Should I be worried about spread?

Hi Jnc

Currently, I don't feel you have enough information.

Whilst the nurse may not be able to give too much detail, is there not a consultant or their secretary you can talk you? Failing that whoever the nurse reports to.

Certainly, my case was discussed at a MDT, but does it follow that your OH has PC just because his case will be?

Please let us know when you have his stats and I'm sure we can help.

Regards

Stuart

thank you for the reply Stuart.  We were told that if we had any problems or concerns  that we should ring the urology nurse, she was the one who requested the MRI and the one a spoke to today, she just said she she didn’t know anything other than the scan was back and that further scans needed.

have you had similar happen?

X

HiJnc

I was told it was highly likely I had PC before the scans - the scans were to determine how bad it was and whether it had spread.

After all the scans, the MDT met to decide how to attack it.  From memory, it was the urology consultant who gave me the bad news. 

I am surprised the nurse is unable to read the report from the MRI scan. The consultant must have reviewed it to order to request the others, and surely, the nurse can quote from the report. 

I feel that you have an absolute right to know why they want the other scans.  If she can't help, then try the PALS team at the hospital.

Hope this helps.

Regards

Stuart

Hi Jnc

Possibly something is showing on the MRI but would be unusual with an undetectable PSA.i think they just want to do further scans to be on the safe side.

Hopefully the bone scan will happen soon so that u know what's going on.

Best wishes

Steve 

Hi, I’m going to update as I didn’t explain well.

my OH was diagnosed in May last year with Gleason 9 N1 stage 4 so worried about spread. 
Im thinking the worst in terms of one scan led to another before we were informed of the diagnosis, that took around 8 weeks at the time.  

kind regards x

thank you for the reply, my OH’s PSA was only 3 at stage 4 so apparently he’s non secreting.

I will update the post to worry about spread 

very best wishes x

OK , I  understand

Strange why they didn't seem concerned if they already knew it was non secreting

Steve

Hi Jnc

Ahhh ok that makes more sense.  However I am really surprised that  it's taken 16 months, from May last year, to arrange the full body and pelvic scans. You are correct they are investigating to see if the PC has spread.

Do you have the full staging? ( mine was T4N1M0 ) guessing not, as you are waiting the other scans.

Have I misunderstood the timeline I wonder?

Regards

Stuart

Hello Jnc,

Our husband's are in the non secreting club with a similar diagnosis so I fully understand your concerns as the only way we can tell what is going on is with scans. My husband also has buttock and hip pain which got worse after chemo which has just finished. I think this was partly caused because he found it difficult to walk for a few days during each cycle and his chiropractor had to be more careful with his treatment. We feel as if we are on a knife edge every three months with scanxiety. As long as you're husband has a low testosterone then you know that he has some protection. Apart from the MRI's he also had a PSMA PET scan to confirm that there was no spread. I wouldn't worry too much about bone and hip scans at the moment (easy to say) but what they will be looking for is bone thinning  or spinal spurs which are not usually cancerous but may be causing the pain. Fortunately it sounds as if your medical team are being proactive. Even though the cancer is non secreting we still keep an eye on the PSA, especially velocity of small increments, as this has given us an indication of when a change in treatment was necessary. At least there are more options out there - my husband was diagnosed in July 2020 and is still going strong.

What I forgot to say was that the pain in my husband's case is muscular affecting the lower back but not the sciatic nerves. Hi chiropractor, along with exercises, has greatly improved the pain levels.