Treatment Centres (UK or Worldwide)

[Hillwalker87]

Hello, I am here on behalf of my Father who has recently been diagnosed with PC with mets to lymph nodes, spine and lower rib. He has currently been placed on 3 monthly injections of zoladex. I was wondering if anyone on here has ever been anywhere and achieved success with something similar? We're from the UK and I know a gentleman who had a different type of cancer who achieved remission in Turkey but this came at great expense. I was wondering if anybody knew of anywhere preferably in the UK but would be happy to receive suggestions on anywhere worldwide just to weigh up our options really. Many thanks in advance.

[GP24]

He could take part in the STAMPEDE trial in the UK. In this case he would get Chemo added to the injections, which should be done anyway now.

stampedetrial.org/centres/i...

To be able to join, his first injection should not be more than four weeks ago.

[Hillwalker87 in reply to GP24]

Thanks for the info! Unfortunately he's nearly three months since his last injection

[GP24 in reply to Hillwalker87]

I would contact them anyway. Maybe they are just starting a new arm which is not mentioned on the internet yet.

[Hillwalker87 in reply to GP24]

Ok will do, nothing lost! Thanks again

[RyderLake2]

Hello,

You need to know that everybody is different. I was diagnosed in May, 2013 with advanced prostate cancer and extensive bone metastasis. My oncologist put me on Zoladex (goserelin). With the exception of six months, when I was on Firmagon (degarelix), I have been on Zoladex ever since. For the last three years I have been on Zoladex and Xtandi (enzalutamide) a Tier 2 drug. Fortunately, no serious side effects from either. Hope that helps

[Hillwalker87 in reply to RyderLake2]

That's some really interesting info on the zoladex, thanks for that!

[Hillwalker87 in reply to RyderLake2]

Sorry I meant to ask, why was the Xtandi added later? Is this usually a result of rising PSA? I was just wondering if it's worth my Dad asking his oncologist about the same?

[RyderLake2 in reply to Hillwalker87]

Hello,

I neglected to mention I live in British Columbia, Canada so that, like your dad, the Cancer Agency (National Health?) pays for most of my medications. That is good and bad. The good is I don't pay the high medical costs that so many of our American neighbours are saddled with. The bad is that you must follow provincially set protocols. So far that has not been a problem.

As to your question, when your PSA starts crawling up (in our province that means a rise to over 2.0) then you switch from a radiation oncologist to a medical oncologist. The agency declares that you are castrate resistant (unfortunate term) and you are given the choice between two Second Tier drugs Zytiga (abiraterone) and Xtandi (enzalutamide). They are like Pepsi and Coke. Both have their advocates. For various reasons I chose Xtandi.

That does not mean you get off Zoladex. The way it was explained to me at the cancer agency is that advanced PCa is heterogeneous not homogenous. Zoladex still works on some cancer cells. If you stop Zoladex altogether, you are back to square one. As my medical oncologist explained it to me: "You start your treatment on the Zoladex train and you will ride this train for the rest of your life. When your train starts to slow down, you add (or maybe subtract) various Tier Two (and later Tier Three) drugs but you never get off the train!" Everyone has a different experience on androgen deprivation drugs like Zoladex. In some countries you can take Xtandi much earlier in your treatment but that is not not normally the procedure here. Hope that helps.

[Hillwalker87 in reply to RyderLake2]

That's very informative, thanks for taking the time to explain to me

[fluffyfur]

The cancer center in my city is consistently ranked the top in the US and many come here for treatment from other countries. I don't know how it works though as far as payment is concerned. I would think it would be crazy expensive. They have an international department you can call and speak to just to get details of how it works.

mdanderson.org/patients-fam...

Can you go to a private oncologist in the UK not affiliated with the NHS? That would be my first move.

[Hillwalker87 in reply to fluffyfur]

Thanks for that! Much appreciated! Yes I think he's just a bit bamboozled with who to go with at the moment.

[fluffyfur in reply to Hillwalker87]

We got several opinions here in the US and it is common to do so. It certainly can't hurt.

[Blucher]

goodnewsnetwork.org/new-t-c...

I came across this late last year, this may be of interest.

[Hillwalker87 in reply to Blucher]

Thank you very much!

[ctarleton]

If you live in the UK, there are Prostate Cancer Local Support Groups that normally meet in locations all across the country. Although they are probably now not meeting due to COVID-19 restrictions, you still might be able to work the problem from the other way around, and directly call the leaders/facilitators of such groups near you, and ask them about their members' experiences with getting to the best available prostate cancer care, relatively near to your location. The searchable list of UK local support groups is here. A click on each result will bring up the Contact info.

prostatecanceruk.org/get-su...

[Hillwalker87 in reply to ctarleton]

That's great that thank you. Definitely worth a look

[Tall_Allen]

Here are his current options:

prostatecancer.news/2017/06...

[Hillwalker87 in reply to Tall_Allen]

Thank you, will have a look!

[Bodysculpture]

Dr Robert Hughes Lister Hospital Stevenage

Specialises in Advanced Prostrare cancer

Loads of knowledge

While on my 3 monthly hormone suppressant injections I was also placed of chemotherapy docataxal to be precise

I was told the 2 together gets the best results

Just had comparison scans done results on the 26th

But I feel much better already

Heaven knows what he is gonna say

PSA when diagnosed 13.5 now

1.67

[Hillwalker87 in reply to Bodysculpture]

Best of luck with that mate, hope all goes well with that. I'll have a look into that, thanks for the info

[Curehunter]

I'm also from the UK and was DX in Feb 2020 with PCa. I'm on ADT(Prosap rather than Zoladex) + Zytiga. The options available are in Tall_Allen's response above. My PSA has come down from 216 to 0.41.

[Hillwalker87]

Thanks for your response! So why do you think my fathers oncologist hasn't put him on a combination therapy in the first place?

[fluffyfur in reply to Hillwalker87]

Who knows. That's why I said to seek a second opinion. Over the years I have learned just because someone graduated from medical school doesn't mean it was at the top of their class. We have to take responsibility for our own health decisions and push for answers when we aren't getting them.

[Hillwalker87 in reply to fluffyfur]

Oh right, so did you push for the combination then?

[fluffyfur in reply to Hillwalker87]

I have pushed for all sorts of things, yes. Or asked for the reasoning behind their decision.

[Curehunter in reply to Hillwalker87]

You need to provide more details on your Dad's dx, eg. Date, PSA, Gleeson, high/low burden etc. Also they usually start with ADT then go for combination within first 12 weeks.

[Hillwalker87]

Seems like a smart thing to do. I'll look into that then and mention this to my Dad. Thanks for the advice, much appreciated. Best of luck to you

[j-o-h-n]

In the US, Memorial Sloan Kettering cancer center on 67/68 Street in New York City. One of the best in the world..I've seen customers (I don't call them patients anymore) from all of the world there. Check it out via google.

mskcc.org/?gclid=CjwKCAjwxL...

Btw How old is your Dad?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/19/2020 2:05 PM DST

[Hillwalker87 in reply to j-o-h-n]

Oh really, any stage IV gone in remission there do you know? He is 68 but in really good health otherwise

[j-o-h-n in reply to Hillwalker87]

Personally I don't know of any.... (im a recluse)....But the hospital is top notch and I would guess many many have. Ask here for results....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/19/2020 2:21 PM DST

[Hillwalker87 in reply to j-o-h-n]

Thanks mate, will look into this!

[Ausi]

I’m also on Zoladex and have been for about 8 years after joining the club about 2 years before, diagnosed in 2009 with PSA 5.9 and Gleeson 4+3 and then having a prostatectomy. About 4 yrs ago I started Xtandi (Enzalutamide) which lasted for about 18mths. I’ve been zapped a few times since then to treat mets, my last being in Dec and this got my PSA back down to 1.8 from 16. I’m pretty happy with that result.

I really haven’t any problems with Zoladex other than the hot flushes initially but not so much now, my wife says get used to it. I’m 68 and also am a hill walker!

[Hillwalker87]

That's some great info, thanks for that, will relay some info back regarding the zoladex. Did the flushes wear off a bit then later on? He is getting them quite intensely at times but seems happy to put up with them rather than the alternative. Haha, my mother said exactly the same! Also, where did you go to get the mets zapped? Its seems as though this isn't an option here in the UK but I could be wrong.

[Ausi in reply to Hillwalker87]

The hot flushes do get lesser over time, I hardly notice them now, although my injections are every 13 weeks, an injection/implant, Goserelin 10.8mg. Regarding radiation, there have been comments and posts here by some being not that supportive on radiation as a treatment “wack a mole”. As suggested above maybe another stronger ADT should be used, Zytiga (Abiaterone) or Xtandi (Enzalutamide)or chemo.

I had my radiation done here in Australia at Genesis Care. I think they’re a UK company and have many centres there.

[Hillwalker87 in reply to Ausi]

That's great info that mate, thanks for that