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A cautionary tale for anyone with health issues...

5 replies

scoobydoo1971 · 21/10/2023 20:21

Based on my own experience, I would say if you have a health concern and you do not feel it is being taken seriously by your GP, or not referred for specialist help, please go back and see another GP. In my case, I had a tumour growing on my right hand in 2019. I had three GP appointments where they all flatly refused to refer me, as insisted it was a harmless benign lesion called a fibroma. They tried to make me feel like I was wasting their time. I went back again being stubborn, and saw a GP who did refer me into the NHS hospital for removal as I pointed out it was itching and getting bigger. I had surgery and the pathology report came back as a benign fibroma. Three years later it started growing again, and I saw the GP for referral. He was adamant it was scar tissue from the original procedure, but once he discovered my professional background (a medical one) he reluctantly referred me. The wait list for the NHS appointment was long, so I went private. The plastic surgeon took it off in August and I could tell he wasn't happy with what he was observing as the roots were deep. He sent it off for pathology testing, including molecular analysis to determine the cause of recurrence. It has come back as an aggressive sarcoma, and I am facing major surgery now as the previous surgery site won't heal, and there are much larger margins to be taken. I also need radiotherapy. There is also a question over whether the original pathology report made a benign judgement in error. This is because of the molecular genetic findings on the most recent excision, and no documentation to suggest that such testing was undertaken in 2019. With the NHS being under such pressure, it can feel wrong to trouble health professionals. But my advice would be to go with your gut feeling and seek further help if you are not happy with a diagnosis. I am looking at partial hand amputation as a result of this mess. I already have a disabled left hand from previous surgical error arising from a procedure that went badly wrong a few years ago. Don't be me.

OP posts:
Wehavealaughdontwe · 21/10/2023 21:04

I'm so sorry to hear this and can quite believe it having to really push for medical testing myself (I was right!) Good luck with the surgery and recovery and well done for making yourself heard

user1471556818 · 21/10/2023 21:07

So sorry to hear this .Wishing you all the very best
Thank you for sharing as it's good advice not to leave things.

TheComptroller · 22/10/2023 10:35

I’d go privately if you have any concerns, so that you have an early diagnosis that your GP can refer onwards on a usc (urgent suspected cancer) basis. You can’t put a price on your life. I had a soft tissue abdominal sarcoma that my GP thought was a hernia and put me on a 12 month waiting list for an ultrasound. Fortunately, I went for a £300 private ultrasound and this immediately flagged a sarcoma and recommended a biopsy and MRI on a usc basis. I then passed the report back to my GP: in hindsight I wish I’d had the MRI and biopsy done privately too, as the sarcoma was initially the size of a walnut but grew to the size of a coconut by the time they took it out 10 months later.

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SierraSapphire · 22/10/2023 10:41

Sorry you're going through this, twice I have had scans and not been happy and asked for a second opinion (one NHS and one private) and both times they've found something my first hospital missed - one thing cancer and the other thing also potentially life threatening. I've considered making a complaint both times, but in the end just decided it was too stressful and I wasn't convinced it would make any difference whatsoever, which is sad. Neither time my original hospital apologised to me or even mentioned it! The culture of learning from mistakes seems woefully inadequate.

Llewrac · 22/10/2023 11:03

I am really sorry to hear what you are going through.

I don't think it is always as straightforward as asking to see another doctor. At my surgery it's the receptionist who decides if you get to see the doctor at all so you sometimes have to have a symptom for many months before you can be seen.

It's becoming more common for private hospitals to require a referral from a GP so you can't even get a diagnosis that way.

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