Hi,
I have been diagnosed with prostate cancer for sometime now and have been monitoring it for the last 10 years plus. I have now decided to have Radiotherapy. I have had the first hormone injection and finished the pills due to have the second injection at the start of December.
I have a PSA of 21 (however my PSA has always been high never below 18 never higher than 22) a Gleason score of 3+4 7.
Reading thought all the post on this site I am surprised as to how long suffers are on hormone therapy, in some cases going on for years.
Although on the whole I am impressed with the level of care and attention that Doctors etc have taken in my case, I sometime worry that they feel that have to take action. When I was first diagnosed the surgeon then want to remove my prostate, despite all the side effects from this operation. That was over 10 years ago. I have had ten years of good health as I decided to monitor the cancer.
Even now with a slow growing cancer like mine I think having treatment is a 50/50 call. I could most likely died with the cancer not from it. Who knows.
sorry the above is a little of subject.
As far as I have been told ( and I have asked several times) I will be only having two lots of hormone injections with no further medicine. I am not sure I could tolerate having HT on a long term basis. Have I got this wrong? Will I be prescribed HT following my RT?
The main issue I am having at the moment is the number of times I have to urinate at night, 5 to 6 times, this won't improve after the RT. Is this a common issue?
This a rather rambling post I am not sure what my point is. However, I would be interested in other peoples experiences.
Good luck everyone
Hi Upside.
The hormone treatment prior to radiotherapy will stop the cancer from spreading further and shrink the prostate to make an easier target for the RT. I had a total of three years of HT but there are others on here who stopped immediately after the RT was finished. It mostly depends on your Gleason score, which for you is only 7, so I think you may well stop the hormones as soon as your RT is finished. Certainly HT is a bit of a struggle but, with determination, you can keep exercising and work through it.
I also had a problem with nocturia but adjusted my fluid intake and it's all good now. I stopped caffeine and alcohol completely for nearly three years and drank a lot of fluid in the mornings, a little in the afternoons and nothing after 6pm. That solved the problem for me and might be worth a try. I started drinking coffee again in the mornings about six months after my last hormone injection and very occasionally have a glass of wine but otherwise I maintain the regime and it's still working for me.
I hope that helps.
Thanks for your response, very useful.
Its a long time now since I have had a glass of red wine. I thought it sensible to give up caffeine and alcohol for the duration. I do hanker for a good cup of black coffee now and then but its not much to give up.
Kind Regards
I’m glad you’ve asked this question! My husband saw the oncologist this morning. He is to have 4 weeks radiotherapy - we were told to expect either 4 weeks or 7 1/2 weeks. We were told to expect hormone therapy for 2-3 years. The oncologist said 6 months! This was a massive surprise! Is 6 months enough? Does anybody know of any study/ research that supports this? I questioned this and the oncologist said that it lessens the risks of HT side effects but if my husband is worried he can have HT for longer.
Hi Worriedwife
When my HT started in October 2018, I was told that I would be on HT for three years. We moved to a new area under a different NHS trust after about 18 months (during the first week of lockdown!) and I was put under a new consultant. After a very chaotic transfer of medical records my new consultant (whom I still haven't seen) told me by letter that I should stop the HT after 2 years as there was no medical evidence for the third year being any more effective than two years.
As I was coping well with the side-effects I decided to stay on HT for the full three years, as I felt I should give myself the best chance. The consultant accepted my decision and it's now nearly 18 months since my last injection. My last PSA test came back as 0.2 and I have another one in a couple of weeks.
I hope that helps.
Thank you Seamus. I looked online at the NICE 2022 guidelines last night at www.nice.org.uk/.../Recommendations
i came across the following:
‘1.3.21 Offer people with CPG 2, 3, 4 and 5 localised or locally advanced prostate cancer a combination of radical radiotherapy and androgen deprivation therapy, rather than radical radiotherapy or androgen deprivation therapy alone. [2014, amended 2021]
1.3.22 Offer people with CPG 2, 3, 4 and 5 localised or locally advanced prostate cancer 6 months of androgen deprivation therapy before, during or after radical external beam radiotherapy. [2014, amended 2021]
1.3.23 Consider continuing androgen deprivation therapy for up to 3 years for people with CPG 4 and 5 localised or locally advanced prostate cancer, and discuss the benefits and risks of this option with them. [2014, amended 2021]’
There is a lot to read through and I’m not sure if I have interpreted this correctly but it seems to support our conversation with the oncologist yesterday.
I am wondering if there is a higher risk of recurrence with only 6 months of HT ? Or, are the risks of continuing with HT higher than the risks of recurrence? My husband has been categorises as T3a N0 MO Gleason 4+3 =7. PSA 10. I think this is classed as locally advanced, intermediate risk.
For your interest.
I have a Gleason of 3+4 = 7. PSA of 23
I am having 6 months of HT and RT
I have been told that there will not be any further need of more HT. I am comfortable with that.
As I have mentioned before I have been monitoring my PC for over 10 years. Not a lot has changed over that time. PSA around the same but the Gleason has increased. Having said that as my cancer is slow growing, I still think that the HT and RT treatment is a 50/50 call.
Know way of knowing until its too late of course.
Not sure if the above helps.
Good Luck
Thanks Upside. I think it’s a matter of weighing up risks of recurrence versus risks/ side effects of long term HT. I think he has no option but to have the radiotherapy as one of the prostate tumours is right up against the prostate wall.
My diagnosis was T3A N0 M0, locally advanced, but with a Gleason score of 4+5 = 9 and a PSA of 15, so a much more aggressive form of cancer. My father died of PC at the age of 53 (nearly 50 years ago now) so I was inclined not to take any chances and get the best treatment possible. As my original consultant had recommended 3 years, I went along with that rather than the opinion of a new consultant whom I had never met and may not have read my notes correctly.
I'm good at the moment. My PSA was undetectable throughout the three years of HT and for another 12 months after. At my last test in June this year it came back as 0.2. I had a telephone call from the oncology nurse at the hospital and he told me that was perfectly normal and they would continue to test my PSA every six months. Provided it stays below 2 they will take no action. My next test is in a couple of weeks.
I am now 75 and walking 30+ miles a month, swimming a mile twice a week and coastal rowing as often as the winds and tides allow (only managed 22km this month so far). I have signed up to walk a marathon in January to raise funds for Prostate Cancer UK, but expect to do a lot more than that.
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