Hello, diagnosed today

Oh bless you, I cant imagine having a new baby and finding out about this also!  My husband has P16+ hpv base of tongue and has had the treatment that you are due to have.   2 chemo, six weeks of radiotherapy. His ends this Friday.  It has a good outcome so even though its in a difficult place, symptoms wise, its outcome is better than some cancers. Everyone is different,but my husband has felt tired throughout the treatment.  But some people sail through and are only tired at the end! I hope you arent too bad with a new baby to look after. 
any questions just ask...it wasnt so long ago that I was new to this community!  The staff will be wonderful and very supportive, and really make the whole procedure better.  One tip...ask for eye holes to be put into your mask as it helps it not be so claustrophobic.  My husband was dreading it but he takes lots of deep breathes to slow his breathing down and says it really helps him.  The actual session is only around ten mins, and he copes fine.

wishing you all the best.  Whereabouts is your tumour? Tongue, tonsils?

1. Thanks chickadee. My husband is going to be able to take some time off work so I won’t be alone through treatment with the baby, he will be there too for everything, which I’m so grateful for. They aren’t sure where tumour is yet, consultant has had a look down my throat/back of nose twice with camera and said my left tonsil looks slightly abnormal and I have a patch (or crevice as he described) at the back left of my throat too,  so CT scan and potentially PET scan to see if they can find primary site. I have an enlarged lymph node which is what prompted me to get it checked and the biopsy from that has came back p16+ SCC. 

Hi. Oh dear sending hugs and congratulation s on your new baby .  I was 61 when diagnosed with HPV tonsil cancer. Treatment isn’t easy but it’s doable and the cure rate  is excellent.

 Glad your hubby can take time off you will need as much help as you can  get. Any questions please ask we’re a friendly lot always one of us around during daytime. Try to eat while you can prior to treat starting.

For the mask eyeholes are a godsend please aso  and take everything one day at a time. 
Hugs Hazel 

Hello. I bet it’s so overwhelming having this diagnosis on top of a new baby! I’m 14 months post treatment for tonsil & lymph mode hpv 16+. I had bilateral tonsillectomy, PEG fitted then 6 weeks of chemoradiation. 30 x radio & 6 x chemo. Any questions just ask. 

Apparently its hard to diagnose base of tongue cancer as the tongue constantly moves so when camera goes down it can be hidden by the tongue movement. sounds like yours could be tonsils... I take it yours is caused by the HPV virus?  My husband has lymph nodes affected on both sides of his neck.  The lumps are going down now although his neck skin is very sore.  Buy a good emollient cream (non perfumed as it gets very sore and perfumed products will sting it like hell!) and treat your neck constantly with it from the start to help your skin. Ive met or heard of so many people who have had this cancer and are all clear, so its very treatable.  so glad that your husband is able to be there for you; its hard on us carers as we have to do everything whilst also worrying about what our partner is going through!  And for your husband it will be doubly hard with the baby to care for too, so plenty of patience will be needed! I know it is in my case! On both of our parts!!

you probably will have a CT and PET scan, we did.  Its the waiting for results thats hard and worrying, 

thinking of you, and please do ask anything, as people on here are great!

hugs

x

Chicadee16 said:

Apparently its hard to diagnose base of tongue cancer as the tongue constantly moves so when camera goes down it can be hidden by the tongue movement

Any half decent ENT consultant will have you stick your tongue out. Both tonsil and BOT cancers though can be small and found only on biopsy of numerous areas. 

Oh my, that is a lot to deal with. I'm so pleased that your husband can take time off work to support you.

I didn't have too bad a time with treatment, I was just very tired by the end and for a month or so after, also struggled with nausea and needed a nasogastric tube for that last month or so - they are a godsend when you don't feel up to eating. My mouth & neck didn't get too sore. Less than 6 months on, I'm clear and pretty much back to my old self except for a dry mouth. 

Sending love and wishing you lots of luck. Once treatment is under way you can take lots of naps with your baby beside you, and hopefully be well again before baby is even old enough to remember anything was wrong. 

x Catriona

Wishing you the best. I'm a bit further along on the journey - tonsil cancer, removed 4 weeks ago, will be starting radio+chemotherapy soon. Except my babies are 21 and 24 so that is different and a lot easier for me. I really do wish you the very best. They told me the tonsillectomy would be awful, and actually it was ok (not fun, but not bad at all). Hoping the rest is the same. very best wishes. Mike

Just to wish you all the best. I have HPV tonsil cancer with large nodal mass on the same side. Six weeks’ radio (of which I’ve just completed week 4) plus two chemos (at start and mid-way). I’ve found the advice and support on here to be invaluable. Still a way to go but as you’ll have learnt already, our prospects are pretty good. 

Hi am thinking of you.  How are you feeling now?