Hi Sally,
Firstly i am so sorry to see your results, and i agree totally with everything Julie posted. Everybody on the site would have read your post and you will be in everyone's thoughts.
Every time somebody new comes along with a diagnosis like your husbands brings the memory of the early days flooding back, i had a PSA of 3.6 then 4.6 not to bad i thought, had my biopsy then got a phone call Christmas eve telling me i had a gleason 9 and scans are all booked for January 2nd. I spent the whole day at the hospital having three types of scans to then get a phone call to tell me i need to get back to the hospital to see a surgeon as the cancer had destroyed my hip and was about to break and was in most bones in my torso.
It was an absolute nightmare what the hell was going on, but trust me it does get better (if that's the right word) once that initial shock goes. That was nearly four years ago i am still working full time, treatment so far though tough at times has worked well, i have just had a full year with no treatment and thoroughly enjoyed it.
If i can offer any advice get a good team around you, get an oncologist you are happy with and have confidence in, a Macmillan nurse, mine is great and also look into your local hospice they offer some great services my wife get massages and Reiki sessions all free.
I see you are being offered early chemo, i had this 4 years ago and i am convinced it was this that had the biggest impact on my cancer, so please comeback with any questions and we will do our best to help.
If you read my thread somewhere on there is a picture of my scans at diagnosis, they was bad and four years on i am planning a Sahara trek for my local hospice at this moment in time my wife is still rolling around the floor with laughter and now calls me "Florence of Arabia" and is quick to point out that there will be no pubs and taxis available on route.
So as you can see its not all doom and gloom there are loads of treatments available
I wish you all the best
Si
Don't deny the diagnosis; try to defy the verdict |
User
I may stand corrected but my diagnosis is T4n1m1a which I was told that means my cancer has spread to distant lymph nodes Ie outside pelvic area. I do not ((didn't anyway!) have any signs in my bones or other tissue but just lymphs in various places around my body. The good news is that docetaxl early and ht got all lymphs back to an estimated pre cancer size ie 3.5cm back to 0.5 cm so it worked. I know that is where it will come back in due course but at least for now it sort of puts me back to square 1 .
As an aside, I compare early chemo theory to a lawn of grass. In the old days they used to wait until weeds had taken over the lawn before weed killing (docetaxl) but I guess that meant that when they started growing again they were everywhere and hard to fight with less time to try other options whereas now they weed kill on the first sign of weeds ie a smaller area, so when it comes back it will take longer to really cover the lawn and they have more time to do other stuff whilst ones body may still be able to tolerate it. Silly I know but analogies have always been my way of working stuff out.
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
When are the next bloods being done sallyyy? Hang in there, I think and hope you will get a boost when you see the next PSA score.
User
So tough for you both Sallyyy - really sorry for all you are going through but as others have said there should be good news on the next PSA reading. Do hope so. And good to hear that the chemo will start soon. It does help to feel that you are actively fighting back. Will be thinking of you both. Hope you are getting lots of support from professionals and family/friends. Good luck. Eleanor
User
Hi Sallyyy,
Well I suppose not unexpected but just as hard to hear and come to terms with. I know that feeling because we have been there and it sucks doesn't it.
The only thing I can say is this disease is so unpredictable and so unique to each and every man and it took me a long time to understand and realise that if there is one thing that you know about pca it's that you never really know anything.
Ok so tough times ahead we haven't had chemo and probably not likely to with Trevor's other health issues but lots of guys and there OH have said it is not nearly as bad as they thought. Reports are that it is giving really good results when started early in diagnosis.
None of us on here can change your results but hopefully some of our stories will give you hope and we are all here for when you need to talk. On the old site there was stats on how many people read each post and trust me I can guarantee that many people read your posts but don't feel they can reply for various reasons, I was always amazed at how many read my posts.
The old saying only those walking in your shoes can truly understand well on this forum we are all walking in your shoes.
As I said this is such a strange disease and I am just about to update on our story I can vividly remember being told in the beginning to have hope if I had been able to laugh at that point I would have laughed in there faces and here we are what do you know they were right and I was wrong.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Hi Sallyyy,
sorry about OH's dx. I was Gleason 9 T3n0m1 with PSA 294. I started HT and then it was suggested early chemo, which looks like your husbands route. This appears to be the best option and although the thought of chemo is very scary, once you have sorted out what treatment and timescales, I found it easier to focus on what needs done.
You will find all the help you need on the site with lots of experience.
Good luck ahead.
steven
User
Hi Sally,
Just looked at my last blood test, the range for white cells is 3 - 10 mine is currently 8,65 but was a lot lower during chemo , your white cells do get a good kicking during chemo but they give you an injection to boost your white cells the day after chemo. my wife loved giving me the injection.
i dont think you will have a problem
Si
Don't deny the diagnosis; try to defy the verdict |
User
Hi Sallyyy, sorry to hear how much it has all spread, as I said before, mine is only in my lymphs but I am T4 and 2 years on, doing ok physically ( mentally is still a battle to be honest), I had early chemo and the results were great.
If you have the injections just be aware that hubby may not react well to them, I didn't and ended up in a&e then admitted to hospital but that was because they gave me too much chemo. As they will be aware of hubbys low blood count they will probably reduce the chemo dose which is what they did to me for the second and subsequent sessions.
We are all rooting for you both, make sure you get some " me time" as selfish as that sounds as you need a rest from it all if you can.
Take care
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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When are the next bloods being done sallyyy? Hang in there, I think and hope you will get a boost when you see the next PSA score.
User
So tough for you both Sallyyy - really sorry for all you are going through but as others have said there should be good news on the next PSA reading. Do hope so. And good to hear that the chemo will start soon. It does help to feel that you are actively fighting back. Will be thinking of you both. Hope you are getting lots of support from professionals and family/friends. Good luck. Eleanor
User
Hi Sallyyy,
Well I suppose not unexpected but just as hard to hear and come to terms with. I know that feeling because we have been there and it sucks doesn't it.
The only thing I can say is this disease is so unpredictable and so unique to each and every man and it took me a long time to understand and realise that if there is one thing that you know about pca it's that you never really know anything.
Ok so tough times ahead we haven't had chemo and probably not likely to with Trevor's other health issues but lots of guys and there OH have said it is not nearly as bad as they thought. Reports are that it is giving really good results when started early in diagnosis.
None of us on here can change your results but hopefully some of our stories will give you hope and we are all here for when you need to talk. On the old site there was stats on how many people read each post and trust me I can guarantee that many people read your posts but don't feel they can reply for various reasons, I was always amazed at how many read my posts.
The old saying only those walking in your shoes can truly understand well on this forum we are all walking in your shoes.
As I said this is such a strange disease and I am just about to update on our story I can vividly remember being told in the beginning to have hope if I had been able to laugh at that point I would have laughed in there faces and here we are what do you know they were right and I was wrong.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
The next bloods are being fine in two weeks - so s month after the start of hormone treatment
Thank you very much for all the supportive messages. As much as I was expecting today's results it's still feels such a shock.
Edited by member 01 Nov 2016 at 22:17
| Reason: Not specified
User
Hi Sallyyy,
sorry about OH's dx. I was Gleason 9 T3n0m1 with PSA 294. I started HT and then it was suggested early chemo, which looks like your husbands route. This appears to be the best option and although the thought of chemo is very scary, once you have sorted out what treatment and timescales, I found it easier to focus on what needs done.
You will find all the help you need on the site with lots of experience.
Good luck ahead.
steven
User
Hi Sally,
Firstly i am so sorry to see your results, and i agree totally with everything Julie posted. Everybody on the site would have read your post and you will be in everyone's thoughts.
Every time somebody new comes along with a diagnosis like your husbands brings the memory of the early days flooding back, i had a PSA of 3.6 then 4.6 not to bad i thought, had my biopsy then got a phone call Christmas eve telling me i had a gleason 9 and scans are all booked for January 2nd. I spent the whole day at the hospital having three types of scans to then get a phone call to tell me i need to get back to the hospital to see a surgeon as the cancer had destroyed my hip and was about to break and was in most bones in my torso.
It was an absolute nightmare what the hell was going on, but trust me it does get better (if that's the right word) once that initial shock goes. That was nearly four years ago i am still working full time, treatment so far though tough at times has worked well, i have just had a full year with no treatment and thoroughly enjoyed it.
If i can offer any advice get a good team around you, get an oncologist you are happy with and have confidence in, a Macmillan nurse, mine is great and also look into your local hospice they offer some great services my wife get massages and Reiki sessions all free.
I see you are being offered early chemo, i had this 4 years ago and i am convinced it was this that had the biggest impact on my cancer, so please comeback with any questions and we will do our best to help.
If you read my thread somewhere on there is a picture of my scans at diagnosis, they was bad and four years on i am planning a Sahara trek for my local hospice at this moment in time my wife is still rolling around the floor with laughter and now calls me "Florence of Arabia" and is quick to point out that there will be no pubs and taxis available on route.
So as you can see its not all doom and gloom there are loads of treatments available
I wish you all the best
Si
Don't deny the diagnosis; try to defy the verdict |
User
Thank you Si for the positive message.
The nurse confirmed the following this morning :
T3b N1 M1
Re chemo - I do have a question. My husband has always had a low white cell count. Not significant in itself and never caused him any problems (it is 3.6 and normal range is 4-11)
I am just concerned that they will say he can't have chemo. I did ask the nurse this morning but she said we would need two weeks for next appointment with Dr to discuss it then.
User
Hi Sally,
Just looked at my last blood test, the range for white cells is 3 - 10 mine is currently 8,65 but was a lot lower during chemo , your white cells do get a good kicking during chemo but they give you an injection to boost your white cells the day after chemo. my wife loved giving me the injection.
i dont think you will have a problem
Si
Don't deny the diagnosis; try to defy the verdict |
User
Thank you Si .
I'd better start practising !!
User
Hi Sallyyy, sorry to hear how much it has all spread, as I said before, mine is only in my lymphs but I am T4 and 2 years on, doing ok physically ( mentally is still a battle to be honest), I had early chemo and the results were great.
If you have the injections just be aware that hubby may not react well to them, I didn't and ended up in a&e then admitted to hospital but that was because they gave me too much chemo. As they will be aware of hubbys low blood count they will probably reduce the chemo dose which is what they did to me for the second and subsequent sessions.
We are all rooting for you both, make sure you get some " me time" as selfish as that sounds as you need a rest from it all if you can.
Take care
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
Thank you Kev for the extra info re the chemo and lower blood count.
I'm still quite confused by the T3 / T4 differentiation. As yours thankfully hadn't spread to the bones I would expect it to be the other way round (so you be T3 if that makes sense.)
User
T3 / T4 tells us how far it has spread in the area of the prostate - ie it is just breaking out (T3) or it has gone to the bladder, bowel or nearby lymph nodes (T4). The N and M indicates where the mets are (if any) so someone could be T3 N1 M1 (the original tumour is still fairly close to the gland but some cells have escaped and settled in bone, organs or distant lymph nodes) or T4 NoMo (it has spread significantly in the pelvic region but there are no signs of bone,organ or lymphatic system involvement). There are of course other variations - T4 with M1 but N0
As far as I can make out, my father-in-law must have gone from T2 NOMO to T4 NOM1 without anyone realising, he then died very suddenly because the tumour went to his kidneys & liver. Outcomes for soft organ mets are often far worse than for bone mets.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thank you got the explanation Lyn.
User
Sorry to come back with another question that will sound exactly the same. Just trying to get things clear in my head. Lyn mentioned above that T4 includes spread to nearby lymph nodes which my husband has (but he doesn't have spread to bowel or bladder.)
So instead of T3b N1 M1 should he not be : T4 N1 M1 ?
User
I may stand corrected but my diagnosis is T4n1m1a which I was told that means my cancer has spread to distant lymph nodes Ie outside pelvic area. I do not ((didn't anyway!) have any signs in my bones or other tissue but just lymphs in various places around my body. The good news is that docetaxl early and ht got all lymphs back to an estimated pre cancer size ie 3.5cm back to 0.5 cm so it worked. I know that is where it will come back in due course but at least for now it sort of puts me back to square 1 .
As an aside, I compare early chemo theory to a lawn of grass. In the old days they used to wait until weeds had taken over the lawn before weed killing (docetaxl) but I guess that meant that when they started growing again they were everywhere and hard to fight with less time to try other options whereas now they weed kill on the first sign of weeds ie a smaller area, so when it comes back it will take longer to really cover the lawn and they have more time to do other stuff whilst ones body may still be able to tolerate it. Silly I know but analogies have always been my way of working stuff out.
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
I think that's a very useful way to look at it Kev :-)
User
Wow Kev,
Loving the grass anology spell checker says anology is not recognised but anyway I am going to plough on 😊 . We have an acre of very overgrown grass , we do have a ride on but that's a whole different story .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User