It's taking so long!

Hi, I'm new to this forum. I've just been diagnosed with 'cancer of unknown origin', presenting in several of my inguinal lymph nodes. I went to my GP in June and it's taken this long to identify cancer in the nodes. My scans and lymph node biopsy were reviewed yesterday and I'm being passed to both Gynae and Dermatology for further investigation, to identify a primary - they think it's from skin but it's already 'fairly undifferentiated' so they're not sure. A nurse told me they'll give me the first available appointment but I'm really worried it will take weeks to be seen and investigated before any treatment can be started. I now remember that my mother had pagets disease of the vulva and although I haven't got any such overt signs, I fear that may be the primary source. If it is, I gather the secondaries are quite aggressive, so I may already be at stage 3 or 4. I'm already in pain in the groin and lower back and I feel like I'm losing any opportunity to get effective treatment as it's already taken so long. Is there anything I can do to speed things up? Would going private to see a consultant help and could my care be integrated back into the NHS? Are there any specialist centres that might expedite this next stage? What can I do?

  • Hello Shebarass and welcome to the forum. 

    I can sense the frustration and sense of urgency in your post. We know from the many posts we get here that waiting for appointments and results can be incredibly hard. Given that it's taken quite a while for you to be told this news it's not surprising that you're worried about more time passing.

    It does sound reassuring that now that a cancer diagnosis has been confirmed that the nurse has told you you'll be given the first available appointment. I'm presuming that you were given this news on Friday? So it may be worth giving the hospital a call in the next few days to see when that appointment will be. If you're able to attend an appointment at short notice then do let them know that too as a cancellation may become available.

    I wonder if you might find it helpful to talk things through with one of our team of nurses. I'm sure that they'll be able to give you some support and information to answer some of your questions. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I do hope that you don't have to wait too long for your appointment. 

    Best wishes, 
    Jenn
    Cancer Chat moderator