Just wanting to know an average time scale waiting for diagnosis confirmation

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Waiting on confirmation of Papillary Thyroid Cancer Diagnosis.

Hi, So, I found a lump in my neck, around 15th June, took til 23rd June to get an appointment with my GP. 28th June I had a blood test for thyroid function, came back okay, I still wanted to know what the lump was and no one really contacted me about the results or what was next. I made another appointment on the 9th July, They  said it was probably just a cyst. So they ordered an ultrasound but only because my anxiety was so bad. radiology was the 23rd July. So after this I was told immediately by my GP that they think I have papillary thyroid cancer and apologised and said it is highly suggestive of this. I got into an appointment with ENT on 9th august and they booked a needle biopsy and ultrasound. I still don't have a date or any idea how long I’m going to be waiting for this, which may not even give me a diagnosis. I  called ultrasound on the 20th august and they said my appointment should be "soon"

8th Sept I start to panic again and call through to ultrasound to see if they can give me a date.  They immediately said I could have the biopsy and ultrasound on the 20th sept, but then   called back 2 minutes later and said that I need the specialist and they will have to call me back. Its been two days so I left another message and made a phone appointment with my GP which will be on Monday.

I have not been to the GP much in my life because of anxiety so have very little experience with the medical field in general. I've struggled with self worth and if I am important enough to be seen but and have been in CBT for half a year up until the GP told me the suspicions. Despite using my new CBT techniques to get a handle on my ptsd and panic attacks I'm finding my self worth is really taking a hit each time I have to follow up or try to find out a time scale. I would like some advice on if I am being too impatient waiting for my diagnosis because I find bothering people who have really important busy jobs really really difficult and I want to keep being a nuisance to a minimum. I don't have any family left I can talk to for support despite being in my 30's just my partner and a couple of friends and I really struggle to put any of my anxieties on them.

If anyone has experience with how long the targets for diagnosis for this are I would be really grateful so I don't keep calling every two weeks. I just don't know what I should be doing. it's hard to put it aside and concentrate on anything else without a time goal. [edit: spelling]

  • Hi.

    This sounds like you've really been given the run around for your appointments. I can really relate to how frustrating and lost this feels when all you want is to just know what's next.

    Speaking to your GP is a good idea. Once you're on the cancer referral pathway the next step should be in place within 2 wks (from your ENT appt on 9th Aug!). For the needle biopsy as it is in head and neck, it is done by a consultant not a technician and I can imagine that holiday season as well as the NHS backlog is causing delays. But that really isn't your problem, and you have every right to be pushing this hard. You don't need the excuses, just the right timescales. I would suggest you contact PALS at the hospital for support with how to move this forward. 

    I found my lump mid May and had the total thyroidectomy and right neck dissection at the end of July. This still felt like an enormous amount of time and was constantly waiting for a phone call / letter. The weight of the worry can really make you feel ill. I'm not sure if it's the same, but I managed to be calmer over a weekend as I wasn't expecting to maybe get an update? I hope you can ease your worrying slightly this weekend and spend some time outside, even if just a short walk to see the trees, hear the birds and be in the current moment. I also found being around my 1yr old nephew a good distraction as it was impossible to be thinking about something else as he kept me on my toes. 

    If it provides you any reassurance, my consultant was very clear that papillary thyroid carcinoma is incredibly slow growing so these delays shouldn't impact outlook and treatment plan if it indeed is confirmed. However, in my journey I found the initial waiting still the hardest part so far to deal with. 

    Sending you lots of positive thoughts and I hope you appointment on Monday gives you something tangible. 

    E. Xx

  • Hi E,

    Thank you for your reply.  It was comforting  to know I wasn't being mad thinking it was taking a long time. I will speak to the GP and see what they say then contact MCALs (which I think is our version of PALS here)  the worry hasnt really made me feel ill as I had a couple of other big worries taken off me recently so at least I'm feeling pretty healthy, which is sort of playing into not thinking I need to be seen quickly. It's just affecting my work a bit I think as I'm self employed my attention span has just dropped off the planet because I'm home alone trying to ignore it. Which probably isn't the best plan? I don't know. I do always feel calmer at the weekend so it is just the waiting that is the hard part. I get out for hikes and walks/runs/swims when I don't have any work on. I just really think about it spreading a lot as I lost my mum to LungC.

    I am glad to hear you had yours out nice and prompt. thank you again for helping me gain a bit of perspective on time scale I know I've got to be a bit more assertive now. take care and all the best

    Aj x