Hi Mike,
Some men do well on HT for a number of years whilst for some it only works for a very short time. In the latter situation it can be replaced or augmented by other treatments of which chemotherapy is one. RT does not necessarily bring severe side effects but these can vary from man to man in range and intensity. I think it is more likely for most men that HT will have a greater impact with side effects than RT. The RT dose is shaped so as to minimise damage to other organs. The comment about the tumour being in an awkward place may have been in regard to the focal therapy you considered (if HIFU), because there is an area within the Prostate on which the probe is unable to focus.
PCa is a very complex disease where even clinicians can struggle sometimes to predict outcomes and not wish to advise men what of several treatments to opt for, because ultimately is is down to an affected man to consider depending how risk adverse they are. Yet consultants have the benefit of seeing scans and biopsies and using their experience to help evaluate an individual case, so any queries you have are best addressed to them. Your individual experience may not be the same as others even with a similar diagnosis.
As regards Space Oar, this has been credited with being helpful in some cases but has not been widely rolled out and some hospitals have stopped giving it I read.
If you have not yet done so, you may find it useful to download or obtain a copy of the 'Tool Kit' as here :- https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880
Edited by member 22 Mar 2021 at 19:30
| Reason: Correction HT for RT in first sentence
Barry |
User
The overwhelming majority of men DON'T have major long-term side-effects from RT. I had RT a little over two years ago and found it an entirely tolerable experience. Some bladder and bowel irritation in the latter stages, as is entirely normal. The bladder irritation wore off in a few weeks; bowel took longer but was pretty much back to normal after 6 months and entirely so after a year. I currently have no side-effects at all that affect my quality of life.
Happy to answer any questions you may have about it.
Chris
Edited by member 22 Mar 2021 at 15:44
| Reason: Not specified
User
I think I would start with putting your diagnosis in this website.
https://prostate.predict.nhs.uk/
I have taken some guesses as to all your diagnosis numbers. Roughly speaking it says if you hadn't been diagnosed with pc you have about a 50% chance of reaching 90 years old. As you have been diagnosed you only have a 40% chance of getting to 90. If you have radical treatment your chances are about 45%.
So there isn't much to choose between doing nothing and getting treated, personally I had some RT, less than will be planned for you, and I had hardly any side effects. HT is not much fun, and may lead to osteoporosis so I wouldn't want to be on it for too long at your age.
I don't think dieing of prostate cancer would be much fun, not too sure what I would prefer die of though, anyway if I were in your position I would probably choose RT. But obviously it's your choice.
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User
Agree with the above - some people have no (or very few) side effects from RT. Also, my husband had the urethra and bottom of his bladder included in the RT because that was where they suspected the random cancer cells were - it didn't cause any problems for him.
Our hospital (a major cancer centre) was an early adopter of SpaceOar but they have stopped offering it already - they had low uptake and found little benefit. SpaceOar is no good if it would impede the radiotherapy from reaching the target area; it might be that this is what was meant by the 'difficult position' of one of your tumours.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks to all who have replied so quickly. Still trying to absorb all the information I've received recently and to try to work out the best options. Thanks Barry for the Tool Kit suggestion - it's been ordered.
Comforting to to know from Chris, Lyn and Dave that RT did not cause too many problems. I've been told that HT would continue for two years after RT. Is this what happened in your experience and once stopped, did side effects from the HT cease? Does anyone know what would happen if I stopped HT immediately after RT? Information on SpaceOar very useful and fits in with my consultant's view.
Reassuring that all seem positive of the benefits of RT.
Thanks again, everyone.
User
I had HDR Brachy and EBRT plus HT. My dose of EBRT was about half what yours will be. I had no side effects that I know of from the EBRT.
I had HT starting 6 months prior to RT for a total of 2 years. HT was not dreadful, main problem was lack of libido, it is true that you don't miss sex because of the lack of libido, but life isn't quite as much fun. I'm 55, losing muscle mass and bone mass was not a big problem it could be more relevant in your 80s. I did not get many hot flushes. Once off RT I recovered libido after about nine months.
HT prior to RT is very valuable. HT after RT is not proven to give much extra benefit. Personally I stuck with the HT but if I had of had unpleasant side effects I would have stopped it early.
Edited by member 23 Mar 2021 at 18:08
| Reason: Not specified
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User
I was on HT for 18 months in total: 6 months before RT and a year after. My oncologist reckons that there's no real difference in benefit between 18 months and 2 years of HT. The side-effects of HT do go away, but it takes a while (many months).
Chris
User
I had RT and HT (Zoladex). 37 sessions of RT, actual treatment fine. I had bowel problems for a while, meaning urgency, no problem whilst at home but I did have a few accidents whilst out, quite degrading but no lasting issues, this started maybe 4-6 months after RT.
I was on Zoladex for 3 years and have to admit to several expected side effects. HT finished June 2018 still carrying weight around stomach, still couple of night time hot flushes etc but looking back I'd do the same (tho only choice was HT/RT). I also had 2yrs of abiraterone, enzalutimide & steroids included in the 3 yrs as part of trial.
Peter
User
Does anyone know what would happen if I stopped HT immediately after RT?
Well rather unusually, by present treatment plans, I stopped HT (Zoladex in my case), immediately after RT in 2008. I found HT made me very tired with a few other minor side effects and as nobody suggested I continue with it, I didn't ask for more of the same. In fact I have since been offered HT but have declined it. Whether it might have benefitted me I can't say and neither can the clinicians who advised me. My PSA stayed around 0.05 - 0.6 for a couple or so years post RT before beginning to increase slowly. By 2014, The Royal Marsden referred me to UCLH for HIFU as a salvage treatment for failed RT. I subsequently had HIFU in 2015 which knocked back the PSA but again it began to increase albeit very slowly. By late 2020 my PSA was just above the figure which denoted biochemical failure. I had an mpMRI in late February this year and have a telephone appointment next month to discuss whether I will be offered repeat HIFU, which I would be OK with, or HT which I don't really want.
I don't know if the foregoing is of any help to you other than to show you are not compelled to continue with HT after RT if you so decide although it is now generally regarded as helping RT do the job if continued for between 18 months and 3 years post RT. There is also the possibility that you stop HT and only restart when your PSA reaches a certain figure. This intermittant treatment gives what is called a Hormone Holiday during which debilitating effects of HT can reduce for a time.
Barry |
User
Thanks for all this useful information everyone. When it looked likely that I was finally going to be diagnosed with prostate cancer it seemed, because of my age, that my remaining years could be seriously affected by the side effects of HT and RT and I may have been tempted to do nothing if my Gleason score (4+4=8) had been lower. However the risk of the cancer spreading is an unsettling thought to live with and I'll most likely go ahead with the treatment plan outlined by my consultant radiographer - next consultation on 20 May. HT regime going OK with no side effects so far.
We have two sons aged 53 and 55 so recommended them to have PSA tests. The elder arranged a phone consultation with his long standing GP and was discouraged as he had no symptoms and my cancer must have developed during my 60s so come back when he reached 60! He then said in all the years in practice he had only known two men with prostate cancer in their 50s. This forum alone confirms prostate cancer can occur for men in their 50s and a PSA test could have provided valuable warning signals. We don't think our son can be easily persuaded to ask again for a while. Younger son tested negative.
Thanks again everyone; we hope all goes well with you.
Mike
User
Hi Mike, this makes me so angry. We have so many members diagnosed in their 40s, some with advanced prostate cancer. We have had members who died in their 40s. We have also had members diagnosed in their 30s and our friend has recently lost his 27 year old grandson to prostate cancer (although that is extremely rare)
Your son's GP sounds a bit out of touch
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I was diagnosed with prostate cancer at the age of 55 precisely because my GP said “You’re over 50, so we’d better do a test”. I had no symptoms. My PSA came back as 31 - had it been left another year or two the cancer would probably have been advanced. My GP literally saved my life, I reckon.
Chris
User
Agree with Lyn about lack of knowledge by GPs about how early PCa can start. Also, some GPs seem to think PCa will exhibit symptoms which in many cases it does not. There is a slightly increased risk of a man developing PCa if his father had it so suggest your son who was discouraged from havind the PCa test takes this up again in due course.
Barry |
User
Just had to record our appreciation for the Tool Kit which arrived today - everything you need to know in a neat package!
However controversial PSA tests might be in some circles, especially GPs, we'll continue to do our bit to raise awareness in the hope of avoiding the pain and sadness of young family members and friends who might suffer through ignorance.
Keep up the good work on line.
Mike
User
Hi Mike, I was recently diagnosed with PC at 53, one of the first things I was told was to ensure my 3 brothers got tested asap... 2 were fine but the eldest, who is 61, has been diagnosed with PC and they also found a lump on his kidney which needs dealing with... All this with no clear symptoms beforehand as far as I am aware! .. So definitely recommend your eldest son gets tested to be on the safe side.
Cheers,
Nick
User
Originally Posted by: Online Community MemberHi Mike, I was recently diagnosed with PC at 53, one of the first things I was told was to ensure my 3 brothers got tested asap... 2 were fine but the eldest, who is 61, has been diagnosed with PC and they also found a lump on his kidney which needs dealing with... All this with no clear symptoms beforehand as far as I am aware! .. So definitely recommend your eldest son gets tested to be on the safe side.
Cheers,
Nick
My prostate MRI also found kidney cancer, too, again with zero symptoms, so now I have one kidney but I am, touch wood, "cured". My surgeon told me that had it not been found I would probably have been dead in three years. That was three years ago this year. Scary thought!
Chris