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Thyroid Nodule, suspicious lesions, MDT

Trinitytrace
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Hi people just after some general advice or support.

Last September I came down with left sided abdo pain, sever fatigue like I literally slept all of November which resulted in me being diagnosed with graves disease. Since then end of January I had a pain in my left side of my neck and felt a small lump and could see it which ended up with ultrasound scan which showed a level 3 nodule so was sent for biopsy, in time I waited my lymph node swelled so I rang consultant who brought biopsy forward which has showed suspicious lesions and something about the architecture, so was told I'm getting referred to an MDT meeting and to the surgeon, but seeing my consultant he says I've been referred to the regional MDT meeting as they couldn't agree to operate or biopsy. Now I know stuff is happening but it's so frustrating waiting like they have said it may or may not be cancerous but I'm sure you'll understand when that C word is mentioned then having to wait and wait is so frustrating, so does anyone have any insight of their experience on how long I may be waiting? As my neck has also swollen further back from my nodule aswell now and I'm just either worrying more or overthinking.

However that doesn't explain my left sided pain after an ultrasound scan they saw a cyst on my left ovary which everyone has thought was the pain but after seeing gynaecologist on 28th march he doesn't believe the pain can be from that and I'm having to live on oramorph to control it, anyway they now looking into bowel issue and sample came back showing inflammation markers so just waiting for referral to hospital for that also.

 

I'm just so frustrated at the minute and I don't have people to chat to about this that know anything.

Thanks for listening.

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    Hello Trinitytrace, 

    This is so frustrating for you and I just wanted you to know that you are not alone and I hope that there will be other members of our community who have been through something similar and that they will be along shortly to share their story with you. 

    Waiting to find out what they have decided at the MDT meeting is indeed incredibly stressful and this is something so many of our members have been through. Unfortunately there isn't anything you can do really other than wait and there are helpful tips on this page to help you cope while waiting for important news. Try if you can though not to anticipate the worst as there are so many other things it could be other than cancer. Avoid if you can looking anything up on Google as it will only make you more anxious and keep distracted and busy if you can until you get your results. 

    You are having to do a great deal of waiting at the moment between this and the hospital referral and I hope that you get some answers soon. 

    I hope it all turns out to be nothing of concern. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Thank you Lucie!

    I know it may not be cancer and could turn out benign that's my issue though just the delay, I received a letter of the consultant saying they cannot rule out a papillary carcinoma but also know cells in the thyroid are hard to distinguish between normal and cancerous. The letter says it has been to an MDT meeting, the local MDT meeting and now is going to regional, it's just so frustrating the wait tbh. I asked him while he waits for them to decide can he not do another biopsy, although an unpleasant experience wasn't that bad and they could kill time but he says that's what they trying to decide if surgery is best way forward with me having graves disease anyway or just biopsy.

     

    Think I'm just getting so impatient with this left sided pain being really bad and then more aches in my neck I just want to see some progress on something and I'm getting nothing!

     

    But thanks for the reply!

  • Offline in reply to Trinitytrace

    Update...

    First biopsy showed a Thy3a, had a second which showed a Thy3a... Met with surgeon and decided on removing my thyroid in the 15th September, went well recovery was good, sore throat but could eat anything. Went back to work 9th October have bouts of tiredness but Levothyroxine is in standard dose of 150mg so may need adjusting, have appointment on 2nd November to review.

    After leaving hospital I have rang at 3 weeks to be told results take about 3-4 weeks now being told they taking 6 weeks... So she has set my review appointment hoping they are back.

    Anyone else experiencing these wait times for actual biopsy results? I know these results will 100% tell me if it was anything but it's soooo hard waiting.

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