Questions from you folks with experience

Dagney1924

Hi,  im having a few problems since my surgery. I had a SCC stage 1 tumor removed from the bottom of my mouth in September. Then found out  I had precancerous cells scattered elsewhere under the floor of my mouth. So I was told that there was a 95% chance I would have no problems because it was caught so fast. Then I agreed to having some lymph nodes removed just as a precaution. There was no cancer there.  After the first surgery they said they missed a few cell under my tongue. This was 2 weeks after my first surgery, and a small portion of my tongue had started to grow onto the mouth floor. The surgery was done as an outpatient,  but the aftermath was much worse than my first surgery when I was in the hospital for a week. Longer time until I could eat anything but liquids,  much more painful. And I was told they would fix my tongue growing to my mouth floor, but the flap had fallen out in a couple of days , which I told them, and they said it would probably be ok. 

I'm trying not to make this a bad novel. So I got a better insurance policy, but found out I needed a new doctor. This guy specializes in reconstruction,  which I need on my tongue,  as it has completely attached to my mouth floor. I talk like Sylvester the cat and it makes eating more difficult. Also, due to mixupsxwith doctors and insurance  I'm suffering with lymphedema, which the doctor never told me about,bi figured it out from web search.

 

My questions are,  is the capability to restore my tongue to at least semi normal  possible ? I didn't even have any tongue surgery. It's numb and painful in the areas where it's not numb.

I FINALLY have an appointment with a lymphedema therapist next week. Shouldn't doctors tell you what it is?

 

This new doctor's nurse is already saying they will want to take cat scans. But I dont think it's good to take them so close, the other clinic wasn't going to do that so soon.

 

 

 

 

CivilMatt

Matt's Sunday Service, Pacific Standard Time

Dagney1924,

That was truly a mouthful for a stage I, SCC patient. Normally, they breeze in and out of the H&N forum more as a courtesy then a necessity (sometimes it is good to be only stage I). You started off that way  with the 95% statement  you made, then it all got worse.

I had stage IVa, SCC, BOT, 1 lymph node, hpv+ (surgery, Erbitux and radiation). They removed the cancerous ulcer from my tongue and the swollen lymph node but I did not have any real complications from the tongue surgery.  My tongue is still to this day numb and tingly like the it when I first had the procedure done 8 years ago. But let’s get back to you.

 I did not have much pain and the surgery did nothing to slow my eating down. For some reason yours did. Also, my surgery was at the base of my tongue and maybe that made a positive difference for me.  Well, I would expect yours to heal and get better soon.

The tongue flap can be an issue sometimes, as you have found out. I am happy you found an expert to make the need repairs. You need it done correctly to heal in the preferred way, like a normal person or pre-Dagney condition.

I did not read where you had the radiation treatment, but if you are having edema problems that is usually the culprit for the members of the H&N forum. Lots of us went to massage therapy for a number of treatments and they will teach you how to do it for yourself.

You also mentioned (waiting) for the cats scans so , that also indicates rads. I will guess you have had rads?

I need to exit the forum and head outside to work ona number of projects I have going on.

Matt

tbret

Late to the party

Oh the joys of lymphedema.  I read (here) that it usually pops-up two months after treatments stop and I think mine showed-up almost two months later to the day. 

I will second your opinion.  Someone should have told me about it and nobody did until I mentioned it to my radio oncologist who said, "Haven't they made you an apointment with the edema nurse?"  I'm like, "What?  What's an edema nurse and just exactly where is a person's edema, anyway?"  As it turns-out mine wasn't a nurse but a physical therapist who specializes in edema therapy for us fortunate souls who get through treatment and have this problem develop.   Mine was so bad (neck) my sister saw a picture and asked "Ewwww. Can they surgically remove that?"

Thanks, sis.

By the time I went for my appointment mine had reduced substantially on its own, but I learned how to do my own therapy and I did that for weeks and it really did reduce it a lot.  You really have to try to see it when it is bad and you really cannot see it when it isn't bad.  (this has been true since the five month mark)  At my last check-in with the therapist my wife went with me and since then she has been doing it for me.  I can do it myself, but she likes to be "involved" in my continued taking-care-of-issues.

I reacted to many things like you did.  Yeah, there's a lot they didn't tell me.  In retrospect, I think it is probably a good thing that they don't sit you down and give you a pamphlet full of all the things in your life that very well change permanently as a result of having cancer in your neck.  But you know, as things go the lymphadema is a small inconvenience - at least I see it that way.

Dagney1924

CivilMatt said:

Matt's Sunday Service, Pacific Standard Time

Dagney1924,

That was truly a mouthful for a stage I, SCC patient. Normally, they breeze in and out of the H&N forum more as a courtesy then a necessity (sometimes it is good to be only stage I). You started off that way  with the 95% statement  you made, then it all got worse.

I had stage IVa, SCC, BOT, 1 lymph node, hpv+ (surgery, Erbitux and radiation). They removed the cancerous ulcer from my tongue and the swollen lymph node but I did not have any real complications from the tongue surgery.  My tongue is still to this day numb and tingly like the it when I first had the procedure done 8 years ago. But let’s get back to you.

 I did not have much pain and the surgery did nothing to slow my eating down. For some reason yours did. Also, my surgery was at the base of my tongue and maybe that made a positive difference for me.  Well, I would expect yours to heal and get better soon.

The tongue flap can be an issue sometimes, as you have found out. I am happy you found an expert to make the need repairs. You need it done correctly to heal in the preferred way, like a normal person or pre-Dagney condition.

I did not read where you had the radiation treatment, but if you are having edema problems that is usually the culprit for the members of the H&N forum. Lots of us went to massage therapy for a number of treatments and they will teach you how to do it for yourself.

You also mentioned (waiting) for the cats scans so , that also indicates rads. I will guess you have had rads?

I need to exit the forum and head outside to work ona number of projects I have going on.

Matt

Thank you for your response.

Thank you for your response. No, I didn't have any radiation treatment or chemo. Just the surgery on my mouth floor  and I  didn't have cancer in my lymph nodes but I approved them to remove some. The doctor said it was precaution in case the cancer returned.

I went to the facial reconstructive specialist yesterday but he wants to do a PET to make sure there is still no more cancer before he does surgery. Yes, they told me I had caught the cancer so early I shouldn't have any problems, I guess I was one of the few thatdoes.

Stephie75

Hey there Dagney,

I just wanted to say I had radiation and actually noticed Lymphodema in my shoulders right next to my next 4-5 weeks into radiation. I didn't have surgery or chemo. Stage 1 cancer on my left vocal cord that the RO said was 2 by the time I started treatment. A high survival was given to me like you. I believe it was 85-90% at my first appt.

I have thought about going back to PT. I only say the Physical Therapist once. I had a great range of motion etc (of course, it was at the beginning of radiation) Now, my neck feels stiff a lot, etc. The usual, but I just stopped treatment on January 28th of this year, so I am hoping no new possible surprises are coming! Since being diagnosed it has affected me a lot as well. I have the fear of it returning also. I hope this let's up.

There have been some videos shared on here from YouTube on massage for Lympheodema drainage to help with this. I need to make sure one is in our superthread if not, but here is one Russ shared last year... https://www.youtube.com/watch?v=VQdLZ26r-rU

I am going to start trying this and may go back to PT to see what they can do.

I hope that helps some,

Steph

mapley49er

I go to PT about once a month for it but it is a daily pain and stiffness and try to do massage and wearer a compression mask at night while sitting at home