Good morning Simply Red and welcome to the site.
No you are not becoming paranoid, well only in the same way as the rest of us would under the same circumstances.
MRI scans do not show enough to stage a cancer but a biopsy would. Some men would have the kind of biopsy my husband had which didn't include dye etc but he had no other problems.
It looks as if your consultant is saying the cancer is contained within the prostate which is good news but something that they really do need to check so please don't let grim thoughts cloud your thinking.
Your husband has already been given hormone tablets and these will have been designed to shrink the tumour and they do work, although there is likely to be other treatments offered alongside this eventually, once the tests are completed.
Removing a prostate, even for a man without your husband's other health worries, isn't always the best move. They'll be some on here that will say they wouldn't change the decision they made because it all worked out well for them. They'll be others who regret the removal decision and would choose a different treatment option if they had their time over again.
We have men on here who started off with horrendously high PSA and Gleason scores and for whom treatment has extended their lives and allowed them (is allowing them in some cases) to watch their children grow up.
A few years ago that wouldn't have been possible. Prostate cancer treatments are evolving all the time, being constantly tweaked too. For instance, chemo is now offered at the start of some treatments which would never have happened previously. Chemo doesn't cure prostate cancer but used in conjunction with other treatments offers a better chance of success.
While you are waiting for your appointments to come through why don't you try and download The Toolkit from this site or ring one of the nurses to order a hard copy. They are available from Publications.
The nurses on here are also very approachable so if you are in a bit of a panic and want an early answer they can be reached during their hotline hours on 0800 074 8383.
Any questions regarding treatment (once you know what that is) please feel free to ask.
We all support each other because we are all going through (or have been through) the same stage you are at now.
The panicky feeling will eventually fade. Once treatment starts you will settle down and come to grips with it. At the moment it is all pie in the sky with ifs ands and maybees thrown into the mix as well.
Please try not to worry, I know that is easier said than done.
There will be others along to reassure you later.
The only other suggestion I would make is that you make a written list of questions for your next appointment and take paper and pen to write down the answers.
If the answers don't make sense to you ask for it to be repeated. Don't be fobbed off if something is worrying you. Ask until you understand.
It may be that treatment choice is limited for your husband given his other problems but there will be something for him. Just hang onto that thought.
Best Wishes
Sandra
*******
We can't control the winds - but we can adjust our sails |
User
morning
yes for sure its a tough time for you, with the extra health issues the worry of why didn't they check for this earlier, I think you need to find out the full answers as to why they will not operate, this may help you understand their decision
treatment they offer in place of removal can be just as effective, and I am sure they will monitor hubby
your world will be full of despair we have all been their, and will support you
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Good morning simply red
Welcome to the site, I'm the daughter of someone with prostrate cancer and fairly new to all of this too, You will get some very good advice from everyone on here,
The fact your husband cancer is contained in the prostate is very good news, and A Gleason score of 3+5=8 is better than 5+3=8 please try and look at all of these little positive things
The more experienced members will be of a much better help but I'm a good listener if you want to let of steam
Take care
Viv x
The only time you should look back is to see how far you have come
|
User
Hi
Don't see HT ( Hormone Therapy) as second best to surgery more see it as the best treatment taking staging age and other health issues into account.
Although no spread outside of prostate was shown they cant pick up microscopic cells which at G8 could well be there. That in time could have meant RT (Radio Therapy) and possibly HT on top of surgery.
Check my profile which shows among others that options other than surgery work very well.
Ray
User
Simply Red, welcome from me as well, I was diagnosed Feb 2015 and was told that I could not have a prostectomy as my prostate was too close to my rectum wall( apparently prostates are in different places in some of us) the danger would have been to break through and create more problems or not take enough of prostate out and leave microcells.
I have been on HT (24 months)and had RT. My PSA is now down to 0.01 and undetectable had another blood test today hopefully will be three in a row at 0.01.
I personally am glad that I did not have a RP but that is my view.
Run with the treatment and accept that your MDT will be giving you the best options for your circumstances.
Best wishes Chris/Woody
Life seems different upside down, take another viewpoint
User
Hi Simply Red
Some great advice and comments here. Every single one of us here knows how you are feeling, the shock, the panic, the worry. I agree with Lyn about the bone scan, it's belt and braces and I think most people are glad to have had it, it doesn't cause any issues as far as I know and is a good diagnostic tool. If the prostate cancer is contained in the capsule then it's good news considering what it could have been, especially with a Gleason 8. My own hubby has spread and a G score of 10 and has only had HT and a very old form of hormones called stillbestrol, which have worked fantastically well, he's still happily with us after 5 and a half years of treatment. If you took any two men here, with the same PSA and grading, you wouldn't necessarily get the same outcome. Genetics do play their part. Our lovely friend Trevor Boothe had a PSA around 13000, with spread and with many other conditions such as several heart attacks and a stroke and is still here enjoying life three years later.
I know saying, try not to worry is a waste of time, but honestly HT is the gold standard for treatment, it has some side effects as you will have been told, but it's so worth it to keep our men with us.
I wonder what course of action the MDT will suggest once all the results are in, please let us know.
Love
Devonmaid
User
Hello Simply Red and welcome from me too.
I'm just over 2 years since diagnosis and have had radio therapy and am on hormone therapy. I too had a bone scan alongdide 2 MRI scans. I didn't mind having these scans as I treated them as an opportunity to have a complete mot on my body! Fortunately they only showed local spread to the lymph nodes and seminal vesicle.
It is a scary time at this stage but once you know the results and the suggested path for treatment it settles down and you learn to adapt to the situation.
I'm enjoying life and although the thought of cancer is still with me, it doesn't dominate as much as it used to. I more or less live as I used to before diagnosis.
Wishing you both well for the times ahead.
John
User
Hi Simply Red love the name,
Yes waiting for those first set of results is very stressful we have all been there, you somehow wish that time would go faster which is exactly the opposite to how you feel after the results.
Although a Gleason 8 is high DMs husband is Gleason 10 and still here 5 years later , Siness Gleason 10 with extensive bone mets still here 3 years on. If you look up Dave Kirkhams thread Gleason 9 and 9 years on. I have only named a few but I promise you there are many others.
For ourselves Trevor was diagnosed 3 years ago with PSA of 13000 extensive mets we didn't have a biopsy so hence no Gleason score the bone scan told the whole story . Trevor has had hormone treatment and is still on it plus he is know on Abbiraterone. He also has had several heart attacks numerous stents and a stroke but today three years on he is out cutting the grass.
Bone scans are completely normal in a PCa diagnosis and most often reveal nothing untoward so don't worry to much of course I know you will.
If you click on individual avatars you will be able to read each persons bio and journey. This disease is very strange in how it presents and affects men each one is a unique case.
Hope this helps.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
Show Most Thanked Posts
User
Good morning Simply Red and welcome to the site.
No you are not becoming paranoid, well only in the same way as the rest of us would under the same circumstances.
MRI scans do not show enough to stage a cancer but a biopsy would. Some men would have the kind of biopsy my husband had which didn't include dye etc but he had no other problems.
It looks as if your consultant is saying the cancer is contained within the prostate which is good news but something that they really do need to check so please don't let grim thoughts cloud your thinking.
Your husband has already been given hormone tablets and these will have been designed to shrink the tumour and they do work, although there is likely to be other treatments offered alongside this eventually, once the tests are completed.
Removing a prostate, even for a man without your husband's other health worries, isn't always the best move. They'll be some on here that will say they wouldn't change the decision they made because it all worked out well for them. They'll be others who regret the removal decision and would choose a different treatment option if they had their time over again.
We have men on here who started off with horrendously high PSA and Gleason scores and for whom treatment has extended their lives and allowed them (is allowing them in some cases) to watch their children grow up.
A few years ago that wouldn't have been possible. Prostate cancer treatments are evolving all the time, being constantly tweaked too. For instance, chemo is now offered at the start of some treatments which would never have happened previously. Chemo doesn't cure prostate cancer but used in conjunction with other treatments offers a better chance of success.
While you are waiting for your appointments to come through why don't you try and download The Toolkit from this site or ring one of the nurses to order a hard copy. They are available from Publications.
The nurses on here are also very approachable so if you are in a bit of a panic and want an early answer they can be reached during their hotline hours on 0800 074 8383.
Any questions regarding treatment (once you know what that is) please feel free to ask.
We all support each other because we are all going through (or have been through) the same stage you are at now.
The panicky feeling will eventually fade. Once treatment starts you will settle down and come to grips with it. At the moment it is all pie in the sky with ifs ands and maybees thrown into the mix as well.
Please try not to worry, I know that is easier said than done.
There will be others along to reassure you later.
The only other suggestion I would make is that you make a written list of questions for your next appointment and take paper and pen to write down the answers.
If the answers don't make sense to you ask for it to be repeated. Don't be fobbed off if something is worrying you. Ask until you understand.
It may be that treatment choice is limited for your husband given his other problems but there will be something for him. Just hang onto that thought.
Best Wishes
Sandra
*******
We can't control the winds - but we can adjust our sails |
User
morning
yes for sure its a tough time for you, with the extra health issues the worry of why didn't they check for this earlier, I think you need to find out the full answers as to why they will not operate, this may help you understand their decision
treatment they offer in place of removal can be just as effective, and I am sure they will monitor hubby
your world will be full of despair we have all been their, and will support you
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Good morning simply red
Welcome to the site, I'm the daughter of someone with prostrate cancer and fairly new to all of this too, You will get some very good advice from everyone on here,
The fact your husband cancer is contained in the prostate is very good news, and A Gleason score of 3+5=8 is better than 5+3=8 please try and look at all of these little positive things
The more experienced members will be of a much better help but I'm a good listener if you want to let of steam
Take care
Viv x
The only time you should look back is to see how far you have come
|
User
Hi
Don't see HT ( Hormone Therapy) as second best to surgery more see it as the best treatment taking staging age and other health issues into account.
Although no spread outside of prostate was shown they cant pick up microscopic cells which at G8 could well be there. That in time could have meant RT (Radio Therapy) and possibly HT on top of surgery.
Check my profile which shows among others that options other than surgery work very well.
Ray
User
Hi there. I have been living with prostate cancer since February 2011. Although they told me it was non-aggressive, it took me a while to get my head around the fact that my body is playing host to a cancer! Friends have been very supportive and I soon decided that staying scared was not an option. In no time, I was back to being my old positive self. (I am 70.) I've been on hormone therapy (Zoladex) from the start although it took me ages to decide what course of action I should take. Apart from needing to pee more often than I would like, I am fine. I changed my dies, gave up red meat and discovered a liking for quorn. I started a new (2nd) course of hormone therapy last December and am peeing slightly less now so that's good news. The bad news is that I am no longer sexually active, but as I don't have a partner, it's really no big deal. I keep busy, writing up my blogs and that helps me feel in touch with the rest of the world. All my friends know about the prostate cancer, but we sort of of agreed not to talk about it although we often have a laugh when I have to suddenly disappear for a pee in the middle of...whatever. My late mother used to say, 'If you worry, you die, and if you don't worry you're gonna dies anyway so...why worry?' When I am not taking a leaf out of her book, I am taking my cue from Monty Python and...always looking on the bright side of life. Positive thinking can be heavy going sometimes...but always worth the effort. Think positive, BE positive, and let the negatives take a running jump. Good luck, we all need plenty of that. PS I often think the air pollution in London (where I live) is more of a threat then the prostate cancer.
User
rogertab, anyone that develops a liking for quorn needs help!!!
simplyred, the surgery is extremely long at 5 hours or more and therefore not suitable for some people with heart or breathing conditions that make general anaesthetic too dangerous. Poor mobility increases the risk of deep vein thrombosis as well. Surgical removal of the prostate can also have distressing and sometimes permanent side effects such as incontinence. We don't have all the information that was available to your multi-disciplinary team but I can sort of see why they have ruled out the surgery.
As Ray says, surgery is not the 'best' treatment - it depends on each person's circumstances and some people choose hormone treatment with or without radiotherapy (RT), or other treatments, so don't feel that your husband is getting second best. If all the results are fine, they may have him on hormones long enough to get the PSA down and then offer an additional treatment like brachy or RT - the hormones are already starving the cancer and shrinking it.
Also, don't read too much into the need for a bone scan. Some hospitals do this routinely for every man diagnosed with prostate cancer and even if that doesn't apply to your hospital they may simply want to reassure you that the back pain etc is nothing to do with his prostate (which it probably isn't - a contained prostate cancer wouldn't cause all the health problems you describe here)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Simply Red, welcome from me as well, I was diagnosed Feb 2015 and was told that I could not have a prostectomy as my prostate was too close to my rectum wall( apparently prostates are in different places in some of us) the danger would have been to break through and create more problems or not take enough of prostate out and leave microcells.
I have been on HT (24 months)and had RT. My PSA is now down to 0.01 and undetectable had another blood test today hopefully will be three in a row at 0.01.
I personally am glad that I did not have a RP but that is my view.
Run with the treatment and accept that your MDT will be giving you the best options for your circumstances.
Best wishes Chris/Woody
Life seems different upside down, take another viewpoint
User
Hi Simply Red
Some great advice and comments here. Every single one of us here knows how you are feeling, the shock, the panic, the worry. I agree with Lyn about the bone scan, it's belt and braces and I think most people are glad to have had it, it doesn't cause any issues as far as I know and is a good diagnostic tool. If the prostate cancer is contained in the capsule then it's good news considering what it could have been, especially with a Gleason 8. My own hubby has spread and a G score of 10 and has only had HT and a very old form of hormones called stillbestrol, which have worked fantastically well, he's still happily with us after 5 and a half years of treatment. If you took any two men here, with the same PSA and grading, you wouldn't necessarily get the same outcome. Genetics do play their part. Our lovely friend Trevor Boothe had a PSA around 13000, with spread and with many other conditions such as several heart attacks and a stroke and is still here enjoying life three years later.
I know saying, try not to worry is a waste of time, but honestly HT is the gold standard for treatment, it has some side effects as you will have been told, but it's so worth it to keep our men with us.
I wonder what course of action the MDT will suggest once all the results are in, please let us know.
Love
Devonmaid
User
Thank you Devonmaid
I feel so much better after reading all these posts
I'll post the bone scan results as soon as I get them
I'm so glad I found you all as its really helped me.
I now want my hubby to read all this positive feedback and I think he will also feel a little more reassured that there is life after diagnosis
Thanks again
Janice
User
Hello Simply Red and welcome from me too.
I'm just over 2 years since diagnosis and have had radio therapy and am on hormone therapy. I too had a bone scan alongdide 2 MRI scans. I didn't mind having these scans as I treated them as an opportunity to have a complete mot on my body! Fortunately they only showed local spread to the lymph nodes and seminal vesicle.
It is a scary time at this stage but once you know the results and the suggested path for treatment it settles down and you learn to adapt to the situation.
I'm enjoying life and although the thought of cancer is still with me, it doesn't dominate as much as it used to. I more or less live as I used to before diagnosis.
Wishing you both well for the times ahead.
John
User
Hi Simply Red love the name,
Yes waiting for those first set of results is very stressful we have all been there, you somehow wish that time would go faster which is exactly the opposite to how you feel after the results.
Although a Gleason 8 is high DMs husband is Gleason 10 and still here 5 years later , Siness Gleason 10 with extensive bone mets still here 3 years on. If you look up Dave Kirkhams thread Gleason 9 and 9 years on. I have only named a few but I promise you there are many others.
For ourselves Trevor was diagnosed 3 years ago with PSA of 13000 extensive mets we didn't have a biopsy so hence no Gleason score the bone scan told the whole story . Trevor has had hormone treatment and is still on it plus he is know on Abbiraterone. He also has had several heart attacks numerous stents and a stroke but today three years on he is out cutting the grass.
Bone scans are completely normal in a PCa diagnosis and most often reveal nothing untoward so don't worry to much of course I know you will.
If you click on individual avatars you will be able to read each persons bio and journey. This disease is very strange in how it presents and affects men each one is a unique case.
Hope this helps.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi
Thanks for your message, it really helps to read these
it's all a bit bewildering and new to us both
hubby will be glad to get the scan done on Tuesday. I just hope it's not another three weeks wait for the result. Clinics are only on a Wednesday .
Will let you know what happens
Thanks
User
Hi all,
I am new to all this, I was diagnosed on thursday 21st July, 15 cores taken in biopsi, 6 positive, 5 3+3=6 1 3+4=7 PSA 3.7 got to have bone scan is this normal? I am scared, I am sure we all feel that but how do you get through it, I am trying to be positive but it is hard,
Paul
User
Hello Paul and welcome to the site.
You have added your post to somebody else's and although there is no bar to that it might mean that not many members see it so it would be best to start your own conversation. That way you might get more response over a longer period.
Scare? I bet you are. As you say it was how most of us felt on diagnosis. It's only three days since you had it confirmed and I'm sure there are lots of negative thoughts running round your head. There doesn't need to be.
Your Gleason scores are pretty low as is your PSA. My husband's was 5.7 at the start and over 6 before he opted for treatment.
Some hospitals opt for a bone scan as a matter of course, others don't so please don't read anything sinister into that but accept that a bone scan can only benefit you since it can rule out any other problems.
Have any treatment options been offered yet or are they waiting for the result of the bone scan.
There are many treatments available now, from doing nothing at all apart from being monitored (Active Surveillance - which my husband had for a year before he made up his mind which way he wanted to go) to a full Radical Prostatectomy and all stages in between.
There are a set of leaflets on here called The Toolkit which you can download from publications or obtain a hard copy from one of the nurses if you ring them. They might help you form your questions for your next consultation.
Always write down your questions - and note the answers.
If you don't understand the answer ask for it to be repeated.
Take somebody with you as two pairs of ears are better than one.
Review all your options before plumping for one. A surgeon usually only talks about taking out the prostate, urology will talk about Radio therapy etc.
I don't know if you have a partner but try and make sure that if you do they are kept in the loop as it is very hard on us to be kept in the dark. Most of us would want to help our other halves in any way we can,including supporting you and giving you a bit of a kick if necessary!!
On this site, help and support is what we do best. Once you have a questions regarding a specific treatment please ask as somebody is bound to have personal experience of it.
The fact that your consultant says not to panic means he thinks you have time on your side.
Others will be along but as I say you might get quicker and more responses if you start again.
If nobody replies to a thread it tends to die so you want one of your own that you can keep open.
All the best
Sandra
********
We can't control the winds - but we can adjust our sails |
User
P
Welcome to the site nobody wants to be on.
Bone, CT and MRI scans post biopsy are fairly common, so do not read to much into it,the purpose of the scans is to check that the cancer has not spread and they are useful picking up any other health issues. Once the scans are all done your medical team will be able to give you a choice of treatments.
Your scores are on the Lower side, so be positive. The whole PCa journey is about waiting.
If you have not already done so download the toolkit from this site alot of reading but very useful.
Sometimes useful to start your own conversation as many of us have different issues, it can take a few hours for the moderators to release new conversations.
Thanks Chris
Added
Think J and I were replying at the same time.
Edited by member 24 Jul 2016 at 11:38
| Reason: Not specified
User
Hi, I too have just been diagnosed with prostate cancer and have been reading some of the posts on here, it is hard to believe there are so many in the same boat we can only try and help each other, I was diagnosed on Thursday 21st July, I had 15 cores taken in biopsi 6 were positive, 5 3+3=6 1 3+4=7 PSA 3.7 got to have bone scan, just seems nothing is happening, the doctor says don't panic but how do you not,
best wishes to all on this site
Paul
User
Thankyou for the reply and kind words, I did try to start my own conversation but it would not go on so I have probably repeated myself a few times, it is great that there is somewhere like this to help everybody, I am just trying to look at the positive things but am finding it hard to find any at the moment, best wishes to all
Paul
User
As Chris says Paul, new posts have to be seen by the moderator so they don't go on immediately. If you have tried a new conversation it will appear shortly. Once it's on replies are instant which is why it's quicker and better to have your own.
We can't control the winds - but we can adjust our sails |