Hi all, I am new to this board. I found it while desperately seraching for support to help me understand what is happening to me. I was diagnosed with cancer of the tongue in April 2006, and it had spread into my lymph node. After completing a course of chemo-radiotherapy I was healing well and hopeful of a full recovery. Then another lump appeared on the other side of my neck. I have just been told that the treatment to my tongue was unsuccessful and the tumour is still growing. Radical surgery has been discussed but with only approximately a 10% chance of success. I am devastated by this news and just don't know where I go from here. At the moment I feel like I am being left to die. Does anybody have any suggestions or ideas? Would chemo help to slow the growth temporarily?

Hello Julie I am pleased that you found this site and welcome aboard. I too am from the NE England and maybe we attend the same hospital (Newcastle Freeman/RVI)? I can't answer your specific question but I have had radical surgery - twice - although not radio nor chemo. Half my tongue was removed in the first op. I do know the fear and desperation involved in trying to cope with the magnitude of all this and there are lots of members who have either had similar experiences and/or have undergone radio and chemotherpy - so you are not alone and we all try to support each other as much as possible. So ask as many questions as you want to and, for sure, someone will have 'been there' and have some helpful advice.

When you say radical surgery was mentioned - was this for a possible neck dissection (to remove the lymph nodes) or was it to remove some of your tongue? It doesn't sound as if the doctors have explained things fully to you, although I know only too well how difficult it is to take in all that they bombard you with, especially once you hear that the previous treatment hasn't worked. Are you due a follow up appointment soon (maybe with an Oncologist), or are you due a visit from a Macmillan nurse? Someone needs to sit down and explain things in more detail so you have all the facts and then you can make a more informed decision as to what to do. I hope you find some answers soon Julie. Very best wishes, Brenda.

If you want to email me, please do - brenda.brady@consil.co.uk

Hi Brenda, Thanks for your reply and words of support. I too am pleased I found this site as I am divorced with no children and, although I have fantastically supportive friends, I have never felt so alone.

I am being treated at James Cook in Middlesbrough and meet regularly with the medical team of Consultants and Oncologist. They are talking about removal of my tongue entirely and a tracheaoctomy and said I would never be able to speak again and would need a permanent feeding peg in my stomach. Even with this traumatic and highly disfiguring surgery they put my chances of 5-year survival at only 10-15%.

I think one of my biggest concerns is the quality of care. My condition was originally misdiagnosed in June 2005 by another Consultant who sent me to my dentist to have a tooth crowned. Since the diagnosis in April I have faced delay after delay and most recently have waited 8 weeks for the results of a biopsy on the new lump on my neck. There just seems to be no urgency and I am now seeking a second opinion but am not sure who is the best person to go to. What are your thoughts about the team at Freeman hospital? Are they worth a visit in your opinion?

Hello again Julie I have nothing but praise for my team at the Freeman (if you have read my blog you will know the story) That said, my original surgeon has now moved on but I'm still happy with the man who replaced him (and who was involved in my second operation) If you want to email me I will give you the details. I think you are right to seek a second opinion on such a major issue. Would Newcastle be o.k. for you to travel? I hear Darlington also has a good unit.

Most of us will have been affected by the long wait for results etc but when the delay is due to a misdiagnosis then that is something else. It is vital that you have faith in your doctors and I sincerely hope that you get the right team for you.

I am hoping other members, who have gone through this operation, will come up with some advice for you. Meantime, just remember you are not alone - we are all in this together in one way or another. Brenda.

I'm presently being treated for tongue cancer with radiation and chemotherapy. Usually surgery or radiation (or both) is needed to get rid of the cancer. I would certainly look into the radiation as an option, especially the IMRT type. Ideally, the cancer center should offer the different treatments, and the surgeons and oncologists should both discuss with you which one is best for your case.

hi julie so sorry i am a newbie waiting diagnosis and do not know what to suggest....but i am hear if you want to chat anytime

good luck
jeff

Hi there guys, Well im waiting for Friday nfor results of my PET scan.
Consultant found a mass of skin at the base of my whilst investigating lumps on the back of my neck( god when does it end ) with a camera down my nose and throat.
When I first went to the local Hospital they did a biopsy and was told to go home in a manner I was wasting their time with no follow up appointment or anything it still makes me angry 5 years later as my life maybe could have been alot better caught in time as it is life stinks!!

Paul

Good luck to you Paul. I'll be thinking of you and praying for a good outcome. The mental stress of this illness (whether cured or not) is just unrelenting.
My "initial" diagnosis took 6 months to come up with cancer. Even tho I am still clear 2 yrs and 2 months down the line I still think that I would not have needed such aggressive surgery and radiotherapy if I had been diagnosed earlier - as I should have been.

good luck - Tony K

I can't believe that you guys had to wait so long for a diagnosis. I guess I was lucky that mine was in my tonsils and the consultant took them out to do the biopsy. I have heard that head and neck cancer is often not diagnosed at an early stage. I think it's terrible that you have been reffered to a consultant, and they didn't spot it. I went to a doctor whilst I was on holiday in the summer of 2005, and had my tonsils out at the end of September, so it only took a couple of months from me first spotting that something was wrong to my diagnosis. I can understand a GP not considering cancer as a possibility, but not an ENT consultant, and this makes me angry.

Good Luck for Friday Paul, I'll be thinking of you.

My GP thought it was cancer (he never said it - but I know now). He referred me immediately. Unfortunately I was seen by a series of junior registrars/SHOs ( buffoons many of them!!)and not the main man! - They all played the waiting game - I bet they wouldn't if it was THEIR lives on the line!! stupid bastards.

I would advise anyone to go private and see a consultant who is THE specialist in that head/neck cancer area. I may yet take legal advice on my diagnosis (or lack of it!)

A PET scan is very revealing. If the news it not so good (and let's will it to be good)it will show very accurately what needs to be done far better than an MRI scan would.
We need more of them in this country. Also other types of Radiology equipment, such as the Cyberknife, which is extremely accurate in pinpointing the specific area of tumour and so does not damage surrounding tissue.

Tony K

Tony,

I was scared about the lump on my tonsils and I decided to pay for a private consutation. I will never regret the £250 I spent, as my NHS appointment when I recieved it was three weeks later, by which time I had had my tonsils removed, and recieved a diagnosis based on the biopsy. It never occurred to me that if I had gone to the NHS appointment I would not have recieved the same response, and might have had to wait longer for the tumour to be removed. It seemed obvious tio me when my consultant said that he wanted to do a tonsillectomy, but maybe he was mopre aware of the possibilities, and thought that it would be best to remove the tonsils immediately.

I had a nightmare time on the new year bank holiday in 2006, waiting to see a very junior doctor, who didn't want to examine me, when I was suffering from side effects from the morphine. I wasn't really well enough to complain at the time, butI should have, as when I visited the doctor a few weeks later, I recieved the diagnosis I should have recieved whilst in the hospital.

I had a cancerous tonsil for 6 months and an extremely swollen neck lymph gland for 5 and half months.

The junior doctor who played the waiting game with MY life stuck fine needles (FNA) in my neck for tissue samples. Following that the cancer came out of the capsule of those glands punctured and spread in my neck region.
I - for one- did not think it was a coincidence!

Tony K