Hi my name is LeAnn I have had squamos cel carcioma. Back when I was 20 years old. I am now 39 and have just gotten out of the hospital from a 7 day stay. They did the partial glossectomy again, also this time they removed levels 13 lymph nodes and did a skin graph on the tongue to help maintain mobility. I had surgery on Sept. 13 and now cannot speak, nor swallow or eat. I really did not think this was going to be so serious. They have been so optimistic. I have come home healing from surgery, the trech that was put it is gone and healing. My Speech Therapist, while incredibly nice is has no idea when any of this will come back. Though she says she thinks it will if I work hard. After a couple of days, I am beginning to have my doubts, my vocal cords are so hoarse I can barely speak, there is not swallowing, though I try awfully hard. I can make the movement byt my throat will not close all the way. Does any one out there have information on any of this. Not to mention in about 4 weeks I will probably begin Radiation therapy again.

Hello LeAnn I'm sorry to read that you have had to undergo surgery a second time. As it is only very recently since your op it's still early days for you to be worrying about speech, swallowing etc. As you have had a trachy your throat area is bound to be bruised and sore - give it a bit more time and, as your therapist says, keep doing your exercises and very slowly things will improve. You did extremely well to get out of hospital in just 7 days after all that surgery. Do you have a peg or ng tube for feeding? If you do need radiotherapy you will need to keep your strength up for that. It seems to me you have done exceptionally well - so take it easy, things will get better. B

Hello B,
Yes I have an NG tube. I hate it, but I also realize that I have already dropped approximately 15 pounds in 7 days and that cannot be good either. So I am trying to keep the feeding scheduled and normal. I am trying to keep in good spirits, I have just read so many awful things and then to find out that is where I am now. I am truly frightened. I had no idea what a struggle this would be. The last time was not easy, but by comparison I just healed did therapy and went on with my life. I guess I just cannot keep being so lucky.

Hello LeAnn

You don't have an easy journey and it is best to focus on doing what you can, as best as you can, and not worrying about the future. So try to have regular feeds to keep your weight and strength up, do the exercises within your 'comfort zone', and communicate with pen and paper and get through the radiotherapy. As everything heals and settles down, things will look better. As long as you remember you are still the same LeAnn, you will always find a way around whatever problem life throws at you. So get strong and 'sock it to them'. We are here to cheer you and support you through it all.

Best wishes
Vinod

Hi, it is me again. I noticed I said surger was on the 13th of september and is was really on the 6th I came home on the 13th of september. I am actually doing okay, trying to adjust to not communicating with my children. I still have little to no swallowing. MY biggest concern is that they removed the trech tube on Tuesday the 12th and here it is on Saturday the 16th and it has not healed is this normal, they kept say 3 to 4 days. I can feel air escaping and mucus getting out of the hole. But am leary of changing the bandage to often. I am not have stuff using out but right at the adams apple part I cannot seem to keep that area dry.
Can ya'll help
Thanks LeAnn

Hi just wanted to update. I have had my ng tube removed for 3 days now. Went back to the doctor today and was a little concerned that she wanted to put a stomach tube in, but she said if I could increase my intake over the weekend we would see. I am drinking the protein shakes now and I see that as such an improvment. I have begun eating puddings, soups, and so on, but I must use some thing to get the food to the back of my mouth. Since I have very little tongue to push it back there. Does anyone have any suggestions on how to improve this and on how to stop the stiffness in my neck. I was told I would have to see a therapist to work on the fibrosis (not sure if this is correct) in my neck that has set in. Please let me know if you know of anything. They are wanting me to start radiation soon and I am not ready, I would like to be more mobile.

Hello LeAnn Well done on managing to eat puddings so soon! Has the trachy area healed completely now? Mine took a while as there was a stray 'stitch' still there! It sounds as if you are well on the way to swallowing - but I know what you mean about getting food to the back of your mouth when the tongue can't do most of the work for you. I was told to use a baby spoon (small plastic) to start with and put a small amount of food as far back on the 'normal' part of my tongue as was comfortable, stick to things like yogurt, custard etc to start with - tilt head back and swallow hard, as though trying to swallow a large pill/tablet, then follow with a drink (warm but not hot). It seemed to take forever at first and I wouldn't eat in front of anyone but eventually the swallowing got easier (it will never be as it was) but as long as you are taking in enough calories etc to build yourself up, especially before radio. I did have a peg tube in my stomach, which wasa godsend as it's so easy to use, especially when you are tired and just want to know you have had all the right stuff.

The stiffness in the neck can only get better with exercise. The lymph is collecting around your neck overnight (I slept practically sitting up for many months) and you must move your head as much as possible - turn it every possible way (without overdoing it!) right, left, up, down, trying putting your chin on your chest, push your tongue out as far as is comfortable, then to left and right, push tongue into side of each cheek then up to palate. And open your mouth as wide as you can and exaggerate the A, E, I, O, U, sounds. Dr Joshi has a proper list of these somewhere on here - I'll try to find it! It's still very early days for you so PLEASE don't stretch things too far, but you must exercise lots of times a day as a rountine as well as keeping your neck moisturised. I feel as if I have lectured you - I'm sorry - but you need to get as much flexibility back as possible before your radio treatment as that will make things tighten up again. You're doing great already. Good luck Brenda

Brenda,
Thanks for all the advice, you are definitely not lecturing me. I am turning my neck as much as possbible, and you are correct in the mornings it feels so stiff. I find the baby spoon doesn't help as much as placing a little bit too much food and then forcing it back. My biggest problem is I still do not feel most of the food, so when I lose control of it I can't find it to swallow it. I am using the therabite to help stretch my mouth and we have yet to begin speech therapy. However I try to talk as much as I can to make my voice strong. I just hope some of this stiffness goes away. I feel Like I am wearing a permanent neck brace. Thanks for all of your advice, LeAnn

Hello LeAnn

I hope that these Oral Motor Exercises, that Brenda mentioned, are some use to you.



The Therabite device will need regular use and will help. Take care.

Best wishes
Vinod

This message has been edited. Last edited by: Dr Vinod K Joshi,

Thanks for all the help. I feel like I have reached a plateau. I am still trying to move food around in my mouth and that is really difficult. There are things I just reallized I will never do like lick my lips, make the kissing sound. Licking your lips sounds so simple, but it moistens the lips, which is problem for those of us who have already had radiation before.
The worst for me right now is the swelling in my neck. Apparently since I have already had radiation therapy before I have a more severe case of fibrosis in my neck. It is so stiff all the time, of course it is worse in the morning. Does anyone have any suggestions on how to help with this? I am trying to massage but this really does not help a great deal. Does this go away at any point in time. I am only 3 1/2 weeks post op.
I want to thank you for all of your help in answering my questions. No one really understands what I am going through and how much it has altered my life. Not only can I not eat solid food, I can barely talk, my neck is always swollen and stiff, I still get so tired and I have not had radiation yet. I just want you to know how much I appreciate your time.

Hi LeAnn,
My name is Chrys. My mom has squamaus cell car. She had a tumor the size of a golf ball in the base of her tongue. 5-31-2006 she was diagnosed w/ cervical cancer that had spread. Had surgery 6-23-2006, we got clear margins---no radiation or chemo. Then in July we got another diagnosis of cancer the "SCC". Mom had surgery for that 9-8-2006, was in ICU til 9-16-2006 and was put on the regular floor but that after noon she had a heart attack & was put back into ICU. We spent a total of 13 days in ICU then another 3 on the floor before she came home. She come home with the treach, had it for 1 week at home then it was removed. I myself have not had anything like this but, being a caregiver for my mom and seeing all the difficulties and problems she's had I can very much feel for you. Knowing this is a rough road to travel. I did want to tell you all of the questions you have ask I have also been asking. After surgery the "flap" on moms neck died. (where they cut to get to the tongue)it still is not healed. But before any of her surgery she had lost 50 pounds & was under nourished. Mom is 69 years old & 50 lbs. underweight, but a fighter to the end no matter what. You have to do the same thing.....No matter what you fight........and when ever you're feeling down send a message, cause everyone on this site wants to help lift your spirits & give you the support you need to keep going..........
I see that you live in Akien, SC......Not far from us, we live in Sylvania, GA about 60 miles below Augusta, GA.

I want to thank you for your response, I will pray for your mother. I have been very lucky here in Aiken, I have wonderful doctors at MCG and they have treated me very well. My doctor has been very aggressive with her treatment plan and I am hoping that I will appreciate that later. Again I want to thank you for email. It is hard for people to understand what our caregivers and patients go through with this type of cancer. It is definitely life altering for both. Please keep in touch and let me know how it is going.
LeAnn

Hi LeAnn,
I'm glad you responded, how is your treatment going??????? I heard about a gel that is suposed to be really good, they say it helps your skin while going through radiation. Its called radiance skin gel. I e-mailed the company about it and they also told me about another product that will help. A homeopathic remedy called radiation remedy which helps with the side effects of radiation. Thought you might want to take a peak---www.canhelpnow.com---- and www.bristolcancerhelp.org. I took mom to the Dr. yesterday, she got a good report can start to eat alittle now BUT radiation starts in 2 weeks so I guess the eating will stop. You hang in there --- keep fighting and let us know how your doing.
Chrys

Hi Leann
Firstly, I hope that you are feeling a little stronger with each day and that your fighting spirit is still helping to keep you on the rocky road to recovery!
Last year I had surgery for SCC to my tongue and fought hard to get back to 'normal', but have to admit that I'll never be the same Lindsay, due to scars, speech alteration etc.
I am nervously intrigued by your scenario 'cos at the moment my Doctor has put so many things out of bounds to me...drinking alcohol, trying for a family with my hubby of 1yr (we got married 4 months after my surgery-obviously I was under major effect of all my drugs!!!)
I've always been a very pragmatic person, but there are still days when I think...what's the point in being so 'well behaved' when I constnatly fear that the SCC will return...
Hoping you can, if you feel comfortable, give me some advice via your experience.
Take Care & God Bless

Lindsay,
Has your doctor put these things out of bounds temporarily so that you may heal or permanently?
I ask this because I had my first battle with cancer when I was twenty. Against my doctors advice I married 4 mos. after my radiation therapy ended and became pregnant. I delivered my first son 9 months later and he was very healthy and is graduating from High School this year. I also have 2 other sons and up until now have led a very normal life.
I had thought I would undergo Radiation Therapy again, but that is not going to happen due to the adverse side effects, since I have had radiation before the side effects are very bad. I am afraid of the cancer coming back since I still have a 15 to 20% chance of reoccurence. My margins were clear so I am trying to move on.

I will not say that this is not hard, in 1994 I was in a horrible car accident that left my right leg badly damaged, I was in a wheel chair for a while but recovered well. My point in telling you this is that this recovery far surpasses that one. This has been extemely difficult and I constantly battle depression and fear of the cancer returning, on top of all the therapy I am still going through to learn how to eat and speak again.

This surgery has been a struggle but I will not let it define my life. With lots of hard work I will speak again, not perfectly but enough to lead a great life. I am not trying to say that this is not difficult however what else can we do? Good luck to you and I will pray for things to work out for you. God has a way of making things work out especially through these tough times.
Keep in touch and let me know how you are doing.
LeAnn