My name is Kelley. I'm 36 and in July, 2002, was diagnosed with SCC of the left tonsil with 4 lymph nodes involved in my right neck. I had a modified neck disection with 33 treatments of radiation to both sides of my neck with concurrent chemotherapy - 3 cycles of cisplatin. I am 1 year and 3 months out from treatment and found this site as I was looking for "symptoms of recurrent SCC" on the web. I have convinced myself that the cancer is back even though my surgeon just stuck his finger down my throat 2 days ago and gave my a clean bill of health (I will never get used to the finger thing). I know I just dont feel right. I feel like I have something stuck in my throat and from time to time I feel a sore throat coming on. My tonsil cancer was microscopic and I felt the same sensation. I know my mind could be playing tricks on me. It usually does. I do have swelling under my chin and a little on my right cheek and have justed started going to physical therapy again. My therapist is teaching me manual drainage massage for lymphedema. My radiation oncologist says that the swelling can make my throat feel tight, hence the feeling something is stuck in there. I am really tired of feeling this way. I was a healthy 30 something year old and now I feel like I'm 80. I just started working out, hoping that will make me feel better. My Dr. has also suggested a support group, so I'm glad I found this site. If anyone has any words of wisdom or advice to share, I would be so grateful. Thanks for listening. I'm starting to feel better already!

Kelley

Kelley,
We are from Michigan too! My husband was Dx with tongue cancer in Dec 2002. He had surgery in Feb (2/3 of tounge removed) he is only 42 years old. He also had 33 radiation treatments. Anyway I dont know where you are in Michigan, but they have started a head an neck cancer support group @ Beaumont Hospital in Troy. The group just started last week. My husband went, he was so excited to talk to people in his situation. He said it was great. If you are interested let me know I send you the details

Hi Kelley,

One of the common problems we have is overcoming the thinking that every pain or strange sensation is a reccurance. I am rounding 3 years since my surgery and I can tell you those feelings are still with me. It is not as troublesome as before but it is part of my life and probably will be for a long time. I can tell you that the pattern of thinking that gets things spirialing to the negative can be controlled to some extent. You can retrain the mind's processing system to help stay on top. Anxiety reactions can be suppressed with practice. You might check in your area for classes on meditation. I found it helps quite a bit (although I am far from being a Zen master) We forget it has taken 30 or 40 odd years to develop the way we react to things it takes some time and perhaps expert guidance to re-learn our own personal ways of keeping sane.

All the sensations you mentioned, I have had or continue to have. So far I have been wrong EVERY time I convinced myself I had "IT" back.

Take care and congratulations on 1 year 3 months!

Hi Kelley

I'm another one that's had a lot of the feelings/sesations you've had, along with a permanently "tight" feeling 'round the neck like I"m wearing a way too tight turtle neck sweater..

It takes a while for us to not convince ourselves that every little thing is a recurrance. This area we all had sore throats, slight colds, along with real dry weather, and of course I was convinced that there was recurrance, tongue cancer, throat cancer, you name it. Along with during the healing process from the second surgery the contour of my neck has changed, and last follow up scan I was convinced they were going to find multiple recurrances. And scan comes back clear..nothing, nada...

And yes, there will be some days when you feel like you can take on the world, some days you feel like 90.

Work outs, support groups all help. Face to face support group is better, but if not, we're all here to lend an cyber shoulder.

Take care
Bob

Hi Kelley,
and welcome to the group. I can sure relate to what you, Mark and Bob are saying. I am almost 11 months post Tx now and worry about every little variation in my throat. My Head & Neck guy always tells me everything "looks good" but it's hard for me to believe him! And I will never like the glove down the throat thing either. When I go to UCSF for my exams I usually have a few student doctors going there also. I actually prefer the scope but my understanding is that the palpation exam is very important. You can ask them to numb you and that makes the exam a lot easier. How they are able to attain any useful information in the 1 microsecond before I start gagging is anybodies guess ;-)

Like Mark and Bob said, a cold, dryness, post nasal drip or any change is enough to send me to the mirror with a flashlight. I also have a little texturing and hardness and also an area that seems to swell ever so slightly from time to time in the vicinity of where the tumor was. I have mentioned this many times, they have taken MRI's of it and tell me it's normal.

I know what you mean about your age perception I was a very young 55 going into this (people routinely though I was in my early 40's). My wife mentioned once that I looked like I was in my 80's when I was bottoming out in treatment. THAT made me feel really good! At least I am wearing a 29-30" waist jeans now which is great.

I would put the focus on the "clean bill of health". I know, for myself, that my "magic magnifying mind" would run wild if I let it.

Hi everyone,
Thanks for all your replies. It certainly relieves alot of my anxiety, however I've always been accused of being wound a little too tight I am just having alot of sharp pain through what I think are my tonsils, with alot of stiffness, and just general malaise. I am starting a face to face head and neck support group next month which I am kind of excited about. I also see my medical oncologist next month. So hopefully that goes well. I think I just need a vacation to somewhere warm. Winters in Michigan are brutal.
Thanks Mark for your advice on meditation. I found a place that I can walk to that provides yoga instruction as well as meditation.
Gary, my ent told me that table salt on the back of the tongue before the finger goes in helps keep the gag reflex in check. I havent tried it yet, but I think my doc will probably bring the salt shaker next time. He's sick of me beating him up Also it's nice that you have your boyish figure back. I've struggled with that since the end of treatment. I'm barely a size 0 now. Have you ever shopped in the childrens department for a cocktail dress?
Well thanks again everyone. I'm so very glad I found this site.

Kelley

Hi Kelly,
The number and frequency of strange pains, some of which are quite noticeable) seemed to become higher at about 1 year out of treatment for me as well. The reason I came up with is that the nerves have finally reconnected and there is finally a sense at all. I also believe that the long term effects of radiation include dull aches and sometimes sharp pains together with bouts of severe stiffness almost like a total neck charlie horse. The radiation people don't seem to mention all this stuff at first.

Five days ago we got a big snow storm (30 inches over several days) and I went outside with my two older sons too "play" in the snow. We ended up with "king on the snow pile" (I won :p ) but the payback was a very painful neck with stiffness that has lasted till today. I have been very active for quite a while since treatments but for some reason the combination of wrestling and cold set my neck off. Oh well, one thing you can say about pain is: If you feel it, you're still alive!

Hi Kelley,
my wife is barely a size 0! For a while I was able to wear her pants! I believe that she gets most of her clothes at Nordstroms because they have a good selection of smaller sizes. At least you can shop in the juniors dept.!

Hi Kelley,

I have to agree with everyone else. There are things that don't start aching and paining until we are recovering from the radiation blast we receive. I think that our bodies are so focused on fighting the radiation other pains seem to fade. (I actually didn't have any back aches for a while)

Mark is also right about the nerve reconnect - our coming back to life? That's what I was told by my doc.

"Radiation - the gift that keeps on giving".

You sound very excvited about your support group -good luck with that.

Take care,
Dinah

Kelley, Welcome to the forum. My husband, Kelly, was diagnosed with SSC to right tonsil with three positive lymph nodes when he was 37. It has been three and a half years now post radiation and he is doing great. We do still get scared about a reoccurrence, but have found that with time it doesn't happen as often and not as intense a fear. Just wanted to tell you to hang in there. The healing process can be rather slow, both physically and mentally, but gradually things get better each day.

I just wanted to thank everyone again, more recently, Dinah and Julie, for your support and well wishes. I am really glad to hear that everyone is doing so well after all the struggle they have been through. I've just made an appointment for tomorrow with my medical oncologist. I actually moved my appointment up 2 weeks because I just can't shake this sinking feeling. I should probably jump over to the symptoms forum, but I just wondered if anyone could shed some light on recurrence. I've spent most of the weekend on line and of course am more confused now than ever. (I did manage to watch the superbowl though. What a game!) Aside from this general malaise, I've been feeling lightheaded with a pressure in the back of my head. Of course I have pain and stiffness in my neck, but it seems unusally worse. I also have tingling/numbness in the roof of my mouth. Mostly when my mouth is dry, when I swallow, I have pain that shoots to my ear, mostly the right one and then I experience tingling on my chin and around my mouth. Also, I still have that feeling that something is stuck or rather someone has their hand around my throat. None of these feelings are persistent, however the numbness on the roof of the mouth seems to be more frequent. I know how I must sound. My husband thinks I'm a pessimist. I think I'm a realist who just wants to be prepared. If anyone has felt these symptoms, please let me know. Or even if you haven't...

Thanks again,

Kelley

Hi Kelly.

Your feelings are normal. I am only 7 months post surgery (right Tonsil Stage 4) and 10 weeks post Rad. (IMRT) I think everyone who has cancer has negative thoughts. The trick is to get allot of support from your family and friends. Always know you can come here and receive both support and some good advise. You are not alone!!!! I can't really add much to what the others have posted but I will be praying you are wrong about a reoccurance. Take care and let us know how you are doing.

Are you as sick as shoveling snow as I am???

Your Friend, Dan Bogan