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Obtaining a Diagnosis.

dj48
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So far have had tongue (treated with laser excision 4.5 years ago, long delayed check this week but no problems) and prostate (ERT 18 mths ago and remain on 3 mthly drug treatment, but PSA going right way) cancers. 

Now symptoms of a pretty rare version. Early symptoms exactly match those given by NHS, yet those symptoms do not, according to my GP, match those which trigger a referral to a specialist. My request for a referral thus refused. No suggestion as to other possible causes. 

There are as far as I can tell no specialists in the condition in local or regional NHS facilities. 

Any thoughts as to what action I might take. Unlike last 2 occurrences I am quite fearful, verging on planning my own demise.

My own conclusion is to go private, I can at least afford it but the distances involved are considerable.

If diagnosis is as I suspect, could I then use this as "evidence" to obtain NHS treatment?

Big questions, sorry, any and all comments welcome.

TIA.

 

  • Offline

    In answer to your last question - yes.

    Many patients use results of private sector scans and tests as evidence for their need for NHS treatment.

    Good luck

    Dave

  • Hi dj48,

    I'm sorry to hear you're feeling this way and also like the GP isn't listening. One option you have is to ask for a second opinion, if you haven't already. Be sure to make a note of any symptoms you wish to discuss, including any information such as when things were first noticed, any changes, and so on, to help with talking things through.

    Of course if getting an opinion privately is also possible for you, then that is an option as well as or instead of the above. Issues such as financial and logistical points will need to be decided by you in terms whether this is worthwhile.

    You mention being fearful - I can understand this must be difficult. The key thing is to try to get the answers or peace of mind you need, and of course if you have symptoms you are unsure about then it's important to get some information or clarification about this, so do try to speak to a doctor about this. If ever you're really struggling with how you're feeling, speak to Samaritans, who are always at the end of the phone on freephone 116 123.

    And we're always here for support on the forum if you need it.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Offline in reply to Moderator Ben

    It's not that the GPs (seen two) aren't listening. Initial obstacle is that while symptoms as described on NHS fact sheet, they do not appear on the list of symptoms for which referral is permitted!

    Private is OK but actually finding an appropriate specialist is difficult.

    Samaritans, no thanks. Any decision will be based on rationality. 

    Thanks for advice davek  -  encouraging.

     

  • Offline in reply to dj48

    Update. Private initial consultation booked, although 4 week wait. Cost will be £210.

    I have also written formally to GP expressing my concerns that their inability to respond to my symptoms and thus lose the advantage of early treatment is unacceptable. And that should this lessen my life expectancy then there will be consequences.

    The next 4 weeks will I think be difficult.

     

  • Offline in reply to dj48

    I'm having a similar experience currently. I've been back and forth to GP since July with symptoms. Was referred for an ultrasound which was normal, however the procedure that I really need is a colposcopy which she is saying isn't necessary as I only have one symptom that warrants a referral. Surely any symptom should warrant a referral. It's not a competition of how many symptoms you can get before actually being taken seriously. GP also asked me why I'm so concerned...

    I've booked a private consultation yesterday but also have to wait 4 weeks. My mood is so low as I'm already such a worrier without the additional worries now. Hope it all gets sorted quickly for you! 

  • Offline in reply to NG91

    My sympathy.

    Guess in part simple reality of NHS "under pressure"!

    My concerns amplified by already having C in 2 sites and by not being able to identify any other condition that might cause same symptoms.

    I shall attempt to bring forward my private appointment by telling them that I am prepared to travel anywhere in England.

    Four weeks will pass quicker than it seems now. Good luck for a clear result.

  • Offline in reply to dj48

    Up date! Symptoms continue after over 6 months. Finally saw a third GP at same practice who at least agreed to starter test to fond a non-cancer cause. Bit late, but might at least get to the truth!

  • Offline in reply to dj48

    Realised I should conclude this. Saw a 2nd private consultant in February. Convincing diagnosis, not cancer. Symptoms relieved. Pity new problems elsewhere!

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