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Hi I'm new here and desperate for help and advice

User
Posted 17 Dec 2018 at 14:15

My husband has just turned 57 is always fit n healthy non smoker or drinker (I'm told that matters for some reason) he went to Dr in early August with sciatica nerve type pain in his left leg they gave him painkillers and a December app for orthopedics but did some well man tests that said his PSA was slightly raised he had a repeat test 6wks later that was the same so he went for tests at hospital they did an internal an MRI and biopsies saying prostate cancer is treatable if he has it.5nov a urology nurse tells us it's cancer it's spread to the lymph nodes and probably other areas and he is incurable maybe terminal we still hadn't seen a doctor at this point a month later we did not she was equally negative saying his body is cancer free but he has it in his hip please if you have similar is it really over so soon I feel they have just given up on him he has just left for a second opinion at out major hospital with his cousin who's a paramedic  but I'm terrified of what comes next he is a great dad of 3 a brilliant grandad of 5 two of which are small babies and most important he my whole world

User
Posted 17 Dec 2018 at 14:35
Hi Karen.

It seems to me that the nurse that spoke to you has been very insensitive, I am new to all this as I was only diagnosed in November but have learn a lot from this forum and the Prostate Cancer Uk website.
Check it out there is also phone number of Support nurses that you can ring who will give you lots of advise and reassurance.

Not a lot I know but I hope this little bit helps. I’m sure there will lots of other replies to help you

Bob
User
Posted 17 Dec 2018 at 14:35
Sounds like the second opinion is necessary as what you describe is pretty bad patient management.

You need a clear and confident opinion on his cancer staging and grade as this will drive the treatment options.

Is it actually in lymph nodes or hip or both? These are all important questions as they will allow for potentially curative or solely palliative treatment options.

Finally you would not be the first couple to have had a potentially palliative only case decision reversed when test results have been reviewed by other medics.

Don't forget to download the info pack from this site.

All the best...
User
Posted 17 Dec 2018 at 15:31

Karen,


Advanced prostate cancer (if that's really what he does have) is not curable, but that doesn't mean that it's either "not treatable" or "terminal". There are lots and lots of different treatments available that can keep men going pretty much symptom-free for many, many years.


You need to see an oncologist urgently to discuss treatment options.


All the best,


Chris

Edited by member 17 Dec 2018 at 15:38  | Reason: Not specified

User
Posted 17 Dec 2018 at 16:58
Hi Karen,

I hope you and your husband get the important answers you need soon.

If it is any help - I was diagnosed with advanced incurable prostate cancer in July 2016. My profile will tell you what and where.

I am being treated appropriately and whilst I will always have cancer and my consultant has told me that it is what will kill me, at the moment you pretty much wouldn’t know there was anything wrong with me.

Take care

Dave
User
Posted 17 Dec 2018 at 17:00

Hi Karen,  I'd be sure they haven't given up on him as he should be offered treatment and getting a second opinion will be useful.   When you're being diagnosed you don't know much and you don't know what to expect.  There is a lot to learn, every case is different and every man responds differently to treatment.  Please keep us informed as there are a lot of people on here who know and have experienced a lot.  Regards Peter

User
Posted 17 Dec 2018 at 18:25

Hi Karen


 


I was diagnosed in August this year with incurable Advanced Prostate Cancer, PSA less than 14 but unfortunately it had spread to my right hip. Since then I've been on HT, I'm through 4 out of 6 Chemo(docataxel) sessions and my Onco, who i saw today is scheduling 20 RT sessions at Preston for me in late March to zap the prostate further.


I'm feeling well, going out tonight with my mates for a couple of pints and planning a trip with my brother and our wives to Florida before i embark on the RT.


Incurable cancer isn't terminal but getting used to the "new norm" as someone on here aptly described it is the biggest challenge.


 


John

 
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