Hi, my husband was diagnosed with a base of the tongue stage III cancer, almost two years ago. He had(s)a lymphnod on the left side of his neck that shrunk after the treatment to the point that doctors could not feel it after a chemotherapy + radiation treatment. Two weeks ago, he felt a hard mass on the same side that is growing fast. He is going to have a biopsy next Monday and his ENT doctor is talking about a surgery if the test comes positive. I heard that such kind of surgery may affect his face, his shoulder motion...Do you think that it is the best option and does it really have such consequences. Thanks for all responses and God bless you.

Hello S, sorry to hear that you are having to face this "thing" again. Since most here are not medical professionals and since your husbands case is unique to him, I can only give some ideas. First the surgery will possibly include removing the lymph nodes on the affected side (or both sides) this is called a neck dissection. It sometimes includes permanent removal of a muscle and nerves that affect a portion of the shoulder function. I have had that operation, and after some recovery time, I am able to do most anything now that I want to do. In other words don't fear that part of his treatment.

I hope things go well for you.

Hello S.Paull,
My husband had tongue surgery, modified neck dissections both sides. Then a tumor grew in his left neck and they did a radical neck dissection. They took some of the cancerous tumor, but couldn't get it all because being around the jugular and carotid artery. They did take most everything in that shoulder...trapezious muscle, etc...lots of nodes, etc. After healing for 3 1/2 weeks, he quickly went right into chemo/rad for 8 weeks. Very rough go of it. Since he was on so many meds during chemo/rad, the shoulder pain was secondary and not to bothersome. Now he is almost 9 weeks post rad and his shoulder is really hurting. We have just had his first visit for physical therapy and they seem to think it will get him back some real range of motion and will be fine. So, no real bad trouble...just some physical therapy to help with shoulder pain and range of motion.
Hope this helps! My prayers are with you S.
Debbie

Hello S.Paull,

As Mark said, each case is unique, so we can't predict the outcome here. However, you should be aware that, for legal liability purposes, a surgeon typically has to review with a patient the potential impact of an operation (including what the "worst case" could be). I remember my surgeon going over such a list with me before my tongue surgery/neck dissection, and I came away wondering if I would lose ALL use of my left arm and the function of the left side of my face and neck, and my vocal cords. (However, the surgeon tempered that warning with his best judgment that the result would probably not be close to that.)

I did end up with a lot of swelling that took many months to go away. Also, it took well over a year for some of the facial and neck muscles to get back to "normal", but some of this was more an issue of appearance than functionality. The net long term result was that I lost none of the use of my arm or neck, and have an almost invisible 6-inch scar under the jaw line that hardly anyone notices, unless it's pointed out to them.

If you have confidence in your surgeon, ask for his/her best judgment as to the outcome (realizing that some of it still depends on what they find when they go in to do the procedure). If you have doubts about the responses you're getting, you may want to consider going for a second opinion.

Cathy

Hello S.

First again sorry to hear about your husband's situation, unfortunately this type of cancer has a nasty habit of showing up again every so often it seems.

I'm another one with neck dissection on both sides, 2 different times. Each side the surgery was differnt. Intrestingly enough, first surgery took more muscle and nerve, but took less time to heal. Yes, the docs and hospital make you sign all sorts of waivers to let you know the worse case scenario, and that usually scares the heck out of you. In my case, a year out of the second surgery, mostly just feeling sore on some days. Can still play golf (just as badly as before) drive fast cars and recently tried scuba diving.

With proper post-op physical therapy in time he should do ok. Patience will be the key
Bob S.

Dear S.Paul,

I'm so sorry that you and your husband are having to go through this. It is never easy. My husband had a stage 1 SCC in his mouth in Oct. 2002 (had it removed, then radiation to area), then Oct 2003 it was back under his jaw bone near his right ear. It grew to the size of an orange in a matter of months in spite of previous radiation to the area and then chemo to shrink it (it didn't). He also had cancer in his hard palate and tonsil. The "big" surgery took place in Jan 2004, and he was on the table 14 hours. Much of that was for trying to navigate nerves, etc., and putting him back together. They had to cut his facial nerve on the right side because the cancer had infiltrated the area so badly. He was left paralyzed on that side of his face, and he couldn't blink his eye (later he had to have a gold weight put in the eyelid to help it blink). He looked like a stroke victim. To make matters worse, he gradually lost most of the strength and use of his right hand/arm/shoulder. Docs said it could have been from being in surgery so long--that pressure from being in one position on the op table caused damage to his radial nerve. We think, though, that it was from the cancer and trauma of surgery in general--his hand looked atropied within days of surgery. He was right-handed, a writer and pianist, a professor and lecturer. All of that was taken away from him.

ARGH. Sorry to give you such horrible things to think about. As some have pointed out here, each case is different. As you have read above, there are some very good outcomes. I feel obligated to share with you the flip side.

You cannot truly predict the outcome of any surgery. We knew there was a chance of facial paralysis, but we had no idea that it would be as debilitating as having had a stroke. Then, by end of Feb 2004, my husband's cancer was back in a big way--metastatic to the skin of his face and neck. He died May 1.

Why am I telling you the hard facts of my husband's case? Well, because we were "protected" from much info by our doctors, therefore we had to find out a lot the hard way. We needed to be better prepared for the worst; we weren't except for research I did on my own and things the fine folks here told me.

So, if docs are telling you what "might" happen, point blank ask them questions and make them spell it out for you. They are not just always being cautious with the "what-ifs." Many times they know.

Ask. Do your own research. Live each moment to the fullest. Pray for the best. Let your love get you through, whatever happens.

Christine

Hi Christine
You have made some very good points.. here in the UK the Docs treat you purely as a patient.. I have had to work hard to make them understand that I am not a silly woman with a PC.. That I need to know what they are intending to do.. and that I will not be sent away pleased if they want to wait and see. So yep now we are get to aggresive surgery.. BUT if that's what it takes to stop this.. then so be it..I WILL SURVIVE..
love and hugs
Helen

Helen,

I so appreciate your spunk and your spirit! I would like to add that we really don't know if or how long we will survive, but by God, all of us reading this post ARE SURVIVING! Let us give praise to Him for giving us this moment.

Love and hugs,

Ed

Hi everyone,

Thanks all for your response. It is true that each case is unique as I read above but sharing your experiences made feel less desperate and stronger in facing the future. I am terribly sorry Christine for the loss of your husband. It has been a painfull battle. Remember, we are just visitors in this life.

My husband had the biopsy on Monday, we don't have the result yet but he found out that his new lump measures 2 cm; it is smaller than the one he had before(2.8cm), this gave us some hope(!). I talked to his previous doctor(radiologist) that recommended the surgey in case the biopsy comes back positive. But then, no chemo or radiation he said, just watch it! I hope that some day they find the medecine that will take place of radiation or chemo and erase this disease from earth.

Wish the best to all of you. And thanks again for your support.God bless you.

I have a question in regards to reoccurance. I just left a surgical apointment with my husband.The scan showed a small spot on his lung and the oncologist sent him to this dr .He said he would take it out yes it was cancer but not from the tongue ca because it was only one. He also said he wanted to do it in 10 days.All my red flags went up for worrying. He said he will do and open surgey not a scope and he'd be inthe hospital a week and 4 weeks recovery . Anyone have any ideas of why so quick to do it ? Or am I quietly worrying about it being more major? I'm trying to be moral support and not show the worry because he is so bummed out. Thanks for listening Diane

Diane
Cannot answer your question.. but I think my red flags would go up.. just be glad they going to do it quick... Wish I could tell you not to worry but the sooner it's done the sooner you'll have all the answers
prayers.. love and hugs
Helen

Diane,

How did the doctor know that it is a cancer, how big is the spot, did you talk to the surgeon? Ask as much question as you can.

Best wishes.

Dear Diane,

Please don't panic. My husband also had a "hot" spot show up in his lung. This was during his first scan following treatment (rad and chemo)

The tumor was very suspicious, singular, with no way to prove whether it was malignant or not, until it was out.

No doctor worth his weight in salt would sit and wait at this point, if it meant a possible cure, if it happens to be cancer.

We had a great thoracic (sp?) surgeon who removed the upper third of Dennis' lung, and it was BENIGN. Apparently, a product of living close to the water, of all things! Seems there are certain lung cysts caused by the coastal environment. After asking his doctor about this, following surgery, he said that up to 75% of his hospital staff would show these cysts if given a a scan.

Not to overuse a saying, but, it's not cancer, until they say it is.

Please, keep looking up, and know that I'm praying for the same outcome for you.

Love,
Mandi

Do they plan to do a biopsy before surgery? All the radiologist that looked at my scan could tell my spots were cancer, it's all shades of gray to me, but apparently there are certain characteristics specific to cancer. I wish they were doing a different kind of surgery. The recovery is so long with open surgery. I pray all will go well.

Diane,

I am sorry you have such rough news. It sounds like you have reasons for the red flags to start popping up. But, it also sounds like the team is on top of it. Take out a pencil and piece of paper and write down absolutely every question you have. Call the doctor and ask all of them so that you have all the cards on the table and can have somewhat peace of mind through a very difficult time.

It is okay to worry, even quietly, given the information that has been presented to you. Try to use this time to get the answers you need. Your husband is so fortunate to have you by his side right now. Be as strong as you can but remember you are only human. Or, as my wife always says, you don't have to jump out of a phone booth with the big S on...all the time, at least . Hang in there, we are here to lean on whenever you need it.

Ed

Thanks for all your replys as usual this is always a place to come to and get support. It really helps. The oncologist per my husband said cancer or not he recommended no biopsy just get it out.But my husband was also the one who after 45 min of graphic description of chemo and radiation said to me "I hope I don't throw up"
The surgeon said it was small in one spot and cancer.I was there and after a very detailed explanation my husband said. " i don't get why I have to stay in the hospital a week". He plans to meet with both of us after the breathing test and before surgury and made sure I knew he needed me to come.I quess he noticed the denial too.I worked in the operating room for 15 years and I do know what happens I showed my husband a basic drawing of a lung minus a little peice and we were back in denial "What do I want to look at that for?" So he likes his denial and there is where I'm leaving him . The hardest part for me is to shut up so sorry I use all of you for venting and owe you all a lot for listening and caring. The breathing test is next Fri and his comment was I hope he doesn't book anything a couple of days after that I guess he ignored the about 10 days and I'll do surgury part.He's worried about finding more cancer What's next but I told him to cheer up at leastr it's not the part of your anatomy that all guys worry so much about and got a half a smile.I pray for all of you that you all stay well and for those of you who have greater problems than you should have to deal with that you find peace with yourself and never give up . Your words are important to all of us .
Thanks Diane

Diane,

Please don't worry about venting to us. That's what we are here for. Sounds like you are in good hands.

Lynn

Diane
Vent all you like girl.. that's what we are here for.. my husband is also in denial about my coming op.. so the best thing is to leave them there.. so long as it's what they want.. what the hell... the Doc's seem to be on top of this as much as they can be.. so as they say girl.. 'go with the flow'
prayers.. love and hugs
Helen

Thanks again to all of you My husband will be going in June 10 . To gr I really appreciate your e mail tried to reply but in my limited computer skills it didn't work . I passed it on to my husband and it helped a lot. He never gets on this I think he thinks it's a monster so i printed it for him. His mood is the pits and he isn't dealing well like yelling at the weather because it's raining or whatever but at least the waits not long.
Best wishes to everyone in their struggle
Diane

Diane
Wish I could tell you how to get through the next few days.. took my husband shopping today.. used his credit card.. so now he has something else to go on about...lol... MEN.. where would they be without us.. Why do I think that will cause some comment Diane..
Take Care Lady
prayers.. love and hugs
Helen

Diane,

You are welcome and I'm glad if it helped. Believe me, I had the wedge resection and the guy next to me had the lobectomy and we both did great! I can't speak for the cure, but the sugery is not too bad.

Glenn

Helen -- as per your "controversial" comment about men. I know I'd be completely lost without my wonderful wife... She's been a true saint through all of this...

Helen,

Funny thing is you could take the sentence, "Men, you can't live with them and you can't live without them.", substitute "Women" for "Men" and the meaning stays the same. (I am sure my 13 year old has some technical term for that type of sentence.)

Ed