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Bad news please give us some hope!

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User
Posted 30 Mar 2016 at 14:13

Hi there;

 

OH and myself had a meeting with the Consultant urologist today to discuss the MRI scan - he says the likelihood it is an aggressive cancer and is booking Husband in for Biopsy in a few weeks It also looks like it is on the outside of the prostate but still in the prostate- the crappy news was that there looks to be 1 spot on his pelvis bone as well (no spread anywhere else and lymph nodes clear).

Prostate small 24cc

 

We are in a state of shock - is there anything positive we can salvage from this at all? The consultant said his psa was 5.8 and with the MRI scan results he is thinking it is aggressive but won't know till biopsy - the bone deposit is an anomale (sp?) and has thrown him somewhat as he found it surprising it was seen in the pelvis.

OH is 61 no symptoms - Bloods all good flow good.

Any positives and advice would be really gratefully received.

Jen

User
Posted 30 Mar 2016 at 15:43

Hi Jen,

When I was at your stage of diagnosis they flagged up an anomoly on my spine.

Subsequent tests and X-rays found it to be arthritis.

I think they are doing MRI scans first these days, but you won't really know whether or not the PCa is aggresive untill your OH has had the biopsy.

They then normally do a 'bone scan' where they inject you with a marker which gathers around bone mets prior to the scan, I don't know if your consultant has suggested further tests on the pelvis, such as X-rays or a bone scan?

Perhaps he is taking things a bit at a time, and awaiting the biopsy result before going further.

A couple of years ago I was a candidate for some new treatment not available at my local hospital, to justify the treatment and I had to be scaned to make sure I wasn't dying of anything else, so I had to have a head to toe examination and they found loads of things wrong with me, my right hip being better than my left, growths on my kidney, two types of cysts on my thyroid gland etc, but when the dust had settled the doctors decided that none of these things were worth worrying about, all part of the normal wear and tear associated with a 60 year old man who hasn't been looked after by one careful owner.

:)

Dave

User
Posted 30 Mar 2016 at 17:42

I think one of the things they will want to know from the biopsy is what type of prostate cancer it is. There are something like 27 different kinds, some of which behave oddly and need different treatment plans to the more common ones. I know it is difficult but there is really no point second guessing what may or may not happen next.

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

User
Posted 30 Mar 2016 at 18:33

we were told before the bone scan that although it can show up things that might not look normal, it cannot distinguish between real problems and arthritis, age related changes, old injuries etc.

good luck with the biopsy
B

User
Posted 30 Mar 2016 at 18:48

yep when I had some of my scans the spotted a lesion on my kidneys, but turned out to be a false alarm just a large blood vessel, so until you get the full results try not to worry to much we all know that is easier said then done, trouble is with being told we have PCa everything we have we think its a cancer node

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 31 Mar 2016 at 18:24

Jen,

If your husband has "very aggressive" PCa, surely doubtful, the biopsy should be with a few days not a few weeks. Kick some backsides to speed things up if you remain concerned. However, with what you report, I suspect you may be crying wolf. Not very likely to have spread at that PSA number. MRI scans are more or less reliable depending on how many "slices" per inch are taken. Depending where you are your hospital may have higher or lower resolution machines. For some time years ago I was suspected of having a PCa spot on my lung. It was just scarring as became clear with higher resolution pics and the passage of time which showed no change.

Try not to worry, but do take control of the case, don't be a victim. The medics are there to diagnose, advise and treat and support, but your husband must manage his treatment - hence my remark about kicking backsides!

AC in Northants

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User
Posted 30 Mar 2016 at 15:43

Hi Jen,

When I was at your stage of diagnosis they flagged up an anomoly on my spine.

Subsequent tests and X-rays found it to be arthritis.

I think they are doing MRI scans first these days, but you won't really know whether or not the PCa is aggresive untill your OH has had the biopsy.

They then normally do a 'bone scan' where they inject you with a marker which gathers around bone mets prior to the scan, I don't know if your consultant has suggested further tests on the pelvis, such as X-rays or a bone scan?

Perhaps he is taking things a bit at a time, and awaiting the biopsy result before going further.

A couple of years ago I was a candidate for some new treatment not available at my local hospital, to justify the treatment and I had to be scaned to make sure I wasn't dying of anything else, so I had to have a head to toe examination and they found loads of things wrong with me, my right hip being better than my left, growths on my kidney, two types of cysts on my thyroid gland etc, but when the dust had settled the doctors decided that none of these things were worth worrying about, all part of the normal wear and tear associated with a 60 year old man who hasn't been looked after by one careful owner.

:)

Dave

User
Posted 30 Mar 2016 at 17:22

Oh Dave that so helped - thank you very much.
We now have to wait and see (waiting game...) but the 1 spot on his pelvis really scared us both as it appeared the cancer hadn't spread out of the prostate .... we are just so confused but like you said quite rightly we have to wait on the gleason score after biopsy...
I think we may have to open some wine tonight.

Seriously thank you for responding

Jen

User
Posted 30 Mar 2016 at 17:42

I think one of the things they will want to know from the biopsy is what type of prostate cancer it is. There are something like 27 different kinds, some of which behave oddly and need different treatment plans to the more common ones. I know it is difficult but there is really no point second guessing what may or may not happen next.

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

User
Posted 30 Mar 2016 at 18:33

we were told before the bone scan that although it can show up things that might not look normal, it cannot distinguish between real problems and arthritis, age related changes, old injuries etc.

good luck with the biopsy
B

User
Posted 30 Mar 2016 at 18:48

yep when I had some of my scans the spotted a lesion on my kidneys, but turned out to be a false alarm just a large blood vessel, so until you get the full results try not to worry to much we all know that is easier said then done, trouble is with being told we have PCa everything we have we think its a cancer node

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 30 Mar 2016 at 19:03

Difficult to do I know but try not to worry. When diagnosis is complete, appropriate treatment options can be considered. Although not all may be suitable for various reasons, it's a good idea to read up on the pros and cons of various treatments in advance of a meeting to discuss with a consultant. A good place to start is getting the 'Toolkit' publication through the main part of this Charity site.

Barry
User
Posted 30 Mar 2016 at 19:26

I know just how you are feeling - our bad news was just before Xmas and he had his first injection Xmas eve.  Now on STAMPEDE drug trials.  Have excellent oncology dept at hospital - better service than urology I think.  It is still not real and it all seems so unfair.  However, we have to go onward and upward with this disease that never really revealed itself and I think that was also part of the shock - how could it have been there - been so serious and never showed up before it did?  Anyway, we have to go on with the trial and I think you will find on this site everyone is so very supportive and helpful.  Take care

User
Posted 31 Mar 2016 at 18:24

Jen,

If your husband has "very aggressive" PCa, surely doubtful, the biopsy should be with a few days not a few weeks. Kick some backsides to speed things up if you remain concerned. However, with what you report, I suspect you may be crying wolf. Not very likely to have spread at that PSA number. MRI scans are more or less reliable depending on how many "slices" per inch are taken. Depending where you are your hospital may have higher or lower resolution machines. For some time years ago I was suspected of having a PCa spot on my lung. It was just scarring as became clear with higher resolution pics and the passage of time which showed no change.

Try not to worry, but do take control of the case, don't be a victim. The medics are there to diagnose, advise and treat and support, but your husband must manage his treatment - hence my remark about kicking backsides!

AC in Northants

 
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