Tonsil cancer. Anyone not had surgery as part of treatment?

Hi Janene123 and welcome.  I've only had surgery, but lots have only had radio (sometimes associated with chemo).  And many will have had the route initially suggested for your husband.   I think it all depends on what the clinical teams find during diagnostics as to what their recommended approach is.  Both approaches to treatment can be really tough to accept and manage. However, the outlook is good and many of us go on to live a very good quality of life post recovery from the treatment.

Others will be along with first hand experience of the radio/chemo and how to manage through treatment.  I prepared myself for radio post surgery and would have personally opted for a PEG/RIG rather than an NG feeding tube.  I believe that the chemo used targets the H&N cancer cells and makes them more susceptible to the radio and do not target other cancer cells in the body.  Hope this helps.

Hello Janene and welcome.

When you say surgery, are you referring to robotic surgery and neck dissection?

Linda x

Hi I had tonsil cancer with several affected lymph nodes. I did not have surgery has one of my lymph nodes was too close to spine for surgery. I had n g feeding tube fitted week 3 as I couldn’t nutrition or hydration. I was radiated both dudes tge rught sude was where my tumour was located. I had 35 radiotherapy abs 2 out is a planned 3 chemo. I am now over 3 years post treatment and living my life. The treatment isn’t easy but if I could do it anyone can. I too was h p v 16 positive. Being h p v tumour they do respond well to treatment, Try not to stress it’s a tried snd tested path. 
Different hospital  have different protocols some insist on p e g feeding tubes some like mine offer n g tubes if needed. 
Hazel my blog below may help you

Hazel 

Hi Janene and welcome. So sorry to hear the fix your husband is in. I had cancer at the base of my tongue. I didn’t have surgery. My oncologist assured me that he would cure me without. My tumour was small and I didn’t have any nodal involvement. I did have RT both sides with less of a dose to one side. No chemo. 
Radiotherapy is nasty wherever you have it in the mouth but his team will look after him and make sure he keeps on top of the pain. 
The one thing to ask is considering he is having treatment to both sides whether the radiologist will be sparing one parotid salivary gland. 
Our salivary glands take a huge hit and the ones in the line of fire are damaged irreversibly. It’s the lack of saliva that causes a dry mouth after recovery.  I have one functioning parotid and my saliva is ok though not as it was 

Don’t worry about the change of plan. It’s likely that the treatment plan was always going to involve both sides. 
I hope things get going soon and that your husband is on the way to recovery 

Stick around  we will all help you both along  

Best wishes 

Sorry Janene.  I didn't read your post properly.

I was diagnosed with base of tongue cancer in May 2018 and given the option of robotic surgery to remove the tumour plus a neck dissection followed 6 weeks later with radiotherapy OR radiation and chemotherapy.  I opted for the surgery and radiotherapy as it was part of a trial and supposedly less destructive to the swallow function.  I can categorically say it was not the easiest treatment plan for me.

Your husband has received the gold standard treatment.

I have been reflecting on my choice of treatment for some time now as I don't think my body responded very well to the surgery.  Of course, I'll never know if I would have been better off having the gold standard treatment so I just have to accept my decision and where I am now.  I don't think it's healthy to regret the decision that was made as who knows what the outcome would be regarding side/late effects had I chosen the alternative.

I do hope your husband can reconcile his decision - neither option is an easier option as far as I'm concerned.

Do keep in touch with the forum as you'll find lots of support and advice on how others have dealt with issues as they arise although your husband's team should be his first port of call.  

All the best

Linda x 

Hi Linda, yes I am. It was called an oropharangectomy and neck dissection. But he would also have the tonsil removed. Hope this helps.

• janene x

Thanks for the reply, this gives me hope.  I’m reading a lot have had surgery beforehand and both myself and hubby are starting to question whether the right choice was made. He never wanted a peg tube but has come round to the idea. Now the plan has changed he knows it’s going to be needed. I’ll certainly read your blog. 
love and hugs

janene x

Hi Janene. surgery used to be the way to go. But over the last 5 years or so the gold standard treatment is chemo radiotherapy for our type of cancers. Any help or questions just ask one of us will get back to you. Tell him to look at the peg as an insurance policy it’s there if needed. Mine was a lifesaver as once I couldn’t swallow I needed it. 
Trist in the treatment and remember h p v driven tumours respond well to treatment.

Hazel 

Thank you for your reply. I’ll ask him to ask about the salivary gland. It’s caused a lot of him lashing out at me since the plan change, he blames me for not having surgery. Says he didn’t have it because I was so upset. That hurt. I know he is scared. So am I. But we are in the path we are on now and I hope it turns out to be the right one. 
thabk you for you kind words. 
love and hugs

janene

Thankyou Linda. That has helped me a lot. He is lashing out at me a lot lately for not having surgery as he blames me for not having it. Saying he didn’t have it as I was so upset at the thought of it. It’s completely untrue Ofc. I supported him whatever he decided. I know he is hurting and confused. Your reply has been incredibly helpful. Thankyou. I hope your on the mend.

love and hugs

janene x