Thyroid lump worries & anxiety - & feeling invisible

In July whilst FaceTiming I noticed a large on my right side of neck so followed nhs guidelines and kept an eye on it for a few weeks. 6 weeks after first noticing it there was no improvement so I made an appointment to see the gp- I didn't realise it would be 7 week wait to get a face to face appointment or in hindsight I would have made the appointment when I first noticed it , however at 49 years of age this was the first time I have needed to see a gp other than when I've been expecting a baby. My gp was great, sent a referral to lump clinic at ENT clinic and sent me for blood tests. Since then everything has been a complete whirlwind and I have no clue what is going on and because things are going on so fast I am more anxious about everything. Within 2 week of my referral I saw ENT consultant, 1 week later had an ultrasound, 2week after had needle biopsy, 2 week later consultant team member told me suspicious cells so would be having a hemi thyroidectomy the beginning of January, but the following day from speaking to consultant I received a phone call wanting me in for hemi thyroidectomy the next week(which I couldn't make)so had it 10 days from being told I was needing one - I had that done Tuesday and am home recovering but feeling completely overwhelmed and in the dark as to what is going on and what is happening. I read these forums and everyone seems to know so much about what their lump is,like there's a code describing it all , but I feel like I am literally walking around in complete darkness as if I have missed out on some important conversation because even when I received the suspicious cells result from ENT she spoke to me as if I had already been told that's why I was there and she was just getting me ready for the operation. I really am feeling alone and worried about it all, family /friends tell me it's great they've operated quickly but I keep thinking why have they done this so quick especially when I was told operation would be around 6 weeks time, also having the operation when nurses were on strike made me feel like it was urgent. The hardest thing is I'm having to put on a front that all is well because I need to be fine for my children and  husband cos I see the worry and scared look in their faces (especially my husband who wells up if I rub my neck). I am actually relieved it is Christmas Day tomorrow because I figure I won't receive any phone calls this week telling me I need to go back and have another operation or something, but also because im on Christmas break from work I now have time to think about what is going on and to realise how little I know and how little information I have received - I assumed my blood test results would be uploaded onto my nhs app but nothing is on there not even referral to ENT or any of the hospital appointments. 

I'm not sure really what I expected from this posting except that I feel offloading it somewhere has helped me in a way to clarify the mess going around in my head. I know that most thyroid cancers are curable , I guess I just feel I'm swimming around not actually knowing what they think it is and whether they are working towards it being the more aggressive thyroid cancer purely because it all seems so rushed to me.

Thank you for the opportunity to air my worries, even posting this is difficult as to choose a category I don't feel I fit in the newly diagnosed/ nor the pre diag signs & symptoms. I'm in limbo, not knowing where I fit but burdened with the worry of ifs/buts , children/finances, working/taking time off, what happens next and what is going to happen. 

 

  • Hi Chris1973,

    Welcome to Cancer Chat. I'm glad you found the forum, and it's always a safe space to write things down, air any worries, vent, or reach out to others.

    I'm sure this all must be at least a little concerning, especially without any answers as to why certain things are happening. It is good to hear that you haven't had to wait too long for your appointments, although I appreciate this still doesn't provide the answers.

    I'm not sure what they said would be the next step for you, for example whether you are currently waiting for an appointment, but it sounds like it would be worthwhile giving your doctor a call when you are able to, to try to understand more or at least when you should expect to find out more.

    Before you are able to do this, try to keep yourself busy to help keep your mind off any worries.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  •  

    Hi Chris,

    A very warm welcome to our forum. I hope that you managed to 'put a face on' yesterday  and that all of the family had a happy Christmas. I was diagnosed with breast cancer 13 years ago and had a lumpectomy. The following year, I was again diagnosed with a new primary in the original breast and had a double mastectomy. I know that our problems are in different areas, but wanted to let you know that it is not usually until a couple of weeks after surgery, that we  get confirmation of the final figures and types and then things become a lot clearer. 

    The tissue removed at the time of surgery is sent to pathology for tests and you should know more at this stage. I wouldn't lay any importance on the speed with which you have had your surgery. It sounds as if you were fortunate to find a slot before Christmas. The initial wait was probably allowing for the holidays, strikes, etc.

    It is good news that you have only had to have half of your thyroid removed and not all of it. This must meant that all of the 'suspicious cells' are in that half. I understand that this operation is sometimes carried out to see how 'suspicious' the cells actually are. I had a third similar type scare with my other breast, 6 months after my initial operation. My consultant informed me that he was pretty certain that my tumour was cancerous, but fortunately, it turned out not to be.

    Waiting for clarification is always a worrying time and, whatever the outcome, it is much easier to know than to give reign to your imagination. 

    I agree with our moderator Ben's advice, about phoning your GP and about keeping yourself busy meanwhile. If you don't get any further doing this, I am sure that your GP will pursue this with the hospital, if you ask him/her to do so. You could also phone your consultant's secretary and ask for clarifacation, stating that you feel totally in the dark. I feel that you should certainly have been given a better explanation of potential outcomes prior to surgery.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi Chris  

    Your post sounds almost identical to the beginning of my journey through cancer and I felt exactly the same. My cancer had originated in my right tonsil rather than thyroid though. I too felt like everything was a whirlwind and people were speaking to me as though I knew what they were talking about. I eventually took the bull by the horns and questioned everyone if I didn't fully understand or felt I needed more information. However, I also made the decision once I actually had a full diagnosis that I only wanted to be given crucial information that I needed to know at any given stage. I'm now through the other side of treatment and waiting to have another scan in a couple of months to see if it's been successful. At which point I will then ask to see my scans and get the original staging info etc. 

    I agree with everything said in the 2 previous replies about how suddenly quick things were then the wait. It was exactly the same for me and as Jolamine said the tissue needs to be looked at before results can be analysed and reported on. It's also likely to be delayed because of the holiday. 

    Keep strong and try to enjoy this time with your family before the potentially hard work of treatment starts. Whatever it is, you can do it. Much love

  • hey, I had my surgery on 16th December.  here if you need to chat/vent etc x