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hard to come to terms with

User
Posted 01 January 2018 11:51:02(UTC)

Hi all,

 

Been a while since I wrote anything as all was going well, or so I thought.

I had RP 2 years ago followed by RT and 2 years HT. Had a bone scan a few weeks ago and have now been told that even after all what has happened I now have cancer in the shoulder bones and the hip area. Totally devastated as I thought things were going ok. Even though my PSA has continually been below 0.2 undetected my last result came back as detectable at 0.2.

I had the pain in my hip a few months ago but my GP put it down to sciatica, she also diagnosed my shoulder pain as a side effect of the HT, I just feel that the GP totally wasted months that could have went to treatment.  

Feeling really down at the moment which would be the first time throughout this journey, such a blow as there is now no cure to this and only more treatment, which I hope to get soon. but even treatment may not be enough.

Just looking for anyone else who is going through this same nightmare, its the not knowing how long I have left that is really creating a major worry, I thought that I would have at least another 10 years before the HT stopped working not just 2 years. Keep reading survival rates and it does not read well for me as I have been told my PCa was very aggressive 3TB, Gleason 9 and 4+5.

So desperate to talk to someone if only for some kind of reassurance.

  

User
Posted 01 January 2018 12:51:50(UTC)
I’m 60 and was diagnosed back in May 2017 with widespread PCa through my bones but, thankfully not in any organs. I was given a prognosis of 2-3 years if I don’t respond well to treatment and up to 10 years if I do but always with the caveat that new treatments are on the way. I live in constant hope
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User
Posted 09 January 2018 18:30:16(UTC)

Okay I think you need to put your PSA out of your mind - it apparently cannot be relied upon as a measure of what is happening in your body.

There is an alternative to the idea that the HT has failed already. What if the bone mets were always there but just weren't picked up before? That would mean that the HT has been doing its job and the mets are being well controlled.

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


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User
Posted 10 January 2018 16:34:05(UTC)

fingers crossed for you x

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


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User
Posted 01 January 2018 12:51:50(UTC)
I’m 60 and was diagnosed back in May 2017 with widespread PCa through my bones but, thankfully not in any organs. I was given a prognosis of 2-3 years if I don’t respond well to treatment and up to 10 years if I do but always with the caveat that new treatments are on the way. I live in constant hope
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User
Posted 01 January 2018 13:56:27(UTC)

Sanders, if you were my husband/partner/dad, I would be asking 2 questions
A) what is the testosterone level (and if that isn’t being tested, ask for a test ASAP)
B) were you originally diagnosed with adenocarcinoma or was it another less common type of prostate cancer?

I have some sympathy with your GP - since your PSA was staying below 0.2 there wasn’t really any reason for a GP to suspect cancer progression (although you have to wonder why it was being managed by the GP rather than you going back to the urologist / oncologist?)

The important thing will be to establish whether the HT wasn’t being effective in knocking your testosterone production out OR the cancer has learned to survive without testosterone. The next steps will depend on which of these applies - your testosterone should be at 0.69 or less.

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


User
Posted 07 January 2018 21:49:36(UTC)
Hi Lynne

When I met my consultant he did take bloods to check my tetesterone levels, still to find out the result. Didn't know there was different Pcs types just told that mine was aggressive.

I can understand too while the GP didn't pick up the bone cancer as the PSA was constantly below 0.2 but still annoying. Getting bloods done tomorrow again and just waiting for oncologist to set a date to meet me.

Every wee niggle now is being multiplied 10 times, in your experience how fast can the bone cancer spread. Been informed that it can take ages. I know everyone is different. Keep reading survival rates but going to stop that now and just concentrate on the treatment ahead.
User
Posted 07 January 2018 21:56:37(UTC)

There ar3 at least 27 types of prostate cancer, and some of th3 rare ones don’t behave the way we all expect. For example, there are a couple of types that produce no PSA at all, and some kinds don’t respond to hormone treatment. You should ask the oncologist whether you were diagnosed with adenocarcinoma (the common one) and if so, could it be that you have developed a rare type later. We had a member on here whose cancer developed in a really unusual way and his wife had to fight to get him retested but it did turn out that he had some small cell cancer mixed in with the adenocarcinoma.

My father in law died due to undiagnosed mets in his liver and kidneys; because his PSA was only 1.2 the doctors didn’t realise that it was spreading very quickly.

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


User
Posted 08 January 2018 14:18:37(UTC)
Thanks again Lynn

Got my PSA tested today again for my next visit to the Beatson next week.

Asked the nurse for my Testosterone result and she told me that it was at 0.09. She really couldn't tell me if this is good or bad. No doubt I'll find out next week.

Sandy
User
Posted 08 January 2018 18:38:36(UTC)

Are you in the UK? If so, 0.09 will presumably be 0.09 nmol/L and castrate level is anything below 0.7nmol/L. Some countries use a different measurement like 50ng/dL.

What your result means is that the cancer is surviving and active without testosterone, rather than the hormone treatment isn't working properly - in other words, you are now hormone refractory. They might suggest adding bicalutimide to get a quick response or they may move you to one of the newer complex hormone treatments that are designed to work on cancer that is hormone refractory.

Don't think you are on your way out yet though - some people have had a number of good years on steroids, enzalutimide, abiraterone, chemo or a combination of these. You could also ask about Zometa to help with your bone strength.

Which hormone have you been on up to this point?

PS  Was it definitely 0.09 and not 0.9? 

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


User
Posted 09 January 2018 07:27:22(UTC)
Hi Lynn

You've got me thinking now, I'm almost sure it was 0.09.

My PSA has been 0.02 undetectable for 2 years and then the last one came back as 0.02 detectable, totally confused.

I live in Scotland. Been told my consultant that there are plemy of choices yet but feeling rather low at present.

Sandy
User
Posted 09 January 2018 07:31:11(UTC)
Just to add Lynn, my pain in my shoulders surfaced last summer when my PSA was undetectable so obviously the HT wasn't working 100% then.

Sandy.
User
Posted 09 January 2018 08:14:23(UTC)

I think you are muddling yourself up. At the top of this thread you said your PSA had come in at 0.2 and now you are saying 0.02.

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


User
Posted 09 January 2018 10:32:24(UTC)
Sorry Lyn

It was 0.02 undetectable for 2 years not 0.2. Big difference I know just that my head is all over the place trying to come to terms with it all.

Sorry for the confusion.

Sandy
User
Posted 09 January 2018 18:30:16(UTC)

Okay I think you need to put your PSA out of your mind - it apparently cannot be relied upon as a measure of what is happening in your body.

There is an alternative to the idea that the HT has failed already. What if the bone mets were always there but just weren't picked up before? That would mean that the HT has been doing its job and the mets are being well controlled.

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


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User
Posted 09 January 2018 18:39:27(UTC)
Thanks Lynn

Never thought of it that way, bone scan at time of Dx was clear but at T3b I guess there could be a chance that cancer could be present and not picked up.

Thanks again for your help as it gives me more questions to ask the oncology. Plus it has perked me up a bit knowing that the HT could actually be working.

Onwards and upwards.

Cheers

Sandy
User
Posted 10 January 2018 15:59:46(UTC)
Lynn

Just received the latest PSA which is 0.2 detectable the same as December.

Previous 2 years it had been 0.2 undetectable, just waiting for oncologist now.

Forget about the 0.02 as it was my mistake.

Cheers.
User
Posted 10 January 2018 16:34:05(UTC)

fingers crossed for you x

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


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User
Posted 10 January 2018 20:53:12(UTC)

Good luck !!

We can't control the winds - but we can adjust our sails
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User
Posted 20 January 2018 13:27:59(UTC)
Hi

Latest update, saw my oncologist yesterday and now going for 6 sessions of Chemo starting in 2 weeks. 2 dark areas identified in lower rear pelvic area.

Strange thing though as he had told me it is not in the shoulders as the urologist had suggested. He is a wee but baffled in how the dark areas have got there as my PSA has been steady throughout at 0.2 for 2 years.

Some goods news as he was more optimist about the future, felt as though the urologist had me dead and buried within a few months, 3 weeks of hell waiting for the oncologist.

Plenty of treatments for me yet but hoping that the chemo can help delay any further growths for years. He wanted me to start chemo next week but I'm going on holiday and was going to cancel but told not to as it will not make any difference to the cancer. Hope he is right but I'm sure that he is.

Good luck all in your own battles.

Overall very positive meeting so onwards and upwards now.

Cheers.
User
Posted 20 January 2018 13:44:07(UTC)

Thanks for the update sanders

Go and enjoy every minute of that holiday and plan for plenty more !!

We can't control the winds - but we can adjust our sails
User
Posted 20 January 2018 15:46:31(UTC)
Enjoy your holiday Sanders. Hope chemo goes well for you when you start it. Best wishes, Ian.
User
Posted 20 January 2018 18:02:08(UTC)
Thanks everyone.

Will enjoy every minute of the holiday. Held off for my holiday insurance and what a shock I got.
I have always declared my Pcs but now it has entered the bones some co.pa iea will no.longer provide insurance whilst others are upping their premium.s by hundreds.
Managed to get insurance but had to pay more than I expected.
Anyway off we go to the sun.

Sandy
User
Posted 03 February 2018 07:48:23(UTC)
Just a wee update.

First session of chemo done (tuesday) and dusted with no major side effects as yet.
Only some aches and pains, almost as though you have been stung with a bee, smell is like metallic or burning plastic, so strange.
Going to carry on with my job as I have been given the green light to carry on working with no restrictions and it is down to me.
So it's 1 down and 5 to go.
My only concern is the letter from the Onco states it appears to be some cancer at pelvic area but doesn't actually state it is, I know it probably is though and will discuss with Onco next week.

Onwards and upwards
User
Posted 03 February 2018 09:52:10(UTC)

Good luck for the rest of your treatment ,Gary continued to work as it helped his mental state .But be careful and listen to your body as things can change pretty quickly .
Best wishes
Debby

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User
Posted 03 February 2018 09:57:05(UTC)

Good luck from me too.

I hope the rest of the chemo goes as well as the first

We can't control the winds - but we can adjust our sails
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User
Posted 03 February 2018 10:08:55(UTC)
Hi Debby.

Your correct about work, it takes our mind away from the dark place where we find ourselves.
Yeah i was told by the nurse that things can change quickly with regards symptoms. Before I would have just pushed through it but this time I'll definitely listen to the old body.
Just need to get rid of the metallic taste now.

Cheers
User
Posted 03 February 2018 11:03:33(UTC)

Best wishes from me




If life gives you lemons , then make lemonade
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User
Posted 03 February 2018 11:41:13(UTC)
Hi Chris.

Best wishes back to You, here's hoping that something can be found soon to help us all.

I've not posted for a while as everything seemed to be going along nicely until the new year when the bone scan came back.

Read your story again and like you I fear that I too may not see 60 but we can only live in hope and try and enjoy what we have at present.

Take care mate.

Cheers.
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User
Posted 03 February 2018 11:49:24(UTC)

Hi Sandy,

Just been reading your story. I hope the chemotherapy works for you. I notice you are been treated at the Beatson - and me. Is Rob your consultant? I always feel lifted after a chat with him.

All the best

Dave

User
Posted 03 February 2018 12:10:37(UTC)
Hi Dave

My RT was carried out at the Beatson in Airdrie. The chemo is being done at Wishaw General.

Are you from the Lanarkshire area.

Cheera
User
Posted 03 February 2018 14:09:58(UTC)

Oops, wrong Beatson Sandy. I’m being treated at the Beatson West Of Scotland Cencer Centre in Glasgow.

Dave

User
Posted 03 February 2018 15:24:42(UTC)
No worries mate.

Hope all goes well with treatment.
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User
Posted 10 February 2018 13:01:23(UTC)
All

First session of chemo completed nearly 2 weeks now and so far no major side effects. Last Sunday I thought I was being stung by a million bees and taste/smell is slightly metallic but bearable.

Met with Onco on Friday who informed me that the dark areas are small in the sacrum area and he is slightly baffled why this is due to my PSA being only 0.2 and testeserone 0.09.

Interestingly when asked about prognosis he stated it's obviously not as good as before. If kept under control then it is years if PCa grows then who knows.

Onwards and upwards

Sandy
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User
Posted 31 March 2018 10:21:38(UTC)
Just a wee update.

Half way through chemo and so far no major side effects apart from a dose of the cold which took ages to clear up and my hair falling out, not a big deal as it was going anyway. I have also managed to keep working away but unfortunatly I now need to make a major decision with regards work, met with my consultant and I asked him the big question on my outlook. Basically he told me that I probably wouldn't see pension age due to the nature of my PCa, so with a 7/8 year timeline I feel that I need to make the most of what is left. I know that a lot of guys out there would settle for 7/8 years but to be told that it does take a wee bit of getting used to. Anyway time to make the bucket list now.

Cheers
User
Posted 31 March 2018 10:39:38(UTC)

Hi Sanders thanks for you update on chemo. Glad to hear it’s not been so bad for you and is tolerable. Whilst I’m still behind you on treatment , I was told at 50 that I may have roughly 6 years , but it’s all up in the air at the moment. We are enjoying life in some ways more than we ever have. Lots of treats meals and holidays , but mostly restricted by having an 8 yr old son who may be the biggest victim of this s**t disease. I hope things pan out well for you and try and stay strong. I know it sits on your shoulder each day but staying busy helps me ignore it. I’ve struck a balance between part time work and a new hobby of RC cars. Keep well




If life gives you lemons , then make lemonade
User
Posted 31 March 2018 11:01:12(UTC)
Sorry to hear about your " timeline" Sandy. I sometimes wonder if it's that useful for specialists to say how long they think people have got. So many times on here we see men who defy all these estimates and there is always hope new treatments may come along.

I was just thinking about Prof Stephen Hawking and how long he was given at diagnosis ( entirely different disease I know)

Although easy for me to say not being in your situation I hope you are able to enjoy your life and by all means have a bucket list if you want one. Make it a long one ☺


Best Wishes
Ann
User
Posted 31 March 2018 11:08:16(UTC)
Hi Chris

Just read your last update, good news that it's not spread to the bones.
As you said we do need something to occupy our minds so I've took up golf to pass the time and I'll probably be finishing up work in the next few months. It is heart breaking for your son, my daughter's are in their 30s, as yet i dont have grand kids but all I think about is that I won't be here long enough to see them. Anyway going to do the same as you and take life by the horns and enjoy what is left.
Take care mate.

Sandy
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User
Posted 31 March 2018 11:23:15(UTC)

Hello Chris,

I'm still pretty new to this but I'm 50 years old and I have exactly the same staging as you so outlook is pretty grim! I start RT a week on Monday and getting a new bathroom this Tuesday :) (?)
I don't know what to think. Chances of full remission for me with radical radiotherapy? Slim to none........

And I'm sick of getting patted on the shoulder!

Good luck to you!
Regards,
Richard

User
Posted 31 March 2018 12:37:32(UTC)

Sanders I hope you get some reliable independent financial advice while you decide what to do with the remaining years - for example, weighing up whether you would be better dying in service or drawing down pension lump sums early. We have spent a couple of months doing this as John's death in service grant is 5 x annual salary (a significant amount of money to give up) but the pension companies can offer enhanced deals if the person is unlikely to be drawing a pension for 30 years!

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


User
Posted 31 March 2018 13:34:37(UTC)
Thanks for the update Sandy.
Wishing you all the best for the remainder of the chemo and moving forward.
I was told the same amount of years by my oncologist in January 2017.
He was cagey though, he said it could be less, it could be more.
Like you I am looking at giving up work to enjoy life more as my job takes so much out of me I have nothing left in the tank.
Lyn’s advice is sound as usual.
I spoke to a financial advisor through my professional association and have a personal financial advisor too.
My in service death grant is 3X salary plus a pension of 30% salary for my wife.
Whereas if I take my pension early I will drop to 30% of my salary plus lump sum with my wife only getting a small proportion of that if I pop my clogs. I seriously thought, and sometimes still do, staying on at work for the better widow’s Pension for Sandra.
To my wife and I it is about quality of life.
We have no mortgage now so it makes it a bit easier.
Good luck with treatment and looking at giving up work.
Ian.
User
Posted 31 March 2018 14:35:21(UTC)
Hi Lynne and Ian.

I have started the ball rolling with regards finishing up and also looking at my pension. I may opt for a draw down pension as this gives me my pension pot but need to do this before I reach 60. My wife will get a good pay out if I die in service but once I leave service this dissapears although she would still get a pension but the lump sum would go into the pension companies fund. So better to take what I can now so areas I can enjoy it and my family is taken care off. I asked the consultant about my future so that i could start putting thongs in place. Thanks for all the advice.

Sandy
User
Posted 31 March 2018 14:50:27(UTC)

I hope you make a huge bucket list Sanders and that you get to do everything on it.

Best Wishes to you and your wife.

Enjoy today and plan tomorrow and Christmas and Birthdays and holidays etc etc..... :)

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