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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


Thanked 1 time
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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