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Surgery OR Hormone + Radiotherapy

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User

Posted 23 May 2022 at 01:13

When we used to have an annual Leicester get together (pre-Covid) there was usually a guest speaker. For 2 or 3 years, we had Jamie - Si-ness's amazing onco who was willing to try early chemo before it was even a trial. He would talk about trials and research and what was emerging. We also usually had a summary of the most recent national BAUS / uro-oncology conference and I remember it being said that the view of that year's speakers was that radiotherapy would become the gold standard and future generations would be appalled that prostates were ever surgically removed!

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

User

Posted 23 May 2022 at 04:37

Originally Posted by: Online Community Member

This might be relevant to you T-man.

FDA approves pet imaging drug

Accurate location of mets is something that's improved recently with substances like Gallium 68 and it's making targeted treatment more effective.

In my own experience I had Gleason 9 with mets in nearby glands picked up and treated with RT followed by HT, the latter having now reached the 18 month mark. So far, so good with psa <0.01.

There are varying views on scans but it would be valuable for you to know what they've got planned.

Jules

Yes the FDA are a bit behind on this one, even more than NICE who like them tend to move slowly, yet the 68 Gallium PSMA scans were done in the London area in 2018 when I had mine and possibly before that. There is now a more advanced scan that was formulated by Martin Pomper and his group at John Hopkins in the USA, where it was being trialled there and in Canada. I don't know whether it's available in the UK yet. It's termed 18F DCFPyL

Barry

User

Posted 23 May 2022 at 05:38

Originally Posted by: Online Community Member

Yes, I remember those friendly meetings with guest speakers like Jane Plant and Jamie who answered questions put to them after presentations. When Prostate Cancer UK took over organizing the meeting from George, they decided not to have a speaker and I remember saying just before that this could result in a fall in attendance which is what happened. As a consequence of this they decided to discontinue meetings.

Certainly there have been significant advances in the way RT is administered but surgery, particularly with wider availability of the da Vinci Robot, still continues to be frequently used, particularly for younger men. Then Focal therapy, such as HIFU, Cryotherapy, Nanoknife, FLA, and Photodynamic therapy (Spectracure P18), currently being trialled, are likely to account for an increasing proportion of cases. Surgery is not usually given where patients have advanced cancer but more drugs are being used in such cases, sometimes in combination. Outcomes should continue to improve, especially, especially where men are diagnosed at an early stage.

Barry

User

Posted 23 May 2022 at 06:58

These last few posts are interesting in relation to my original post. When I see the oncologist I think I need to ask if, prior to RT, a further scan is done to accurately locate “mets” (?).

User

Posted 23 May 2022 at 10:32

Have you already had a bone scan? If you have mets, you won't be offered RT. At least not curative RT. Your cancer would then be deemed incurable and a different treatment regime would apply.

Best wishes,

Chris

User

Posted 23 May 2022 at 10:40

Chris, no I haven't had a bone scan. I might be confused with the term "mets" - microcolei in his post above mentioned mets and I assumed this means the cancers in the prostate. My diagnosis is T2c which I understand means that the cancer 'appears' to be confined within the prostate and is in both sides of the prostate.

User

Posted 23 May 2022 at 17:35

Hi,
I had T3b, local severe, at aged 70, and definitely had to have the treatment: Brachytherapy. One big invasive radiation hit, and then six weeks of non-invasive radiation. My advice would be to have the treatment good results. The downside is the hormone Zoladex which I had for two years. So I was OK for 5 years after that but now it has come back: still at T3b local severe. Back to the Zoladex which kills your testosterone and (in my case) turns me into a kind of fatigued Zombie around 4.0 pm every day. But is has to be done and you can get by by lots of walking and early to bed. Some people are badly affected psychologically, but some hospitals offer counselling. I had a little .. it was very helpful and took some pressure off the family. Apart from the terror of having the cancer, Zoladex can give you an extra dose of depression. Nowadays there is a range of cognitive think positive don't be too hard on yourself, kind.
Cheers to all,
Otto

User

Posted 23 May 2022 at 18:15

Originally Posted by: Online Community Member

Chris, no I haven't had a bone scan. I might be confused with the term "mets" - microcolei in his post above mentioned mets and I assumed this means the cancers in the prostate.

No, "mets", short for "metastases", means spread of the cancer to places outside the organ in which it originated. Once cancer has metastasised, it then becomes incurable.

It's common (although not universal) to have a nuclear bone scan as part of the diagnostic process to make sure that the cancer hasn't spread outside the prostate.

Best wishes,

Chris

User

Posted 23 May 2022 at 19:07

An RP involves shortening the length of the urethra (and hence the penis) by about 2". It doesn't grow back!

Cheers,

Chris

User

Posted 23 May 2022 at 19:45

Please note that HT/RT can also cause a shortening and possibly a slight reduction in girth as I can personally testify. However, nobody told me about rehabilitation, so doing something about this in good time might have met with some improvement and useful erections but I think in the long term you tend to lose erections anyway.

Barry

User

Posted 23 May 2022 at 19:55

Same here, Barry. Not what it once was! To be honest I never fully recovered my libido after my HT.

Cheers,

Chris

Edited by member 23 May 2022 at 19:55 | Reason: Not specified

User

Posted 23 May 2022 at 20:45

Nope. I haven't heard that before.

Jim 👍

User

Posted 23 May 2022 at 21:08

True prostatectomy shortens the length of the urethra - but that brings the bladder closer to the pelvic floor. The urethra isn't able to slide through the pelvic floor (it is tightly attached to it where the external sphincter is) so that change won't affect the penis length.

Personally I suspect the often observed change in penis length to come down to the effect on blood flow into erectile tissues. I think all men are familiar with their penis changing size in the flaccid state - most obviously the way it shrinks with vigorous exercise or with cold (swimming in the sea around Britain being a double whammy). Although blood flow is most obviously associated with erections, those size changes involve the same mechanism, and after injury to the penile nerves the "normal" state has less blood flow thus a smaller size.

Not sure though about the consequences of HT/RT, there must be a risk to the nerves from radiotherapy but the way the standard hormone therapy works it could take a very long time to completely recover testosterone levels which are the other variable.

User

Posted 23 May 2022 at 22:36

Originally Posted by: Online Community Member

About 30% of men who choose the surgery route go on to have a recurrence and require salvage RT/HT later.

lyn, I’ve been looking for the answer to this question, so thank you. Can you point me in the right direction to the link please?

User

Posted 24 May 2022 at 00:08

The statistic was published recently in a BAUS report which I can't find online at the moment although it was shared on this forum.

America has published very similar stats - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3624708/

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

User

Posted 24 May 2022 at 02:20

My apologies T-man, I had meant to address my comment to Bill the American because of US approval of Gallium marker for scans.

In your case that level of scan might not be relevant tho metastases to glands near the prostate are not easily detected by MRI scans, as I found on my path. Bone scans are a different process.

If you were to choose RT it would seem sensible to know beforehand if there's any chance of mets being present. There are scans that can do a good job of detecting these now. There's a couple of reasons behind this thought. Firstly, if you do have mets to glands, it's possible to "include" them in radio therapy, not quite so precisely as with targeting the prostate but to the extent that it has a good chance of destroying them. Secondly, there's a limit to the amount of radiation that's regarded as acceptable, so one round to treat the prostate might get close to that level and a second round to take on mets later would just add to the amount of radiation you'd been exposed to.

If you choose to go with a prostatectomy you would still have the option of having RT later if you had any form of recurrence.

I had RT/HT and I'm very happy with the results at 1.5 years. If the treatment I've received here in Australia works out as well as they believe it will I could beat this disease without having to deal with recurrence BUT that's not certain of course. I'm 75, I had 81 GY of RT in 45 fractions/sessions and I've had no lasting or new side effects since the treatment.

So again, sorry if my post was slightly OT for you but I hope this information is still useful for you.

Jules

User

Posted 24 May 2022 at 12:18

Interesting J-B.

I don't know how much of what you say is factually correct. One point to note is that the penis is pulled into the pelvis as well as the bladder pulled down.

Two facts I can provide are:

1/ I was warned by the NHS before the op that penis shortening was likely.

2/ I have most definitely experienced shortening. I have used daily Tadalafil and occasional pump.

I have read of loads of men that have experienced long term non recovery of penis length.

Cheers,

Jim

User

Posted 24 May 2022 at 13:15

Guys

Bollinge often comments that his surgeon owes him 2 inches of penis. I sure I read that the Retzius gave better continence recovery but did result in more shrinkage.

I watched a couple of Da Vinci operations on you tube and seem to recall the surgeon saying he released the bladder support to reduce the gap to the urethra. I think my own surgeon confirmed he did this. When needing an emergency suprapubic catheter fitted, they had to get a radiographer into the recovery room to locate the bladder, because "the bladder is moved during radical prostatectomy".

My own flaccid penile health is better now than it was post op eight years ago. I doubt I will ever regain normal erections, but with the use of the pump, injections and masturbation my swollen penis is pretty much the same as pre surgery and certainly not two inches shorter. As already said there are lots of contrasting articles written about shrinkage and recovery.

I do see guys who say they now have to sit to pee. I was advised to refrain from using the pump because of a stricture, but my surgeon did say engorging the penis was unlikely to have any effect on the joint.

Thanks Chris

User

Posted 24 May 2022 at 18:09

Burghboy, I wasn't suggesting people don't experience penis shortening, that is definitely a common outcome. I was simply suggesting that the changes in nerve supply might mean the "normal" state is closer to the cold bath size than what you were used to.

If anything, the observation that some people experience a degree of recovery like Colwickchris would be consistent. A missing stretch of urethra isn't going to grow back but nerves are capable of a degree of regrowth (typically by surviving nerves branching to re-establish the connections lost due to damaged fibres). That could improve the flaccid blood flow, hence size. And probably helped by tadalafil.

The urethral sliding idea does seem to have a lot of traction on internet sites, but not in serious medical publications.

User

Posted 30 May 2022 at 15:29

Thank you to all the community members who have replied to my initial post, the advice and feedback from individual’s experiences has been very helpful. I have now had a discussion with the oncologist who has confirmed that the cancer is localised and that RT would be 6 months of hormone treatment followed by 4 weeks of radiotherapy. I have decided to have the surgery and surprisingly the procedure is to be in less than 3 weeks time. I intend to add to this thread post treatment as I can see how valuable the sharing of experiences on this community is.
Tony

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