Just diagnosed with p16 positive squamous cell carcinoma at base of tongue

Hi. Welcome to the community. 
I can tell you that I had a T2 SCC , HPV + base of tongue for which I had 6 weeks of radiotherapy, no surgery. I’m over three years clear and living a good life. 
As a rule HPV driven SCC responds extremely well to RT. It does seem as if you are in limbo somewhere. Have you an allocated Clinical Nurse Specialist you could ring to find out what’s happening. 
Do you actually have that oncology appointment? 

I also had HPV driven base of tongue cancer and finished treatment in August 2018. The first thing my consultant said to me was how well these cancers respond to treatment - there's a very high success rate.

I agree with Dani - chase them up.

Linda x

Hi Dani, thanks so much for your reply. You are right. I am in limbo.  I have no Oncology engagement at all yet.  I do have a CNS, but only in Haematology for my blood cancer, no contacts at all yet with Oncology. 

Lack of engagement/progress with Oncology, after almost 6 months post initial GP appointment, is my biggest cause of stress.  I am hoping to get into the Oncology system soon, but I am worried about the growth of the secondary lymph nodes lumps, and my very sore throat.   I don’t know how aggressive this cancer is.

It will be great if it can be sorted with radiotherapy. I really appreciate hearing about your experience with similar cancer.  Mine is p16 positive, you mentioned HPV driven scc. Are they the same?

Hi Linda, thank you for replying as well.  It is very reassuring to hear that this is a treatable cancer.  Although you mention HPV positive as well, and I have been told mine is p16 positive.   Is this the same thing?  Thanks, Andrew

Hi Andrew.  Yes, HPV and p16 are the same.

Do you have the numbers of any contacts at the hospital to jog them along?

Linda x

Hi Linda, thanks, that's great to know.  No, I have as yet no contacts in Oncology.   My blood cancer is rare and dealt with at a different (specialist/tertiary) hospital, so not easy to leverage contacts between departments. I am chasing as much as I can though.  It is just taking a long time, and until I asked the community today, I had no idea how bad or not bad this cancer was.  I am much heartened by the comments about it being very treatable though, and this has already helped enormously. 

I have also been told some horror stories about radiotherapy.   How was it for you?

Thanks again, Andrew 

SlammedbySquamous said:

Mine is p16 positive, you mentioned HPV driven scc. Are they the same?

Yes, P16 is a surrogate marker for HPV. It’s easily identified with a stain on the biopsy sample which is much easier to do than looking for HPV dna which is why it’s used. 

Yes, there are a lot of horror stories about radiotherapy for head and neck cancers but the truth is, as individuals we all react slightly differently.  There is a long list of side effects which most of us get but the degree of severity varies from person to person.  The important thing to remember is that although it can be tough it is doable and there's a host of medications available to help. 

Linda x

Many thanks again Linda. I appreciate everything you have said.  I will work to get my treatment started as soon as possible. Andrew 

Thanks a lot Dani, much appreciated.  Andrew