Oropharynx Cancer (base of tongue) diagnosis

My partner found a lump in his neck and after a referral via the GP have been visiting our Hospital since 23 November 2016. After two FNP's, MRI, ultrasound, chest X-ray, pandescopy under general, bloods, etc etc have been "unofficially' told by the consultant that he has Oropharynx (probably HPV+) which has spread to the cervical lymph nodes in the left side of his neck. Oh btw the consultant didn't remember us from the first appointment to the second... great way to build confidence with your patient there...good job.

So...here is my beef.... we are two months into this process with one unofficial diagnosis and only after chasing have we had these tests and a CT scan coming this Sunday, but only after I threatened the consultant's secretary with a formal complaint. The NHS guidelines are that from GP referral to start of treatment should be no longer than two months. We haven't even had the MDT yet and staging meeting which will now be 30th Jan. So treatment which we have been told will be chemo plus radio (IMRT) for 6 weeks won't start until end of February which will be over 3 months from GP referral. Is this normal? I am seriously considering complaining to the hospital/Ombudsman as surely this cannot be correct? Is this how long a patient has to stew on what type/stage their cancer is? Is being pushy, overly assertive, a pain in the **** the only way to get things done? 

 

  • Hi todayisagooday

    sorry to hear of your frustrations and issues. My husband was duagnised with SCC tonsils that had spread to his lymph nodes right side of neck on the 8th December 2015 that was after FNA , scope, CT head,neck and chest with contrast and tonsillectomy with multiple biopsies under general. I have to say we had fantastic treatment though it seemed such a long time before he started his actual treatment - Feb 8th 2016 so I can see where your coming from. Once you actually gave the staging at the MDT you then have to have a dental assessment, raditheraoy planning and mask fitting plus  probable feeding  tube insertiin so this all takes time. My husband had chemo radiation ( 5 cycles of cistplatin plus  30 fractions of VMAT radiotherapy over 6weeks)If you ard unhappy with his care/consultant I would definotely make a compkaint to the Medical Director/Chief Exec of the hospital as the treatment is gruelling and you need to have confidence in your medics. If youd like to chat privately about what to expect ir somethings we found helpful to get you both through thennfeel free to send me s friend request.

    good luck

    Emma 

  • Hi there

    welcome to the forum no one wants to join, but once in the club it's the best place for advice

    i like many others on here am a survivor of a base toungue cancer that lodged its self as a sondary in a right lymph node and they found no secondary

    its important to have confidence and assurance in your medical team

    In terms of the timing

    i started my process with a trip to my doctor in early February 2014

    after several appointments at the hospital I had a scan and biopsy in mid April 2014

    on monday 28th April at 12:35 I was told I had a secondary cancer

    in the following days of that week, I had a throat exploratory to which I had a tonsillectomy (even though I had them out when I was 8) an MRI scan, then got told the following day that there was no primary around the head area.

    i then got transferred from my local hospital to Addenbrookes to which I had a further explority a PET CT scan,

    after they still had not found a primary ( common I am told) they proceeded with treatment

    i met with my mdt, had my imaging and planning scan

    it was not until Tuesday at 8:30 on 8th July 2014?that I started my Tomotherapy 

    It does take time but there is a process that's followed

    as newly will tell you, this is a difficult treatment to go through, but your husband will get through it.

    as your journey continues, ask anything you want as this is a difficult time for you both.

    Shout when you want

    vatch

  • Sorry to hear about your partner. 

    From the first time I visted the doctor, I was treated within 7/8 weeks. Diagnosed within 5 weeks. 

    My staging was never confirmed, ever. It was firstly stage 1, but then they found cancer in my neck. So I never found out. 

    I would make a complaint. Seems too long.