I am a 42 year old female diagnosed with base of tongue cancer in February 2005. I have 4 children and 2 grandchildren. The oldest child is from my husbands previous marraige but I count him and family as mine. shortly after diagnoses I started High doses of radiation.
I also went in the net searching for info and found a site that explained most of what i would go through except the sickness from the radiation and chemo!!!! I had to be hospitalized twice because of dehydration,thrush & mucusitious and my blood counts not being on track. I have a peg and porta-cath and still got weak. It was stated that we were using the wrong water for me and it was messing my body up. They wanted me to use saline but when I released they said that I could use my tap water again.
My mom who lives in Pa and I live in NC took a leave of absence from work to help me. She took me to radiation every day and to the chemo. She was a trooper. I got so weak towards the end if it wasn't for her I probably wouldn't be here. She literally kept pushing the nutrients and meds and anything else she could on me.
She had to leave shortly after treatments were over. I didn't want her to go she was my crutch. I went back to work 2 weeks later. I am still tube feeding and have been since my second week of treatment.
I was scheduled for a neck dissection in July but cancelled it. I was trying a herbal supplement for my lymph nodes and cancer plus I was scared. I still had sores in my mouth and now wasn't able to talk. I couldn't talk for about 5 weeks. My family enjoyed this I believe. Snapping my fingers became a joke they would laugh but would be patient in waiting for me to write or try to do sign language like charades. That is one good thing this whole thing has given all of my family is appreciation of each other and patience.
It has been hard. I went back to my ENt and scheduled the surgery. I was fine with everything because at the time I felt that I had to do the surgery because I need to know I did everything I could have to get rid of it. They feel that the cancer is gone from my tongue and want to be sure that the cancer is out of my neck by removing all lymph nodes because they were swollen and possible could have cancer in them and they can't tell until they remove them.
For some reason this past week I have been so emotional, I think it is that I am so scared. i do not want to go back in the hospital but I have to. The ENT doctor who is going to do the surgery feels that I would be able to go home the next day. I don't believe I will and am afraid of all the pain and pain meds I will have to endure. I had a hard time with the pain meds I had when I was first hospitalized.
I found this site yesterday and have been reading all that I could and feel that I need encouragement that it's going to be okay. I want to know what to expect from the neck dissection if possible. My doctor said that it will be one cut from one side to the other to remove all the lymph nodes that are in the mass?? And that I will be stapled with 2 drains. I am not sure when the removal of each will be or if it is painful. All of my doctors have said that I have been through the toughest part and that my body has been put through hell and it will get better in time.
I hope so. since I am typing I now know how hard it is to type what you want to it is so hard to keep on track. Please understand and offer some answers if possible.
Thanks
Love Terry

Terry,
My neck dissection was on the right side only. They removed 30 lymph nodes and I only had one drain. I had very little pain from the surgery. My neck, shoulder, chest, and back were numb for about 2 months after. My neck is still numb. My biggest problem was that I had trouble lifting my right arm. I am still working at this, (surgery was in April) but it is much better. I still have some swelling in my face but it isnt that noticeable. I was worried about the scar but it really isnt that bad. The drain did not hurt coming out.
I did not have radiation or chemo. I think that after all you have already been through, the neck dissection will be a piece of cake.
Good luck and keep us posted!!

Terry, the worstpart of my husbnd's bilateral neck dissection was the swelling. The drain helped that alot. It did hurt when it ws rmoved. He also had staples and only a few of them were tender when they were removed. 1\2 were taken out the day before he let the hospital and the other 1\2 after his 2nd post surgery visit. His scar is barely noticeable- I think you will get through this part o.k. Good luck. Amy

Correction to above post. When's John's neck drain was removed it did NOT hurt. Sorry. and the biggest problem he has had after the staples were removed has been with shaving, which you won't have to deal with. Do ask for a good cream to keep the wound soft and healing .Amy

Hi Terry,

Like Mellay, I had a neck dissection on only one side, my left. I also had 30 lymph nodes removed, with a tongue resection and no rad or chemo. I can tell you the the lymph node removal was a piece of cake compared to the tongue surgery.

You've been through the worst part already. The drain removal is a 3 second procedure and really it is nothing. There will probably be some neck swelling due to a condition called lymphedema, but massaging the area will help create new channels for the lymph to drain. This will be shown to you by the ENT or physical therapist. Like Mellay, I also had my surgery in April and I am still numb on the side of my face. I know that this will probably remain this way the rest of my life (which I now expect to be a very long time). It is really no big deal. Shaving is still a strange sensation.

You can also probably expect some limitations in arm movements, but with good therapy, that should come back to normal. I was and still am at 99% of normal range of motion.

I was back to work (as a dentist) in 3 1/2 weeks and a full patient load in 4 1/2. And remember, the worst part for me was the tongue surgery. You won't have this problem.

YOU WILL BE FINE.

Continue to ask questions. We hear you.

Jerry

Thanks for the encouragement. How long was the neck surgeries and how long did you stay in the hospital. I am trying to make arrangements with family to help with my husband. We own a music store and when I was sick before I was out 3 1/2 months and it all fell on him. It was very hard.
I guess I worry to much. I always have and looked out for everyone. Now they have to look out for me. This is hard.
I also tried eating last week and it lasted til Thursday my throat got so sore again I went back to my tube. When I eat and swallow it feels like there is a ledge or something sticking out in my throat to catch food and not allow it to go down. It will collect it and then I can cough it back up to choke on it. Has anyone had this problem and should I post this question somewhere else?

I also feel like I have a sore on the left side of my tongue this is scaring me. Last night it affected the inside of my cheek. It was sore.

Again Thanks for the info I need to get going to work.

Oh by the way Jerry I am originally from Morrisville PA. Been here in NC for 20 1/2 years. Small world isn't it?
Love
Terry

Terry,

I had a neck dissection and partial glossectomy at the same time and was in the hospital for about 5 days. (I had surgery first, then radiation starting about a month later, so I can't comment specifically about what it's like to have surgery following radiation.)

Like most of the people here who have had both surgery and radiation, I found that surgery was much easier to cope with and recover from. I was able to go back to work within about 2 1/2 weeks after surgery. While I had some swelling and numbness in my neck and jaw for awhile, everything eventually healed very well -- all the nerves seem to have regenerated long ago and I have had full sensation in those areas for years.

Regarding the recent sore spot in your mouth -- since you've just had radiation not long ago, it doesn't take much to irritate the inside of your mouth. Many of us have found that something like the rough edge of a tooth was rubbing against the tongue or inside of the cheek and causing spots like that to occur. If that's what is happening in your case, you may want to have it filed down or otherwise dealt with to remove the irritation.

I hope your surgery goes well -- please stay in touch and feel free to keep asking questions.

Cathy

Terry,

Small world, for sure. I've been living in Yardley since 1978. Does your mom live here?

My surgery was 3 hours long, done on a Wednesday and I went home on Saturday. That was probably a day too soon. I had swelling on Sunday and ended up in the emergency room. Just got a little worried.

Good luck with the surgery.

Jerry

Hi Terry,
I across the river from Jerry in Trenton. I have had two of these neck disections. The first in 1997 was a neck disection only and lasted about 6 hours. I had a metasisis to one node in the neck. No known primary. I was in hospital 5 days. Went back to work at desk job 8 days later. A little too soon. You should not be doing any heavy lifting, more than a lb for several weeks after surgery and may need PT. I had no pain with either neck disection other than what I caused by injuring my back by lifting too soon and not having any arms on my computer chair.

Is the surgery being done at a major cancer center? If so, I don't think you need to worry. If not, I might inquire as to how many of these operations this doctor had done. You need someone who can do this in their sleep.

Take care,
Eileen

Jerry thanks for the info.
My mom still lives in Morrisville. I have an uncle that lives in Yardley. I haven't seen him in over 25 years. We were not that close. My mom is worrying me because she has recently been ignoring me. She doesn't answer her phone and she will not answer my emails. After she left taking care of me she wanted me to email her everyday to let her know how I was doing.
As many of you know after being diagnosed and going through hell you are glad that nothing is as bad as it was and everything is not so bad after all. I would tell her this in my emails and told her that she was expecting a lot out of me. I couldn't physically talk during this time and also during treatment I lost my voice and couldn't talk and she was with me during this. I just don't understand her at times. She went through a lot with me and I think it scares her to hear me (my voice now is very hoarse) and the way I looked when she left must have been hard.
I do have some concerns and knowing that you are a dentist you may know what causes thrush and mucusitus? My tongue is starting to feel like it did when I first was hospitalized like it is on fire!!! I have never been much of a drinker of anything and am having a hard time swallowing water to keep my mouth moist. I am back to tube feeding again to make sure I am getting all my nutrients and try to get fluids.

What is the average stay for someone for a neck dissection? What is the difference between neck dissections besides just having them on sides? From what I understand my ENT doctor said that the lymph nodes are in a mass and he plans to cut from one side to the other and remove this mass. He said that there should not be any nerve damage this way. He plans on the surgery being 2 to 2 1/2 hours and I should be able to go home the next day.

My sister who lives in NJ wants to come and help and be with me. With surgery being on Friday and from Jerry's stay that would make me getting out of the hospital on Monday. She needs to return to work WEdnesday and will need to leave Tuesday. Would it be worth it her coming down? Will I mostly be in the hospital the whole time?

I am just worried about everything!!! Every one tells me that everything will be okay. Maybe that is why people usually get surgery first and then Rad/Chemo because the hell you go through with the rad/chemo is something you just are not ready to go through again. I do not mean to scare anyone but I went through so much and I guess now I gotta remember it was worth it and I am still here.

The doctors believe that the tumor in my tongue is gone. I need to believe them but with my tongue, throat and mouth still giving me problems and last radiation was 3rd week of May. I can't remember actual dates I was in such limbo with all the drugs I really do not know what was going on. I have been getting better like I said I just worry.

Thanks for all of you so that this is here for me to vent and hopefully get answers and support. It seems like a lot of you have been through a lot more than what I have and are still here. What am I so worried about you are still here!!!! Thanks thanks and thanks.
Love
Terry

Thanks Eileen for the info. I do have to wonder though what were your symtoms for you cancer?

This reminds me of a joke my dad used to say when I was little...If I asked him a simple question he would say "It kinda makes you wonder doesn't it?" "Don't wonder to far you might get lost."

And yes Eileen I understand the word river. Thanks to the Delaware I met my husband to whom I have been married to for 20 years. He use to work on a Tug that would go to Trenton hauling coal. The Anchor in was the spot. I don't know if it is still there but God was with us and has always been.

Through this whole ordeal it has brought him and I back closer again.

I am so glad I found this site. It has helped me a little so far and I feel that It will help me out more to understand and not worry so much. Thanks for caring!!! We are all going through trials and tribulations but we all need each other.

Take care and thanks again
Love
Terry

Hi Terry. I had surgery on my larynx only and just finished my rads last week. Though I have no answers I will be thinking of you and wishing you only the best outcome. We will be here for you.

Blessings,
Barb~

Hi Terry,

I too am in NC. I had my work done at REX. If you like, I can call and we can talk. I know several people locally hefre in Raleigh that went through what you are going through. I also had SCC at the base of my tongue. My disection was done on Jan 31. had two drainage tubes. Although it is surgery, it was not so bad. Removal of the tubes was easy and did not hurt at all. I am still numb around the scar, which is hardly noticable I might add, but the numbness is slowly going away. It took me 7 weeks to be able to eat after treatment to remove my PEG tube. I had it taken out the day after my disection. I finished radiation and chemo the first week in December. I think I may be able toshed some light on what to expect from here on out.

Steve

Terry,

I think the Anchor Inn changed owners and has a new name now.

I'm so sorry to hear what you are and have been going through, both physically and mentally. Being a care giver is a very tough job and I hope that somehow you and your mother will be back in touch with each other soon. It's a such a shame that this awful disease can destroy relationships, too.

As far as your questions go regarding thrush and mucositis, I would suggest that you go to the home page of this web site and use the search field on the right bottom of the page. Since I fortunately did not have to deal with these problems personally and I just don't see patients with them, I think you will find the search very helpful. Also, many members have had these problems and I'm sure you will get posts with helpful advice.

I'm sure it would be helpful having your sister for support and I hope that you won't be feeling that badly from the lymph node surgery. You should plan on someone being there for you at home, for at least a few days, probably for transportation, if needed.

Good luck and I am leaving tomorrow for a few days and probably won't have access to a computer until Sunday. Will be thinking of you.

Jerry

Thanks for the encouragement and info. I have an appointment with the doctor tomarrow morning @ 8:00 and hopefully she will be able to answer some of my questions. My mouth and throat are really giving me a fit!!
I don't know what to call it either mucos or phlem that is choking me in my mouth and my mouth being dry!! When I sip water it makes my mouth sore so then I have the wonderful comfort mouthwash! I also do mouth rinse and have been with salt and soda water. I make it stronger than suppose to maybe this is my problem. I'm not for sure but I don't have any problems but with my mouth!!!
It has made it hard today because we are short on help and this causes me to talk more. Plus training a new employee. It is not good for my mouth or throat!!!.

Take care
Love
Terry

Terry

I had neck dissection only on one side, but I had cancer of the tongue also. I am in NC also, I went to Greenville for help. I had surgery twice one to remove tumor from my tongue and then I noticed swollen nodes and then had the neck dissection only on one side. I was in the hospital each time over night. It didn't hurt when the drain was taking out. I did radiation & chemo after surgery, the Dr. 1st didn't think I would need it because the tumor on my tongue was small, then when I went back about the nodes he didn't think it was cancer. I told him I wanted them out, and that was a good thing 3 were cancer. After that he decided I need both rad.& chemo. Where are you going for treatment? I'm in Wilson and go to Greenville for everything. I will put you on our prayer list at church. I will be thinking of you on Sept. 2, and wish you all the best.

Joan

Thanks so much you made my day!!! It has been a tough day. We had to make some decisions (just in case and things you should have done anyway) for our wills. I still am scared but you gave me hope. I have been going to Greenville. Pitt ENT Dr. B...... is doing the surgery and I believe he has my best interest in mind.

I first saw a surgeon in Washington about a lump on my neck found by my doctor during a routine physical and he said that it was probably a cyst and he could take it out that Friday. (I only has an ultrasound done at this point) This was in the beginning of Oct 04. I wanted a second opinion and went back to my regular doctor and told her this and she said that insurance doesn't pay for a second opinions.

I kept all this to myself not wanting to worry any one and things at our business got busy so I just put things off. Then I started noticing that under my jaw bone I my glands were getting swollen and was not going down.

After Christmas and getting inventory straight I went back to my doctor and she schedules a mri. She mentioned that it was suggested on the report from the people who read the ultrasound for me to have a mri.

She called me at home as soon as she got the results and told me I had to see a surgeon right away and scheduled an appointment with a surgeon at the Brody school of Medicine. My husband went with me to the surgeon and he said that he couldn't do anything because there was something in my tongue way in the back that he couldn't see it and sent me to Pitt ENT that very same day.

At Pitt ENT he looked at my scans and said he wanted to get a better look at it and had to do the camera thing up my nose to see my tongue and throat. He numbed the pathway first but it still had me sitting on edge. I am a very anxious person and suffer from anxiety. He then told us that he wanted to do a biobpsy to find out exactly what it was to rule things out.

I had the biopsy done and it was cancer. We had different ways to approach it and we chose to try radiation and chemotherapy first then surgery. We were in shock the words of radiation, chemotherapy and surgery were not really sinking in as much as cancer. I had an uncle pass from a tumor he had on his brain 5 years ago so It scared me.

I know now that there are so many different cancers out there and treatments are so different and cancer is so unpredicable that all we do is the best we know how and keep up our hope. With people like you and the others on this site giving us that are going through this encouragement and to know that we are not alone helps a lot.

I was so sick from the radiation and chemo people just didn't think that I would make it. With prayers and my mother and family doing all that they can I am still here working back in our business 6 days a week. Everyone says I look fantastic.

My main concern right now though is how long will I be in the hospital. From my understanding you went home the next day? how many days after surgery did the tubes come out? Then how about the staples. ?

With running a business and school starting I really do not have much help available. I have a lot of people praying for me I just have a hard time asking for favors and help. Maybe this is a learning experience. I know it has let my employess do more. They want to do more to help me because I do look out for them and they missed me when I was out for 3 months with the radiation and chemo.

Love
Terry

Terry, as far as work is concerned, look at it this way. When you are WELL, you can come back full bore and hug everyone that helped you through this. But if you try to work before you are well and cause yourself more stress, you are making it tougher on everyone. While I am the caregiver in our situation, I was a 24-7 employee of our family owned business. When John was diagnosed, I called my bookeeper and 2 saleswomen in and said "it's your baby until John is well" They have done a great job without me and have even made some improvements. Concentrate on yourself for now. Best luck. Amy

Hi Terry,
If you will look at the signature of most regular posters, you will see when and what their diagnosis was and their treatment. For those of you, if you that have not done this, please update your signature on your profile. It gives people a base as to what and where your anwsers are coming from. I also recommend including year of treatment, because protocols change.

Take care,
Eileen