We are Macmillan. Cancer Support
Just thought I would introduce myself.
My name is Paul, and I was diagnosed 4 weeks ago with locally advanced prostate cancer (has just breached the prostate capsule, and is affecting the seminal vesicles). My PSA count was 10.4, and the Gleason Factor was 8/9. I started hormone therapy almost immediately, and was originally scheduled to start radiotherapy in three months time.
However I was offered the opportunity to take part in the Stampede Trial, and am seriously considering this option. It will mean starting the radiotherapy at six months, rather than three, and receiving randomly selected extra treatments.
As I see it, any extra treatments must be a good thing, and if it doesn't help me personally, at least the info gained may help others. Obviously the additional side effects have to be considered, but I still think it will be worth it.
Prostatectomy is not an option, as the cancer has already advanced beyond the capsule, and same applies to brachytherapy.
Would love to hear from anyone else who is participating in the Stampede Trial, and their thoughts on whether it's a 'good thing'.
The initial news was devastating, as I thought the syptoms I was experiencing were simply a flare-up of a 'waterworks' problem I had some 15 years ago (which all tested clear at the time).
The worst time so far has been the two weeks wait to see the oncologist, who was to give me more detailed information. It was generally good news tho' - my bone scan was clear, and the biopsies taken from a recent colonoscopy were also clear. (I'd had 'tummy' problems for a while, had lost a lot of weight, and I had very real fears that the cancer had spread to the colon as well ).
I realise that I still have a long way to go, but I consider myself to be still young (61), otherwise fit and healthy, and fortunate enough to have a wonderful, loving and supportive wife, who is as determined as I am to beat this thing.
Sorry to waffle on, but I feel it's good to put things in writing.
Best wishes to everyone else in a similar situation.
hi paul i do understand what you and your family are going through my hubby (peter) was diagnoised in march this year and it does take some time adjusting to living with cancer especially as it is not at the stage of being cured you automatically think my god he might be dead next week but we have got over that stage and are now much more positive now we have looked on the internet and reserched a bit more peter like you will be 61 soon and his psa was 121 he was offered to go on the stampede trial but declined his psa now is 7 he is on hormone therapy he had a biopsy and all 10 samples were cancerous his gleason was 9 he had a ct and bone scan and they came back clear , he goes for another scan this thursday and the consultant said if it is clear he could have some radiotherapy to blast it .i hope this has helped you a little dont be affraid to message me if you have any questions its nice to know how other people are doing love to you and your family from jill x
Just recently diagnosed myself and was looking about the internet for informtion on the Stampede trial which I have been offered. Just registered here to post this, so will write more later when I have time and have a look around, but just wanted to say I was also looking for information on the trial.
Has anyone been on it for a while and have any advice?
Best of luck to everyone
Hi, my husband has been on the Stampede trail for approximately three months, and it is the best thing he could have decided to do. The HUGE amount of extra monitoring is a great relief - before this communication by the regular consultant and his team was so low key as to be non existant, now he is receiving three weekly monitoring, and his care has been transferred to the consultant oncologist in charge of the trial at our NHS Trust hospital.
We decided that even if he was chosen for one of the 2-in-7 *control* arms of the trial, it had to be worth it simply for this extra monitoring, although he ended up on the arm of the trial taking Zolendronic acid (no huge side effects so far!). He's also receiving the regular hormone treatment which is the standard for advanced prostate cancer, so really the answer for us was a no brainer.
Bill is 58, has stage 4, advanced prostate cancer, which was asymptomatic and diagnosed purely by chance following a CT scan for a lymph gland infection in his neck which was not responding to antibiotics. A neck biopsy proved negative for cancer, but the CT scan showed signs of lymph node problems in his abdomen. Scintigraphy showed cancer has spread extensively to his bones, and PSA levels were way over 1000! Completely back to front, last of all the prostate biopsy confirmed the diagnosis, with a Gleason level of 9. With a list like this, predicatably we know that hormone treatment is a temporary measure, but so far his PSA is now down to 2.4, and he feels fine. We're being positive, - you can either spend your remaining time being miserable, or getting on with having some fun!
Hope this information is of some use for those considering the Stampede trial.
I was diagnosed 3 months ago whilst visiting family in Australia. My PSA was 377, I am stage 8 on the Gleeson scale with widespread secondary bone mets and enlarged lymph nodes in my abdomen. I am currently on hormone treatment (Zoladex) Having been told that it is only option available to me.
It was a great shock to be told of this diagnosis but have now got over this and with the help of a wonderfully supportive wife (who is a nurse) and family I am coping quite well so far. Have good days and bad days with the bone pain but in the main feel fine in myself at this stage. I was prescribed morphine for the pain at first but found this made me feel sick a lot of the time. After some research have now moved on to ibuprofen which I find has the same pain relief properties as the morphine without the sickness side affects. Was recently also prescribed casodex but again the side affects were not good so was taken off this medication. Anyone else had the same experiences?
Looks like you are in much the same boat as my other half - he was diagnosed just over three months ago, only difference is his PSA was over a 1000 and Gleason scale is 9. No other option but hormone treatment, but he was offered and is taking part in the STAMPEDE trial, and is now also taking Zolendronic acid every three weeks. We were given a prognosis of life expectancy of 2-5 years, 2 being if everything went wrong, and five or more of reasonable quality of life if things worked out with the treatment. It feels odd writing that down, because at the moment Bill is completely a-symptomatic, no bone pain at all, PSA is now down to 2.4, so I suppose we are lucky from that point of view.
Have you received good support from your Consultant? When Bill was first diagnosed the communication was, to say the least, appalling. Since he has been taking part in the trial though, we have a different consultant, and the medical staff have been superb.
Here's hoping your treatment goes well. xx
Hi, Sorry to hear you are now a member of the club that none of us wanted to join.
However I`m sure you will find lots of helpand support from all the friends who are on this site. I was diagnosed PCa with bony mets on te 16th Feb I was 74 and had
been suffering from plumbar and leg pain. The G.P. put me on Morphine and I
was taken to Hospital suffering from severe constipation after a week of tests they came along and told me I had inoperable PCa which had spread to my bones.
I was kicked out of Hospital on the 17th Feb completely shellshocked as no-one had ever mentioned the C word to me in 74 years. I was never given any
Gleason score or stageing as the cancer was diagnosed via a CT scan so I never received a biopsy.....My P.S.A. was 772.5, I started on Casodex and 3 monthly Zoladex implants my P.S.A. has reduced to 92.9 which is still very high.
I did not get a bone scan until 30th April and MRI scan on 04th May and did not receive confirmation of the results until 07th May Approx 10 weeks after original
diagnosis. I am disgusted the Medics did not discover Cancer until it was too late to do anything about it and feel my treatment (or Lack of) has been a shambles to say the least..
I have never been offered any trials and only discovered the name of a Clinical Nurse by attending a McMillan Cancer support meeting by chance.
I have had more help and support from McMillan and my local hospice than I have ever had from Medics.
Fortunately I`m not in too much pain at present but have no idea what will come in the future, However I wiil fight this disease for as long as I can.
Hope you get much better treatment than I`ve had. I would also suggest you take a look at the Prostate Cancer Website and apply for their TOOLKIT
which gives you a load of very useful information on Prostate Cancer.
Alex Munro (amunro36) Lincoln
Yes, what a club eh? Bill found out about his cancer through a CT scan originally - which scheduled because the ENT consultant he was seeing couldn't find out what had caused an infection to the lymph glands in his neck. Both they, and the consultant Bill now has, were brilliant. The guy in the middle, well, Bill is more reserved than I am, but I will say it...he was a shambles. No communication at all, and Bill's sister, who lectures in Nursing at a University hospital, advised us to make an official complaint. As it turned out, Bill started taking part in the trial almost immediately, so although we did make our thoughts known verbally to the hospital, we never went further to make the complaint official. Bill has now been transferred to the oncologist in charge of the trial, and he is brilliant. Because we said at his first appointment that we'd been told nothing at all of any use, he spent almost an hour making sure we knew everything you could possibly want (and not want) to know about Bill's personal circumstances.
Bill isn't at the stage (he says) where he needs any additional support right now, even though we were offered the services of , and asked if we wanted to be contacted by, the local cancer support services. What we are doing is looking at all the other things you have to plan for - financial, personal and so forth, which is so complicated.
So far, everyone is completely bemused when we mention he has cancer, and it isn't curable - we are so lucky that he is still very well right now. We know it won't last forever, but while it does, we will, like you battle this horrible disease with cheerfulness, optimism, and as much medication as they will allow Bill to take. :)
Julie (Shropshire/Powys border)
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