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Poor prognosis

User
Posted 01 Jan 2019 at 16:07

My husband has recently been diagnosed with advanced cancer . Still waiting for results of bone scan & biopsy but consultant seemed pretty sure that apart from hormone treatment he would need chemo prob in the early spring 

User
Posted 10 Jan 2019 at 17:54
Twiggy

Don't let the word "advanced" depress you. The way I read what you have written suggests to me that the MRI scan has shown probable escape of the prostate cancer beyond the prostate. The hormone therapy will be to starve the cancer of testosterone so that it dies back so far as possible to its source and the chemo will be to attempt to zap it in that location but also deal with any stray PCa cells floating about in Bill's body. You should expect to see the PSA score come down to a small number with the HT and then some more with the chemo. It could even become undetectable, less than 0.1, if he is very lucky. Mine did not after a PSA score of 63 and Gleason 9 from the biopsy and that was approaching 12 years ago. I'm 75 now.

There will be side effects from the treatments but for most men these are not too difficult to bear although your love life will certainly be different in future.

Chin up and remember the power of positive thinking.

AC

User
Posted 10 Jan 2019 at 19:05
There are two groups of radiotherapy for prostate cancer; 4 or 7 weeks of daily RT is a curative approach but sometimes a man will be given a short course (anything from 1 to 5 sessions) to reduce pain or stabilise a tumour that is very close to causing damage, for example in the spine.

Best to wait for the full set of results rather than trying to guess.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Jan 2019 at 14:30

Hi the  fact they  want to give him 37 RT sessions is positive. That suggests that they are still aiming for cure

Good luck

Bri

User
Posted 17 Jan 2019 at 20:31
If they are offering curative RT, they must be fairly confident that it hasn't spread to distant nodes; although it won't seem like it right now, this is probably the best news you could have hoped for.

The chemo used for prostate cancer has been known to exacerbate heart problems so I can understand why the onco is reluctant to use it until / unless he has to.

If you like to research stuff, the prostate scrape is called a TURP and by nature, will remove a significant amount of the original cancer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 15:26

You could do but you will be accepting that his prostate cancer will progress and will sooner or later become terminal. RT gives him a chance of full remission and living a long life.

There are men on here who last for years on HT but there are others for whom each hormone only works for a short time and they die very quickly.

At 73 he may feel happy to take the risk or he may feel that he is still a young man with loads of living to do. I think only he can decide that. My father-in-law made a decision to refuse any treatment that affected his sex life and he only lived for 4 years but he was 79 at diagnosis and sex was more important to him than longevity. 

Edited by member 18 Jan 2019 at 15:34  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 15:29
PS I think you might be thinking about it in a slightly skewed way. The purpose of treatment is not to make the PSA lower; the PSA is just one indicator of how well the treatment is working.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 16:32
Hi Twiggy

As you mentioned both doing as much research into PC as you can and also not hearing much about the effects of RT then this may be of interest: http://www.stampedetrial.org/media-section/news/news-stories/2018/october-2018/m1rt-results/

It's not for quite the same profile of patient as your husband. But it shows the positive difference the RT makes to overall outcome for patients with a bit worse PC (so patients with TNM1 - as I understand it you husband has no mets) so you may find it gives you more information about what RT can do. I hope it is useful anyway.

I had external beam RT recently and feel that it was very much the best option for me (Gleason9 T4N0M0)

Good luck to both you and your husband

Steve

User
Posted 18 Jan 2019 at 17:24
StevieP, what is spread to pelvic lymph nodes but metastasis?

Twiggy, one problem about RT spread widely enough to deal with the PCa in those lymph nodes is that it may have unwanted effects in the bowel and bladder unless directed with extreme care. I would talk to the Oncologist about that.

The HT should cause the prostate to shrink and the TURP of course will possibly remove some cancer, depending on the PCa locations. When things have settled down, the RT could be applied. I would say that you probably have some months to think about the RT option.

I was also a Gleason 9 with a high PSA over 11 years ago (I am 75 now). I had no evidence of widespread mets, nor indeed spread to lymph nodes, but realistically micro mets anywhere are possible with a Gleason 9. They may be too small to show on scans. I have now a met in my urethra to illustrate that point. I had RT to the prostate and seminal vesicles. I also had some later specialised brachytherapy to my urethra, but the little blighter survived that.

I offer this to suggest a sense of realism but also hope, that Bill should have more than 10 years of a good life ahead - and I hope in his case and mine, much more!

AC

User
Posted 18 Jan 2019 at 20:01
Yes, I am not surprised you are confused. As I already said, I think you might be best to clarify the diagnosis; the onco is proposing a curative treatment plan so you need to know is he aiming for a possible remission or just trying to delay things a bit (which would be an odd route but not completely unheard of). If the RT is not curative, then it wouldn’t be a great surprise if your OH decided he didn’t want to go through 7 weeks of daily treatment and possible side effects. If there is a chance of cure, different kettle of fish?

I think you have some of the story clear in your head but not all of it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 20:03

Hi Twiggy,

My husband is similar in diagnosis.

As far as I understand radiotherapy is given with curative intent. Perhaps the 2~3 years meant the time on hormone therapy which makes it more effective? 

If lymph nodes are within pelvis it's classed as locally advanced which you can read a fact sheet about on this website which I found useful. 

User
Posted 18 Jan 2019 at 21:34
That sounds more plausible to me Gemma. I find it hard to believe that a man who was being offered RT as here would be told he had a life expectancy of 2-3 years.
Barry
User
Posted 18 Jan 2019 at 22:28
Hello Twiggy,

I have the same diagnosis as your OH Gleason 9, 4 + 5 T3b N1 M0 lymph node involvement and spread to seminal vesicles. I am 51 and I feel very well having completed 37 RT treatments last summer. I have just less than 2 years of hormone therapy remaining. I had 2 days off last year, I travel with work and I am back on a training regime which is making me feel great!

I think Gemma is right about the 2-3 years being the hormone therapy duration.

Richard

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User
Posted 01 Jan 2019 at 21:07

Hi Twiggy

sorry to have you join us but since you are here, welcome. its such a difficult time for you both, all the waiting for results and worry .if it helps, my husband has had this disease for eight years  now, he was advanced on diganosis and a gleason 10. He has only had chemo in the last year and is now waiting for further treatment. it doesnt always follow a set path, try to keep your nerve and let us help you in the meantime.

love Devonmaid  

User
Posted 01 Jan 2019 at 22:37
Thank you Devonmaid

It is good to know people go on for years even though prognosis was advanced .

Just a bit worried about the way the consultant & nurse worded their summery .

In the letter to Dr it was stated they took only two biopsy from each side . Everything I have read states at least 10

User
Posted 01 Jan 2019 at 22:58
Does it say they took two samples from each side or that two were positive on each side?

If they only took 4 cores in total, they may have already been very sure he had prostate cancer and simply needed to check which type he has There are at least 27 different types of prostate cancer and some need a different kind of treatment to others. There would be little point in exposing him to the risks of multiple sampling if they already knew there was cancer. Was his PSA very high? How did he come to be having tests for prostate cancer and how old is he?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Jan 2019 at 23:07
Hi . He had been unwell with chest infection & lost weight . Just went on so long . Dr took other blood tests but they were ok. So she sent him for psa blood test. It came back 22 . So urgent referral . He was having trouble peeing . They said his prostrate was hard & had mri same day. They saw us a few days later . Said it had spread to tissues so was no cute but started him on hormone treatment same day . They took two samples from each side & he has had bone scan. He is 73
User
Posted 02 Jan 2019 at 08:32

Hi Twiggy

when they said spread to tissues, do you know what that meant? it generally goes to bone and possibly lymph, sometimes it does go to organs and soft tissue. I’d say that would have different connotations if spread to soft tissue. 

At a PSA of 22 that seems unlikely, but it does depend on the type of PCA he might have.

love Devonmaid xxx

User
Posted 02 Jan 2019 at 08:46
We don't know until we get his results which hopefully won't be long .
User
Posted 10 Jan 2019 at 14:53
Hi my husband just got letter from hospital

He is to see oncologist (radiotherapy) next thursday.

Very strange as the other specialist said no point in radiotherapy.

So am I being optimistic in thinking that it has only spread to soft tissue & they can give him some sessions of radiotherapy.

He seems to be responding well to hormone treatment .

User
Posted 10 Jan 2019 at 15:32
Hi Twiggy,

Sorry to see you here but welcome.

It will be a great help to the community when you get the full details of your husband’s diagnosis, if you could post them in your profile. Things like Gleason score ?+?=?, any PiRads MRI reading, PSA before and after diagnosis, as that will assist the good folk here to offer advice in the future.

Click on my pen name to see my profile, and most others here will have completed theirs as well.

Please do order the PCUK information ‘Toolkit’ folder anyway, as it’s packed with information about this condition.

Best of luck.

Cheers, John.

User
Posted 10 Jan 2019 at 16:16
Thank You John.

I will as soon as we know

X

User
Posted 10 Jan 2019 at 17:54
Twiggy

Don't let the word "advanced" depress you. The way I read what you have written suggests to me that the MRI scan has shown probable escape of the prostate cancer beyond the prostate. The hormone therapy will be to starve the cancer of testosterone so that it dies back so far as possible to its source and the chemo will be to attempt to zap it in that location but also deal with any stray PCa cells floating about in Bill's body. You should expect to see the PSA score come down to a small number with the HT and then some more with the chemo. It could even become undetectable, less than 0.1, if he is very lucky. Mine did not after a PSA score of 63 and Gleason 9 from the biopsy and that was approaching 12 years ago. I'm 75 now.

There will be side effects from the treatments but for most men these are not too difficult to bear although your love life will certainly be different in future.

Chin up and remember the power of positive thinking.

AC

User
Posted 10 Jan 2019 at 19:05
There are two groups of radiotherapy for prostate cancer; 4 or 7 weeks of daily RT is a curative approach but sometimes a man will be given a short course (anything from 1 to 5 sessions) to reduce pain or stabilise a tumour that is very close to causing damage, for example in the spine.

Best to wait for the full set of results rather than trying to guess.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Jan 2019 at 14:23
Hi All

Just got back from seeing consultant . Bill has aggressive Prostate Cancer

Cancer 4 + 5 . T4 spread to pelvic lymph nodes .

He wants to give him 37 radiotherapy sessions starting in May . Before that he will see the urologist again with the prospect of having his prostrate scraped to make more room for his bladder . Then end March another MRI & blood tests.

He said he was very reluctant to give Bill Chemo as it is so invasive & not happy that Bill has a stent although he doesn't have any ongoing heart problems .

We have now got to sit back & take all this onboard. Also going from monthly to three monthly injections

User
Posted 17 Jan 2019 at 14:30

Hi the  fact they  want to give him 37 RT sessions is positive. That suggests that they are still aiming for cure

Good luck

Bri

User
Posted 17 Jan 2019 at 18:05
Hi Twiggy,

At least you know what’s what!

Would it be worthwhile asking for a second opinion from another oncologist and whether (s)he concurs completely with the proposed treatment plan going forward?

If you don’t ask now, you are likely to be asking yourself ‘What if?’, if everything doesn’t go to plan in the future.

I am afraid there are so many ‘What if’s’ that crop up with PCa. I have one or two myself, but I will never ask myself: ‘What if I’d had a different surgeon’, because I researched the whole thing beforehand, with the help of friends and people here.

So, best of luck with Dan Dare and his ray-gun. He is very, very, efficacious these days, I believe.

Here’s to a successful outcome!

Cheers, John.

User
Posted 17 Jan 2019 at 18:20
Hi John.

It takes a bit of time to sink in tbh. My husband is very depressed about it all. He would rather keep his head in the sand & hope it all goes away .

I on the other hand do as much research as I possible can .

I do get the impression that they are trying to give him some quality of life rather than going,down the chemo road & all its side effects. He was extremely kind & honest but did say three times that Bill has very aggressive Prostate Cancer .

His pee flow test yesterday didn't go well so he will be seeing urologist soon about having his prostrate scraped .

If course I am concerned that it has spread to his lymph nodes as it could have spread anywhere .

User
Posted 17 Jan 2019 at 20:31
If they are offering curative RT, they must be fairly confident that it hasn't spread to distant nodes; although it won't seem like it right now, this is probably the best news you could have hoped for.

The chemo used for prostate cancer has been known to exacerbate heart problems so I can understand why the onco is reluctant to use it until / unless he has to.

If you like to research stuff, the prostate scrape is called a TURP and by nature, will remove a significant amount of the original cancer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 14:43
Hi all.

Having been thinking of nothing else since yesterday.

I am wondering if Bill doesn't have the RT & just stayed on his 3 monthly injections. What I have seen from many posts on here is that the HI alone make a huge difference to the PSA.

He seems to be doing really well with the injections & living a normal life but worried if he goes down the RT road all that will change.

User
Posted 18 Jan 2019 at 15:26

You could do but you will be accepting that his prostate cancer will progress and will sooner or later become terminal. RT gives him a chance of full remission and living a long life.

There are men on here who last for years on HT but there are others for whom each hormone only works for a short time and they die very quickly.

At 73 he may feel happy to take the risk or he may feel that he is still a young man with loads of living to do. I think only he can decide that. My father-in-law made a decision to refuse any treatment that affected his sex life and he only lived for 4 years but he was 79 at diagnosis and sex was more important to him than longevity. 

Edited by member 18 Jan 2019 at 15:34  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 15:29
PS I think you might be thinking about it in a slightly skewed way. The purpose of treatment is not to make the PSA lower; the PSA is just one indicator of how well the treatment is working.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 15:58
I can understand that chemo has proved to make hormone treatment last longer but not heard that about RT
User
Posted 18 Jan 2019 at 16:32
Hi Twiggy

As you mentioned both doing as much research into PC as you can and also not hearing much about the effects of RT then this may be of interest: http://www.stampedetrial.org/media-section/news/news-stories/2018/october-2018/m1rt-results/

It's not for quite the same profile of patient as your husband. But it shows the positive difference the RT makes to overall outcome for patients with a bit worse PC (so patients with TNM1 - as I understand it you husband has no mets) so you may find it gives you more information about what RT can do. I hope it is useful anyway.

I had external beam RT recently and feel that it was very much the best option for me (Gleason9 T4N0M0)

Good luck to both you and your husband

Steve

User
Posted 18 Jan 2019 at 17:24
StevieP, what is spread to pelvic lymph nodes but metastasis?

Twiggy, one problem about RT spread widely enough to deal with the PCa in those lymph nodes is that it may have unwanted effects in the bowel and bladder unless directed with extreme care. I would talk to the Oncologist about that.

The HT should cause the prostate to shrink and the TURP of course will possibly remove some cancer, depending on the PCa locations. When things have settled down, the RT could be applied. I would say that you probably have some months to think about the RT option.

I was also a Gleason 9 with a high PSA over 11 years ago (I am 75 now). I had no evidence of widespread mets, nor indeed spread to lymph nodes, but realistically micro mets anywhere are possible with a Gleason 9. They may be too small to show on scans. I have now a met in my urethra to illustrate that point. I had RT to the prostate and seminal vesicles. I also had some later specialised brachytherapy to my urethra, but the little blighter survived that.

I offer this to suggest a sense of realism but also hope, that Bill should have more than 10 years of a good life ahead - and I hope in his case and mine, much more!

AC

User
Posted 18 Jan 2019 at 18:54

Originally Posted by: Online Community Member
StevieP, what is spread to pelvic lymph nodes but metastasis?

AC

I’m not sure that we have reliable information AC; it seems a bit inconsistent to me and we alł know how hard it is to make sense of the medical information given at appointments sometimes. Twiggy said at first that it was diagnosed as advanced PCa which would indicate N1 or M1 but that doesnt fit with the planned treatment at all so I am wondering if it is actually a T4 N0 M0 instead? Either way, the onco believes that full RT is an appropriate treatment plan so perhaps the most important thing is for Twiggy to clarify the diagnosis and staging? 

As you say, it will be at least 3 months before OH is presenting for RT so there is plenty of time to get more information and make a final decision. 

 

 

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 19:52
Hi . Yes it is T4 . 4+5 . Spread to nymph nodes but bone scan clear . Did did say something about 2 to 3 years but I didn't question him as last thing my husband would want to hear is a time scale .

Does anyone know if this type of cancer is curable or is the treatment just to keep it at bay for as long as possible . We were told by urologist that it was incurable so was quite surprised when oncologist said about giving him 37 RT treatments.

Slightly confused

User
Posted 18 Jan 2019 at 20:01
Yes, I am not surprised you are confused. As I already said, I think you might be best to clarify the diagnosis; the onco is proposing a curative treatment plan so you need to know is he aiming for a possible remission or just trying to delay things a bit (which would be an odd route but not completely unheard of). If the RT is not curative, then it wouldn’t be a great surprise if your OH decided he didn’t want to go through 7 weeks of daily treatment and possible side effects. If there is a chance of cure, different kettle of fish?

I think you have some of the story clear in your head but not all of it.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2019 at 20:03

Hi Twiggy,

My husband is similar in diagnosis.

As far as I understand radiotherapy is given with curative intent. Perhaps the 2~3 years meant the time on hormone therapy which makes it more effective? 

If lymph nodes are within pelvis it's classed as locally advanced which you can read a fact sheet about on this website which I found useful. 

User
Posted 18 Jan 2019 at 21:34
That sounds more plausible to me Gemma. I find it hard to believe that a man who was being offered RT as here would be told he had a life expectancy of 2-3 years.
Barry
User
Posted 18 Jan 2019 at 22:28
Hello Twiggy,

I have the same diagnosis as your OH Gleason 9, 4 + 5 T3b N1 M0 lymph node involvement and spread to seminal vesicles. I am 51 and I feel very well having completed 37 RT treatments last summer. I have just less than 2 years of hormone therapy remaining. I had 2 days off last year, I travel with work and I am back on a training regime which is making me feel great!

I think Gemma is right about the 2-3 years being the hormone therapy duration.

Richard

User
Posted 20 Jan 2019 at 18:52

Thanks Richard, this is encouraging.

Like Twiggy I'm so worried about the lymph node involvement

 

 
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