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Oncologist recommendation

User
Posted 03 Nov 2022 at 13:30

Bit of a left field one this, but I need to seek a second opinion from an oncologist outside of the hospital I'm being treated in. Have been put forward for pretty radical surgery for recurring prostate cancer, backed by both the urologist and the oncologist.  But before I go under the knife for what will be life-changing surgery I just want to make sure there isn't a medical alternative to the surgical option. Has anyone had an oncologist they've been impressed by? Ideally at one of the London teaching hospitals...

User
Posted 08 Nov 2022 at 17:49
Royal Marsden do easy to access second opinions so long as you can pay... Just go to their website fill in the online form or call them.
User
Posted 08 Nov 2022 at 23:44
I will be interested to see what Andy thinks, if he comments, but I can't think of anyone else here who has been in a situation like this and not been on long term HT. We did have a member (Otto?) who had a rib removed, and his femur and part of his spine I think, which is exceptionally rare but even he was on HT. It would be interesting to know why your oncologist doesn't think that is appropriate for you.
One possibility is that you have a type of prostate cancer that doesn't respond to HT but if that was the case, I don't think they would have bothered putting you on the short course. Have you got any paperwork that identifies which type of PCa you were diagnosed with ... the most common type is adenocarcinoma.

If you were my brother or partner, I would want to understand a) if the scans were all clear, what makes them confident that removing the bladder will remove the cancer? What if they remove the bladder and then it turns out there are also mets in other places and you end up on HT and chemo anyway? And b) how long are they comfortable with waiting to see whether the HT starves the cancer sufficiently to avoid such radical surgery?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Nov 2022 at 01:58

Originally Posted by: Online Community Member


HIFU and proton beam therapy are both given as salvage treatment to men with no prostate but I don't know what damage they would do to the bladder neck and you might have to go to Europe for proton beam therapy. I don't know about cryotherapy post-RP


I follow that as with normal photon radiation proton beam can be directed outside the Prostate. However, I am surprised if HIFU will be used for somebody with Prostate Cancer outside the Prostate.  When I had my first HIFU treatment in 2015, I was told by the highly experienced person administering it, that they would not treat even the Prostate if there was also cancer outside it.  In the event, I was given the benefit of the doubt of cancer being in an iliac node and my Prostate was treated.  So it seems to me it follows that HIFU would not be given to someone with PCa without a Prostate.  As the HIFU sound probe is constrained within the rectum, through which it is fed, it cannot even focus on all parts of a Prostate, so focussing could be another problem.  

Edited by member 09 Nov 2022 at 02:00  | Reason: Not specified

Barry
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User
Posted 03 Nov 2022 at 21:18
James, the site rules prohibit naming medical staff.

Best wishes,

Chris
User
Posted 03 Nov 2022 at 22:02

Thanks for the guidance Chris. In which case perhaps there's the oncology department of a London hospital someone could recommend? For my own peace of mind I just feel I need another opinion on any medical options that might exist beyond HT treatment, which my current oncologist was pretty dimissive of in terms of offering a medium to long term solution to my specific issue.

User
Posted 03 Nov 2022 at 22:40
I think your only route really is to seek a second opinion from one of the hospitals that has developed expertise in focal treatments such as proton beam therapy, HIFU or cryotherapy. It us fairly simple to get a list of the most innovative and well known oncologists via Google ... look for the lead clinicians at Imperial College Hospitals Trust or University College Hospitals Trust
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Nov 2022 at 11:50
Belated thanks for the reply. I was really disappointed the oncologist wouldn't suggest ADT as a short-to-medium term response. Give me five years without an ostomy rather than 10 years with two, which is the surgical course they're recommending. Maybe because the cancer is presenting on MRI and Pet rather than just a chemical reoccurence? Who knows. I should have asked. In the meantime I will look into your suggestions. Thanks again.
User
Posted 07 Nov 2022 at 17:03
You are not having any hormone treatment? 🤯😵‍💫
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Nov 2022 at 17:59
They have put me on a six-week course of bicalutamide with monthly zoladex injections, but this is by way of preparing me for surgery not as part of any longer term plan. I didn't want to burden you with my problems so posted this question elsewhere on the site, but do you happen to know if the focal therapies are delivered to people without a prostate? I had mine removed in 2015, but the cancer has returned in the bladder neck. Not sure whether I'd be eligible.
User
Posted 07 Nov 2022 at 19:35
It is better to keep all your information in one thread rather than starting different threads all the time.

You have advanced prostate cancer; it makes no sense that you are not on life long HT. Presumably, there is a medical reason why you can't have it?

HIFU and proton beam therapy are both given as salvage treatment to men with no prostate but I don't know what damage they would do to the bladder neck and you might have to go to Europe for proton beam therapy. I don't know about cryotherapy post-RP
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 07 Nov 2022 at 21:12
Thanks. Yes, I realised that when I posted, but my head is a bit scrambled at the moment. The hospital rationale is that surgery offers the best oncological outcome - HT would, they say, be a very poor second best. It's just that the surgery is so radical (removal of bladder and rectum) I'm just fishing around for an alternative. Maybe there isn't one and I just have to suck it up.
Thanks for your advice. I really do appreciate it.
User
Posted 07 Nov 2022 at 22:30
I think it would be wise to see an oncologist for a second opinion anyway. In the UK, it is unheard of for a man with advanced PCa to have more and more surgery without long term HT to starve the cancer and stop it spreading. Something doesn't make sense.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2022 at 17:20
Thanks again for your help. Do you mind if I PM you? Don't want to take up any more of your time, but my brain is a bit fried trying to take on board the new diagnosis and based on your last comment wouldn't mind just explaining the background in a bit more detail to see if it makes any more sense
User
Posted 08 Nov 2022 at 17:49
Royal Marsden do easy to access second opinions so long as you can pay... Just go to their website fill in the online form or call them.
User
Posted 08 Nov 2022 at 19:34
Sorry James, I don't do direct messages - personal preference but i think it is important that conversations take place in the open forum so that any incorrect or misleading information can be spotted by other members and corrected.

In terms of time, it makes no difference whether you ask on the forum or though DM .. that's what we are all doing here, trying to support each other. Ask away!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2022 at 20:23
Completely understand and thanks again for responding so promptly. I'll just avoid going into the kind of hospital-related detail I might have done privately. So, a quick snapshot of medical treatment, all of which has been conducted at one centre of cancer excellence in England. Apologies in advance for the length.
First diagnosed in 2009 with T3 disease (Gleason 4+4) and treated with nearly three years of androgen suppressant and prostate and pelvic radiotherapy.
Recurrence of disease in May 2015 and because it was said to be contained within the prostate a salvage prostatectomy was offered and performed. But the op left me with complete urinary incontinence and impotence. Since then I've had three-monthly PSA tests and despite me having no prostate the cells left behind have seen my PSA rise slowly and sporadically and registered at 2 at the last but one test. During that period I had two PSMA Pet scans which failed to pinpoint any disease.
Then a couple of months ago an unrelated MRI scan to do with sorting out the incontinence revealed evidence of disease at the bladder neck and a susbsequent Pet scan showed that my ureters were blocked and kidneys engorged. I had bilateral nephrostomies, one of which is still in place.
Intitially, the plan was to remove the bladder which because it's redundant I was fairly content with. But another MRI scan revealed the bladder to be pretty much fused to the rectum making separation impossible and therefore a colostomy as well as a urostomy required.
Interestingly (perhaps) the PSA test was repeated a couple of weeks ago and it was 0.6, presumably as a result of the biopsy.
Anyway, so urology surgeon and oncologist both in agreement that surgery offers the best oncological outcome and I have been put on a six-weekly course of 150g bicalutamide with monthly zoladex injections principally, as I understand it, to prepare for the surgery. Because of the lifestyle implications, the surgery doesn't sit easily with me which is why, at your suggestion, I'm exploring focal therapy treatment and, perhaps, lifetime HT. At one point the surgeon did say that the HT drugs I'm now on might well clear the blockage in the ureter meaning the nephrostomy could be removed. On the other hand he might also say this is why surgery is necessary. Isn't always easy to get consistent and definitive guidance from consultations, although I have absolutely no complaints on that score. So there in longer form than I intended is my medical history.
Based on that synopsis if there's any guidance on kicking back on surgery in favour of HT in all its forms I'd be grateful, because I'm currently floundering
User
Posted 08 Nov 2022 at 23:44
I will be interested to see what Andy thinks, if he comments, but I can't think of anyone else here who has been in a situation like this and not been on long term HT. We did have a member (Otto?) who had a rib removed, and his femur and part of his spine I think, which is exceptionally rare but even he was on HT. It would be interesting to know why your oncologist doesn't think that is appropriate for you.
One possibility is that you have a type of prostate cancer that doesn't respond to HT but if that was the case, I don't think they would have bothered putting you on the short course. Have you got any paperwork that identifies which type of PCa you were diagnosed with ... the most common type is adenocarcinoma.

If you were my brother or partner, I would want to understand a) if the scans were all clear, what makes them confident that removing the bladder will remove the cancer? What if they remove the bladder and then it turns out there are also mets in other places and you end up on HT and chemo anyway? And b) how long are they comfortable with waiting to see whether the HT starves the cancer sufficiently to avoid such radical surgery?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Nov 2022 at 01:58

Originally Posted by: Online Community Member


HIFU and proton beam therapy are both given as salvage treatment to men with no prostate but I don't know what damage they would do to the bladder neck and you might have to go to Europe for proton beam therapy. I don't know about cryotherapy post-RP


I follow that as with normal photon radiation proton beam can be directed outside the Prostate. However, I am surprised if HIFU will be used for somebody with Prostate Cancer outside the Prostate.  When I had my first HIFU treatment in 2015, I was told by the highly experienced person administering it, that they would not treat even the Prostate if there was also cancer outside it.  In the event, I was given the benefit of the doubt of cancer being in an iliac node and my Prostate was treated.  So it seems to me it follows that HIFU would not be given to someone with PCa without a Prostate.  As the HIFU sound probe is constrained within the rectum, through which it is fed, it cannot even focus on all parts of a Prostate, so focussing could be another problem.  

Edited by member 09 Nov 2022 at 02:00  | Reason: Not specified

Barry
User
Posted 09 Nov 2022 at 14:31
Good point Barry
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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