Possible AC diagnosis after HPV positive ca cells found in neck lymph nodes

Hi Mazzamoo2a9db3 

Welcome to the club no one wants to join. Quite a few people ive seen on here seem to get wrongly diagnosed to begin with me included. Gp feb 24, ac diagnosed july 24, treatment started 30/9/24 and currently cancer free.

The waiting between app and scans etc does seem like it takes forever but once you start treatment the time goes quickly. As for advice just try to keep busy and stay of Dr Google. I know thats easier said than done.

Use this space to ask questions etc everyone is here for you however you need, tips, advice or just let off steam.

Sending hugs. Xx

Hi Bungle1, thank you for your reply that gives me some hope , can I ask did you have chemotherapy and radiotherapy or just chemo ? 

Hi Mazzamoo2a9db3 

I had chemo and radiotherapy for 5.5 weeks, 28 sessions radiotherapy monday to friday got the weekends off. Chemo days 1 to 5 via a pump attached to me 24/7 and then again days 21 to 25 ( most people on here seem to have had oral chemo though ). The treatment wasnt a walk in the park but it wasnt as bad as i expected. Chemo and radiotherapy is the standard treatment for ac and is pretty successful. Xx

Thank you that really helps xx

Hello Mazzamoo2a9db3 

A warm welcome to our little corner of the Macmillan forum although I am so sorry you are going through all this and we all know the investigations can send stress levels sky-high.  These odd symptoms (stress-related) can show up which may well be what is happening with your tummy and back.

There are always delays in the beginning but so much is going on behind the scenes whilst they work out a treatment plan for you.  They are collecting all the information from scans and biopsies to get the full picture but that is little comfort to you.  In the early days I couldn't even answer the phone in case it was the hospital - I walked around in a bubble of fear and denial and dreaded more tests.  But once you have a treatment plan in place things do start to look a bit brighter, it is just getting to that point seems such a huge hurdle. 

I hope very much that the local team can give you some sort of reassurance on Wednesday.  Please let us know how you get on.  Everyone on here is so supportive if you need it, even if you just need to let off steam.

Big hug Marilyn

Irene xx

Thank you Irene xx

Hello Marilyn,

 I’m really sorry to hear of your diagnosis. It sounds very unexpected and I haven’t heard of anyone being diagnosed in this way. Most of us, myself included, had symptoms directly related to the anal area end for many of us it was a long road to diagnosis. 

It sounds like you have a really vigilant and proactive team who are working hard to get a clear picture before you start treatment. The waiting can feel like forever though. For me it was 10 months from presenting with localised symptoms of pain and bleeding before starting treatment, but the treatment was still successful. ( 5 1/2 weeks of chemo and radiotherapy). Mine was also HPV related and I had no clue prior to diagnosis. 
The anxiety itself can cause all sorts of symptoms and of course once we know something is wrong we become hyper alert to every physical change. 

I hope you get a treatment plan very soon and we are all here for any questions and support.

Sending hugs xx

Thank you I’m really really hoping the original pet scan that I had done is correct and that it isn’t all over . The waiting is the worst 

Hi Mazzamoo2a9db3 ,

Another warm welcome from me to the MacMillan Online Community although I’m so sorry to hear of your recent diagnosis & all of what you’re having to deal with right now, it’s a lot! 

It’s so anxiety inducing in those early days before you’re given a clear diagnosis & subsequent treatment plan as everything feels really uncertain doesn’t it? I agree that it could be anxiety driving the frequent loo visits. I remember noticing every ache & pain once I’d been told I had cancer, I had been suffering from some minor hip pain prior to my diagnosis & I managed to convince myself was mets to my bones before my surgeon & oncologist assured me the pain was unrelated! 

Your treating team sound as though they’re being really thorough, covering all bases before a treatment plan is put into place, try & look on this as a good thing as they’ll want to get all the information gathered together & decide on a comprehensive treatment plan that will deal with both your lymph nodes in your neck & the suspected anal cancer, hopefully all at the same time. 

I hope your appointment goes well on Wednesday & things begin to move a bit more swiftly for you. Please let us know how things go.

Nicola 

Thank you Nicola x