Waiting is a nightmare

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Hi I am currently being assessed and am finding the waiting stressful

Here is my timeline so far

1/7 suspected quinsy, sent to a&e to have it drained and was told by an ENT dr that it was a growth. Was given antibiotics as unwell and promised an ENT outpatient appointment 

August received outpatient appointment

30/11 saw specialist who said testing was needed

3/10 called from hospital to arrange CT

4/10 had CT scan with contrast

22/10 letter in the post for follow up appointment 

4/11 ENT specialist advised bulky right tonsil with abnormal cells will be removing both tonsils for Pathology

am scheduled for surgery on 16/12 with possibility of cancellation bringing that forward

found the news very unsettling and asked my boss on 5/11 for some leeway on work schedule which was argued and i signed off sick for my MH awaiting surgery

am finding the whole thing very stressful as had Carcinoma in Situ CIN3 in December 2007 and am worried about HPV link to the two.

wondering if anyone else has had the same situation and what was the outcome

  • Hi  

    am finding the whole thing very stressful as had Carcinoma in Situ CIN3 in December 2007 and am worried about HPV link to the two.

    Thankfully my smears have always been clear but nevertheless I did develop HPV driven oral cancer.

    Cervical cancer and oropharyngeal (largely) are caused by the same virus but there is no direct link.

    Waiting is awful. We all become expert at mitigating the stress but it can still overwhelm. All you can do is keep busy.

    If this is cancer the reality is that while the treatment is a real challenge it has a cure rate in excess of 95%

    Stay with us and ask anything you want. There is always somebody around to talk to.

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Justme113

    Welcome to the site , like Dani I had clear smear tests up untill my HPV driven T4N2MO and have just had  my first one since treatment finished.

    The anxiety is horrific and for many of us the worst time as we can’t control it and it seems to take over our lives,,,, but once treatment starts it seems to calm down.

    Keep off Dr Google it’s not helpful try and enjoy everything you love before treatment starts 

    Try ( even though it seems impossible) to keep the anxious brain busy I watched anything and everything on Tv and Netflix constantly eventually my brain would  stop all the negative thoughts and concentrate on the programme I was watching.

    Stick with us never a daft question x

    Debbie( sending you a big virtual hug)

  • So updating, had surgery yesterday to remove the tumour in my tonsil and I am now at home recuperating.

    so far throughout this process I have seen 3 different ENT specialists all under the head consultant (his name is on all my paperwork)   Tonsillectomy was done by ENT number 4 and then this morning on the ward the top dog came with him to give me an update. 

    So here is my question…

    given that this chap hasnt treated me is it odd that he would visit me on the ward to tell me that he will be phoning me personally with my histopathology results?

    is he being just a nice guy or am i over thinking?

  • am i over thinking?

    Yes

    Were the other three registrars? You can tell because they are Dr and the last one is Mr

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Yes they all said they were on his team, but never had any dealings with him until he came to introduce himself the morning after the surgery

  • Hi. I don’t think it’s odd. They work as a team and I think good consultants go out of their way to try and talk to their patients if they can.

    For me it wasn’t the consultant who gave me the news I had cancer but one of their team. 

    BTW - I got away with just having surgery for tonsil cancer. But the consultant was the one who gave me my news  

    Fingers crossed for your next steps and try not to overthink. 

  • Justme123 I’m guessing you’re in UK. If so it is normal for a Consultant to have a team of doctors working with him. The can be different grades, Senior Registrars, Registrars, and a couple of levels of more junior doctors. The title changes from Doctor to Mister when they pass their Fellowship exams, so both senior registrars and registrars can be titled Mr. The Consultant however retains the responsibility for your treatment and care so always leads the ward rounds and decides treatments. It’s not odd, it is how it’s always done. (I used to be a nurse in NHS)  Hope you’re managing with your sore throat just now, and very good luck with Histopathology. As you say the waiting is a nightmare!

  • I had my second surgery on Monday for neck dissection and to remove the remnants of the tumour behind tonsil. Always had the same surgeon even in appointments for updates. 

  • The title changes from Doctor to Mister when they pass their Fellowship exams, so both senior registrars and registrars can be titled Mr.

    In England and Scotland you only get to be called Mr Mrs or Ms as a consultant if you are a surgeon. Medics don’t. Mr oncologist is the top dog and he is Dr

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Always had the same surgeon even in appointments for updates. 

    I think maybe it depends even on the size if the department too. I was lucky enough to be seen by my consultant oncologist from diagnosis through treatment and recovery to discharge at five years. Luckily I was never pushed out to my local ENT. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge