Neck cancer

Hi Shel81

I was diagnosed with HPV16+ tonsil cancer in Feb 2023....treatment was 30 radiotherapy and 4 chemo...tough going but we really have little choice....good news is that HPV16 plus cancers have a circa 90% cure rate...

Keep the forum updated with your progress...plenty of sound advice and support from patients who have walked in your shoes.

Peter

I’m about to start treatment for stage 4 tonsil cancerP16 HPV positive 

early March scheduled

Thanks Peter I get my results on the 18th for hpv 16 status and pathology results for tonsil and tounge x

Have you had tonsils taken? Wishing you the best of luck with your treatment x

Hi Shel81 

Welcome to our little Community. There are lots of friendly people here who have the T shirt and can help you through this.

I am six years clear of radiotherapy to the back of my tongue and I am fit and well. Your cancer is likely caused by HPV which has a classic presentation of a secondary in a lymph node,  having a cure rate of over 90% so hold onto that. 

The treatment is pretty awful  but it works.

How old are your children? Do you have family who can support you because you will need a little looking after?

Hang on in there, stay with us and don't look for answers on Google. Look to your team and to us here to start with 

Hi dani 

Glad your doing so well  , my children are 15 , 18 and 24 but my eldest had a bad motorbike accident 2 years ago he's unable to walk unaided I'm his carer , I lost my mum 2 years ago to lung cancer and my dad is disabled he only has 1 arm , my 18 Yr old daughter has been amazing she's been looking after me all week since I had my first operation , so glad I've found this community thanks for your reply it means alot 

Shelley x

Good evening Shel81, i was 48 when i had my first cancer and had two children just starting secondary school, i did have radiotherapy after my first operation which was targeted to the floor of the mouth, despite it coming back i am now 15 years since my last operation and living a perfect life despite what i went through, normally most operations are less stressful than the treatment and its surprising how quick we heal up. The radiotherapy does take it out of us and fatigue will be an issue for up to 3 months before things settle down. Your consultant is right in saying they have caught it early and is very treatable with good recovery rates plus you have age on your side which i think helped me out a lot. Just listen to your body and take each day as it comes and don't overdo things as we do try to run before we can walk, as the saying goes. I wish you all the best for your results and any further treatment/surgery, take care and hugs to you and your children.

                                                            Chris x

Hu I’m Hazel approaching 7 years since my HPV 16 tonsil cancer with 7 affected lymph nodes I had chemo radiotherapy and am living a great life I was 61 when diagnosed. Treatments not easy but if I can do it any one can. Take everything day by day keep off dr Google .A sur eyeholes children will step,up and if you can get a rotary or hospital transport arranged for treatment it will help,you. 

hugs 

Hazel x

Hi Shel and welcome from me.  Tonsillectomy pain is horrible.  It should get significantly better at day 10 - 14 post surgery.  You're almost there!

This stage of treatment is agony waiting to hear what the next steps are.  Hopefully it will all be clearer in a few more days.  I have had 2 neck dissections and they are nowhere near as horrible as they sound.  I found them much easier to cope with than the tonsillectomies!

Hold onto the fact that these cancers have a very high cure rate and most go on to have a good quality of life after treatment.

As you get to know what the next steps are, come back and ask more questions.  In the meantime stay with us and we have your back on this one!