Hi,
I'm not sure I'm doing this right but thought I'd try anyway. My husband was diagnosed 6/05 SCC in lymph nodes. We just found the primary in the base of tongue. He had a modified radical neck dissection and removal of 30 lymph nodes. We are going to start radiation soon. I'm glad I found your forum. Thanks for the info.

Hi,

I also had SCC at base of tongue and two lymph nodes. I am 11 months out of diagnosis and 7 months out of dsurgery and treatment. Hopefully we can answer any questions you may have. I can also give you my number s we can discuss any questions you may have.

Good luck,

Steve

I had 30 IMRT treatments first, SCCin the Pharyngeal area and a lymphnode on the left side of the neck. The IMRT was not pleasant but the side effects were not quite as bad as the doctor warned. I have a neck dissection to look forward to now as the radiation did not get rid of the node on my neck. petscan next week to make sure the primary is dead. Keep your chin up and stay positive. Family is a great thing to have in these days. Don't let him be around negative people, you either. Iam 41 years old, diagnosed at 40,and my 3 children and my wife and extended family have done nothing but lift me up. It is a pain to go through but some good things have already come out of my experience.

Hello dj

Welcome to the site. Sounds like your husband is having very similar treatment to me. I am now 27 months out of treatment and looking and feeling well. Radiation seems to be a very high mountain on day 1, but push on and it will be worth it. For me, one day at a time was the way I handled it. Boy, did I count them off. I congratulated myself every day and found laughter wonderful although I sounded very peculiar I imagine. I tried to find something positive away from cancer every day.

People here have travelled your path and are here for you both, caregiver and patient.

Best wishes and love to you from Helen

Welcome to the Oral Cancer Foundation DJ. You have found the most informative site on oral cancer on the web.
What type of radiation is your husband going to receive? I had ssc on my right tonsil and a neck disection also. I am over two years out from treatment. The radiation can be the roughest part of the treatment. I was lucky and had no side effects from any of the treatment. I hope this will be true in your case. You can post any question you can think of and someone with similer treatment will respond.
You are now part of a huge international cyber family that all have something in common, oral cancer.

I hope his treatment goes well and you soon will be the one offering support to new members.

All my best, Danny Boy

Hi,
Thanks for all the replies. It's nice to know that you all are out there. I do have a couple of questions. We had gone for a 2nd opinion and the Doc said radiation and chemo together was the way to go. I'm hoping that radiation only will be ok. The oncologist and radiation/oncologist are talking it over. I know that there's alot of different ways to treat this and everyone is different, but how do you decide which is the best? Thanks so much for being out there.

dj - there are different kinds of chemo. The one they are likely referring to is to make the cancer cells more vulnerable to the radiation. This is different than the kinds of chemo they give you for distant mets. Chemo and radiation together have good outcomes in the published data. I'm a proponent of hitting it with everthing that is available. This disease is very unforgiving of half-measures, and you want to eliminate it completly the first time around. While others may disagree with me, I'm an advocate of the biggest hammer type of treamtment...if you can tolerate it, let them do it.

Hi,
My husband's modified radical neck dissection was two weeks ago today. He went through the operation very well and last week really didn't have much pain. This week is alittle different. He is having much more pain. He can move his arm and shoulder well. He has numbness on the left side of his face and behind his ear. The Doc said this is normal. My question is - is it normal to have more pain the second week after this operation? His work is very physical and he's trying to get back to it. The doctor said he could do whatever he wanted to. I agree with you Brian, get the big hammer, but I'm also afraid of what he'll have to go through. Thanks for your input.

Hi DJ, Yes it is normal to have more pain especially if he has been over-doing the work. The other feelings are also very normal. Numbness will be there for a while as will some tingling sensations. Headaches might come off and on too. He should practice gentle stretching and not try to do too much yet. Healing from surgery takes 6 weeks.

Hi DJ,
Is your husband getting PT for his shoulder and neck? If not, he should. You are not supposed to lift anything that weighs more than a lb for the first couple of weeks after the surgery. Sounds like your husbnd may have been over doing it and has now gotten his shoulder misaligned. You don't want to put any more drag on that side than necessary. I used to put a pillow under my arm when I sat on the sofa to lessen the drag. Likewise in bed to elevate it if I slept on my other side. If he sits at a desk, make certain the cahir has arms. I had no pain with either neck dissection other than what was caused by getting my shoulder misaligned (winged scapula) which resulted in severe back pain.

Have him take it easy for a few weeks and find a good PT.

Take care,
Eileen