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The most devastating news

User
Posted 02 Mar 2016 at 16:55
Hi everyone, we went to the hospital today for the results of dads biopsy and got the worst news possible. His gleeson score is 9 and the prognosis seems to be around a year. I just can't believe it, he is still working and seems quite well, just tired and the odd pain in his back, how can his prognosis be so short, will he now become ill very quickly ? I have tried to be so strong and stay positive since his first diagnosis on 29 Jan but I completely lost it in the consultants office today, when he said I'm not talking days, not weeks perhaps not even months the world came to a standstill. They are putting dad on to Goserelin and we will have an appointment with the oncologist soon. I just can't understand how this has all happened so quickly, how do you deal with knowing that the first man in your life is terminally ill. So want to be positive for dad but struggling to find the strength.

Love to you all

Dawn x

User
Posted 02 Mar 2016 at 17:30

Dawn, I am so sorry to read this latest update.

I won't presume to answer your question because I just don't know.

Just be assured that you and your family are in our  thoughts.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Mar 2016 at 17:47

Hi Dawn,

It is utterly devastating to have a cancer diagnosis, as much for family as the person diagnosed. You will feel as if your world has been turned upside down for some time because of the shock and uncertainty. It may help to download the PCUK toolkit from this site, lots of useful information adout the disease, treatments, practical concerns, relationship and family implications. No one can say for sure how long your Dad may live. PCa is a very individual disease and it's no telling how your Dad will react until the treatments take effect. Gleason 9 is an aggressive score, but you dont say, for instance, wheter the cancer is contained in the prostate, locally advanced or advanced, all of which have a bearing on treatments and life expectancy ? There are men on the site who have high Gleason scores who have responded well to treatment and who are still around years after diagnosis, every man is different and there are some types of PCa which have a worse prognosis than others. There are many more treatment options than years ago, all, sadly, with side effects, but which may prolong life considerably. Are there any Clinical trials that have been suggested for your Dad. Many men here are on the Stampede Trial for instance if diagnosed with advanced PCa. You will get lots of support here, we are all in the same boat so to speak, Pca having touched our lives in one way or another. If you can give some more detail about your Dad, eg, has he had any scans, etc to detect posssible spread elsewhere, the more people will be able to advise and support you. It is likely there will be lots of people along to comment, no doubt some in the same situation as your Dad plus we have had several daughters lately in the same predicament as you.

Best wishes, Fiona.

User
Posted 02 Mar 2016 at 20:32
I am so sorry to read about your Dad Dawn, I too am Gleason 9, it's just rubbish but I know what is important to me is spending time with friends and family in order to make the best memories possible. Your support will be crucial to Dad . If he generally feels ok at the moment go and do things now, there will (sadly) be plenty of time to be sad later. My thoughts and good wishes are with you and all your family. 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
Posted 02 Mar 2016 at 20:36

Dawn it is difficult to interpret where you are on the treatment path but your Dad is not terminal until all treatment has stopped. He has just started zoladex and this is standard treatment for advanced PCa. The other main one is prostap, they work the same and I have Gleason 9 and bone spread and am still here over four years later. Unless there are facts about your Dad's cancer which we are unaware of it would seem there are lots of options to go in,causing a number of newer drugs and chemo. Indeed talk to the oncologist about other choices.

All cancers are different and PCa has at least 27 variants and some can be very aggressive what tends to called tigers. So the are no guarantees. I have not seen whether he has had a CT Scan and whether there is spread in his soft tissue as well as bone. As someone else suggested fill in the profile it helps in giving advice. Are you currently seeing a urologist and about to move to an oncologist. If so you may well get another perspective from th onco. Keep us in touch.

User
Posted 24 Mar 2016 at 12:46

This is good news, Dawn. So glad you have an informative and supportive oncologist. Lets hope the chemo knocks Dad's cancer back for a long time. Regards,

 

Fiona.

User
Posted 24 Mar 2016 at 13:22

Well this is exactly why doctors shouldn't try to give a prognosis if they haven't got all the information. Really pleased for you and your sister that the oncologist was a more cheerful soul than the urologist!

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

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User
Posted 02 Mar 2016 at 17:30

Dawn, I am so sorry to read this latest update.

I won't presume to answer your question because I just don't know.

Just be assured that you and your family are in our  thoughts.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Mar 2016 at 17:47

Hi Dawn,

It is utterly devastating to have a cancer diagnosis, as much for family as the person diagnosed. You will feel as if your world has been turned upside down for some time because of the shock and uncertainty. It may help to download the PCUK toolkit from this site, lots of useful information adout the disease, treatments, practical concerns, relationship and family implications. No one can say for sure how long your Dad may live. PCa is a very individual disease and it's no telling how your Dad will react until the treatments take effect. Gleason 9 is an aggressive score, but you dont say, for instance, wheter the cancer is contained in the prostate, locally advanced or advanced, all of which have a bearing on treatments and life expectancy ? There are men on the site who have high Gleason scores who have responded well to treatment and who are still around years after diagnosis, every man is different and there are some types of PCa which have a worse prognosis than others. There are many more treatment options than years ago, all, sadly, with side effects, but which may prolong life considerably. Are there any Clinical trials that have been suggested for your Dad. Many men here are on the Stampede Trial for instance if diagnosed with advanced PCa. You will get lots of support here, we are all in the same boat so to speak, Pca having touched our lives in one way or another. If you can give some more detail about your Dad, eg, has he had any scans, etc to detect posssible spread elsewhere, the more people will be able to advise and support you. It is likely there will be lots of people along to comment, no doubt some in the same situation as your Dad plus we have had several daughters lately in the same predicament as you.

Best wishes, Fiona.

User
Posted 02 Mar 2016 at 18:51
Hi dawn

I am so sorry to hear this. I don't know what my dads Gleason score is and I don't think I want to now. Like everyone says it's hard to say how long someone's prognosis is as everyone's cancer is different. My dad asked his doctor and he said he couldn't say as no one knows what can happen. I think as long as he starts his hormones and they kick in, then you will know a bit more. I'm sure they will do all they can for your dad. If he is in good health now then that must be good. As long as he eats well and keeps positive that all helps. He will have regular hospital appointments so you will always know what's happening. My dad takes a supplement called Pomi -T which is from pomegranates and is supposed to be good for men with prostate cancer. My mum and dad swear by it. You can buy it online just google Pomi -T. Until you get more tests done and get the results you will know a lot more from there.

I wish you all well and will be thinking about you.

Take care

Anna xxx

User
Posted 02 Mar 2016 at 20:15
Thank you everyone. We know that dad's cancer has spread or his spine, neck and hips as he's already had a bone scan. We asked the doctor today about any further spread and he said that was academic? Clinical trials were mentioned at the first appointment but today the dr said he may go on one but that the oncologist would discuss this at the next appointment.

Dawn x

User
Posted 02 Mar 2016 at 20:28
Hi Dawn

I have responded on the other thread, but really, you probably need to see what the oncologist says as he/she will have a better picture by now. Try not to despair, keep positive and see how dad gets on with the HT. It can be really effective.

Take care

Allison xx

User
Posted 02 Mar 2016 at 20:32
I am so sorry to read about your Dad Dawn, I too am Gleason 9, it's just rubbish but I know what is important to me is spending time with friends and family in order to make the best memories possible. Your support will be crucial to Dad . If he generally feels ok at the moment go and do things now, there will (sadly) be plenty of time to be sad later. My thoughts and good wishes are with you and all your family. 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
Posted 02 Mar 2016 at 20:36

Dawn it is difficult to interpret where you are on the treatment path but your Dad is not terminal until all treatment has stopped. He has just started zoladex and this is standard treatment for advanced PCa. The other main one is prostap, they work the same and I have Gleason 9 and bone spread and am still here over four years later. Unless there are facts about your Dad's cancer which we are unaware of it would seem there are lots of options to go in,causing a number of newer drugs and chemo. Indeed talk to the oncologist about other choices.

All cancers are different and PCa has at least 27 variants and some can be very aggressive what tends to called tigers. So the are no guarantees. I have not seen whether he has had a CT Scan and whether there is spread in his soft tissue as well as bone. As someone else suggested fill in the profile it helps in giving advice. Are you currently seeing a urologist and about to move to an oncologist. If so you may well get another perspective from th onco. Keep us in touch.

User
Posted 24 Mar 2016 at 12:27

Hi everyone, just wanted to update you all on Dad's progress. After we had such awful news on 2/3/16 we were all very concerned about yesterdays appointment with the oncologist. However, the news we got was great and we are all really happy. The oncologist has recommended chemotherapy along with the hormone treatment. Dad may also be chosen for the next arm of the stampede trial which will bring in radiotherapy too. The oncologist was so informative and lovely, he said that as Dad was otherwise fit and healthy he can see no reason why the spread cannot be curtailed.

I can't tell you how elated we felt when we left the hospital, we accept that the cancer is not curable but this news has given us real hope. My Dad is so positive and brave, he is such an inspiration to us all.

I hope that you are all okay, have a peaceful Easter

Love to you all

Dawn xxx 

User
Posted 24 Mar 2016 at 12:46

This is good news, Dawn. So glad you have an informative and supportive oncologist. Lets hope the chemo knocks Dad's cancer back for a long time. Regards,

 

Fiona.

User
Posted 24 Mar 2016 at 13:22

Well this is exactly why doctors shouldn't try to give a prognosis if they haven't got all the information. Really pleased for you and your sister that the oncologist was a more cheerful soul than the urologist!

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

User
Posted 24 Mar 2016 at 14:26

Glad the news was better Dawn and Sis,

We can't control the winds - but we can adjust our sails
User
Posted 24 Mar 2016 at 14:36
That's much better news and much more like what we would expect. Most doctors don't give a prognosis but they do tend to say things like "the hormone treatment may hold back the cancer for months or years" and people tend to hear that as a prognosis of months or a year. I'm not saying that's what happened here but it can be that way. I feel that I heard this when my OH was diagnosed, and five years later (Gleason 10) here we still are.

Anyway I'm delighted you have had better news, please keep us up with dad's progress,

Devonmaid

User
Posted 24 Mar 2016 at 17:12
Glad for your good news Dawn, it always makes you feel better when the news is good. My dad had a onco visit last week. Docs happy and bloods were ok phew. They asked about biosphonates for strengthening bones as his left leg is weak. The doc said he would save them for when the pain gets worse next visit in 12 weeks. Hope all goes well with your dad and will be thinking of you.

Anna

Xxxxx

User
Posted 24 Mar 2016 at 21:44

Hi Dawn,
Glad you have some better news about your dad,always gives everyone a boost for another wee while& great your dad is so positive too.
Good news is great, wish we could all get some

Eleanor x

 
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