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Bone metastasis to spine and pelvis

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User

Posted 12 May 2016 at 22:12

Hi all, my name is Polly i'm new to the online community and this is my first post - unfortunatley not a happy one to start with.

My stepdad (63) has recently been diagnosed with advanced prostate cancer. His story so far is that we found out he had prostate cancer and a tumour on his bladder in March. After having an operation to remove the tumour we then found out from a biopsy that he had advanced prostate cancer with a Gleason score of 8/ PSA 15. Following this he had some bones scans, and we have found out today that it has now spread to his spine and his pelvis.

He started taking his hormone treatment last Wednesday(4th May) following his scan, he's currently on Bicalutamide, then he will have to have the hormone injections. The doctor today informed us that he is being referred to an oncologist and he will most likely have to have 'early chemo'.

The whole experience has felt so rushed. Nurses have rushed conversations with me after waiting days for a call back, then say they only have a minute to speak. Even today I felt like the doctor just gave the results of where it has spread and hurried us out the door within 5 minutes. I feel so frustrated after waiting days to get any answers and they still just hand you a booklet and just rush you out. I'm the type of person who wants to have as much information as possible so I can help as much as possible and know what we have to do to fight this.

I'm just hoping for any words of wisdom or experience that anyone can offer. I've spent most evenings reading about diet and things we can do, and all the doctors say is, 'oh well we just recommend a healthy diet' - but give no context to what this means and expect you to find out!

My stepdad is also a very physical man, his profession was a gas engineer and he's normally someone who on his day off would decorate the whole house. Now due to being told it has spread to his bones and will not be able to go back to work, and struggling with aches and pains i'm worried this is going to affect his mental health and positivity to keep going!

I'm just wondering if anyone else has had it spread to these areas, and how they feel the hormone treatment / early chemo or any other treatment has been for them? - I'm hoping positive! My mother is struggling to cope, so i'm trying to support them both and be as practical and positive as possible to keep us all going on this new journey and life we will face together.

Polly

User

Posted 13 May 2016 at 12:44

Hi Polly,

A welcome from me to, i was diagnosed three and a half years ago with extensive mets throughout my torso, i had Chemo two weeks after being diagnosed with great results.

Still working still drinking to much and still eating all the wrong food and still having great times with my 12 year old twins.

As for waiting a month or two to see an oncologist that is not right, if your FIL has mets keep pestering them for an earlier appointment.

If you want to chat anytime just drop me a message.

My best wishes

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 May 2016 at 14:26

Hi Polly,

A little more reassurance and hope for you. It's nearly 3 years since I was diagnosed. I'm a Gleason 9. I've just been on various types of HT in this time. Early chemo wasn't a choice back in mid-2013. As others have already said it is now the treatment of choice so feel reassured. My near 3 years on HT has been a walk in the park. One day it won't be. But that's tomorrow. Today I live and enjoy life.

As far as diet is concerned I have a healthy diet, little or no processed food, the 5 a day et al. However I still drink milk (sod that Yak's milk or whatever it is that is meant to better for us), enjoy beef, lamb, pork, chicken, game, and I'm still breathing!

And the odd pint of real ale has been known to touch my lips (but not for long).

Best wishes.

David

Edited by member 13 May 2016 at 14:32 | Reason: Not specified

User

Posted 13 May 2016 at 16:21

Good Lord! How terrible that he had the op and only afterwards did they do a bone scan. Don't make the mistake of assuming that the spread only happened afterwards .... it doesn't happen that quickly.

Also, I wouldn't be too freaked out by a wait of a month or two to see the onco. Your stepdad is having appropriate treatment, the hormones will be starving the cancer so actually if you see the onco quickly it will be too early to tell how well dad is responding.

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

User

Posted 13 May 2016 at 18:36

Dear Polly,
A belated welcome from me too.

I can't offer advice regarding your stepdad's cancer as our journey is different, but what is common to all of us is the shock of diagnosis, the fear, the worry, the depression.

I'm not going to say all will be well, we are all different in our reactions to treatment, whether that be physical or mental but you're fighting for him so that's great.
What I can say is that as life settles down you will all begin to cope better. All of you, not just stepdad. It just becomes your new "norm".

You want to do the very best you can to give him the best chance he has and no man can ask more of a daughter.

When you go for appointments have your list of questions written down, (This is where the Toolkit comes into its own).

Take a pen and write down the answers. Don't let anyone rush you. This information is important to all of you so just check before you leave that you are satisfied you have asked what you wanted to ask.

What can they do. Physically turf you out? Show they are impatient with you - yep - they are likely to do that. They are run off their feet with too many patients and too little time but you and your stepdad are not numbers to be shuffled around.

Each decision he makes regarding treatment should be made with all the facts before him or it isn't an informed choice

As far as diet goes a lot of men leave off dairy, red meat etc. and increase red fruits and lots of veg.

There is a book called
"Healthy Eating: The Prostate Care Cookbook published in association with Prostate Cancer Research Foundation (Healthy Eating Series) Paperback
It can be expensive to buy new but I got a copy on amazon for 1p plus post and packing of £2.80 so it didn't break the bank.

Good luck and best wishes
Sandra

Edited by member 13 May 2016 at 18:47 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 13 May 2016 at 20:07

Hi Polly

My hubby was diagnosed with advanced disease in Dec 2010 at aged 61, Gleason 10 and spread to pelvis, spine, top of leg and lymph. That's over five years ago! No chemo for us, but whatever is keeping the cancer under control we are pretty happy about it. So there lots of hope, don't despair. We don't follow any diet either but no alcohol due to the number of drugs needed, still I try to make up for it.

Best wishes

Devonmaid

User

Posted 15 May 2016 at 09:32

Hi polly

Don't give up hope, your step dad is at the beginning of the treatment plan and so there still will be many options to step your way through. I know it's not the best news to be told of metastatic spread to spine and pelvis but am sure once you start seeing a response to the hormone meds your mind set will change. It will be quite a roller coaster of a ride with a few emotional ups and downs.

My husband was diagnosed 2010 with Gleason 4/5 in lymph nodes and several bones. So now 5 and a half years later we are still here. Have never enjoyed so many holidays and breaks away!!!lol. It's now throughout his spine but it's not stopping us going out for many sunny walks.

Look forward to hearing of a good response to treatment for your step dad.

Take care,

Lesley x

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User

Posted 13 May 2016 at 10:05

Polly,

The shock of the diagnosis does take it out of you but you are right to seek as much info as possible so that you can all make the right choices. Getting the PCUK toolkit from this site is certainly a must. It's informative and clear. Also talk to the nurses online if you want clarifications. I have had bone met spread for over four years so far so there could still be lots of time. Until last week I continued in work and retired now as a positive choice. Early chemo is the norm now and this should give him some symptomatic relief and may allow him to return to work if he wishes. I haven,t had chemo yet as this was not the norm for PCa four years ago. If your dad,s cancer turns out to be slow goring and only time will tell you that then there is probably plenty of time. Some cancers are very aggressive and this accelerates timetables but again only time will tell. There are 27 different types of PCa so each individual has a personal journey but people will be on to offer support and advice.

Keep talking to us with every question, someone here will know the answers. Good luck on this unwanted journey!

User

Posted 13 May 2016 at 10:09

Hi Polly,

You could try ringing the PCUK nurses the number is at the top of the Paige, when Trevor was first diagnosed we felt very similar in that the Drs were not very helpful we had the opportunity to change hospitals and now feel we get a much better service.

Trevor has bone metastasis , spine, pelvis, ribs and shoulder blade it is just over 3 years since he was diagnosed so don't despair sometimes men respond very well to the treatments.

Paul (yorkhull) is 4 years since diagnosis if you click on people's avatar you can see their profiles.

Hope this helps

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 May 2016 at 10:10

Sorry Paul we have over lapped.🤓

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 May 2016 at 12:09

Hi Paul and Julie,

Thank you so much for your replies. It's very comforting to hear that you are both doing well in your respective journeys and I'm glad both Paul and Trevor are responding well to treatment.

I had downloaded some of the other publications but not the toolkit! I will do that now. I'm glad to hear that it is now the norm, obviously it is just a shock when you first hear that you will have to have chemo when you weren't expecting it.

I guess now we won't know whether or not to change hospital and doctors because we have to wait for an oncologist appointment - which they haven't specified how long that will be! - Month or two is all they said. Which again is frustrating when you hear/ read how about the spread once it is in the bones.

Thank you both again for your lovely words and advice - Polly x

User

Posted 13 May 2016 at 12:44

Hi Polly,

A welcome from me to, i was diagnosed three and a half years ago with extensive mets throughout my torso, i had Chemo two weeks after being diagnosed with great results.

Still working still drinking to much and still eating all the wrong food and still having great times with my 12 year old twins.

As for waiting a month or two to see an oncologist that is not right, if your FIL has mets keep pestering them for an earlier appointment.

If you want to chat anytime just drop me a message.

My best wishes

Don't deny the diagnosis; try to defy the verdict

User

Posted 13 May 2016 at 14:26

Hi Polly,

And the odd pint of real ale has been known to touch my lips (but not for long).

Best wishes.

David

Edited by member 13 May 2016 at 14:32 | Reason: Not specified

User

Posted 13 May 2016 at 16:21

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

User

Posted 13 May 2016 at 17:01

Thank you all!!

Haha Si and David i'm trying to get him to eat as well as possible!! I'll show him this and he thinks he'll be off the hook! :) - However i guess it's all in moderation and just try your best and much as you can without going crazy on it! Glad to hear that you are both doing really well, It's so encouraging and I can't wait to show him all your kind words and experience, I think it will really help him!!

Thank you as well Lyn :) I guess you don't realise at the time what process you should be following and i guess everyone's i very different. I'm just keen to get him on a good path now and make sure that obviously he is being given the best chance at this and not pushed back!

What's so encouraging is the great mindset you all have, to live life now and enjoy the health you have. I'm not sure if that takes a while to come. Yesterday was quite a shocking day and I aspire and would love us all to quickly move with the great outlook you all have - honestly i can't tell you how comforting it is at this stage! :)

I hope and pray that he responds well - only time will tell!

Best wishes to you all

Polly x

User

Posted 13 May 2016 at 18:36

Dear Polly,
A belated welcome from me too.

I can't offer advice regarding your stepdad's cancer as our journey is different, but what is common to all of us is the shock of diagnosis, the fear, the worry, the depression.

You want to do the very best you can to give him the best chance he has and no man can ask more of a daughter.

When you go for appointments have your list of questions written down, (This is where the Toolkit comes into its own).

Each decision he makes regarding treatment should be made with all the facts before him or it isn't an informed choice

As far as diet goes a lot of men leave off dairy, red meat etc. and increase red fruits and lots of veg.

Good luck and best wishes
Sandra

Edited by member 13 May 2016 at 18:47 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 13 May 2016 at 20:07

Hi Polly

Best wishes

Devonmaid

User

Posted 15 May 2016 at 09:32

Hi polly

Look forward to hearing of a good response to treatment for your step dad.

Take care,

Lesley x

User

Posted 15 May 2016 at 19:18

Polly,

A wise man once said that the only rule with Prostate Cancer is that there are no rules. In other words, we are all different and the results of treatment vary. Take a look at the article about an Actor's fight against this disease, which appeared in the Daily Mail, mentioned in the next entry down on this site as I write and is also on the main web site for PCUK. That should give you and your stepfather heart about the merits of persistence.

Don't give up - battle on!

AC in Northants

User

Posted 16 May 2016 at 19:50

Thank you so much for all you great words and on what read and do! So encouraging and it has really helped me and my family - I can't thank you all enough!!! :)

We had an unfortunate development over the weekend where we had to rush to a&e on Friday due to a blockage on my stepdads prostate and not being able to pass any fluid. He was in a lot of pain, but when they finally had a catheter put in he was relieved of over litre of fluid! It was quite a scary experience especially so soon after been informed of his diagnosis.

He was kept in hospital until today but is doing well! Initially they were going to operate on his prostate, essentially drilling a whole through to stop the block - but now they are going to see if the hormones will shrink it first before they operate. Unfortunately however he now has to wear a catheter for about 6 weeks until they assess if the hormones has shrunk the swelling/ block on the prostate.

Not sure if anyone has experienced anything similar to this, or has any similar experiences? Seems strange how on one day they're saying they need to operate and then the next day they seem happy to leave it for a while!

Best wishes,

Polly x

User

Posted 16 May 2016 at 21:23

Hi Polly,
My husband had similar, his tumour was too bulky for surgery, and he had to have a catheter for over 6 weeks until the swelling had gone down, and the hormone therapy had begun to shrink the tumour. He went into retention on the return journey from the hospital, so we had to detour to a local A&E. Although with the catheter he was able to do most things once he got used to it. He was delighted when it came out, and he could pee normally again, it was gleeful time for him. I have found this site really useful, and the people really kind and helpful. It's a difficult time for you, it does in my experience get easier. Ask questions, read the information and take all the advice and support you can.
Keep us informed of the progress.

Leila X

User

Posted 17 May 2016 at 10:43

Hi Polly, I am so sorry to hear about your step dad. Your situation is very similar to ours so although I am not an expert by any means I may be able to offer some help.

My Dad is 67 and was diagnosed with advanced prostate cancer in January, it has spread to his bones. He has been placed on the stampede trial and is having hormone therapy injections every 3 months and started chemo in April. He was admitted to hospital 10 days after his first chemo session and is now back in again 11 days after his second on 6 May. His white blood cell count has dropped very low, as has his blood pressure. He also has chest pains. The oncologist considered lowering the chemo dose after the first session but then decided it may be a one off and left it the same. We are hoping today that we will find out more about the continuation of the chemo when we go in to see him.

Anyway, back to some (hopefully) helpful advice. My sister and I have a need to know everything attitude and this website is the best (and in my opinion - only) site to get information. As we all know Dr Google is not our friend! As others before me have said, the tool-kit is fantastic. If you are not already doing this, write everything down and keep copies for all the family who are likely to be with Dad at any time. Yesterday at th hospital, I was there before my sister and she has all dad's medication written down but I don't, so this is a useful tip.

Your dad sounds like ours in many ways, a hard working man who wants to remain active. Dad is still working (he is a sales manager) and fortunately can work from home from time to time. Having said that, he does drive very long distances in his job and we worry about this. My advice here is it's a really hard line to balance, as much as we want Dad to slow down and take things easier, we know that work keeps him focussed and takes his mind off his illness. It's also difficult to not let your caring turn into nagging.

It's probably also a good idea to be at as many appointments as you can - my Dad is completely on the ball as is my step-mum but sometimes even 2 pairs of ears are not enough. Sometimes the nurses are not too keen when the four of us turn up to appointments but it doesn't put us off.

Also beware of health professionals who are not cancer specialists. We had the most awful appointment with a Urologist shortly after Dad's diagnosis, he suggested that dad may not even see the year out and didn't think chemo was even an option. But, when we saw the oncologist a week later it was a completely different appointment. He was really positive that the spread could be curtailed, we all know that it isn't curable but the fact that the oncologist was so positive has given us all fresh hope.

Will be off now as I need to get to the hospital but please keep in touch and I wish you step dad all the best, this is the most awful journey but the support from everyone on this forum is invaluable.

Lots of love

Dawn x

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