Trying to brace myself for the treatment of my Tonsil & lymph node cancer.

Hi Lione

Welcome

I finished chemoradio for T2N1M0 HPV16+ tonsil cancer in June 2023....treatment is a very tough challenge though some do get off relatively lightly with side effects.....keep the forum updated with your progress....plenty of support and sound advice from others who have walked/are walking the treatment walk.

We were all scared....natural reaction to our plight

Take care 

Peter

Welcome Lione  

I’m five plus years clear now but just wanted to say hi

There are quite a few of us just starting so you’ll have company. I’m sure somebody will be along soon 

Stay with us and good luck 

Hugs 

Hi Lione,  I too have cancer of the left tonsil and lymph node and I had a Tonsillectomy  and Neck Dissection to remove the lymph node.  Unfortunately some had spread outside of the lymph node, so they are going to give me radio/chemotherapies.  I haven't started that yet so I am rather nervous about that.

You are never alone on here, there are so many helpful and supportive people who have been invaluable to me.  You are right to focus on the fact that the treatment is 90% effective, they are brilliant odds.

Hugs

Hazel x

Hi and welcome from me.  I see you've met Hazel. It's good to have a buddy to share the journey with.  I had one on here and a real one at the hospital.  Mutual support is great. 

Plan on one year out of your life before you get back to a good quality of life (could be a shorter period). In return your will get a new normal that will give you many years of enjoyment.

As you go through treatment ask away and there will be lots of good advice provided.  We do all react differently to the same treatment, but someone will normally recognise where you are and have some good coping mechanisms to help you. 

Hi and welcome. 

I was in a similar position. I had cancer in my right tonsil and a lymph node in my neck on the right hand side. 

I had a tonsillectomy and mucosectomy of the tongue base. Then I had an oropharyngectomy (pathology wanted an extra 5mm taken out) and a selective neck dissection. 

I entered pathos and I start radiotherapy in a few weeks. My advice would be to refrain from google searches and stick to nhs/macmillan websites and this forum for advice. There’s plenty of it.

Hi Lione

welcome from me  I’m 6 years post chemo 3 and 35 radiotherapy  sessions. Ask any questions someone’s usually got the answer. Treatment is brutal but if I can do it anyone can. Take it one day at a time 

hugs 
Hazel 

Hi Lione,

I start my treatment of 2 chemo and 35 RT on Monday 28th Oct. For base of tongue and lymph node HPV16+ 

Seen my oncologist today to sign final consent forms. It's a very scary time , but my oncologist has helped put my mind at rest about things. Like you say and others on the forum it is going to be a tough ride ,but need to focus on the prize at the end.

There are so many marvellous people on here that help you too.

Keep in touch and I've found no questions are silly .just ask and someone will try and give an answer.

Best wishes Mark 

Thank you for your message Peter. I will have to get into the lingo. I’ve worked mine out as T1N1M0. No one’s mentioned HPV yet so  that’s a question to ask. 

It is interesting to hear about other people’s experiences, especially from those who are on the other side. I’m already feeling this forum is going to be an invaluable resource of support especially when things get tough. 

My fear rises and falls and it’s mainly about the unknown so I’m actually keen to get on with the treatment. The sooner it happens the sooner I’ll be the other side of it 

Hi Dani,

It’s so encouraging to hear you are 5 years clear now! I will be very interested in reading your blog. I’m thinking of doing one myself, as a record, to help others and I think I will find it therapeutic. I think it may also be the hardest experience of my life! I certainly will be staying with you for a while.

Many thanks for messaging. 

Hi Leone

HPV16+?....if you have been told that the cure rate is circa 90% by oncology then its probable that your cancer is HPV 16+...very good news ...the support on this forum is immense....also supplies a little (dark) humour occasionally...

Peter