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I am a reluctant newby here

User
Posted 03 Nov 2014 at 21:31

I am 49 and in august this year I noticed  simultaniously an increase in my night no1s, a pressure feeling near my coxix and very reduced fluid when with my wife so to speak. after 6 weeks I went to the docs who did a rectal exam and said that I should have a blood test and an ultrasound scan.


the results of these was a lump on my prostate plus two more lumps on my arota, my PSA reading was 342.


i then was referred to a consultant  who did the rectal thing , said although he usually waited for results of further tests was sure I had prostate cancer , I have since had a prostate biopsy, MRI and bone scan. I am seeing the consultant again on Thursday for the results of all that. He put me on male hormone suppressants straight away Before any of the tests.


i am now very scared, when having the  bone scan I could just see a small moniter showing my skeleton, it was all dull until it got to my pelvis where everything lit up like  a beacon and then went dull again in my legs, I know  I  don't know anything about scan images but it did not look right , Thursday seems a long time away.


my wife is very supportive but at the same time genuinely thinks I will be ok , somewhat misguided I think.  My dad is 82 and has had prostate cancer for 20 years, his PSA has never been higher than 20' my grandad died of prostate cancer at 88.


I can't get the darkest thoughts out of my head although I have already resigned myself for the near worst.


there is so much unfinished business in my life and I don't want it to stop, I want to see my daughter go to uni, graduate , get married and have kids,  my sons  discovering what they want from life and grabbing it, my wife getting gracefully and beautifully old with me , be there for my dad and mother in law when they need me in years to come, watch my football team  get promoted, carry on running ultra-marathons  but the dark thoughts say I may experience none if them.  I have always been rubbish with hospitals, just the thought of a needle makes me shudder , I get the feeling a needle will be the least of my worries.


i know that until Thursday I don't know anything but all that I read on web sites does not improve  my own personal amateur  prognosis. 


If you have read this, thanks as knowing someone probably will makes a difference,  I don't want to spoil my wife's  expectations until I have to and try hard to live every second of the next 2 days outwardly positively. 


I first wrote this 2 days ago and since then read so much more and had support from others but bizzarely it didn't occur to me to post this on the PCUK forum, shows how I am not thinking straight already doh! I am sure I will be back Thursday afternoon to find out from real people who have been there what it really means if I manage to pull myself together as I am sure I will be in pieces.

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 18 Jan 2019 at 22:34

Hi all.


There has been so much bad news on this site recently and far too many men being diagnosed with advanced prostate cancer that i thought i would  resurrect my first thread and update where i am to hopefully give a good story to balance some of the not so to encourage others not to give up if they have any control on their situation. i know i am luckier than many.


in a nutshell T4 n1 m1 a, psa 342 on diagnosis G9. early chemo and radiotherapy despite spread to lymphs in pelvis, aorta and throat, no bone mets.


reading my initial posts brings back memories of pure fear and sadness but...............


i have and continue to run some of the toughest ultra marathons in the world raising funds for prostate cancer uk all with advanced prostate cancer. in 6 weeks i set off for the arctic to race 380 miles non stop pulling a sledge solo, 2 weeks later i will be back in the Sahara racing 150 miles there.


i was put on abiraterone as my psa was rising again after chemo/rt/biclutamide less than a year after initial treatment. i was told that abiraterone may or may not work however this week , 3 years after starting abiraterone, my psa was its lowest ever 0.05, i have had minimal side effects from this or any of my treatments to date.


yes this is a rubbish disease, yes it messes with our bodies, heads, hearts, family and friends but if you are lucky enough to be able do things please do them and plan to do them. i could have easily given up 4 years ago, i know at times i wanted to but i look back now and realise how much of life i would have missed out on if i had given up. we can control more than we think most of the time.


i know the ride for me will end one day all too soon but i will have no regrets when it does by loving the life i have whilst i have it.


if i could have given one piece of advice to me 4 years ago in hindsight early on it would have been plan something good for tomorrow every day no matter what the day is going to be so that you never wake uo with the thought "what shall i do today" as thats when you leave space for the dark and sad thoughts and those do no good for anyone.


i hope you are able to enjoy something this weekend, www.makethemostofit.org never give up.


kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 04 Nov 2014 at 00:15

Okay, so the consultant is pretty sure you have prostate cancer and you are already prepared for that being confirmed on Thursday; what you don't know yet is whether it is contained in the gland and curable or whether you are looking at containment. I don't think you can read anything into being lit up on the monitor - that was probably just the dye they inject so that they can see the pelvic area clearly. It's the dark spots we all dread.

My advice would be to download the toolkit from this site (if you haven't done so already) and start writing down the questions you want to ask at the appointment. If it is contained:-
- what treatment options would the specialist think suitable for you?
- Is he only recommending his specialism and is it possible for you to also see an oncologist (if he is a surgeon) or a surgeon (if he is an onco)?
- If surgery is a possibility, should you stop taking the hormones?

If the cancer has already escaped the prostate:-
- where is the spread? Soft tissue, bone, lymph?
- what hormone treatment regime are they recommending? To continue with the one you have already started or change / add another?
- are there any trials at your hospital and are you a suitable candidate?
- if the spread is fairly local, is there any benefit in trying hormone treatment now with radiotherapy later?

In either case, you should also ask:
- your Gleason score and how that number is made up (a G7 could be 3+4, 4+3 or 5+2 and it makes a difference!!!)
- your staging (a number and usually a letter as well so T2b or T3a for example) ... you might get this along with an N symbol and M symbol as well
- what kind of prostate cancer it is (adenocarcinoma being the most common)

You are young but by no means the youngest - we have members in their early 40s. My husband was 50 at diagnosis and he was horrified to be sitting in a clinic where all the men seemed so old and all the nurses and doctors just kept saying 'you're very young for this'!!! It would be helpful to know a bit more about your dad and if you have never really discussed it properly, now is the time. He was young at 62 so I assume that he either had a low-risk type which has behaved itself all these years or he had radical treatment and managed to reach the magic of remission? Or maybe he has been on hormone therapy all these years? If you don't know the details, ask him about his story - does he know what his Gleason was? If he had treatment, how has that affected him since? We were fortunate when John got diagnosed that my dad had already been there and was willing to talk frankly to help us make sense of it all.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Nov 2014 at 09:39
Kev
to me it sounds like you have landed a really proactive Oncology consultant. Just about everything I have read in the last 6 months has suggested that at your stage of the disease and at your age and as you are strong and in otherwise great shape hitting the cancer with a baseball bat, quickly followed by chemical warfare and then a radioactive bomb is giving it the worst chance of surviving and you by far the best.
I wish you all the very best as you start on your treatent path

xx
Mo

Show Most Thanked Posts
User
Posted 03 Nov 2014 at 23:06

Hi,
Sorry to see you here, but welcome to the site. You don't say what the urologist? gave you as " male hormone suppressants" [your words] ? Your PSA, although high is not the highest on here, and I know that it is easy to say but try not to worry until you know more on Thursday, be positive, there are many more treatments now available to help. Have you downloaded 'The Tool-kit' from PCUK, it comes with a wealth of knowledge.

Ask away at any time as there are lots of knowledgeable guys and Gals on here willing to help.


Good luck for Thursday.

Chris.


PS. When you have some figures, can you up-date your profile, as it helps us to help you, after we know what treatment you are given / offered.

PPS. If you click on anyone's profile you can see what treatment they have had and are still having.

User
Posted 03 Nov 2014 at 23:21
Hi,
So sorry you find yourself here, but rest assured this site gives me nothing but comfort, It's difficult to offer any advice until you know if and what you are facing, try to remain optimistic and positive re Thursday and once you know and your ready to share then there will be plenty of support and guidance from the folk on here, maybe speak to one of the specialist nurses on the helpline to get you through the next couple of days.
wishing you well, Joanne.x
User
Posted 03 Nov 2014 at 23:28
Hi Irun

Firstly welcome to the forum that non of us wish to be members of but we are where we are, the members here have a wealth of experience so ask any questions you have, and remember nothing is taboo.

We all remember the start of our own journeys and can relate to the emotions you are going through, but once you know the whole picture ie the results,then things will ease as you come to terms with it all and have made your decision on your treatment path. Beware of trying to interpret the bone scan as I did the same and was convinced it had spread everywhere but found to my relief it hadn't so wait for the results and remember to plan what questions you want to ask your specialist and either write down the answers, or ask if you could record the conversation for future reference, also take someone with you, as it is a stressful time and you will forget what was said as your brain will find it hard to take it all in.

A PSA of 342 is high but the hormones you are on should bring that down, there are people with PSA into the thousands on the forum and still going strong, mine was 94.4 at the start 2 years ago and am doing OK. Order the toolkit from the site as it will help once you know the full picture.

Also something to consider is your diet, now I must stress this is a personal choice, but some of us have cut out dairy, red meat, eggs etc even though it might only give you a feeling that you are doing something to combat this, I found it helped me feel empowered and I lost weight so a bonus.

All the best

Roy

Edited by member 04 Nov 2014 at 10:04  | Reason: Not specified

User
Posted 04 Nov 2014 at 00:04

Welcome, but sorry for the reason that brings you here. It's devastating to be told you have PCa and one is likely to think of the worst scenario. However, your consultant has started you on HT to restrain the cancer and this along with others treatments if appropriate, could give you many years - how long could depend on the type of PCa you have and how well treatment works for you. Also, refinements to existing treatments and new ones being trialled or about to become available can be expected to extend lives of men with PCa. So do try to set aside those negative thoughts and be positive. Do keep us advised.

Barry
User
Posted 04 Nov 2014 at 00:15

Hi and welcome if you know what I mean. Re the bone scan it is quite possible that what you saw was the radioactive contrast that they injected gathering ready for you to get rid of it...

As already advised download the toolkit as it provides invaluable advice..

This without doubt is the worse time. Once you have the full results you will know what is happening and you will be able to gain an element of control.

Keep posting...everyone here will provide support

Bri

User
Posted 04 Nov 2014 at 00:15

Okay, so the consultant is pretty sure you have prostate cancer and you are already prepared for that being confirmed on Thursday; what you don't know yet is whether it is contained in the gland and curable or whether you are looking at containment. I don't think you can read anything into being lit up on the monitor - that was probably just the dye they inject so that they can see the pelvic area clearly. It's the dark spots we all dread.

My advice would be to download the toolkit from this site (if you haven't done so already) and start writing down the questions you want to ask at the appointment. If it is contained:-
- what treatment options would the specialist think suitable for you?
- Is he only recommending his specialism and is it possible for you to also see an oncologist (if he is a surgeon) or a surgeon (if he is an onco)?
- If surgery is a possibility, should you stop taking the hormones?

If the cancer has already escaped the prostate:-
- where is the spread? Soft tissue, bone, lymph?
- what hormone treatment regime are they recommending? To continue with the one you have already started or change / add another?
- are there any trials at your hospital and are you a suitable candidate?
- if the spread is fairly local, is there any benefit in trying hormone treatment now with radiotherapy later?

In either case, you should also ask:
- your Gleason score and how that number is made up (a G7 could be 3+4, 4+3 or 5+2 and it makes a difference!!!)
- your staging (a number and usually a letter as well so T2b or T3a for example) ... you might get this along with an N symbol and M symbol as well
- what kind of prostate cancer it is (adenocarcinoma being the most common)

You are young but by no means the youngest - we have members in their early 40s. My husband was 50 at diagnosis and he was horrified to be sitting in a clinic where all the men seemed so old and all the nurses and doctors just kept saying 'you're very young for this'!!! It would be helpful to know a bit more about your dad and if you have never really discussed it properly, now is the time. He was young at 62 so I assume that he either had a low-risk type which has behaved itself all these years or he had radical treatment and managed to reach the magic of remission? Or maybe he has been on hormone therapy all these years? If you don't know the details, ask him about his story - does he know what his Gleason was? If he had treatment, how has that affected him since? We were fortunate when John got diagnosed that my dad had already been there and was willing to talk frankly to help us make sense of it all.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Nov 2014 at 00:18

Sorry Bri - my post crossed with yours!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Nov 2014 at 09:37
Irun, welcome as Bri says welcome even though it sounds a bit odd
You will find as much or as little support as you think you need on this forum,
Lyn has posted an amazing reply for you, just about all you ever need to know for that vital meeting on Thursday.
I know you said you were holding back from your wife as you maybe do not want to distress her unnecessarily but Roy also made an extremely valuable suggestion. Have her with you at that next meeting, and if you can have that chat with her and you Dad too. Oncologists, urologists or surgeons all expect you to have someone with you.There will be way too much information and a lot of questions you might forget having an extra pair of eyes and ears and a hand to hold is really helpful. You have told us she is very supportive so she probably really wants to be there with you anyway.
The Gleason score that Lyn mentioned is about the most important piece of information at diagnosis but from the info you gave us I don't think you have had a biopsy yet, you will only get that score once you have had the biopsy.

Finally until you have an actual full diagnosis be very wary about reading too much on the internet it is extremely useful as a tool once you know what you are dealing with but quite dangerous before then.
I will be thinking of you on Thursday ad wishing you all the best
xx
Mo
User
Posted 04 Nov 2014 at 10:30

Hi Mo, he says in his first post that they have done a biopsy.

Irun, I was thinking about your wife last night and although she is being upbeat in front of you, I bet she understands just as well as you do. It is our job as wives, partners and supporters to be positive and she will perhaps be doing her best not to show you how worried she is. As Mo says, having her at the appointment will be much better for you both in the long run

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Nov 2014 at 14:01

Fantastic thorough advice from Lyn, as usual.

User
Posted 04 Nov 2014 at 19:14

Lots of good advice above Irun, as I'm sure you will appreciate at this tough time.


Just to mention; be wary of trying to cover the whole internet for information etc. Some is dubious. Here is good . Take it one step at a time & learn gradually but thoroughly the best information.


Be wary of any gloomy predictions you may be given by some medics. There are many men who exceed their predictions incredibly well. Your psa may seem on the higher side but it can be dropped dramatically under treatments.


Like yourself, I was started immediately on treatments before all scans were done. Actually before a biopsy was done. So it's not unique, just an experienced urologist knowing their job.


 


There has been a big leap forward in treatments available over the last couple of years or so . These will be available should you need them. So focus on what can be done rather than negative thoughts as best you can. There is plenty of support here as Mo has mentioned.


 


 

User
Posted 04 Nov 2014 at 23:02
My bad Lyn I missed that, sorry Irun, no doubt you will get the Gleason score on Thursday

xxMo
User
Posted 05 Nov 2014 at 22:03

Thank you al so much for responding to my (initial sadly) cry for some noise.


Such calm advice and I am sure that your advice and words will be relevant, I just have to get through tomorrow morning.


Sorry if I mislead you about my wife, she was there at the first consultant meeting and will be there tomorrow, she knows what I probably have but does not want to do any research or discuss with me until she knows what I actually have. I do get that but as you all know I may or may not be listening properly to everything that is said or hang on the wrong word and whilst I am a novice I do know a bit now about some of the treatments and side affects however it will all be new to her so that was my aim but that's too late now anyway.


I will stick some numbers on my profile as I get them and become an amateur expert about what they mean as time goes on but please please do give me any wise words you can think of.


One question I have is based on reading one of the other contributors notes on this site who over the last year or so has talked about getting the right consultant and if needs be going private? I have no idea who is good or not or if NHS v Private achieves anything other than a nice carpet on the floor? I do have private healthcare via work but have never used it as I have to have it in my job but have not been to a hospital for anything serious since I had my tonsils out age 6 and have not been off work sick for over 10 years so not being well is sooooo not me. 


Lastly, am I expected to agree with what they say there and then or do I get time, how do I make an informed choice when I am not informed?


Sorry

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 05 Nov 2014 at 23:32
Hi Irun

Once you have your results tomorrow you will be given your options, but usually surgeons will want to cut it out if appropriate, and oncologists will want to zap it, you will not be pressured to make a decision straight away, so take a short time to research and commit to the path you choose.

If I were you I would want to utilise the private sector as it will give you control of your treatment to some extent, and access to Surgeons and the latest equipment that may be in short supply in the NHS if having RT, Scans etc.

You have the option of a second opinion if you want it, and if you do go private as you will be given more time as you are paying for their time.

A while ago the top ten surgeons were published in the Daily Mail, so if that is your chosen path then you can google it, and make your choice, but with a high PSA it may not be an option, but until you know your results its hard to advise.

All the best and good luck

Roy
User
Posted 06 Nov 2014 at 08:00

Hi Kev,


No answers to your questions today because i hope you do not need the answers. it would be great to sit here in a few months time looking at your postings about pelvis floor exercises.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif


Give the kids a big hug as they go to school, they do pick up on things.


We both wish you all the best for today and really do know how your feeling.


Will be looking for your post later.


Best wishes


Si


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Nov 2014 at 09:43
Kev
just to lt you know I am thinking about you today and wishing you all the very best.
xx
Mo
User
Posted 06 Nov 2014 at 09:51

Hi Kevin,


Just wanted to wish you luck for today.  I, like most of us here, know what you're feeling right now. 


I have been really helped by joining this site, there's always someone with good advice. 


Keep in touch.


Steve

User
Posted 06 Nov 2014 at 14:06

Hi


Probably the worst news.


My biopsy came back Gleason 5+5 ie 10


Doctor said I was T3BN1M1 but then said it was in my lymph nodes but bone scan was clear unusually (so I don't get the M1 bit?)


Said can only contain/slow but not cure


Apparently I should be able to go on the "Stampede" trial which my oncologist said was good.


Under no illusions now, not quite borrowed time but I guess I wont see another 10 years, not sure how I will tell the kids ( I have read the Macmillan stuff on it but it still wont be easy).


Need a CT scan now to see if it has spread to other lymph glands apart from my groin. Then on Goserelin/Zoladex 10.8mg 3 monthly, no idea if that is whats best but I was given no other options.


Just got to get on with it now I guess?


Kev 

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 06 Nov 2014 at 14:45

Hi Kev,


So sorry to hear your news, time to sit down a digest.


There are loads of options your oncologist has just mentioned one.


You have my number if you need a chat. you need to clear up the staging ring your GP and ask for a copy of the scan report and stay away from Dr Google.


Stay strong mate


Si  


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 06 Nov 2014 at 15:49
Kev, I am so very sorry about your results. I am not in a position to advise you medically but you do need a little time to digest what you have been told and to ask for guidance on the grading of your cancer. There are others on this forum like Lyn and Roy who will be able to explain what all those letters and numbers mean.Also you can call the team on the PCUK site and ask the to go through things with you.

Right now I think you need emotional support more than anything , please take up Si's offer and talk to him, his diagnosis was worse than yours as he has extensive bone mets as well, but he can tell you all about his experiences with private care as well. If your company pay for it then in your circumstances I would use it. First of all you will get seen so much quicker, your tests will be repeated more often and you will get more time to ask questions. Most important of all you may also be given more treatment options.

There are a lot of tretaments out there and starting you on Zoladex is one of the most common first line treatments.

If your wife feels that she needs some support to, then ask her to join in and post, It is how I first got involved when I needed support and help.

Stay strong and until you have had a human being explain everything to you as Si says keep away from Mr Google.
xx
Mo
User
Posted 06 Nov 2014 at 16:21

My OH did the STAMPEDE trial and found the extra monitoring on bloods and extra appointments reassuring - so that is worth considering.


A lot to think about at the moment, so take a bit of time with someone who can explain everything and it may not be as bad as it first sounds to you.


Some people are on HT for 10 years plus. Lots of stories on here may reassure you a little.


You need a good onco. Try to get recommendations if you are unsure about yours.


The main thing is that you have caught it NOW and can start to do something about it.


All the best


Alison

Edited by member 06 Nov 2014 at 16:23  | Reason: Not specified

User
Posted 06 Nov 2014 at 20:29

Hi Kev,


 


Sorry to see you are dropped in towards the deep end . However , you have I suspect, more options of treatment which haven't been discussed until all the scans are done. Much depends on how adventurous your oncologist is prepared to be.


Really need to clarify that M1 part of the initial reports for a start.


If you are prepared to treat aggressively, then you could have many years ahead of you.


Once you get the full report it might be worth bouncing a few ideas around here. The trial might be a good step or it might restrict you from other approaches. Very hard to know at this time.


 


Meanwhile, you have to come to terms with this news & that takes a wee while to get your head around it all. Try not to overload on Internet info. It's like trying to catch a waterfall at the start.


 

User
Posted 06 Nov 2014 at 20:48

Hi Kev,


I have been following your initial posting I am so sorry that you have received this diagnosis today. We have all been through the feelings and emotions that you are experiencing know. Some on here are more lucky than others ie some are in the cure camp. I hope that you continue to post (If you find it helps you) there is a whole heap of expertise and knowledge on here.


I would whole heartedly echo what Mo has said you need to take some time to adjust and find the emotional support that you will need, either from family , friends or on here or a mixture of all of those. What ever works for you.


There are many men on here with a gleason 10 and hopefully they will come along to give support and advice. Rob has already added about early aggressive treatment. We often say on here that this a rocky road and  one thing about this forum is many men have trodden the road before you and are willing to help and guide you through .


There are only a few of us that have young children on here, mine are 10 and 14 and every parent has there own unique way of handling this sort of situation. If I can offer any advise on this subject it would be to wait until you are emotionally ready.


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 06 Nov 2014 at 21:30

Thanks everyone, overwhelming support everywhere.


Still a bit unsure about options as posts say there are options but most online advice, does not focus on Gleason 10 with all my stuff, just confused. I can see me just going with whatever and hoping for the best.


Feel free to be specific and point me in the direction of anything that I can put to the quack to dismiss or consider when I see him next Tuesday?


Bless to everyone on this forum who are also suffering and have taken the time to divert their valuable time to me, not that I ever did anything really bad in my life but I don't know if I deserve such kindness.


Kev 

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 06 Nov 2014 at 21:31
Hi Kev

Sorry to hear the news but there are plenty of tools in the box. I totally agree with Rob, you have to clear up the confusion with the M1, as you rightly say if the bone scan was clear this should read M0, have you seen this in writing or could you have mistaken the word none for the word one, also did they say how many nodes were affected and where. Take time to digest then once your head clears ask your questions and hit it hard and if you want a second professional opinion then don't worry about upsetting people, go for it. You may be only offered the treatments that are available at your particular hospital so your private healthcare may come in handy to shop around but it is ultimately your decision.

Maybe click on this link as it explains I laymans terms Many aspects and treatments regarding PCA.

http://askdrmyers.wordpress.com

A few of us follow his blogs


Roy

Edited by member 06 Nov 2014 at 22:04  | Reason: Not specified

User
Posted 07 Nov 2014 at 12:53

Hi Kev,


 


Until you have all the scan results & see what is offered it's hard to be specific. Don't want to raise false trails to follow which would just waste time.


You could certainly consider diet changes such as dropping any red meat; egg yolk, dairy produce and oil-cooked foods which many now believe slows progression. If you click on my name you can see some of what I have done to start you off. Which I'm convinced has helped.


 


Early chemo intervention is one possibility certainly. Our member Si here has shown excellent results with that. Or the Stampede trial might offer the Abiraterone + Enzalutamide hormone treatment option to hit it hard at the start. You just don't know the extent yet so ( as above ) it is pointless covering any other options as yet.


Get your results & consultant's advice. Then come back if you think we can help with choices. That's when further ideas can be discussed.


Sometimes, only treatments are offered which your local health authority agree to pay for. Approaches do vary so as Roy mentions a second opinion may be required. I found my local hospital very good & never went for second opinions. For others it appears to be worthwhile. It just varies it seems.


Get as much detail as you can. Biopsy & scan results ( print offs ). Can be useful in seeing details. Make good notes at meetings. Too easy to forget the odd sentence or remark . 

User
Posted 07 Nov 2014 at 14:30

Hi Kev,


First just to add my voice of support along with everyone else. My partner was diagnosed Gleason 10 last year with spread pretty well everywhere. If I could go back to last May, this is what I would have done in retrospect. I would have got my partner the skilled second opinion I sought out in April 2014  by which time the damn disease had become resistant to HT probably months before. The disease is so complex you aren't guaranteed to get the same treatment opinion from two different oncologists and our experience were that some were much more on the ball, aware of new treatments, trials and prepared to offer them than others.


The other thing I always say is never to be complacent about the disease though you need to find that difficult path between enjoying your life and coping with the diagnosis and treatment.


Although scans can not be entirely accurate, a scan three months post partner's diagnosis may have shown the disease was spreading despite low PSA and testosterone on the blood tests. Don't ever be afraid to ask or insist on something if you have concerns, sounds awful having to say that but sometimes it pays to shout !


If I'd known then about the CHAARTED Study, about starting men with advanced disease on chemo and HT instead of just HT when the disease is likely to be resistant to HT at some time, in our case much sooner than later, I would have hassled for the chemo and HT. Hindsight is such a wonderful thing ! You never know the outcome of treatments but you need to feel you have the best and most informed options available. Also , there are men on the forum who have done well, even with a high Gleason score, everyone is different.


In terms of emotional support for me, as a partner, I found the PCUK nurses very good, this community was an absolute lifeline. I have since found Macmillan are brilliant. The health service was less able to understand the strains on us as a couple whereas our local palliative care team were fantastic on that front. Well, these are just my observations.


I hope you will find a path for yourself which is the right one and wish you all the best,


 


Fiona.

User
Posted 07 Nov 2014 at 23:22

Just wanted to say I am thinking of you.  My husband was diagnosed at the age of 44 just before Christmas almost three years ago and we had lost both his parents to cancer, his Mum only 6 months before his diagnosis.  Our children were 13 and 16.  We waited until just after Christmas to tell them.


The hormone therapy does take the PSA count down drastically and its good to see those numbers dropping.  The toolkit from this site is excellent, as is Macmillan support.


Humour has been the thing that has got us through the dark points.  Some people have found this incomprehensible but it has worked for us.


Steph


 

User
Posted 08 Nov 2014 at 02:46

Hi Irun,
the M1 is often linked to bone mets but actually, M denotes any spread to other parts of the body apart from lymph or nearby organs such as bladder so it could be that the M1 in your case refers to these two lumps you said you had on the aorta??? What did the consultant say about that at your appointment?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Nov 2014 at 19:21
Thanks again everyone, I now have some good questions to ask my specialist Tuesday, I just hope he is open minded. I am lucky right now to not have any ill effects at all apart from libido wipeout! I am just confused about work as about every hour I get all emotional just by a thought or word or no reason at all and that is not going to be good in the office or with clients, seeing my boss Thursday so see what his view is.
Soo many drug names / tests and the chemo or rt but can't work out what to do still or what to push for but logic to me says zapping in some way has to be worth a go with ht at the same time but how don't know that is better in my case than just ht as whilst I want as long as I can I want as much as possible to be not a burden on my family and to be as happy as I can be, chemo appears to maybe offer a few more months but rubbish feelings/ health along the way, I hate being in this position. Time to cry again.

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 10 Nov 2014 at 16:27

Told the kids yesterday (age 9,14 and16) lots of tears and hugs but had a normal afternoon. The eldest two live with my ex so I went round there when I dropped off last night and told her too, baring in mind we don't usually speak she was very sympathetic and concerned. I am worried about my oldest as she is the most sensitive and I think gets what the big C is.


Had a better day today although still get upset thinking about all the things I probably wont see or do that I had previously expected to.


I am seeing the specialist tomorrow and as at this time the plan is to just put me on hormone injections 3 monthly and see if he can get me on the stampeded trial I will also ask him about:-


Why no chemo


Why am I N1M1, I get the lymph bit but where else is it (they said the seamen sacks however I thought that was the B bit of T3B ?


Why no radiotherapy


Why no surgery to remove lymph and prostate


Why not Olaparib


Why not Xtandi


If anyone knows the responses to the above ie if I am using Dr Google too much tell me equally tell me if there are other things I should be asking now?


Thanks in advance


Kev


 

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 10 Nov 2014 at 19:50

Fair questions to ask & it shows consultant you are being pro-active. Although usually best not to mention the internet.


Make notes to all answers & don't be afraid to ask " why ".


Get as many bio details as you can. These can be useful later on even if not apparently appropriate now.


For example, I would be asking for a copy of the biopsy report.


 


Let us know how you get on & Best wishes.

User
Posted 10 Nov 2014 at 20:01
Kev
I am on a course all day tomorrow but will be thinking of you and hoping that you are able to get much more information and action. It must have been really hard telling your Children and even your ex wife but now that there are no elephants in the room you may feel a bit more at ease in dealing with all that is to come.
Stay strong, take lots of notes, ask as many questions as you can think of and try and get the name and telephone number of the clinical nurse specialist assigned to your case, if they say there isn't one,ask them to give you one so that you can contact her/him whenever you need to.
xx
Mo
User
Posted 11 Nov 2014 at 08:03

Good Luck today Kev


Get the staging sorted, then the choices of treatment become easier.


Best wishes


Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Nov 2014 at 21:25
Hi , sorry I have been away, lots to think about.
Visit to consultant on Tuesday better, he now feels that going on the stampede trial is not the best option as I may not get the new drug and just be left on hormone injections 3 monthly. Says that at my age and fitness (still running 4 days per week x7miles easily).
Said that we should be more proactive and not risk stampede lottery at my age.
So now zoladex 3 monthly (to replace 3x cyproterone acetate per day plus one bicualutamide per day (says that this is kind of like the stampede drug but not quite so good) then 6sessions of chemo , 1 every 3 weeks starting jan, then when that has finished 6 weekly sessions of radiotherapy.
So I feel that we are doing something, I had a CT scan which confirmed that cancer in all my lymphs but not bones and consultant felt a much better prognosis than the oncologist had originally depressed me with.
I feel happier however no Idea if that is a false happiness, so after any opinions that anyone out there has regarding the suggested action?
Thanks in advance

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 16 Nov 2014 at 21:41
Well that's an oncologist on a mission, very proactive response.

I'd be delighted if it were me as he is giving you the best possible chance here.

Good news, if a little daunting.

Good luck
Allison
User
Posted 16 Nov 2014 at 23:28
Hi Irun

Sounds like he is going to throw all at from the start, and hit it hard, which is good news. Did you sort out the confusion with the M1?

Good Luck

Roy

User
Posted 17 Nov 2014 at 09:39
Kev
to me it sounds like you have landed a really proactive Oncology consultant. Just about everything I have read in the last 6 months has suggested that at your stage of the disease and at your age and as you are strong and in otherwise great shape hitting the cancer with a baseball bat, quickly followed by chemical warfare and then a radioactive bomb is giving it the worst chance of surviving and you by far the best.
I wish you all the very best as you start on your treatent path

xx
Mo

User
Posted 17 Nov 2014 at 14:02

Hi Kev,


 


Sounds good to me. I was concerned about the Stampede lottery which might have given you HT only for example.


Your Onco sounds a good one !


You will still have the heavier duty HT treatments if ever required in the future.


 


When you say all  lymphs, can you ascertain if they mean pelvic ones or more widespread. The R/T treatment suggests such ( locally ) but worth checking. Also, will the prostate be treated with full radiotherapy ?


I'd be very pleased with this pro-active approach which actually is more in line with the longer & better researched breast cancer approaches. Hit it hard and fast.


 


Should you be happier ? Yes, you should. It will be a bit of a rough time for a while but do-able. And there will be support & tips here to help you along I'm sure.

User
Posted 17 Nov 2014 at 14:38
Thanks again everyone, very reassuring. The n1m1 bit is about the cancer being in my groin area lymphs and outside my groin area lymphs as it apparently refers to any cancer spread outside the groin, luckily it's not in my bones though. Feeling good about it, am getting tired easily though, is that the cancer or the hormone drugs?

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 17 Nov 2014 at 15:08

Could well be the HT kicking in + the aftershock of diagnosis which drains you for a wee while. Your body should adjust to the hormone changes but some fatigue can be part of the territory. Try to get sufficient rest time as that does help the body overall.

User
Posted 13 Jan 2015 at 19:38
Hi all. My first chemo today.
First a big thank you to all the messages of support, big boost this morning when I was feeling low.
Next my just giving site for my Brighton marathon attempt is now over £3k for PC uk which is great to give something back
Next the consultant said my PSA had gone from 342 in October, 65 November to only 3.6 today, he we pleased too. My testorone was down from 7 to 1 too
Finally the chemo, by some fluke the nurse was the sister of a good friend of my wife's, went really well, no affects so far but am not naieve enough to think that I will be 100% for the next few days.
So a good day all round, can't think it could have gone better.
Thanks again everyone.
Kevin

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 13 Jan 2015 at 20:21

Hi Kevin,


Glad you had a good day and everything went well, you also sound very positive which is a very good attribute to have when fighting this disease. Hope everything continues to go well for you, good luck with the rest of your treatment.


Regards,


Gerry

User
Posted 13 Jan 2015 at 20:32

Good for you Kevin for being so positive.
Wishing you a good night of restful sleep.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 13 Jan 2015 at 20:39

Great news mate, hope it continues.


Keep in touch


Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 13 Jan 2015 at 20:46
Great news Kev on all fronts long may that continue.
xx
Mo
User
Posted 13 Jan 2015 at 20:52

Glad it went as well as it could Kev

All the best

Bri

User
Posted 13 Jan 2015 at 21:29

Good stuff Kev,

glad to hear you are responding well to the treatment to date.
Hopefully chemo will be another tool to push things onwards.

Thinking of you,

Kevin

p.s. Kev / Kevin, one of us is going to have to change our names :)

User
Posted 14 Jan 2015 at 02:13
Hi Kevin,
Really pleased everything went well for you today. Great news about your PSA figure too. Hope everything continues to go well for you.
Good luck with your plans for the Brighton Marathon, I'll certainly support you, if I ever get chance to earn any money again. I'm still sulking about having to cancel my Reading Half Marathon entry due to my heart problems.
Anyway, hope the treatment continues to go well.
Steve.
 
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