Diagnosed with Hpv+

I had my results yesterday. There was seven other people in the room. It was very frantic and horrible. They put the camera down again and then discussed it between themselves and then said I have two options. I can either have surgery where they will try and remove it take some of the tongue and both my glands from each side of my neck as it is just gone into one of them or I can have six week round of radiotherapy with chemotherapy they pencilled operation for the 26th of this month,and other treatment in October I have to go back on Thursday with my decision I feel very pressured 

It’s stage 2

I tested positive for HPV in the base of my tongue, tonsils, and lymph glands. Initially, I consulted with the surgeon and was ready for the robotic surgery in Leeds. The following day, I met with the oncologist, who explained the options for radio and chemotherapy. Since I would still need radiotherapy even after the surgery, I opted for the radio and chemo treatments. This month marks one year since my treatment ended, and so far, my checkups every 6 to 8 weeks have been positive.

That’s great news have you had alot of problems with speech and swallowing and how long did you have the feeding tube

Kimmers916f06 said:

I had my results yesterday. There was seven other people in the room. It was very frantic and horrible. They put the camera down again and then discussed it between themselves and then said I have two options. I can either have surgery where they will try and remove it take some of the tongue and both my glands from each side of my neck as it is just gone into one of them or I can have six week round of radiotherapy with chemotherapy they pencilled operation for the 26th of this month,and other treatment in October I have to go back on Thursday with my decision I feel very pressured 

Thank you for explaining. 
I still think you don’t have enough information. 
What I would be asking is would you need radiotherapy after the surgery anyway? 
You are pressured which is unfair. You are not a doctor. How can you understand. Can your CNS enlighten you? 
I couldn’t have surgery but had 6 weeks RT and that fixed me. 

Thankyou for replying the surgeon said only 1 percent don’t need anything after and it sounded like I’d have more problems if I went down the radiotherapy and chemo route but the problem is once you have an operation there’s no going back from that so if you go down the radiotherapy route first, at least you’ve tried something before surgery  I am so confused I left a message for CNS to contact me today but they never got back to me

Struth! No wonder you don’t know where you are? 
surgeons v oncologists !!!!

Kimmers916f06 said:

I left a message for CNS to contact me today but they never got back to me

Keep pressing them and ask for a meeting with both surgeon and oncologist at the same time. You need to have them both in the same room. Take somebody in with you. It’s too big A decision to make on your own. 

Thankyou so much 

Hi. No particular problems with speech, my voice got croaky and dry but speech was ok. Swallowing is still a problem tbh, I can eat small meals but I have to have water with my food to get it down. tend to stick to soft food or very small pieces if I'm eating steak for example. My taste is not the same, I can't eat anything spicy at all, some things I can't taste at all and others are intensified. You just find what you can eat and adjust. My mouth is very dry and I take Xylimelts to help substitute the lack of siliva. 
The feedsing tube, I was determined not to have one from the start. Big mistake. A few weeks into radiotherapy and I was encouraged to have a nasal gastric in, it was such a relief. I could use to to take my meds too, water as well as the food. I wish I'd have had it sooner. 

One of the reasons I chose the option I did was I didn't want to delay the radiothearpy whilst I recovered from the Op. My treatment was 6 weeks. 5 days a week min-fri radiotherapy and chemotherapy on the first day I had radiotherapy then every second week. 

It's a tough journey whichever way you go but that said the outlook is positive.  Yes I have long term side effects but no everyone does and everyone responds differently. Even with the long term affects they are a small price to pay imo. 

I do feel for you, it takes a while to sink in, in fact it really only sank in for me after the treatment.  I reflect now more than I did then. 

Macmillan are amazing, ask anything, however small you think it is. Dieticians and speech therapist are great too. The whole team made me feel very well looked after. 

Feeding tubes can greatly help with recovery PEG,RIG or NG, ask about these at your next appointment, some will routinely offer this, others not so keen. Abbott nurses supply training and support for patients and carers.

If you go down the Chemoradio route they are normally a must have.