I was diagnosed with SCC on my tongue in October 2006 and had surgery in November 2006. Unfortunately, the doctor "messed up" and I had to have a second surgery in March 2007. So far, so good!

It has been very enlightening to read everyone's experiences, as I now realize that I have gotten off very easily in comparison. It has also been good therapy to read all your posts, as I really felt alone as I had never even heard of tongue cancer before I was diagnosed.

I would like to share with everyone that I had a recent scare that my cancer had returned, but it turned out to be a false alarm. People need to be aware that if you take medication to prevent malaria, it may produce sores on your tongue. This happened to me a couple of months ago when I went to the Carribean.

Hey Roxanne, I'm with you. Just found this site this week and have found the postings to be supportive in nature and informative.

Three time tongue cancer guy expecting the third surgery shortly...

sorry you've qualified for "club" membership, but welcome.

bob

Hi Roxanne and welcome to the club no-one wants to be a member of!

I am with you - coming to this site made me realise how lucky I am compared to some. Yes my neck tightens up from time to time making movement difficult and I still can't eat yet - but that should come back. I am exatly 6 weeks post treatment.I am now driving again which has given me my independance back.

Love Chloex

Hi Roxanne, you'll always find plenty of help and support around here. There aren't many questions that cant be answered by someone on the forum. Hagg.

Hi everyone. I just found this site and thought it would be good to write now that I am an unfortunate member. I just had a partial glossectomy of the right side of my tongue on 4/07/08 after a diagnosis of SCC, Stage one. I am being told how fortunate I am that I am a classic example of diligant and aggressive pursuit of a diagnosis at the onset of discomfort, thanks to my supportive wife. I am being treated at Sloan Kettering in New York and the doctors are keeping a close watch on me but they are convincing me that no radiation is neceesary. My taste is still messed up and carbonated drinks are horrible. Having problems adjusting to alcohol restrictions, as I used to enjoy my weekend martinis! I would like to hear more from you and wish everyone health>

Hi Jan, sorry you have to join us. Alcohol restrictions are a bit of a bugger but things do get easier and hopefully your taste buds will level off a bit. Hagg.

Hagg,
I read your response and just shook my head at how overwhelming this is. You are nearly 11 years and still kicking it and I just got through my 11th week post surgery and the situation is kicking the crap out of me. Thanks for being out there for us rookies.

Hi Jan

Glad you found this site. I had a partial glossectomy and left-sided neck dissection last October and have been a member of this site since December. I remember that my very first question to the site was whether I would ever be able to drink the odd glass of wine as I had been used to and was told it would be OK to do so (in moderation of course). I now really enjoy my occasional drink.

Like you I didn't need any radiotherapy - I just have to go and get my mouth looked at every month. I went back to work in January and am doing very well. Slight numbness in my tongue and very occasional trouble eating/ barely noticeable slurred speech. No-one who didn't know would guess I had anything the matter!

All the best

Gwyn

Gwyn,
I not only didn't have radiotherapy but I also was told by my surgeon that the partial throat dissection was not warranted. Other surgeons with whom I consulted expressed different thoughts about the throat dissection. Were you a stage 1 SCC also? I am not complaining that I dodged that bullet for now but I routinely read that in conjunction with the surgical intervention, that it is customarily followed up with radiotherapy and/or the throat dissection? I appear to be left in the same position as you with marginal slurred speech which should still get a bit better and eating is still an adventure as I regularly bite the tongue which is always in the wrong place as I eat. Thanks for the words of incouragement.

Hi Jan

I was never a heavy drinker, but since my hemiglossectomy and resection, spirits just don't taste very good (they now taste the way rubbing alcohol smells), and except for very good white wines (like Piesporter) they are just awful. Fortunately, there's always beer, and the darker the better!

Julia

Hi Jan

When I was diagnosed I was thought to have a stage 2 SCC, and I was expecting to have more of my tongue removed and replaced with a flap. When they came to operate, however, the tumour was smaller than expected - they took about a third of my tongue, but decided that I didn't need a flap. After the operation I was told it was,in fact, a stage 1. So I don't know whether or not they would have done the neck dissection if they had known that before they started. The neck dissection did make it a much bigger operation - I needed a tracheostomy and a PEG feeding tube, but it also provided me with reassurance when they found nothing sinister in the lymph nodes.

My Consultant said that they would keep the radiotherapy and the tongue flap in reserve in case the cancer came back - don't know if I found that reassuring or not. Though they are generally very pleased and optimistic about my progress - six months post-op is something of a landmark apparently!

I remember the biting the tongue bit - that doesn't really happen now. I also remember the time I lost a piece of avocado in my mouth and when I found it later I scared myself silly because I thought I had bitten a piece of my tongue off! The slurred speech only occurs when I am very tired (possibly in conjunction with one of those glasses of wine!).

Sounds as if you are doing well - hope you continue to make good progress. Let us know how you are getting on.

All the best

Gwyn

Jan, hang in there because it does get easier. 11 weeks post surgery is still early days but when you come out the other side it does feel like you kicked the crap out of it and that's a really good feeling.
I stay on the forum to try and give other people a bit of encouragement and to show that life can go on post cancer. Keeping a positive attitude is the key but I know thats sometimes easier said than done. Hagg.

Jan,
It sounds like you had similar experiences to mine. I was Stage I as well and luckily only had to have a partial glossectomy.

Unfortunately, I got a rookie doctor the first go-round and he sewed one of my saliva glands inside so it created cysts called ranula inside. So, 3 months later, I then went to a head and neck oncologist at the University of Alberta. They had re-open my incision to cut all the scar tissue out and the cysts and remove the saliva gland that was now "pooched" because of what the first Dr. did. They did check saliva glands while they were in there and I was clear - thank God! All-in-all, I still consider myself to be one lucky individual.

I'm with you on the alcohol issue. Never drank much but liked to have a glass of red wine a couple times a week. I was told to absolutely stay away from alcohol. It would be nice to know whether this is true that it makes a difference in cases like ours!

I'm with you on the carbonated drinks aspect. For me it was very uncomfortable to have carbonated drinks - It took almost a year after surgery before I could drink any.

I still slur at times - my husband says it's cause I talk too much To my way of thinking, some of the sluring is because the scar tissue has tighten up. I am going to be going for Physio - yes on my tongue - in about 6 weeks. I'd like to know if anyone else has had such a thing as physio on their tongue and what their experience was.

It is very rare that I bite my tongue anymore but it was a huge issue for about 6 months after the last surgery.

hi just browsing my husband got something still undiagnosed in mouth found it at dentist a week ago. still waiting for referal. now im watching and reading everything. im sure everyone here is very brave but he says hes ok and nothing to worry about so im worring for both of us. we live in wakefield so does anyone know who he will be refere to?

Hello Penny

Mr David Mitchell is the Consultant Maxillofacial Surgeon for Head and Neck cancer at Pinderfields General Hospital in Wakefield for the Mid Yorkshire Hospitals NHS Trust.

Your husband should be seen within 2 weeks of referral. Meanwhile try not to worry, just do whatever you would each day as it might not be a cancer You can do worrying and reading later if there is a diagnosis, unfortunately. Just go out and spend time together doing things you really think you should be doing; this is a good time as the reality check makes one suddenly see that you both have lots to be thankful for.

Do let us know how you get on.

Best wishes
Vinod