Whirlwind

My dentist said yes when I asked him if it might be cancer before my tests and treatment started, the next time I heard the word was about about 8 months after my 1st op when my consultant said I was cancer free.

Hi Wryneck. My diagnosis was very different I had a lump in my neck been there 6-8 weeks went to g p he put his hand on my neck then uttered the words I’m putting you in the 14 day cancer pathway. Now I am 3 years and 3 month post radiotherapy for tonsil cancer with several affected lymph nodes. I had 35 radiotherapy sessions and 3 big chemo treatments . 
Welcome to the club I too was h p v positive squamous cancer . Treatment s hard but if i can do it anyone can.  No surgery for me as one if lymph nodes was closed to spinal cord. 
Yes I never thought I would have  my own oncologist either, but he was  snd still I’d my lifesaver. 
Any questions just ask 

Hazel 

Strange thing cancer. It does set you apart even if only in your head. I knew I had cancer the instant I found mine at the back of my tongue. The following weeks were simply a wait for confirmation and my consultants  first words were “sorry but your diagnosis was correct”  

I didn’t really talk about it at all till I was faced with having to Skype my daughter in Berlin to tell her 

Talking about it was admitting I had it which was crazy. I did dream fir a while that it was all a mistake ! 

Beesuit said:

Talking about it was admitting I had it which was crazy. I did dream fir a while that it was all a mistake ! 

So much felt that, all the time when at every turn was getting the worst case scenario, but was still thinking that somebody was going to call and say it was all a mistake. Didn't happen.

Sorry you find yourself here Wryneck, but you're in the right place; great support to be had 24/7.

Hi Wryneck,

I was diagnosed with HPV Base of Tongue Cancer in February 2021 (then tests, scans and biopsies). I had surgery in April to remove the offending lump as well as having a neck dissection. This was followed about 6 weeks later with 30 lots of Radiotherapy and that treatment ended in early July 2021.

So whilst not a great year, its had its ups and downs but its going quite well now. I can understand not wanting to and wanting to talk about it and so I hope you find this forum a useful place for that ! If you click on my name I believe it should take you to a summary of my last 9 months.

Best wishes

Richard

Hi Richard great to hear from you and have read your profile perfect.

perfect analogy of what we go through. 
Onwards and upwards 

Hazel 

Hi Richard. You are doing so well and not even six months out of RT. Brilliant. 

I agree with Hazel Richard. Great profile. I’m about 6 months ahead of you and if it’s any help my lymphodema seems finally to have dispersed, so hang in there and keep up the massage. I still massage each night before bed but that’s all now. (It’s also a great way to have a thorough check for lumps and bumps each day!) Glad your progress is going smoothly. 

Hello Richard, sounds like my next six months. With my surgery on Monday - lump to go and neck dissection so very similar. Do you have any tips on making recovery as comfortable as possible. When were you able to eat? What did you eat? 
W

Hello Hazel,

Thanks for replying. that was the potted version!

I found my neck lump back in the summer. Contacted the doctor end of September. At the face to face I had a probationer doctor and when I said I thought it could be a throat cancer she said probably not. I came away with a non urgent referral for an ultrasound. I asked if I could be on the 2 week pathway but they said it wasn't of any great concern. I read a bit more and saw that 70% of painless and persistent neck masses are malignant and should be treated as such until proven otherwise so I went into the reception to ask for an urgent referral but came away empty handed.  

Got my ultrasound 13 November. The ultrasound person said well it's not solid so it's not a tumour snd I thought marv it's not cancer. She said it was cystic and I asked what that meant. She said filled with fluid. I asked what night cause that or what it might mean. She shrugged, said she didn't know, said maybe my GP would want je to see an ENT.

I skipped out of there having decided I didn't have cancer and had a lovely day. That was Saturday morning. Monday afternoon my GP (U say mind but I mean a msn I've never met or spoken to before - group practice and all that - telephone consultant on with one, face to face with another, now Mr 3rd. He said the lymph node was necrotic & it was necessary to rule out cancer so he was putting me in the 2 week pathway. Oh. 

Almost exactly two weeks later I saw the ENT consultant & by then if read up more & decided yep this was HPV throat cancer, probably in the base of my tongue as I'd had my tonsils out aged five. I liked the consultant straight away and felt very safe with this confident man. He felt my neck  "That shouldn't be there" he said. Flexi-endoscopy and sent me off for FNA which wasn't painful even though we got up to five passes. It felt oddly archaic, no anaesthetics just a needle probing in the lymph node and a biomedical scientist mixing dyes and smearing slides and then the pathologist looking down her microscope. She wasn't able to get enough cells so after a quick consult wit's the consultant we went running! Yes running along corridors to catch the consultant radiologist -before her clinic finished for the day. She was an oncology specialist I think, I got an ultrasound guided FNA. This was very dramatic because in this quite small room there was a team of five plus the pathologist. It felt like I'd gone from the 18th century to the 21 century in just a few minutes. Someone said branchial cyst & I thought there you go not cancer. Then she said core biopsy & I thought bollocks cancer. Then she said sorry about all this but if we do this you won't have to come back. That stumped me. That could go either way. You might have the impression by now that I do a lot of overthinking. Yep. That's me. 

The consultant said he was looking at this being HPV throat cancer & would arrange MRI & Pet-Ct and they came up really quickly - within a week. 

I saw the consultant again before the imaging & all of the biopsies were back but he said from the cytology they had the working diagnosis was HPV throat cancer. He did another endoscopy, this time with  the camera and showed my my pink & gloopy throat and pointed to the base of my tongue and said he thought that's where it was but we'd  hopefully know from the Pet-CT scan. I read up some more and worked out all the stuff about unknown primaries & looking for tumours when you find a metastatic cervical node and I crossed my fingers that the scan would find one. It no longer crossed my mind that this wasn't cancer & I preferred the idea of knowing what I was tackling not this idea of a hidden primary. 

Week later, scans done and back to see the consultant. Yes, he said, this is HPV throat cancer in the base of your tongue. It looks small, hopefully less than 1cm. He said he'd booked me for da Vinci trans-oral surgery to remove the tumour & do a pandosvipy to biopsy & a selected neck dissection at the same time. Next Monday. That was a surprise. He said it was best to move quickly & with Omicron Building I agree. Told me I have a 10 to 15% chance of the surgery being all the treatment I need but also talked about what radiation would involve snd that I'd need to see my dentist. Read up some more & can't see anywhere that you can avoid radiation id you neck jets. But I'm keeping & open mind and being optimistic. I feel I am in the best hands possible and in the awful lottery of cancers this isn't the worst draw.

So now it's Saturday & I'm doing housework to build a nest to recover in. I report to the hospital st 11.30am Monday. I have no idea what to expect when I wake up and would welcome hearing other propl's experiences of waking up and the week or two after surgery. 

This is the first time I've gone through the whole thing of the last five months. I'm single with very elderly parents who I have not told. Hoping to polo neck it for a Christmas visit. 

W