MAS

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