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Pre 6 week check anxiety

User
Posted 15 Jul 2019 at 14:51

I am a 57 year old who went to the GP back in December last year with what I thought could be a symptom of PC, but am now convinced it wasn’t! 

My issue is my trust in the Drs. Basically, the last couple of winters I have needed to pee much more often, this disappeared as the weather got warmer. Mr Google suggested this was normal but in the end I went to the Dr. She said she thought the prostate was slightly enlarged but was not serious. I decided to have the blood test, so that “in 15, 20 years the Drs would have a baseline.” (Her words).

The test was 5 so they called me back for another test. This was 11. I was referred to the hospital and the Dr said my prostate was not enlarged and the 11 score was totally wrong. “At your age it won’t be cancer as there is no family history, but we’ll do an MRI.”

the MRI showed an anomaly so off for a biopsy. The biopsy gave me an infection and I was rushed to A&E the next day with sepsis. A week later I was out but had to wait another 5 weeks for my diagnosis. I was 4+3. The MRI showed surface was intact, so RP was booked. Consultant booked me in for bone scan “it will be negative.”

 

User
Posted 15 Jul 2019 at 15:04
I had my operation 4 weeks ago today. The following morning the junior Dr came on the round and I asked if he had my bone scan results, he said, “Yes, you’re all clear.”

On the following Friday my consultant did the round and asked if I had any bone pain, to which I said no. He told me I would be discharged that day. As the team left the ward the same junior Dr came up to me and said a couple of marks had been found on my scan, but they’d let me know on my 6 week appointment. I felt like I’d been hit by an express train and was very upset. The senior sister called the consultant back and he explained that on the day of the operation they had still not received the bone scan but as my figures were low he decided to go ahead. The scan was done at another trust and they still had not received the images, just the report. He explained the other trust put every little thing in the report to cover themselves and he was still confident that it would be nothing.

With still two weeks to go I feel worse than before my original diagnosis. I have been told so many times in this process that all was well that I have little trust and my anxiety levels are rising by the day. I just feel abandoned, my nurse specialist is hard to get hold of and is usually away!

User
Posted 15 Jul 2019 at 15:43

The kind of post op talk you’ve had would have any of us in a state of alarm.

I hope you get good news at your review and they actually provide the facts this time.

A chat at Maggie’s or with a specialist nurse on PCUK might help reduce your stress.

 

 

Ido4

User
Posted 15 Jul 2019 at 15:47
Unfortunately this is nothing unusual Drs can be cavalier with their patients.

Learn from it and never assume anything, always make a point of understanding everything you are told and question what you are not.

Re bone scans they basically show up bone activity so can be associated with all sorts of non PC causes. Hopefully your six week check will bring good news!

User
Posted 15 Jul 2019 at 22:18

It's a shame the specialist nurse is unable to help more.  Sometimes it can be like hitting a brick wall but if it was me I'd do all  I could to make contact.  If that failed I'd ring the consultants secretary and explain my anxiety and ask if I could speak to the Consultant or Junior Doctor  or even visit.  

There might also be a PALS or Macmillan in the hospital who might offer some assistance.

Probably they're thinking the psa test will give an indication.  You could go for a private psa test although at 4 weeks it might not have reached a minimum.  Also specks on a scan might not  give much psa so it's a hard choice.  In theory your Specialist Nurse or GP could authorise a psa test and the result can be available in 24hrs.   Although I'm not sure about the SN having authority.

They also have a Multi-disciplinary Team who discuss each case. You could ask if the SN attends or has access to the minutes and what they've said.  My SN was from Macmillan and told me everything as soon as it came out, although I had to ring.

Each hospital is different and they might have more info from the scan rather than be waiting for a psa result.

Also I had reason to be concerned about my bone scan due to a hip pain and ended up asking a PCUK nurse.  She said I was getting ahead of myself which was small help but the concern still rose and fell.

Edited by member 15 Jul 2019 at 22:29  | Reason: Not specified

User
Posted 15 Jul 2019 at 22:48

I have my psa test next Monday so it will be ready for the six week appointment. They will also give me the operation results and bone scan result. I think they are looking for the scan and psa results to complement each other.

User
Posted 16 Jul 2019 at 00:52

hi Rob

6 week value fingers crossed will be extremely low. Take it from there.   It could be 3 months to get to absolute minimum so there's little can be done . Do you know the decimal place values you are expecting ?

.  mine have always been to 2 dec places.  

0.04 at 6 wks  then 0.01 0.02 0.01..    .. over 4 yrs.  just had one back at 0.02.

May I ask how long were you in hosp ? were there complications ?

I need to check my notes however I'm sure my wife and I had all scans before RP decision ? 

Seems illogical at 57 to have surgery and distant mets.  I'm sure you are perfectly fine. As others have posted.    ask questions.

Hopefully you are dry? Hopefully you are being given full ED advice.

best wishes Gordon 

 

 

 

User
Posted 16 Jul 2019 at 07:37

Gordon,

I was in hospital for 5 days and no complications, other than having to come home with the drain still in for a few more days. I’m dry overnight but do suffer leakage whenever I stand up and sometimes when I’m walking.

i would have had the scan results before surgery normally, however the Trust’s scanner was decommissioned for replacement just as I needed it. This delayed the scan until 10 days before my operation.

Have had no advice re ED, I presume this will be discussed in two weeks’ time.

i also have no idea regarding decimal places, other than what I have read on here.

Thanks anyway.

 

User
Posted 16 Jul 2019 at 18:16

Sounds good. 

prep a basic list of questions at review.  and/or take someone along.

 

User
Posted 17 Jul 2019 at 08:02

Thanks. Reading stuff on this forum makes me realise how little I have been told.

Rob

User
Posted 30 Jul 2019 at 13:00

Just got back from results appointment. 70% good in my humble opinion.

 

surgery went well in that 2 22mm tumours were removed, nothing had broken through the membrane of the prostate. All 33 lymph nodes were removed and all were clear. My PSA came back unrecordable, ie <0.1. Down from 11.4. Gleason was 4+3.

However, there is one lump on the pelvis. Oncologist thinks it could be prostate cancer but of course the PSA result conflicts with that. So, I have had a blood test for an ultra sensitive PSA test and will be referred to oncology to assess it and if necessary highly targeted radiotherapy. My consultant still thinks it won’t be anything, but the uncertainty remains for a few weeks to come.

 

 

 
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