Tongue cancer surgery and neck dissection

Mark - an interesting post that reminded me of all the bits I live with and got so used to that I forgot to mention them in my post.  Probably a good thing that we adapt so well to life after treatment.

Hi, I’m sorry to hear you’re in a bit of a quandary. I can only tell you my experience, that I didn’t have the option, the cancer from my tongue base had spread to my lymph nodes. My surgeon consulted with MDT and told me that the tumour was too large to remove, a large piece of my tongue would have to go. So, decision was theirs to do the neck dissection, and treat tumour with 7 weeks of chemo radiotherapy. I don’t know how many nodes they removed, but the scar went all the way down from behind my left ear to centre of my throat.  It’s faded now but my neck looks a bit deformed, especially after the radiotherapy burn scars. Maybe worse because 2 months before my neck dissection I had surgery in the same place to remove a branchial cyst, which is when the cancer in my lymph was discovered and traced back to primary on my tongue. This was 9 years ago now, no recurrence or spread from that site, so it must have done the trick.  Other cancers I’ve had (lung, other side of tongue and throat) in the last two years have been a different type, so I’m guessing they’re not related to the first one.  To be honest, the neck dissection was the least painful of the treatments I’ve had, and there have been no long term effects from the surgery other than some stiffness and lack of flexibility in my neck. I hope this rambling on from me helps in some small way, and wish you all the best with your treatment. 

Hi Kitikat Sorry to hear of your woes , I would go with the consultants advice. The more they remove the less chance of it coming back. I had base of tongue cancer so had teeth removed and it spread to both sides so had chemo and radio , Then about a year later I got the all clear and 6 weeks after that someone drove straight into the back of me while sitting at a red traffic light on a straight road . I went to see my consultant because my neck just didnt feel right , I wasn't in any pain no lumps really or anything obvious signs . Consultant said this is exactly what he wants his patience to do and examines my neck and says to me , You are having an operation you might not  need it but your having one , I said ok and I had whats called a salvage neck dissection, Basically he took out literally everything he could out of my neck , He said it was just a mess deep and aggressive and two areas he couldn't get it all out. He removed 33 lymph nodes 2 or 3 cancerous , they removed the muscle and veins ,arteries skin etc from my and did a cracking job. I have since got the all clear on my head and neck which is great , but the oncologist said that if it was going to spread it would go to my lungs and liver first I have since had them scanned and all good , except a 8.5cm hemangeoma on my liver , So happy days so far was actually supposed to get my results again today but consultants ill so next week now , Good luck I hope this helps in some way. I would ask consultant as lymph node removal might be much less involved compared to mine  

Thank you all so much for your replies. I'm sorry to take so long to respond. My consultant has advised that I have selective neck dissection at the same time that I have the tongue resection. I am very fortunate in that my cancer is very small at T1NOMO and the MRI showed no cancer had spread to my neck. I've agreed to have the neck dissection but I'm still not totally at peace with thr decision. The tongue surgery is an easy decision as I want the cancer removed but neck dissection feels like overkill and I'm still really worried about long term problems.The consultant did say that I'd be an ideal candidate for sentinel node biopsy but unfortunately they don't offer it. I'll just have to come to terms with it and hope for the best. 

KitiKat said:

neck dissection feels like overkill and I'm still really worried about long term problems.The consultant did say that I'd be an ideal candidate for sentinel node biopsy but unfortunately they don't offer it.

Can you be seen elsewhere? I would ring round to find out if there is room at another hospital? 

1. Good afternoon Kitkat.  Sorry I did not see your post earlier.   Your journey feels similar to mine but I was offered  targated sentinel node biopsy at the same time as my tongue surgery.   At my post op appointment I was advised that there had been no spread to the nodes and due to there being good surgery margins no further treatments were required.  I do have regular check ups and these will be for five years (but from what I have read this is the standard protocol for head and neck cancers). Just out of curiosity what hospital do you attend?  

Hi Mick, I'm at Castle Hill Hospital in Yorkshire. I was told there are only a couple of hospitals that offer it and there would be a long wait. I'm so worried though that I'm seriously considering telling the surgeon not to do the selective neck dissection and just have the tongue surgery. I don't know if it's too late though as my surgery is booked for Monday. Can I ask where you had it done?

According to my research Hull university teaching hospital trust offer sentinel biopsy and castle hill is part of the trust. 

Hi Kit Kat. Leeds cancer centre  do sentinel node biopsies my brother in law had one there at Leeds Cancer centre. It’s hard for  you especially as op is booked for Monday but I feel for you if you’re having a neck dissection unnecessarily. I would ask again have you a Macmillian if cancer nurse to fight your corner. 
Hazel 

Hii Dani thank you for looking this up. It's very odd because my consultant told .me today that no hospitals in Yorkshire offered it and that there were only 3 hospitals in the UK that did which are Guys, Glasgow and Liverpool. I also looked into it myself and the Head and Neck Cancer Foundation website gave a long list of hospitals that provided it. Why would my consultant give me incorrect information I wonder.