Need help with decision

Hi Jubee and welcome. Of course it has to be your decision but as you suggest an informed one. I can’t recall anybody here with tonsil cancer who got away without radiotherapy. It’s the radiotherapy that’s curative. Some don’t have surgery and some don’t have chemotherapy. 
I had cancer in the tonsil tissue at the base of my tongue. I had radiotherapy only. It’s not an easy treatment but it’s doable and three years later I’m still here 

Ultimately you have to make a decision on what your clinicians tell you. All if us here can only tell you what our personal treatment felt like. We are all different and our cancers while having a common theme are different too. 
I put my trust in my oncologist and went with what he advised

Best of luck 

Hi Jubee

Alas Dani's memory is rather short!   Although I have had a rather strange journey. 

I have only had surgery for my cancer.  Eventually they found what they assume was the primary in my tongue.  When they went to remove it the tumour had gone.  Armed with that knowledge I decided not to go into radiotherapy.  That decision was supported by the clinical team.

I think your decision will really depend on what they find post surgery if that is what you opt for.  Clearly the extent of the surgery can be quite severe - I had both tonsils removed in round one as they thought the cancer was there.  If the cancer is deep into the throat tissue behind the tonsil then I believe the surgery is quite tough and they probably will not get the clear margins necessary to give you the reassurance that radiotherapy is not needed. 

If they are able to get clear margins then you may wish to have a discussion about the benefits of radiotherapy at this stage.  In my case I decided to keep that option in reserve in case the cancer returned yet again.

Happy to have a more detailed discussion and there will be others on here that have a better knowledge of the extensive tonsil surgery rather than a simple tonsillectomy if that is what you need.

Ultimately it is your choice as to how you proceed having taken on board the clinical advice.  Work with you team to jointly achieve a good outcome.

PFJTHS said:

Alas Dani's memory is rather short

Aha. You are very memorable though. 
Jubee was talking about tonsil cancer though 

Of course we do t have the OP’s full story so I was maybe supposing too much 

Tonsil cancer, which was where mine first started started out before it "disappeared" for the first time - hence no tonsils or RHS lymph nodes!! 

The other thing to be aware of is that chemotherapy is more like a radiosensitiser in that it increases the potency if the radiotherapy by a little. I wasn’t offered it and there are people here who did but didn’t complete the whole course  

Also depends on your cancers HPV status. Do you know whether you are HPV + ?

PFJTHS said:

Tonsil cancer, which was where mine first started started out before it "disappeared" for the first time - hence no tonsils or RHS lymph nodes!! 

I’ve squirrelled that away in my short term memory bank

Hi yes I was told I was hpv positive and radiotherapy is a must I've been offered surgery and radio or chemo and radio 5 days a week for 6 weeks julie

Chemo 1 day a week but I don't no if I want the pain of surgery and a month later starting radiotherapy I was thinking it might be better to start the chemo and radiotherapy together but then again will the surgery be the best option I'm at a loss 

Best be guided by your team. Like I said I didn’t have surgery because that would have resulted in severe dysfunction and disfigurement. On the other hand a tonsillectomy surely gives you a better chance if the cancer is confined to the tonsil 
Remeber HPV positive cancer has excellent response. 

Hi Julie I am Hazel 3.5 years post radiotherapy and 2 chemo sessions for tonsil cancer with several affected lymph nodes.i had 35 radiotherapy sessions. And 2 x 10 hour  chemo sessions I was due a a 3 th sessions but in conjunction with my oncologist we decided against the 3 rd. i talked the pros and cons through with my oncologist finally asking him if I was his wife what would he advise.l His words weee go for the chemo and we will will review it after each sessions . The chemo as Danis says makes the cells more receptive for want if another word to  radiotherapy. Saying that the figure is around 4% towards completed metabolic response. 
I was lucky I had no side effects from chemo no sickness at all , but the 2 nd session I noticed a day or so a slight disturbance in my ears so at oncologist next meeting we again had a frank discussion .I along with husband and oncologist made the decision not to push my kick any further with the last session. It made no difference to the end result I got the no metabolic response which is as good as it gets. 
My trust do chemo for h p v tonsil cancer in 3 doses as opposed to 5  smaller ones .So if you decide  to go for it  I know people who stopped at one ,and 3 sessions if the smaller. doses. 
I had no surgery as one if my lymph nodes was too close to spine for surgery.

i too had spread to anterior tonsil wall and slightly to soft palate so a full tonsillectomy wouldn’t have worked as spells had already spread  

Do you know if you have lymph node involvement .

As Dani says HPV tumours respond very well to treatment. 
Any questions just ask. Radiotherapy is hard but I did it and I’m a wimp. My story is in blog below with links to other sites

Hazel