Diagnosed with Hpv+

80 replies
159 subscribers
1616 views

Hi I’ve just recently been diagnosed and have the choice of the operation in two weeks or radiotherapy with a couple of bouts of chemo for six weeks. I’m just wondering what other people have chose. I know it’s an individual choice but I’m just wondering what route people went down and they experience their outcome they’re outlook Thank you

Deb11 8 days ago in reply to Kimmers916f06

Hi there, welcome to our group but sorry you find yourself here. We’re a very supportive bunch so please feel free to ask as many questions as you need. There will always be somebody here to chat to if nothing else.
I’m a carer, my husband was diagnosed with Stage 4 T4 HPV negative tonsil, tongue and lymph node cancer in early Dec last year. It’s been quite a journey, click on my name to read more if you want to.
My husband wasn’t offered surgery, it was too advanced so had chemo and radiotherapy. 2 x chemo (large doses) and 30 RT sessions. I’m not going to sugar coat it, it’s been a roller coaster. Lots of anxiety and tears but 7.5 months in and he sat and ate a curry tonight. He’s currently cancer free and feeling pretty good. Slight niggles, that I think most here suffer from but considering where he was a few months ago it’s a miracle.

I didn’t find this community until post treatment when everything looked very bleak, I wish I’d found it before, it’s a real life line. Stay with us, we will try and help in anyway we can.

Hugs from Debbie in west Wales xx

Kimmers916f06 8 days ago in reply to Miclee

Thankyou so much for your honesty

Kimmers916f06 8 days ago in reply to Deb11

Thankyou so much for reply has anyone here opted for surgery first and share their experience please,I’m beginning to wish I hadn’t been given an option and rather be told right this is happening it’s so hard to choose

Miclee 8 days ago in reply to Micky55

I completely agree. I wish I'd found this group when I was diagnosed. I'm happy with my decision but some of the decisions I made were probably for the wrong reasons. Lisa the macillian nurse who there at all my appointments was a tower of strength. She talked me through the options in great depth and extensive knowledge. In the end it was a bit of a no-brainer

Margaret853 8 days ago

I'm sending a hug and wanted to say that I've always found this group so helpful and supportive. It took me 6 weeks to find this community after I was diagnosed in 2013. It made such a difference to me and I wished I'd found it sooner. I found it a comfort to know that there is always someone understanding out there who I could reach out to at any time. There are people in the group who can give you all sorts of helpful tips, advice and companionship. I can't answer this specific query but I'm one of the many people who are here for you.

Kimmers916f06 8 days ago in reply to Margaret853

Thankyou so much one minute I’m leaning towards surgery the next minute I’m leaning towards radiotherapy and chemo no one so far seems to have had or been offered the surgery it’s so confusing

Margaret853 8 days ago in reply to Kimmers916f06

You must be having so much worrying confusing stuff spinning around in your head at the moment. When I felt overwhelmed I found it helped a bit to try to identify the next step ahead and just focus on that for the moment.

I was never given any choices. I trusted my medical team to do whatever gave me the best outcome. In your position I think I'd arrange a long talk with your team and get them to explain things more fully. Write down everything you want to ask them before you go so you don't forget anything when you get there.

Kimmers916f06 8 days ago in reply to Margaret853

Thankyou I’ve started my list which seems to be expanding rapidly I really appreciate everyone who answers

Margaret853 8 days ago in reply to Kimmers916f06

Take a notebook with you to write down everything important they say so you don't forget anything afterwards. Make sure you fully understand what's going on and don't agree to anything until you are completely happy that it's the best thing for you.