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Wish I wasn't here - advice needed

User
Posted 18 Dec 2014 at 14:27

Hi all

I was diagnosed with prostate cancer three weeks ago; after the MRI and bone scan I was told last week that it had spread to the pelvis (although not to the lymph glands or any organs or soft tissue). The Gleason grade is 9 and my PSA is (or was when I had my blood test back in early November) only 7.5. I've been given tablets preparatory to getting the hormone injection next week.

I see the oncologist on 31 December and would appreciate knowing what to ask her. The hospital I'm being treated at is part of the clinical trial for the early chemo, which I've read has helped give people a bit more time. What else should we be asking or finding out about beforehand.

 

It would also be good to get some optimism - I'm 52 and don't feel the slightest bit ill, and I think I'm still in heavy denial - so any stories of surviving years with a similar diagnosis would be appreciated.

User
Posted 20 Dec 2014 at 21:58
Hi there

It is such a frightening and strange time, waiting for those results and not knowing the extent of the cancer and then, all of a sudden, you do know and the worry starts in earnest.

I would like to try to give you some hope. My husband John was diagnosed four years ago at Xmas time, aged 61, Gleason 10, PSA 25, spread to local nodes and to hip and spine, no soft tissue spread. Well we thought that the grim reaper was knocking on our door and we were so scared. Fast forward to today, latest scans show growth only in the hip, no new lesions and he seems pretty much the same as he was four years ago. Yes we have had some ups and downs and not everyday is a good one, but most are.

If someone had told us four years ago that there would be little change in the bone Mets today, I'd have kissed them.

John has had Zoladex, Casodex and Stillbestrill and is expecting chemo in the near future (in fact it was scheduled to start this month but the head honcho decided to keep it in reserve - a step we don't really agree with on reflection). Anyway, the point is, things haven't changed that much in that time, I'm not saying it's how it will be for you as every man seems to follow a different path, but four years on, we are very happy that he is still with us and still very much the mainstay of the family. We have sacrificed a few things, one of them being the obvious but others are mainly caused by the side effects of the treatment, john has a nice pair of size 40 DDs from the stillbestrill, is often breathless and has limited physical strength after four years with no testosterone. He has a poor memory and has shaky hands and is a bit unsteady. We find this all livable with compared to the alternative.

I hope this hasn't worried you and I'm sorry I haven't answered your question on what to ask, but I wanted to let you know that life can be longer than you think after diagnosis and pretty good too. Also please take a look at the profile of Si-Ness, who also is young and has a high Gleason score plus spread.

Wishing you the best of luck

Allison

User
Posted 20 Dec 2014 at 22:03

Armiston,
Just in case you don't know how to find a profile, click on the person's name under their avatar picture and it should bring it up.
Apologies if I am a grandmother teaching you to suck an egg but not everyone knows.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2014 at 20:53
Hi armiston, like u I was recently diagnosed, gleeson 9, in my lymphs round my body but not bones. PSA was 342 but after a few days of zoladex 65 so a month on I am hoping for much lower. Very much like u, I have no idea what is really right, I start chemo in 2 weeks for 18 weeks then RT after for 6 weeks. I feel good ( started having a few sweats every night in bed when asleep). The forum has been of comfort and I have generally eaten better but not at the expense of living life, I already exercise loads and like u are young ( relatively) at 49. The way I see it more is better from what I have read so I am happy to be drugged/ zapped as at worst I will feel ill for a few months with no other change however hopefully the big c will be a smaller c . I would only be scared of " watchful waiting" coz at Gleason 9 what are they waiting for? Hope all has gone well, like u telling teenagers not great. I am not in denial but want to carry on as best I can until I can't which I believe will be years away. Have a great new year, if up ever want to talk private message me and we can share stuff , 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 21 Dec 2014 at 18:17

Hi,

I was diagnosed at 51 with a G9 and local spread. That was over ten years ago.

 

You mention spread to pelvis. I would be asking Oncologist if any Radiotherapy can be targeted  if only a small area is involved. Just at the least, to be clear in your mind before chemo. If there are less than five areas ( mets )  in the pelvis involved it is an approach being used in the U.S. subject to full scan results of course. Hard to say more without knowing your full details of course. But do ask & be satisfied with any answer given. If you don't ask, you may not be told.

Early chemo is a newer approach so it's difficult to judge longer term results obviously. However, it is likely that P.Ca. will follow other cancers in that chemo is used much earlier than in the past. 

 

Diagnosis is a shock. In time , as you begin to understand more, the confusion does ease & treatment gets underway. Although it may seem like you are trying to catch a waterfall in your hands at this time it will become much more manageable.

User
Posted 29 Dec 2014 at 10:44

hi,i have been reading about what people eat and what they dont eat,i noticed 1 thing from rob and that peanut butter was bad for pca,i have read elsewhere that organic smooth peanut butter is okay for pca i have been using it for a while on my soy bread.any thoughts on this please.

User
Posted 30 Dec 2014 at 17:39

Thank you all for your comments and especially those of you who have been able to say that 3,5, 10 (!) years in you are still feeling good. 

I didn't tell anyone else before Christmas (my wife came along with me to the initial consultation) and had a nice, boring, family Christmas (although I had to sneak out once or twice for a bit of a weep). I told my teenage kids last night and notwithstanding a few tears, they've taken it well - although I guess that the impact of the news takes a while to sink in. Will be telling family and friends over the next couple of weeks.

We're off to the oncologist tomorrow, so thanks for your advice on questions. We've asked the Macmillan nurse to also sit in on the meeting with us so that there are three pairs of ears listening and we can compare notes afterwards.

I am finding it difficult to read about the topic as it conflicts with the powerful denial that's still doing a grand job of keeping me going, but I will be forcing myself to do more research over the next few weeks.

Speak to you all soon.

 

Don

User
Posted 30 Dec 2014 at 18:07

Armiston, although my other half readily accepted the diagnosis he would not research it or find out about treatments that were available. Not until I had to get really tough about it as we were due to see the oncologist for a decision.

Knowledge is power. At least you'll have the Macmillan nurse with you which will be a great bonus.

Good luck with tomorrow. Fingers crossed for you.

Sandra

We can't control the winds - but we can adjust our sails
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User
Posted 20 Dec 2014 at 18:28

Hi welcome to the group, very strange being told you have cancer when you feel well the same as me I have never had any symptoms ether but was told I had cancer in September had prostrate removed early Dec and still had doubts even just before op of diagnosis ,there is always hope and members here with similar situations to you will hopefully reply .Andy

Edited by member 20 Dec 2014 at 18:30  | Reason: Not specified

User
Posted 20 Dec 2014 at 19:00

Hello Armiston and welcome

I am unable to answer any questions for you as our situation was different.
However, there are very knowledgeable folk on here who will doubtless be along to give you advice.

All I would say is download or obtain a hard copy of the "Tool Kit". A set of booklets dealing with cancer, it's treatments etc.

If can go to the Home page, click on information and the Publications tab and take it from there.

Good luck and hang in there. Many men who can talk to you on here.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 20 Dec 2014 at 21:58
Hi there

It is such a frightening and strange time, waiting for those results and not knowing the extent of the cancer and then, all of a sudden, you do know and the worry starts in earnest.

I would like to try to give you some hope. My husband John was diagnosed four years ago at Xmas time, aged 61, Gleason 10, PSA 25, spread to local nodes and to hip and spine, no soft tissue spread. Well we thought that the grim reaper was knocking on our door and we were so scared. Fast forward to today, latest scans show growth only in the hip, no new lesions and he seems pretty much the same as he was four years ago. Yes we have had some ups and downs and not everyday is a good one, but most are.

If someone had told us four years ago that there would be little change in the bone Mets today, I'd have kissed them.

John has had Zoladex, Casodex and Stillbestrill and is expecting chemo in the near future (in fact it was scheduled to start this month but the head honcho decided to keep it in reserve - a step we don't really agree with on reflection). Anyway, the point is, things haven't changed that much in that time, I'm not saying it's how it will be for you as every man seems to follow a different path, but four years on, we are very happy that he is still with us and still very much the mainstay of the family. We have sacrificed a few things, one of them being the obvious but others are mainly caused by the side effects of the treatment, john has a nice pair of size 40 DDs from the stillbestrill, is often breathless and has limited physical strength after four years with no testosterone. He has a poor memory and has shaky hands and is a bit unsteady. We find this all livable with compared to the alternative.

I hope this hasn't worried you and I'm sorry I haven't answered your question on what to ask, but I wanted to let you know that life can be longer than you think after diagnosis and pretty good too. Also please take a look at the profile of Si-Ness, who also is young and has a high Gleason score plus spread.

Wishing you the best of luck

Allison

User
Posted 20 Dec 2014 at 22:03

Armiston,
Just in case you don't know how to find a profile, click on the person's name under their avatar picture and it should bring it up.
Apologies if I am a grandmother teaching you to suck an egg but not everyone knows.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 20 Dec 2014 at 22:33

My husband Tony (66) was diagnosed in September with multiple bone mets, Gleason 9 and a PSA of over 2000 (honestly!). As well as hormone injections, he has now begun a course of early chemo, not as part of a trial but because interim results of a trial in the US (CHAARTED) show a significant survival benefit. His PSA was down to 26 by the time chemo started.
He's only had one infusion of docetaxel, and so far is feeling fine, with minimal side effects. I have posted on this in the Advanced Cancer section of this forum and will update it from time to time. We are hoping that embarking on chemo when he's feeling fit and strong will help him tolerate it better than some who are already ill and weak by the time they have it.
You may want to ask your oncologist if having chemo at this stage would affect your entitlement to further chemo or other treatment later on - ours said no, although the rules seem to change quite quickly.
We do understand your sense of shock and denial. It is only really now, three months on, that we are really accepting what is happening and learning to live with it. And we know, as you do, that it is not easy to submit to debilitating treatments when you feel quite well. I am finding this forum a great source of information and support, and hope you will too.
Marje

User
Posted 20 Dec 2014 at 22:58

Hi and welcome to the place no one wants to be but is a great place for support. It is hard to give precise advice as each PCa can be very different. But I can say I was 59 when diagnosed, PSA 7.5, Gleason 9 and bone mets in the sacram, hips and lower back but no soft tissue spread. So some similarities to your diagnosis I guess. Anyway I have been on hormone treatment for nearly three years and though my PSA is rising have not been deemed castrate resistant so awaiting second line treatment, probably soonish and then chemo. Not been offered early chemo and to be honest happy to wait until I am castrate resistant.

Like Allison's husband John, I have some side effects and it is the fatique and muscle loss and body weakness which does seem to increase. But despite this I am still working full time and living life to the full. Getting your head around this is, in my view, vital to making sense of it all and recovering a focus on life and living, no matter what the future might hold.

Good luck in your journey and there are plenty of us here to give you support, advice and encouragement.

User
Posted 21 Dec 2014 at 18:17

Hi,

I was diagnosed at 51 with a G9 and local spread. That was over ten years ago.

 

You mention spread to pelvis. I would be asking Oncologist if any Radiotherapy can be targeted  if only a small area is involved. Just at the least, to be clear in your mind before chemo. If there are less than five areas ( mets )  in the pelvis involved it is an approach being used in the U.S. subject to full scan results of course. Hard to say more without knowing your full details of course. But do ask & be satisfied with any answer given. If you don't ask, you may not be told.

Early chemo is a newer approach so it's difficult to judge longer term results obviously. However, it is likely that P.Ca. will follow other cancers in that chemo is used much earlier than in the past. 

 

Diagnosis is a shock. In time , as you begin to understand more, the confusion does ease & treatment gets underway. Although it may seem like you are trying to catch a waterfall in your hands at this time it will become much more manageable.

User
Posted 29 Dec 2014 at 03:09

Hi Armiston,
Apologies if someone has already said this but at your appointment with the onco I would be asking for confirmation of the type of prostate cancer they found in your biopsy samples. Adenocarcinoma is the most common but there are also many other types, some of which need an unusual treatment regime or have particular ways of behaving.

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

User
Posted 29 Dec 2014 at 08:41

Hi armiston,

Sorry that you find yourself here, but now that you are here with a confirmed diagnosis, the sooner you start getting to grips with what you are dealing with, the better for you and those around you.  

 

Many men here had no symptoms at diagnosis, me included, and are diagnosed as a result of a routine check having reached a certain age.   Often overt symptoms mean a bigger problem and limited treatment options.  Something to be optimistic about that you have been diagnosed relatively early.

Your condition is not as bad as some here, but is worse than others.  Those worse off than you will consider you fortunate.  That is something to be optimistic about.  The view is all about from where you are standing.  

That any spread has occurred is not ideal but the fact that it has not spread too far, is a good thing.  Look for small victories in the bigger battle.

Do you have any other PSA readings to compare to with, and dates taken?

Moving forward, it would be beneficial to prepare thoroughly for your meeting with your Oncologist.  I note that you say "we" when you are going , 2 sets of ears are better than 1 and you will likely forget some of what is said to you, and forget to ask some burning questions.  

A notebook or a sheet of prepared questions would help you remember what to ask and if you write down what is said help you remember the answers.  Your Oncologist should not be phased by this.  They will have been down this road many many times, this is your first time and to you significantly more important to you than it is to them.  I am not well versed enough to offer questions, but many here are and will no doubt suggest in due course.  

I am not sure from your post if you have decided on your treatment option yet?

atb

dave

 

 

User
Posted 29 Dec 2014 at 10:44

hi,i have been reading about what people eat and what they dont eat,i noticed 1 thing from rob and that peanut butter was bad for pca,i have read elsewhere that organic smooth peanut butter is okay for pca i have been using it for a while on my soy bread.any thoughts on this please.

User
Posted 29 Dec 2014 at 12:58

Radar,

from my personal experience, there is no 100% guarantee eating this or missing that will protect you, if only it were that simple we'd all be doing it,  where is the hard scientific evdence...

User
Posted 29 Dec 2014 at 14:26

I don't hold with a lot of the Jane Plant devotion but there is enough other reliable research (in my view) to persuade me that whilst most nuts are good for men with PCa, peanuts are an absolute no-no.

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

User
Posted 29 Dec 2014 at 17:55

From memory, it is the peanut oil which is detrimental for us. As with some other oils.

One peanut is unlikely to hurt but the peanut spreads will have peanut oil in them.

Hazelnut or Almond nut butters are thought to be better as an alternative.

 

Titanic, there are now numerous studies narrowing down the o.k and not so good foods for us. Even the NHS is suggesting low red meat & dairy after all these years !

Seek and ye shall find.

User
Posted 29 Dec 2014 at 20:21

To be honest I feel that what you eat and drink is part of the solution - but not the full solution. I have looked at many 'scientific papers' showing that what goes into us whether we do or don't have prostate cancer can help either prevent or manage the disease.

My Gleason is only 7(3+4) but my PSA did fall from 13.8 to 11.8 after eating 5 brazil nuts a day and drinking a glass of pomegranate juice (advised in something I read) and whilst this it is not conclusive that they caused the drop they may have done and so I have continued taking them.

dl

User
Posted 30 Dec 2014 at 17:39

Thank you all for your comments and especially those of you who have been able to say that 3,5, 10 (!) years in you are still feeling good. 

I didn't tell anyone else before Christmas (my wife came along with me to the initial consultation) and had a nice, boring, family Christmas (although I had to sneak out once or twice for a bit of a weep). I told my teenage kids last night and notwithstanding a few tears, they've taken it well - although I guess that the impact of the news takes a while to sink in. Will be telling family and friends over the next couple of weeks.

We're off to the oncologist tomorrow, so thanks for your advice on questions. We've asked the Macmillan nurse to also sit in on the meeting with us so that there are three pairs of ears listening and we can compare notes afterwards.

I am finding it difficult to read about the topic as it conflicts with the powerful denial that's still doing a grand job of keeping me going, but I will be forcing myself to do more research over the next few weeks.

Speak to you all soon.

 

Don

User
Posted 30 Dec 2014 at 18:07

Armiston, although my other half readily accepted the diagnosis he would not research it or find out about treatments that were available. Not until I had to get really tough about it as we were due to see the oncologist for a decision.

Knowledge is power. At least you'll have the Macmillan nurse with you which will be a great bonus.

Good luck with tomorrow. Fingers crossed for you.

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Dec 2014 at 20:53
Hi armiston, like u I was recently diagnosed, gleeson 9, in my lymphs round my body but not bones. PSA was 342 but after a few days of zoladex 65 so a month on I am hoping for much lower. Very much like u, I have no idea what is really right, I start chemo in 2 weeks for 18 weeks then RT after for 6 weeks. I feel good ( started having a few sweats every night in bed when asleep). The forum has been of comfort and I have generally eaten better but not at the expense of living life, I already exercise loads and like u are young ( relatively) at 49. The way I see it more is better from what I have read so I am happy to be drugged/ zapped as at worst I will feel ill for a few months with no other change however hopefully the big c will be a smaller c . I would only be scared of " watchful waiting" coz at Gleason 9 what are they waiting for? Hope all has gone well, like u telling teenagers not great. I am not in denial but want to carry on as best I can until I can't which I believe will be years away. Have a great new year, if up ever want to talk private message me and we can share stuff , 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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