hi, my name is steve, and ive just been diagnosed with a rare form of prostate cancer and also have a tumour growing on the outside of the prostate, i havnt had the full results back yet, as the hospital had to send the biopsy samples to a specialist in birmingham to have further tests done to determine what type of rare cancer it is, ive only just joined this group, as i was told about this site from a family friend, i dont really know much about rare prostate cancer as i thought there was only one form of cancer, so some info or advice from this group would be very helpfull, as my consultant doesnt seem to explain things very well.
Warm welcome to the club no one wants to join :(
Sorry to read what has brought you here but pleased your family friend mentioned us, pretty sure after a little while settling in you will really appreciate that nugget of info.
Prostate cancer is a bit out of our area but noticed you had no replies as yet and wanted to give you a few pointers so you get the best from the site.
There is a very active (and friendly) Prostate Group here (link) where you can get peer support about treatments, recovery and any drugs regimes you may be offered. There is also this extensive Prostate Information section.
Like most cancers there are many sub-types some more common than others and some of the more uncommon types of Prostate cancer don't cause your PSA level to rise to high levels which can lead to a bit of delay in diagnosis.
There is some background info about rare types of PC at ProstateCancerUK.Org you can check out. Hopefully you won't have to wait too long before you find out which type yours is and can research it and also see if any other members of the prostate group here have a similar diagnosis ?
When the Prostate Group window opens just select 'Join This Group' then 'Start a Discussion' posting an intro and asking any questions you may have - You will soon get some replies as it is a very active group.
Hope this is of some help to get you settled in here and get the support and reassurences you derserve.
Take care, G n' J
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Hi and welcome.
You have some pointers to appropriate bits of the site but there are always folk here 24/7 for support...be that info, reassurance, listen to a rant or even a bit of cheery silliness.
Sadly not every one in our health teams have brilliant people skills,or maybe they get so involved with their bit of the process they forget the effect on the whole person.
To be honest though, the experience of receiving the news often means lots of what else is said doesn't really register and questions fly out of your head.
It is early days, everyone will tell you that waiting... for appointments, in appointments, for results, for people to get in touch with other people...is a nightmare, but you will get through it.
You have made a good start coming here and as you get more information on your treatment program you will be able to focus on relevant info rather than the swathes of stuff out there which includes the good, the bad, the ugly, the unnecessarily scary and the just plain wrong.
...it is OK because unicorns can see you : )
thanx all for your replies, had a phone call from the hospital yeaterday, they have booked me in for a bone scan, next wednesday, and yes i havnt recieved any treatment yet as they are still waiting to confirm what type of cancer i have, been to the docs also yestyerday to get stronger pain relief, they gave me some morphine based tabs and oramorph liquid, which i was on when in hospital, after they put in the catheter, because i was bleeding quite alot, probably because im on warfarin, and i was in pain due to me spasming, not the best start to having my first catheter, its now just a waiting game to find out about the cancer and then the scan, ive tried going out on the mountain bike, it was dooable with two pairs of cycling shorts on and the saddle tilted forward a bit, luckily my sons only live 2 miles away, which is about my limit on the bike atm with this catheter in, ive tried walking it a few timews but my knees and the back of my legs seem to cramp up, ive had this problem before caused by the warfarin, my worst problem atm is being constipated due to the pain killers, its all a learning curve, and being new to all these ailments, its the not knowing what to expect next, cheers steve, but going down my local pub and chatting with friends is the best relief atm rather than staying in watching the bloody rubbish on day time tele, rather go out and be in pain than stay in and be in pain.
Hi Steve. My name is Dave.l know you think this is death sentence but it isn't. I was diagnosed in 2011. I have had lots of radio therapy hormone drugs and seriod I have even been treated on a fantastic machine called cyber knife. But it has failed so I am now on palitiv drugs. Really no problem I have a few tumers in my spine and I live with some slight pain. All I can say is keep very busy I volunteer for a cancer advocate charity I try and look after 4 people and just knowing these people makes me feel so good. You don't have to do that but do something. After this present drug fail I just have to go onto the next. Just find out as much as you can and get treated. If that falls onto the next. The jurney is not that bad best wishes Dave
ive had the bone scan, they also wanted to do an extra scan on my back, im going up to see urology today to hopefully get the results of the scan and also the results of the biopsy to see what type of rare cancer i have, and hopefully then they can start giving treatment, not holding my breath though as they have cancelled giving me my biopsy results the last three times because of some excuse or other, will see what happens today?
Good luck hope you make some progress today....waiting is really hard when everything seems urgent but best your team take the time they need to get things as right as they can.
it's not so much the waiting, it's the fact that my family are booking days off to go with me, and then to find out it's cancelled again, there loosing money and patience, and I don't blame them.
had the results today, it's a rare form of very aggressive cancer, they told me the name but I can't remember it, also the tumour on my prostate has grown, they've started me on hormone tabs, then in two weeks it will be via an injection, then it will be chemotherapy treatment, they said they would be basically throwing everything at it they could, and then see how my body responds, doesn't look good for a nice exmas dinner probably be loosing my appetite lol
Good luck...sounds like you will be playing with whole band!
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