Cancer referral nightmare

Hello - my name is Kevin and I have just joined this community. As the title suggests, I am currently enduring an anxiety-ridden wait for a yes/no answer as to whether I have stomach cancer, and am wondering if anyone else has/is experiencing something similar?

I was referred by my GP on 5 August under the two-week cancer referral pathway, as I was experiencing all the classic symptoms. I had a gastroscopy quite quickly on 27 August, but since then I have not heard a single thing, other than as a result of me pleading/complaining; namely that a virtual clinic to discuss my case was due three weeks ago today; and last Wednesday was told that a letter had been dictated, but was awaiting the consultant's approval. But still no letters received.

Even allowing for the pandemic, I'm appalled that I have not been kept routinely updated, especially when I read that NHS England has a target of 28 days from the referral being made to inform the patient whether or not they have cancer. But I am loath to complain too loudly in case I get pushed into the "difficult patient" and left to fester even longer...

Any thoughts, advice or similar anecdotes all gratefully received

  • Hi Kevin. The waiting is the worst no knowing what is happening. At the moment it would seem all targets are out of the window and although a letter is dictated it will be on a pile with all the others to be signed and really that's how it will be until it's sent. No one keeps you updated. You can contact PALS who are independent of the hospital and this will not mark you down as a trouble maker. The website of the hospital you attend will have this information. I hope all goes well whatever the outcome. Best wishes Carol

  • Thank you so much, Carol, for your reply. I guess you are speaking from your own frustrated experience? I would like to think that as they are taking their sweet time to get the letter signed and sent, this means I do not have cancer, but I suspect this is not necessarily the case ... especially in these, as you say, target-free times. Yes, I have thought of PALS and will take this route if the postman comes empty-handed again today. Thank you again, and wishing you all the best, too. Kevin

  • Hi Kevin. My husband was phoned by our surgery as the scan showed suspected lung cancer so this was very quick. It all escalated from there and within two weeks we were told it was stage 4 and incurable. Now nearly five years on he is still receiving immunotherapy so lots of experience of this forum and the NHS.   So once again good luck with results. Carol

  • That sounds too long I have breast cancer so i'm not sure if the timescales are different for that but they are supposed to start treatment within 62 days of you originally attending the first dr appointment!   I would speak to pals it may be that your case has fallen between the gaps and given what it's for clearly wouldn't be a good thing!! I went to my dr at end of july 28th I think and I've had surgery this week to remove the tumour x

  • Hi Carol

    I am very sorry to hear about your experiences, and I wish you and your husband the best of outcomes. I have many other health problems, so no stranger to the NHS, but this is a new ballgame for me. Thank you again for your supportive words. Kevin

  • Thank you for your reply, especially as you have just had surgery - wishing you the very best outcome. Well, I am almost at the 62 day mark, and don't know what to think ... will be trying PALS today. Best, Kevin

  • Hello GrouchyBear

    Letters nowadays from Doctors and Consultants are usually electronically signed and sent by email, there shouldn't be a delay.  If you have access to your health records (I think each hospital area is different in how it operates) that will give you acces to view all your medical data, results, letters and next appointments.  If you don't have access and your records say to contact you by mail only, then that could be the reason why.   In 2019 I went to my GP in July (that appointment took two weeks to get), then had a two week referral for a scan, the hospital obviously knew something was wrong, but inexplicably didn't convey that message to me and allowed me to go on holiday for 3 weeks (two weeks later).  The follow-up on the day after my arrival from holiday was then cancelled (as they'd double booked me), so it took over 12 weeks from seeing the GP to getting into the consultants office !  I was then given the news I had cancer (which certainly came as a surprise to me!) and then I had another excruciating two week wait for the staging.  I would suggest if you had a cancer referral in August, then even the worst hospital would have let you know by now.  Good luck, and keep asking for your letter.  Best, Diane