Hi Bobby

I've just been diagnosed with tonsils cancer that's spread to lymph node with hpv I've had biopsy scans and just been in for camera and they said they can't operate, still hoping its curable and I'm so scared waiting for decision from board how are you doing now  is your treatment finished 

Alli x

Hi Alli.

So sorry to hear your news.

First of all, i appreciate we are all different and the level of cancer and how you respond to treatment will be fairly unique to everyone. 

Few initial bits...yes i fully understand this is a scary time, i was told that HPV cancer in the throat etc, has a very high success rate in being treated, not sure if you have had MRI or other scans yet, to confirm it is only in the neck/throat area.

To cut a very long story short

I received 3 x chemo and 30 x sessions of Radiotherapy, i was meant to get 6 chemo, but only got 3 as it was found i had a genetic heart issue. After treatment which is pretty tough on your body especially ability to eat/drink. It was found i still had some cancer in lymphnodes.  Had an operation 4 weeks ago to remove 13 lymphnodes.  Getting a scan in few months to hopefully get all clear....

Try and stay strong, in the first few weeks i hoped for the best, but also made initial thoughts on planning for the worst, certainly puts things into perspective. 

I will try and send you another message, and a link to a blog i had started, but your on a journey, and like all journey's, there will be twists and turns, keep focused on the destination though..

Ask away anytime and will reply asap

Speak soon

Bobby.

Hi Bobby

Thank you for getting back to me hope its good news for you and that's the end of your treatment, had scans and was told that it hadn't spread so far just had op to have cameras in throat and waiting for the decision on treatment I called my Macmillan nurse and she said they would decide if treatment would be curative or palliative I didn't even think about palliative so I'm really scared now, she was probably just describing the process but its really knocked me for six and im normally really cheerful and positive but I just feel miserable

Alli x

Not 100% sure how linked the Macmillan nurses are to your Oncologist etc. So they are maybe just giving the wider conversation. 

They decided against removing my tonsils, as it can be very sore in Adults, but they try to avoid surgery these days i think?. 

Easy to say, but try not to worry to much, as long as its not spread to other areas, is generally a good sign, does take them a few weeks to organise and plan treatment. 

Try and if possible get out walking and excercise, i was shocked how much chemo etc can knock you for 6...

Not sure if your still working etc...suggest keep working as long as possible, as you will need the time off, once you start the actual treatment...

Keep me posted

Robert. 

Hi 

I ended up getting in touch with Macmillan nurse and explaining my concerns you were right she was just telling me how it works with the mdt  and told me that there's no reason that I can't beat this, feeling a lot better now

Take care x

Aww excellent news.

Keep in touch, happy to help.

Think it is better to be prepared for road ahead, but you will get through it..

Will be happy to catch up anytime 

Take care

Bobby x 

HI Bobby 

Glad you got through your treatment ok and hoping the scans will be fine. Glad you are also speaking to Alli. We chat on here too. 

It is nice to hear from someone who has been thorouhg it and there are a few good people on here. Have a friend going throuhg it now and unfortunbately he must be having a rough time as i have not spoken to him since his second week of treatment - 6 weeks chemo and radiotherapy. I was lucky i had to have a tonsilectomy and boy that was painful and i still have problems eating but mine turned out to be necrotising granulomatous inflammation so still under research. Anyway just wanttes to say hi and good luck with scans. 

Elona x

Many thanks for your reply and words, all our journeys are similar but some have better outcomes than others.

I will have to look up that cause/condition you mention. 

stay strong and safe

Bobbyx 

Many thanks for your reply and words, all our journeys are similar but some have better outcomes than others.

I will have to look up that cause/condition you mention. 

stay strong and safe

Bobbyx