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Poor prognosis

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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