Hello Gary and welcome from me too.
Sorry you've had to join us but glad that's it's us you've turned to.
Diagnosis of PC is a massive shock, probably one you weren't even considering even if you were having bladder problems, so when you hear those dreaded words fear drives straight forward thinking right out of the window.
Firstly, don't panic. There are many and varied options out there.
As Mo says there are a few men on here who have been in your position and they continue to get on with their lives and adjust as necessary.
Your doctors are on the ball but you can help yourself by looking at the Toolkit. At the very least it will help you with information when forming questions to ask at the next appointment.
Always take a notebook and pen, and preferably somebody else with you. You will never remember all the answers otherwise, also - if you don't write them down to take with you you'll kick yourself on the journey home when you remember something you meant to ask.
As has already been said. We are here for you. No question is silly or selfish. If it's something important to you then it's something members will want to reassure you about and answer you on.
Where you are now is a road that everyone, to some degree at least, has travelled. We won't all have the spread but we've all experienced the fear when first diagnosed, so we do know how you feel.
I'm glad you've found us. Keep in touch with us. We're good with the shoulder props!!
We can't control the winds - but we can adjust our sails |
User
Afternoon Gary and welcome to the club no one in their right mind would want to join....I'm 51, T2c, G6 and slated for surgery at some point over the next 6-8 weeks.... There's lot of good folks on here, and download the toolkit, lots of info in there which will help to lift the fog a little....the only pieces of advice I can give is give yourself time to take it all in and take someone with you to every appointment
Duncan
User
Gary
I am so sorry you find yourself here but welcome you to our band of Men with this disease and us Women who do our best to support them,
You say you are going to your doctor to discuss chemo on top of the HT, this is probaby a positive thing athough it may not seem like it to you now.
In the limited information you have given you could try looking at a few profiles on here look on the members tab and search the user name irun your histology is very similar to his from what I can see, He has also had early chemo treatment and has achieved so much he is quite the inspiration you may need just now. Also check out SiNess for all the same reasons.Si is a great friend of mine and is always open to discussing the potential merits of early chemo.
As Chris says you can ask absolutely anything here there are no hidden agendas or taboo subjects.
I wish you all the very best
xx
Mo
User
Hi chris ,
Hospital said that surgery wouldn't cure the cancer as it's spread so offered chemo . I have a bone scan on Thursday
It's all happened so quick
Thank you for advice
User
Hi Gary,
I was really naive until I found this forum, it's really helped me understand the results I had. You'll receive a lot of support and wisdom from people on here and there isn't a silly question to ask. Whatever you want to know someone will probably have the answer or be able to point you in the right direction.
Best wishes
Arthur
User
Hi Gary,
I'm also posting to add my support. As others have said, it is so hard to take in after diagnosis, it's like having your world turned upside down and everything becomes uncetain. That is normal to feel like that because of the shock. When you feel more settled, it is a good idea to educate yourself as much as you can regarding the disease and options, the PCUK publications are a great start and will stand you in better stead of having informed decisions with your medical team. Recent research has suggested HT with early chemo depending on the spread of the disease is very beneficial instead of leaving chemo til later, so sounds like your onco is up to speed with that. Many men here have been offered clinical trials to test new treatments or combinations of treatment, there are lots of options. One of the men in my local PCa support group was diagnosed with advanced disease and is still here ten years on. Do keep posting, there is always someone who will respond !
Best wishes, Fiona.
User
Hi Gary
Welcome to the forum. You have done the right thing in joining the forum as there are many wonderful and kind people here. Although it is a shame that it is PCa that has brought everyone together.
I haven't had to undergo chemo or hormone therapy so I am not qualified to comment on those. However, there are many on the forum that do have experience and will no doubt come forward.
I just wanted you to know you are not alone. One thing I do know from experience is the upset and shock you feel when told you have PCa.
Wishing you all the best.
User
Hi Gary, I am 50 diagnosed a year ago T4 Gleson 9. I am on hormones and had chemo and radiotherapy afterwards, yes we are all in a crap place but there is plenty of life to be lived and the treatment to reduce effects of cancer have been ok in the main, please don't dispair, lots of us here ready to help you when you need us(or even if!) .
Make sure you write down any questions that you have for the doc in advance and their responses as it's hard to think straight at times. Ask all the why are you doing this and why not that and what if and when etc etc.
Our thoughts are with you.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi Gary,
Just want to offer my support. I am 6 months from my prostate removal. I was T3 Gleason 7.
Gather as much information as you can, listen to the advice and make your decisions after you are armed with all the information. The tool kit and the prostate cancer nurse advisors are a great resource. Don't be afraid to ask questions. Good luck with this undulating journey.
Paul
THE CHILD HAS GROWN, THE DREAM HAS GONE |
User
Best of luck with the results Gary
Bri
User
Good luck in advance Gary for the results on the 6th. ~Hope they are encouraging for you and your family
All the best
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi Gary,
Thinking of you and keeping fingers crossed for your results
Louise x
User
Gary
Don't know about winning the first round go for a KO!
Great news, best wishes
Arthur
User
I'm pretty sure you are entitled to ask for a second opinion and I don't see why your scans should be refused you. The only fly in the ointment I can see is would it all be organised for 18th October.
I also wonder whether (even though it is private) you will still need a referral letter from your consultant.
If you are happy to pay for a private appointment, then I would ring your consultant's secretary and ask what the procedure is for obtaining the scans (and a referral letter if that's necessary)
*******
We can't control the winds - but we can adjust our sails |
User
I think you are extremely rare. Chemo is usually given to men with incurable PCa, 35 sessions of RT is a curative treatment plan usually only offered to men with a chance of cure so to be offered both is odd. It might be that the RT was being offered as part of a trial in which case a second opinion is not necessarily going to help as another hospital may not have the same trial going, and private health can't often buy men places on trials.
It might be more useful to clarify why you were offered both - what do they think the benefit would be to you of having a curative treatment after chemo? If it is part of a trial, a conversation with the trial nurses might be more helpful than the horrible specialist :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Congratulations on you baby and good luck for the future.
barbara
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User
Hello Gary
Lots of people will be along to help you and support you . It can be quiet over the weekend . Ask anything you want that is in your head and someone will be able to help you I promise .
I am 48 , T4 , Gleason 9 , Lymph spread , 12 weeks post radical - prostatectomy . In the same boat as you that's leaking a bit mate . Have they offered RP or is it now too late for that ? Has Chemo been offered already . Let us all know how you get on and good luck
Chris
User
Afternoon Gary and welcome to the club no one in their right mind would want to join....I'm 51, T2c, G6 and slated for surgery at some point over the next 6-8 weeks.... There's lot of good folks on here, and download the toolkit, lots of info in there which will help to lift the fog a little....the only pieces of advice I can give is give yourself time to take it all in and take someone with you to every appointment
Duncan
User
Gary
I am so sorry you find yourself here but welcome you to our band of Men with this disease and us Women who do our best to support them,
You say you are going to your doctor to discuss chemo on top of the HT, this is probaby a positive thing athough it may not seem like it to you now.
In the limited information you have given you could try looking at a few profiles on here look on the members tab and search the user name irun your histology is very similar to his from what I can see, He has also had early chemo treatment and has achieved so much he is quite the inspiration you may need just now. Also check out SiNess for all the same reasons.Si is a great friend of mine and is always open to discussing the potential merits of early chemo.
As Chris says you can ask absolutely anything here there are no hidden agendas or taboo subjects.
I wish you all the very best
xx
Mo
User
Hi chris ,
Hospital said that surgery wouldn't cure the cancer as it's spread so offered chemo . I have a bone scan on Thursday
It's all happened so quick
Thank you for advice
User
Thanks for the messages . I forgot to say psa was 20 in march and came down to 18 .
Will update later I the week
One thing . Getting up to use the toilet a lot at night .. One of the reasons I went to the g.p and have ended up finding the dreaded c
Any help or tips on toilet habits given tamsulisin
User
Hi Gary
Yes im a relative newbie on here also despite having travelled so far . Ive read on the toolkit that surgery is not an option for locally advanced prostate cancer normally . The publications on here are awesome and you really should take the time to plough through them . If you look on the information banner at the top of the home page and then click publications , you will find the Prostate Cancer UK Toolkit. Quite a lot of info but it all becomes clear "ish" if you take the time .
We can all help you find the path
Best Wishes Chris
User
Hello Gary and welcome from me too.
Sorry you've had to join us but glad that's it's us you've turned to.
Diagnosis of PC is a massive shock, probably one you weren't even considering even if you were having bladder problems, so when you hear those dreaded words fear drives straight forward thinking right out of the window.
Firstly, don't panic. There are many and varied options out there.
As Mo says there are a few men on here who have been in your position and they continue to get on with their lives and adjust as necessary.
Your doctors are on the ball but you can help yourself by looking at the Toolkit. At the very least it will help you with information when forming questions to ask at the next appointment.
Always take a notebook and pen, and preferably somebody else with you. You will never remember all the answers otherwise, also - if you don't write them down to take with you you'll kick yourself on the journey home when you remember something you meant to ask.
As has already been said. We are here for you. No question is silly or selfish. If it's something important to you then it's something members will want to reassure you about and answer you on.
Where you are now is a road that everyone, to some degree at least, has travelled. We won't all have the spread but we've all experienced the fear when first diagnosed, so we do know how you feel.
I'm glad you've found us. Keep in touch with us. We're good with the shoulder props!!
We can't control the winds - but we can adjust our sails |
User
Hi Gary,
I was really naive until I found this forum, it's really helped me understand the results I had. You'll receive a lot of support and wisdom from people on here and there isn't a silly question to ask. Whatever you want to know someone will probably have the answer or be able to point you in the right direction.
Best wishes
Arthur
User
Hi Gary,
I'm also posting to add my support. As others have said, it is so hard to take in after diagnosis, it's like having your world turned upside down and everything becomes uncetain. That is normal to feel like that because of the shock. When you feel more settled, it is a good idea to educate yourself as much as you can regarding the disease and options, the PCUK publications are a great start and will stand you in better stead of having informed decisions with your medical team. Recent research has suggested HT with early chemo depending on the spread of the disease is very beneficial instead of leaving chemo til later, so sounds like your onco is up to speed with that. Many men here have been offered clinical trials to test new treatments or combinations of treatment, there are lots of options. One of the men in my local PCa support group was diagnosed with advanced disease and is still here ten years on. Do keep posting, there is always someone who will respond !
Best wishes, Fiona.
User
Hi Gary
Just wanted to say hello. I also empathise with you, as with many others on here do, as to that first diagnosis fear. It truly takes all the stuffing out of you!!
It is a roller coaster of a journey but try not to dwell too long on the downhills but enjoy the quality high times.
As you become more knowledgeable of the disease you will see there are many pathways of treatments. Often as one pathway closes another one will open.
Never give up hope gary.
Lesley
User
Hi Gary
Welcome to the forum. You have done the right thing in joining the forum as there are many wonderful and kind people here. Although it is a shame that it is PCa that has brought everyone together.
I haven't had to undergo chemo or hormone therapy so I am not qualified to comment on those. However, there are many on the forum that do have experience and will no doubt come forward.
I just wanted you to know you are not alone. One thing I do know from experience is the upset and shock you feel when told you have PCa.
Wishing you all the best.
User
Hi Gary, I am 50 diagnosed a year ago T4 Gleson 9. I am on hormones and had chemo and radiotherapy afterwards, yes we are all in a crap place but there is plenty of life to be lived and the treatment to reduce effects of cancer have been ok in the main, please don't dispair, lots of us here ready to help you when you need us(or even if!) .
Make sure you write down any questions that you have for the doc in advance and their responses as it's hard to think straight at times. Ask all the why are you doing this and why not that and what if and when etc etc.
Our thoughts are with you.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Hi Gary,
Just want to offer my support. I am 6 months from my prostate removal. I was T3 Gleason 7.
Gather as much information as you can, listen to the advice and make your decisions after you are armed with all the information. The tool kit and the prostate cancer nurse advisors are a great resource. Don't be afraid to ask questions. Good luck with this undulating journey.
Paul
THE CHILD HAS GROWN, THE DREAM HAS GONE |
User
Hi
As always on this site some grest advice.
I think it's still early days and so difficult to start making comparisons to the dx of others. You are still waiting for a bone scan. Hopefully this will be clear. This will help the medics to determine your best way forward.
At this stage it may still be locally advanced.
If there is no spread to the bone or any identifiable spread beyond the nodes in the pelvic region you may still be in the cure camp.
Keep us updated with your results
Bri
User
Thank you for all your replied .
a quick update i had my bone scan on Thursday .fingers and toes crossed for the results.
My girlfriend and i and parents ,the whole tribe ...met the oncologist on Tuesday and explained a few things to me .you can read alot on the internet but nothing like speaking to a doctor ..
It would have been better if i had seem her after my results of the bone scan as im still not 100% sure of my situation .
she talked about External bean radiotherapy..it the cancer has only spread to a small area outside my prostate .from what they can see on the MRI its only in a few nodes .
Feeling good and back to work ....and booked a holiday to the sun.
I have my hormone tablets been on them for a week and go on the 6th october for 1st injection and Results of my bone scan
will keep you posted ..
gary
User
Best of luck with the results Gary
Bri
User
As a 47 year old at diagnosis and having had surgery, radiotherapy and now hormones, nearly six years later, I say, stick with us friend. We are all here to support each other and you will find no shortage of that here.
Keep in there and keep posting.
Bazza
User
Hi Gary,
Like you I am new to this Pca thing but beginning to learn quickly about it and how great the forum and people are. I was dx in May and had first two injections and about the start early chemo next week. I am to new to offer much advise but as others have said, take someone with you to appointment and/or as I did, record the consultation on your phone. I found listening to it a few times really helped. Everyone is different but found out that talking about it to someone like your girlfriend or family does help. I've only dx 4 months but it seems like a lifetime and sometimes can't remember what it was like not to have known, so talking about it means that sometimes your not talking about it or even thinking about it. Once you get the full picture also helps and gets rid of the unknown knowns and can focus you.
All the best with the next's scans and results and keep in touch with the site!
User
Good luck in advance Gary for the results on the 6th. ~Hope they are encouraging for you and your family
All the best
Sandra
We can't control the winds - but we can adjust our sails |