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)
Hi i was diagnosed in SEpt. 2007. Psa was 1252 i'm still going now so take heart you young guys as i'm 78. I've been on the only thing that would slow things down i.e Zoladex psa went down to 21 last year but then went up to 61 at xmas taking casodex as well now and my psa is 25. I've been ok up till now but I'm getting some bad days and i've even gone off my Guinness (whats the world coming to). Still take every day as it comes and be positive.Good Luck to all.
my partner was diagnosed age 61 with stage 3 psa 44. locally advanced affecting the seminal vesicles. he is in the STAMPEDE trial and drew the chemotharpy and zometa arm of the trial. he has now completed chemo and radiotharpy and has monthly zometa plus 3 monthly prostap. he is doing fine just very tired and stamina has not really returned since his treatment. Like you he had very few symptoms and biopsies and scans were clear. It has been worth being part of the trial as he is monitored so closely but at times the treatment has been exhausting. my partners cancer was gleason 9 so aggressive and so we felt it best to thow all we were offered at it. So far so good and aat our last consultation they were hoping he is cured. Good luck with your treatment . There is no reason why you should not do just as well.
many thanks for the very encouraging reply. I realise all cases are different, but your partner's situation sounds remarkably similar to my own.
Am now waiting to find out which 'arm' has been selected for me.
Glad to hear things seem to be going well, despite the tiredness.
Paul - welcome to the club nobody wants to join. I too have PCa T3 M2N1 G9
I wish I had known about the STAMPEAD trial, knowing what i know now I would have jumped at the chance if I had known. I'm annoyed i wasn't told.
As others have said the extra close monitoring is well worth happening; having to wait between appointment for 3 months in my case is just too long - you wonder how you are doing.
The one thing to remember about PCa is that it progresses relatively slowly. So don't panic - you have time to consider your options, so my advise is learn as much as you can, from MacMillan, Prostate-Cancer-Charity, and CancerresearchUK websites . Information is power.
My Husband was diagnosed 3 months ago after a rectal exam because he was having severe back pain and trouble with urinating. He had also lost a lot of weight but because he had always had variable weight I wasn't too concerned. He did not tell me he had trouble urinating and I thought it was arthritis from his employment.
The blood test showed 271 3 months ago and after consultation and a biopsy the Gleason score was 8- agressive and the CT scan showed cancer at the advanced stage and in his bones. All samples contained the cancer. The Ct scan also showed sever arthritis in his lower back.
He stopped work completely and the consultants, nurses and the macmillan nurses have been fantastic both on a medical level and a personal and professional level and gave us detailed information about the treatment options. We also get regular visits from the district nurse team and they have been very helpful in recommending aids. He was placed on oral hormone therapy immediately and we are on 3 monthly injections and pain killers. We have been told that he will have these indefinitely.
He was given the option of a chemo trial and might still be given that option. He turned it down because while he is on the trial, they will be unable to remove the catheter which is a bit of an incumbrance.
He was offered an MRI but refused to do it. I did everything I could to persuade him it was in his best interests and he may still have it. It was recommended because it would enable them to see where the cancer is in his back and where the arthritis is.
He tried 2 really strong painkillers but because of the side effects went back to standard ones . He has now put on a stone in weight and has some good days and some bad days. He doesn't sleep well however has improved and does not have as much pain. His energy levels are poor and generally can't do a lot and if he does sleeps all the next day. Keep a positive attitude and make plans.
The best I can suggest is that it is a waiting game and it takes time for the treatment to take effect.
Just sleep, eat, rest, take the medication and yes meet people there are a number of support groups around on the prostate cancer web site and if you can get hold of the pamphlet which we were given by the hospital it will tell you all you need to know. Hope this helps
It was a great shock for my husband to be diagnosed with this illness, also for me, our children and grandchildren to know how ill he is. However since he started the hormone therapy he has improved so much. The postitive is we can now "live" with this awful illness. Kelvin says he would love to be given an indication of time scale so he can plan what is ahead, this I understand. However as a nurse I know that is impossible, but understand his thinking. I though feel that a timescale would in some ways make "living for the day" impossible. What happens when the designated time comes closer? Do you then accept it and give up? Yes we could get angry that he was not diagnosed at a stage that could have cured him. Women get the opportunity for scanning for breast cancer, there is plenty of information re testicular cancer, why is it not the norm to scan for Prostate cancer, especially in men who have trouble urinating?????? However getting angry and being bitter gets you know where. We have to accept it has happened and enjoy every day. Sylvia
I wont bore you with all my health problems but if you wish you can read my profile.
I was equally devastated when told I was suffering from Prostate Cancer with bony mets which was widespread and they could do nothing to help me. This was on
16th feb 2010. I eventually got a bone scan on 28th April and MRI scan on 04th May. My P.S.A. was772.5. I was 74 and in all that time the Cancer word had never been uttered in relation to my health. I had problems urinating in 2003My G.P.
sent me to see a Consultant Urologist...he said I had a Benign Enlarged Prostate
and prescribed a drug Alfuzosin said if I took a tablet each morning I would be able to live a normal life. I receievd no further checks. Last Oct I had severe Lumbar pain and ended up taking Morphine. I enterd hospital on the 07th Feb
2010 and they came along and told me I had advanced Prostate Cancer which
is widespread and there was nothing they can do except commence HT
Casodex & Zoladex implants... so far I have had 3 x 3 monthly implants and
my P.S.A. is now 89 which is still very high but reducing slowly.
I am angry and bitter that the Medics did not detect my Cancer in time to save me and If I had n`t been taken to hospital suffering from Constipation I would still be walking around with undetected P Ca today!
The reason they don`t test men over a certain age is partly due to the Cost
involved and also because they are not 100% certain that P.S.A tests are
accurate in detecting whether Cancer is present.
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