Just diagnosed

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Hello. I have just been diagnosed with left tonsil carsenoma.  The cancer cells have also migrated to my neck and caused that typical lump. My main issue right now is tinnitus and a stabbing pain in my left ear.  Apparently this is caused by the nerve in the neck being triggered.

My diagnosis took three months to confirm at secondary care level. But, it took three different GP visit with a different doctor every time before I was referred to the hospital. Finally I am seeing an oncologist tomorrow to talk through a treatment plan. 

  • Hi. I’m  sorry to hear about your diagnosis but this is a great place for help and support. Can’t believe it took three different GPs to get you where you are now but at least you persevered and now have a diagnosis and can get on with being treated..Good luck tomorrow, let us know how you get on 

  • Hi Stevie - how are you so far fella?

    I’m Nige, I have cancer in the tongue and throat - diagnosed over a year ago - actually started treatment last December, finished chemo and radiotherapy on the 10th January this year - I’m not very much further forward as those treatments haven’t been successful for me - I was refered to royal Marsden in London.

    my first appt was 13th Aug and since then I have had tests , scans and appt after appt and now being refered to immunotherapy and possible clinical trial - fingers crossed.

    From my experience to date, one piece of advice I would give is don’t let time pass you by, always ask what is going to happen and when, don’t leave thing in abeyance.

    If you want any information or help I can give you, please just ask - will give you any info from my experiences.

    Take care - strength and Courage

    Nige

  • Swollen tonsil and ear pain on one side are classic symptoms, should result in urgent referrals to ENT.

    Keep the forum updated with your progress, plenty of posters who have been through or are currently going through the same treatment you will be receiving....lots of sound advice and support.

    Michael

  • Hello Nigel. I'm so sorry to hear that your current treatment plan has been unsuccessful.  I do hope that the immunotherapy has a positive outcome for you.  This isn't a pathway any of us would choose.  I'm still getting my head around the diagnosis and will have to just hit the treatment plan head on. I've already changed my diet, but am finding reaching 2500 calories a day a difficult target.  Particularly when you need to avoid sugar and carbs.  

  • Hi Stevie Welcome to the club one of us wanted to join. I’m 7 years post chemo radiotherapy for tonsil cancer with 7 lymph nodes. Once you  get  a plan in e things seem to settle down. It’s a tried and trusted treatment with excellent results do you know if you are HPV positive that’s the common cause for tonsil cancer remember head and neck cancer do respond extremely well to treatment. It’s hard I can’t lie but if I at 61 can do it so can anyone. One day at a time is a good start. Sorry about diagnosis time it can happen sadly all,too often but you are in the system now. 

    best  wishes Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Stevie and welcome to our community. Between us on this forum we have years and years of experiences of head and neck cancers to share and pass on.

    I'm picking up on your post as I was in the exact same position, with the same tonsils and neck lymph nodes diagnosis ( including that neck lump), this time last year.

    To give you an idea of how your treatment plan might pan out, I was diagnosed early Oct 24 after September biopsies.

    So, PEG feeding tube fitted in asap in Oct, then toncils and lymph nodes out surgically in early Nov (2 night hosp stay), wisdom teeth out mid-Dec (before RT starts), and then Chemo and RT started end Dec and throught the whole of Jan 25.

    As this is generally a curable form of cancer, I had a very similar outlook as you described, of just take it on, head-on, and hope the recovery process isn't too bad.

    But being truthful and up front, recovery is difficult but very much do-able, as most of us on here will testify. Following treatment there's a roller-coaster of highs and lows as you experience and then overcome drinking, eating and swallowing difficulties and throat pain management.

    But we're all here to help and advise what we did, and how we coped and hopefully we can help get others through this tough time.

    And if any of this raises any other questions, please come back to us as we do like to share, reassure and encourage those in your position, just about the start this journey of treatment and recovery.

    Best wishes 

    MickyC

  • Yes apparently I am HPV 16+.  That's a strange one.  I'm meeting with the medical team tomorrow afternoon.  I guess my most concerning thing at the moment is the possibility of the hospital wanting to operate before the treatment plan to install a peg, just in case I need one later.

  • I have had the usual biopsy and have been told that I'm due for a five week combination of chemotherapy and radiotherapy.  The ENT Consultant said that this has the same outcome as surgery?  I understood that medically they hesitant about removing tonsils as the risks of a catastrophic bleed are high? 

  • So sorry to see you here. I had cancer at the base of my tongue where there is tonsil tissue. HPV driven cancer is uniquely sensitive to radiation and cure rates are high so hold on to that. The treatment is rough but doable. If you are offered that feeding tube grab it. There may come a time when you can’t swallow pain meds let alone foods. Some of us manage to avoid tube feeding but not many. Im now chasing seven years out of treatment and fit and well. 


    Can I ask why you are avoiding sugar and carbs? 


    There is a great thread on treatment to read. It’s here 

     Helpful tips for those about to start treatment.. 

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • I was told that sugars are inflammatory and best avoided.