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Devastated partner52 gleason9 t3b diagnosis

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User
Posted 03 Sep 2017 at 01:58
Please can anyone give me some advice feel like im drowning my whole chest hurts, not posted for a while as no news to share, all that changed today, ( please forgive me
If im posting in the wrong place,wrong terminology etc ive only posted a few times not experienced or technical) ,5weeks ago my partner of 27 years age 52 had repeat targeted biopsys to area of concern found on mpmri at base of prostate, repeat psa27 elavated from 22 first psa back in may i think, he,d already previously had random trus biopsys gleason6, today told he,d been understaged hes now GLEASON9 T3B, also spread out into the seminal vesicle, given 2options hormone pills then injections after along with radiotherapy if i was hearing correct, or maybe eligable for high dose brachytherapy but not sure on that one also would have to travel to leeds 1 and half hour drive away but thats nothing if its better treatment or less side effects,
Hes refering him to oncologist, i felt my head swimming came away with prescription from pharmacy cyproterone pills50mg to take for 4weeks then think he said would send appointment for injection for zolidex, anyone who could give a bit of input or advice would be so much appreciated, or just to try and put things into perspective, i feel like im in a bad dream and its not ending, our daughter 26 is on her travels thailand at the minute,home in4weeks, ive played it down when i spoke to her today, no point giving bad news when other side of the world to upset her happy times, my partner is like a rabbit in headlights terrified but putting a brave face on, im putting on a front trying to look on the positive it could be worse, im devastated.. many thanks in advance and im sorry for the long post whittering on but once i started just needed to get it all out there.xx
User
Posted 03 Sep 2017 at 10:56

Hi Jt,had the same feelings and close to same diagnosis as your oh,10 biopsies all positive,gleason of 7 and 8 t3b.localy advanced, had the hormone tablets for 4 weeks, had the 6 month injection 1 month ago decapepril,in the 1 month my psa has gone from 31.5 to 9.2,so for me its hormone then rt,i am coping with the hormone really well,. all i have is hot flushes mainly through the night and thats all.going back to work on monday on phased return I'm a hgv driver at royal mail.i was getting short of breath thinking it was side effects but turns out i have emphysema, and border line diabetic, then found out on friday i need a turp op before the rt,but as i say I'm getting on with my life and my wife Jacqui and daughters are very supportive, the help out there is amazing, the help on here is amazing. xxx

HOWAY THE LADS
User
Posted 03 Sep 2017 at 18:23

My husband is Gleason 9 T3B his treatment has been HDR Brachtherpay followed by 25 session of radiotherapy.2015\6 He has also had Prostrap hormone injections every three months, he has another seven months before he finishes the prostrap.
His PSA has been <0.1 since he went on the Prostrap.We felt devestated, helpless and useless. I read and reseached as much as I could and we made some dietary changes. He is now living a full life, currently painting our house and we also grow all our own veg. We have had holidays, and as he regained his strength, both mentally and physically we are enjoying our lives.
He still plays every day as a musician, and we both walk or Jog three times a week. We are also involved with put local prostate cancer support group.
No one wants this dammed disease, it's hard going when diagnosed, but I think information research helps us manage.

My advice is read, ask questions, and don't be afraid to get a second opinion.

Please share your fears and views here, it's a good place to get support, and read others experiences.

Leila

User
Posted 03 Sep 2017 at 23:06
Thank you so much for your replies and advice, it means a lot to hear some positive things and from the heart advice from real people who have had experience of this awful disease and side effects of treatments etc, i suppose it just makes you feel less alone in the minefield of information which is out there, im all read out, going cross eyed, reading finding out as much as possible as i can about outcomes treatments etc, my partner is completely the opposite think hes burying his head in the sand but i suppose thats his way of dealing with things, we talk i drip feed information to him wether he retains it is another matter,were both positive outgoing sociable people but when faced with something friends,relatives etc havnt experienced its hard for them to know what to say, talk about etc, conversation tends to be either be a little bit sorryful or sort of played down a bit, im a very transparant open type of person who believes in getting things out there say it how it is, but its just lovely that people who dont even know us have taken the time to reply, i cant explain it im not usually lost for words or soppy or emotional, but for a real people to give their own experiences of similar diagnosis, it means a lot thank you so much for your kind words, scoobys dad, leila and PenP..jo.xx
User
Posted 04 Sep 2017 at 08:09

J.t, your husband's situation is pretty much identical to mine, I was diagnosed back in May, Gleeson 9, T3b, locally advanced. I started on Cypretorone Acetate before having my first Prostap Hormone injection. I had a bit of a reaction that gave me a nasty rash but it cleared after I stopped taking them! My PSA was 54.7 and came down to 1.9 after 8 weeks. I have just started 6 cycles of Chemotherapy after long discussions with the Oncology team. Not pleasant but hopefully it will help make the HT even more effective for the future. 


I was and am pretty philosophical about the whole situation although initially the diagnosis hit me like a truck! Same was true for my wife, I think she was even more devastated than me as she has always been the eternal optimist! We have found that talking it through and being honest with each other about what we are thinking and feeling has worked well for us, but then we have always had that kind of relationship so it has been pretty straightforward for us. If you can encourage your OH to talk then I am sure it would help but I know how much of a challenge that can be and some people deal with things in their own ways.


It always sounds easy to say but, try and remain positive, there are so many of us at different stages of the same journey. I have benefitted so much from this site, reading other's experiences and advice, keep coming back and reading, yes, it is information overload at times but, rest assured, as you go down this route it all begins to make more and more sense and becomes much more personal to you and yours!


I wish you all the best for the road ahead.


 

User
Posted 05 Sep 2017 at 17:11

I can just add that I was diagnosed Gleason 9, ten years ago with a much bigger PSA number and am still going strong at 74. Your husband's age is the worrying factor. I felt that I was in my prime in my fifties, an active sportsman still and plenty of get up and go, if I can put it that way! It will be much harder for you both than it was for my wife and me, so I do sympathise and appreciate the changes which you will have to face together and which will be very challenging. Nevertheless, I think it likely that a whole raft of new treatments will be available over the next decade which will transform your husband''s prospects. It is important to stay positive and keep battling the enemy. One weapon you have is fitness. Hormone treatment can induce lethargy and lead to the pounds piling on. Look upon those things as fellow travellers to your "enemy" and keep them at bay and life will be so much better for you both.

Good Luck

AC

User
Posted 06 Sep 2017 at 08:11

Hi J.T


my husband was diagnosed 11 years ago gleason 9 T3B, spread to seminals he had hormone therapy and r t in 2006. he is still going strong , has been on and off ht ever since. he was 61 when he was diagnosed and still goes to the gym 3 times a week and golf twice a week. stay positive there are so many new treatments coming up.


regards barbara

User
Posted 21 Sep 2017 at 03:26

Hi J.t
I'm in a very similar situation. OH had PSA test result of 302 at the beginning of July. We only got the scan(s) results on Aug 24 by which time I wanted to scream! His has also spread to the seminal vesicles. Of the prostate biopsies all 12 were positive, containing 80-92% tumour. Gleason score of 9 (4+5), grade 5, T3b N1 M1. So yes, it is in his lymph nodes & his skeletal torso scan is difficult to take in with mets widespread & some large. So he's already on some heavy pain meds. Seeing the Oncologist next Thurs, 28th, brought forward from Oct 18th! Yes, the waiting is the hardest. First for tests, then results, then the plan of action. For us everything has been 'in two weeks'. He's had his first lot of HT, inc Prostap, next lot due mid October.
The whole thing is a waking nightmare & when we first got the PSA results I was utterly bereft, almost grieving & felt very alone. The guys on here have been brilliant. Even those whose journey has been different have just said hi & some days that has been enough for me to cling to. Btw, I'm 45 (too soon!) & my OH is 54. We have a 19yr old son who has just gone to university & a 17yr old in her 'A' Level year. I'm also partially disabled after losing a fight with a truck. The thought of losing him leaves me a gibbering wreck so I try to remember what stubborn b*ggers we are & that he is determined to see the kids graduate. Please feel free to message me if you want to talk. It's a daunting time for all of us but there's no way that you need to feel alone this.
Mel

User
Posted 21 Sep 2017 at 09:14

hi jt,same here was dx 2014 psa 65 spread to semi vessicles been off ht 1yr 2mths now,so 3/1/2 yrs since dx psa still undetectable so try not to worry plenty of help around.

User
Posted 21 Sep 2017 at 16:57
Hi mel thankyou for your reply check your inbox ive messaged you..jo.
User
Posted 11 Mar 2018 at 19:41

Some oncos don't bother looking at PSA until 6 months after the RT finished, done any earlier it is hard to rely on the results.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
Show Most Thanked Posts
User
Posted 03 Sep 2017 at 10:56

Hi Jt,had the same feelings and close to same diagnosis as your oh,10 biopsies all positive,gleason of 7 and 8 t3b.localy advanced, had the hormone tablets for 4 weeks, had the 6 month injection 1 month ago decapepril,in the 1 month my psa has gone from 31.5 to 9.2,so for me its hormone then rt,i am coping with the hormone really well,. all i have is hot flushes mainly through the night and thats all.going back to work on monday on phased return I'm a hgv driver at royal mail.i was getting short of breath thinking it was side effects but turns out i have emphysema, and border line diabetic, then found out on friday i need a turp op before the rt,but as i say I'm getting on with my life and my wife Jacqui and daughters are very supportive, the help out there is amazing, the help on here is amazing. xxx

HOWAY THE LADS
User
Posted 03 Sep 2017 at 18:23

My husband is Gleason 9 T3B his treatment has been HDR Brachtherpay followed by 25 session of radiotherapy.2015\6 He has also had Prostrap hormone injections every three months, he has another seven months before he finishes the prostrap.
His PSA has been <0.1 since he went on the Prostrap.We felt devestated, helpless and useless. I read and reseached as much as I could and we made some dietary changes. He is now living a full life, currently painting our house and we also grow all our own veg. We have had holidays, and as he regained his strength, both mentally and physically we are enjoying our lives.
He still plays every day as a musician, and we both walk or Jog three times a week. We are also involved with put local prostate cancer support group.
No one wants this dammed disease, it's hard going when diagnosed, but I think information research helps us manage.

My advice is read, ask questions, and don't be afraid to get a second opinion.

Please share your fears and views here, it's a good place to get support, and read others experiences.

Leila

User
Posted 03 Sep 2017 at 20:01
Hello JT my dad was diagnosed G9 T3b back in February. He has recently finished radiotherapy and is on the hormone implant. His had spread to the seminal vesicles too. It has been a very difficult time for him and his family and your post really touched me as I could have written it myself. The greatest support to me were the nurses that you can phone (number on this site). They helped me to understand how dad might be feeling, what I could do to support him and helped me understand the treatment. This forum has also helped me enormously. I am thinking of you and your family and sending much love xxx
User
Posted 03 Sep 2017 at 23:06
Thank you so much for your replies and advice, it means a lot to hear some positive things and from the heart advice from real people who have had experience of this awful disease and side effects of treatments etc, i suppose it just makes you feel less alone in the minefield of information which is out there, im all read out, going cross eyed, reading finding out as much as possible as i can about outcomes treatments etc, my partner is completely the opposite think hes burying his head in the sand but i suppose thats his way of dealing with things, we talk i drip feed information to him wether he retains it is another matter,were both positive outgoing sociable people but when faced with something friends,relatives etc havnt experienced its hard for them to know what to say, talk about etc, conversation tends to be either be a little bit sorryful or sort of played down a bit, im a very transparant open type of person who believes in getting things out there say it how it is, but its just lovely that people who dont even know us have taken the time to reply, i cant explain it im not usually lost for words or soppy or emotional, but for a real people to give their own experiences of similar diagnosis, it means a lot thank you so much for your kind words, scoobys dad, leila and PenP..jo.xx
User
Posted 04 Sep 2017 at 08:09

J.t, your husband's situation is pretty much identical to mine, I was diagnosed back in May, Gleeson 9, T3b, locally advanced. I started on Cypretorone Acetate before having my first Prostap Hormone injection. I had a bit of a reaction that gave me a nasty rash but it cleared after I stopped taking them! My PSA was 54.7 and came down to 1.9 after 8 weeks. I have just started 6 cycles of Chemotherapy after long discussions with the Oncology team. Not pleasant but hopefully it will help make the HT even more effective for the future. 


I was and am pretty philosophical about the whole situation although initially the diagnosis hit me like a truck! Same was true for my wife, I think she was even more devastated than me as she has always been the eternal optimist! We have found that talking it through and being honest with each other about what we are thinking and feeling has worked well for us, but then we have always had that kind of relationship so it has been pretty straightforward for us. If you can encourage your OH to talk then I am sure it would help but I know how much of a challenge that can be and some people deal with things in their own ways.


It always sounds easy to say but, try and remain positive, there are so many of us at different stages of the same journey. I have benefitted so much from this site, reading other's experiences and advice, keep coming back and reading, yes, it is information overload at times but, rest assured, as you go down this route it all begins to make more and more sense and becomes much more personal to you and yours!


I wish you all the best for the road ahead.


 

User
Posted 04 Sep 2017 at 11:28
Thank you for reply and advice bigferg, it means a lot to have some positive advice from someone whos experienced the enemy (p/c) thats our name for it, im realy pleased your on the way to beating this it helps to know that once on the treatment road things start been a bit clearer like psa reduced etc, my oh started his cyproterone today so still early days but feel better knowing that it will start doing its job hopefully slowing the enemy down over next few weeks, awaiting appointment with onco so will see what they advise when the time comes, thank you so much for sharing your experience i cant believe how kind people are taking time and giving advice to people they dont know, this forum realy is a great thing for people who need support, weve got lots of great friends and also great family support, ive got3 sisters although all can be fantastic they cant offer solid words as not been through things like this, thank god they never have to either..thank you again for reply and i wish you and your lovely family all the best on your journey and good outcomes..x
User
Posted 05 Sep 2017 at 17:11

I can just add that I was diagnosed Gleason 9, ten years ago with a much bigger PSA number and am still going strong at 74. Your husband's age is the worrying factor. I felt that I was in my prime in my fifties, an active sportsman still and plenty of get up and go, if I can put it that way! It will be much harder for you both than it was for my wife and me, so I do sympathise and appreciate the changes which you will have to face together and which will be very challenging. Nevertheless, I think it likely that a whole raft of new treatments will be available over the next decade which will transform your husband''s prospects. It is important to stay positive and keep battling the enemy. One weapon you have is fitness. Hormone treatment can induce lethargy and lead to the pounds piling on. Look upon those things as fellow travellers to your "enemy" and keep them at bay and life will be so much better for you both.

Good Luck

AC

User
Posted 06 Sep 2017 at 08:11

Hi J.T


my husband was diagnosed 11 years ago gleason 9 T3B, spread to seminals he had hormone therapy and r t in 2006. he is still going strong , has been on and off ht ever since. he was 61 when he was diagnosed and still goes to the gym 3 times a week and golf twice a week. stay positive there are so many new treatments coming up.


regards barbara

User
Posted 21 Sep 2017 at 03:26

Hi J.t
I'm in a very similar situation. OH had PSA test result of 302 at the beginning of July. We only got the scan(s) results on Aug 24 by which time I wanted to scream! His has also spread to the seminal vesicles. Of the prostate biopsies all 12 were positive, containing 80-92% tumour. Gleason score of 9 (4+5), grade 5, T3b N1 M1. So yes, it is in his lymph nodes & his skeletal torso scan is difficult to take in with mets widespread & some large. So he's already on some heavy pain meds. Seeing the Oncologist next Thurs, 28th, brought forward from Oct 18th! Yes, the waiting is the hardest. First for tests, then results, then the plan of action. For us everything has been 'in two weeks'. He's had his first lot of HT, inc Prostap, next lot due mid October.
The whole thing is a waking nightmare & when we first got the PSA results I was utterly bereft, almost grieving & felt very alone. The guys on here have been brilliant. Even those whose journey has been different have just said hi & some days that has been enough for me to cling to. Btw, I'm 45 (too soon!) & my OH is 54. We have a 19yr old son who has just gone to university & a 17yr old in her 'A' Level year. I'm also partially disabled after losing a fight with a truck. The thought of losing him leaves me a gibbering wreck so I try to remember what stubborn b*ggers we are & that he is determined to see the kids graduate. Please feel free to message me if you want to talk. It's a daunting time for all of us but there's no way that you need to feel alone this.
Mel

User
Posted 21 Sep 2017 at 09:14

hi jt,same here was dx 2014 psa 65 spread to semi vessicles been off ht 1yr 2mths now,so 3/1/2 yrs since dx psa still undetectable so try not to worry plenty of help around.

User
Posted 21 Sep 2017 at 16:57
Hi mel thankyou for your reply check your inbox ive messaged you..jo.
User
Posted 21 Sep 2017 at 17:10
Hi radar thank you for your reply its reassuring to hear from real people and not just statistics and clinical talk, its good to know that these treatments do work and theres positives outcomes, ive read your profile radar and my god you are so young to have had this awful disease, my oh got bonescan results yesterday all clear luckily, had first zoladex implant yesterday see oncologist 2/10 r.e radiotherapy plan, how did you cope with the side effects of hormones any tips would be appreciated worried about long term dysfunction etc..this forum has been so good such support from people who want to help others..thank you so much for taking the time to share your advice it means a lot..jo.
User
Posted 11 Mar 2018 at 17:14
Hi my OH has his follow up with inco on wednesday theyve not asked for psa test, he finished 23 sessions of radiotherapy 14th february he also had HD brachytherapy 29th december, hes also on zoladex possivly for 3years, hes had minimal side effects worked through all of his treatments apart from loss of libido no other concerns, is it too good to be true that hes got away lightly with side effects? Im just wondering if anyone has any idea of when my OH will need to have another psa test i think he had his last one just before his planning scan for radiotheapy..jo.xx
User
Posted 11 Mar 2018 at 19:41

Some oncos don't bother looking at PSA until 6 months after the RT finished, done any earlier it is hard to rely on the results.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Mar 2018 at 20:16
Thank you lynn im reassured now, especially with your knowledge and experience,.joxx
 
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