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GP unhelpful or probably correct

User
Posted 08 January 2018 17:26:06(UTC)
I was discharged back to the care of my GP last March which I was fine with. The oncologist suggested I return to 6 monthly tests.
Anyway I saw the GP last week as he wrote to me asking to make an appointment to review my PCa. Interestingly when I got there it was a standard letter. So he just read the oncologist letter and said your PSA is normal (he said that when it was 22). I agreed that for someone who has had radical treatment it was a reasonable PSA ie 0.03. I pointed out though that even though they are very low numbers they had creeped up from my nadir of 0.01 and perhaps that’s why I was back on 6 monthly tests. He then said no you are annual. I pointed out that the oncologist had told me 6 monthly. However, the letter said annual.
The GP was very resistant to my suggestion of having a 6 monthly test as the oncologist letter said annual. I eventually persuaded him that waiting until October seemed unreasonable when there have been changes in my PSA level but he was clearly not happy. I almost told him if I hadn’t researched and accepted his opinion in 2012 that I would possibly be dead now but I refrained as he is usually very approachable.
I think this highlighted for me the difference between staying under the oncologist rather being discharged back to the GP for a condition that he admits he is no expert in

Bri
User
Posted 08 January 2018 21:28:25(UTC)
Bri

Being informed is the key. Before any appointment, I do my research and make sure my questions are answered. Those who don't do their homework, I fear, have less input into their treatment pathway.

That's why this forum is so good - although I think my onco and gp probably wish I didn't read it so often.

Ulsterman
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User
Posted 08 January 2018 21:28:25(UTC)
Bri

Being informed is the key. Before any appointment, I do my research and make sure my questions are answered. Those who don't do their homework, I fear, have less input into their treatment pathway.

That's why this forum is so good - although I think my onco and gp probably wish I didn't read it so often.

Ulsterman
Thanked 1 time
User
Posted 08 January 2018 21:47:29(UTC)

Phone the hospital specialist nurses and ask for a final answer. If they say annual then I guess you offer direct to pay private. Lyn says a psa test is approx £175. I know you’re a worrier but I guess the cost would be worth it to you all told. At one point I contacted my nurse to say I was unhappy with the ED clinic and their input. I was fobbed off so I phoned my Uro’s private secretary for a private appointment , and hey-presto got an NHS appt 5 days later.
I think you’re cured Bri — as much as we can ever say that. But just fight if you’re not happy. Louise 69 used to say the squeakiest wheel gets the oil and I think it’s true.




If life gives you lemons , then make lemonade
User
Posted 08 January 2018 22:16:33(UTC)
Those who shout loudest Bri get heard , if you are not happy shout loud . Regardless of wether you are cured or not you deserve to be heard .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 January 2018 08:51:02(UTC)

Sounds like it was the oncologist who slipped up - the GP was simply trying to adhere to the instructions from God!

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 09 January 2018 09:12:17(UTC)
Can I suggest that you contact your assigned nurse , if you have one, and ask for a copy of the letter sent to the gp from the hospital. That should give you the definitive information regarding testing. Or , failing that contact your practise manager and also ask for copies of the hospital correspondence again, that should tel, you exactly what was written.
Good luck, I found emailing the nurse was easier than trying to get her by phone and also , I had a record I would cc the email to PALS
User
Posted 09 January 2018 18:24:10(UTC)

Is the GP looking at an old letter? In 2015 your onco said you could go to annual testing and you persuaded the GP practice to do it in 8 months instead so the GP may be referring back to the 2015 letter.

I tried to look back at your 2017 posts because I thought that at your last review the onco had said annual testing and you asked all of us what our view was of that. But I couldn't find it - rubbish search facility.

I don't remember you ever having a proactive nurse specialist in which case I would phone the consultant' s secretary and ask her / him to arrange for a letter to GP okaying the 6 monthly test.

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


User
Posted 09 January 2018 22:34:33(UTC)

Thanks all

Lyn you are right about the 2015 appt and annual testing. But at my 2017 appt a different oncologist said he would put me back to 6 monthly with no prompting from me so it did take me back a bit. It seems he has forgot what he told me verbally.
He also said his door was always open so I will look at contacting him to rectify the situation

Cheers again all

Bri

User
Posted 11 January 2018 08:55:23(UTC)
Hi Brian

I can relate to the GP side of things. I started to have pain in my shoulders last June and when I informed my GP she said it was a side effect of the HT. Took their word for it as my PSA was 0.2 undetectable.

Saw my consultant in Dec and just happened to mention it to him, he sent me for a bone scan which showed up a small cluster of cancer cells in both shoulders. PSA starting to rise too 0.2 detectable.

Cannot be too hard on the GP as they are not a specialist. But it is still annoying.

Cheers

Sandy
User
Posted 19 January 2018 07:57:34(UTC)

Got the copy of the letter that the oncologist sent to my GP and it quite clearly states to test my PSA twice a year for the first two years and if all is well after that period to move to yearly tests.

He made me feel quite uncomfortable at the appointment the other week ie intimating that I was lying when I said the oncologist verbally told me 6 monthly tests.

Our fxxkin life in their hands. I’m pretty angry about this as it is the same GP who recorded that my PSA of 22 was normal back in 2012.

User
Posted 19 January 2018 08:59:08(UTC)
I feel very strongly that a letter to the practice manager is in order, failing that can you change gp in your current surgery? I had experience of a similar attitude from my gp not relating to PCa . I discussed this with a friend who works in my surgery and she acknowledged that this doctor was loath to either refer patients or run tests for patients in order to save the surgery money and it was well known. Unless we say something they will just continue to get away with it.
On a more positive note the other doctors at this same surgery are really supportive and helpful to my husband who is currently undergoing treatment at our local hospital.
 
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