Hey everyone,

My mom's surgery is set for June 30th, at 8am, and is going to take 10 hours. In those 10 hours, they will remove 30% of the tongue, and the nodes on the right side (same side for the tongue). Than he will reform the tongue with skin from the arm, and so on.

She will spend 12 to 14 days in the hospital...

After the surgery how difficult was swallowing and eating? When she comes home, will she have to drink shakes and soups for the first little while? How about taste buds, since they will be replacing 30% of the tongue, how do the taste buds get affected?

Also I mentioned in another posting about radiation, he said that they wont think about radiation until 4 weeks after the surgery... do u think he just said that so we wouldn;t worry about the radiation?

Thanks for the help

H

Dear H,

I can only tell you from my experience with only a partial glossectomy, it took me 10 days before I could even try semi-solid foods. Liquids were even tough at the beginning. As far as taste is concerned, that will certainly be diminished as the muscles that are used to rebuild the tongue won't have any tastebuds. The remaining tongue will do what it can.

I also noticed that during those 10 days I was not hungry at all. My body knew I couldn't eat so the hunger shut down. After that first taste of food, the hunger started.

Sorry, but I can't answer your question about the radiation as I didn't have any.

Please wish your mom good luck from me and I suggest that you have others with you during the surgery as the waiting is the hard part. That's what I told my wife and kids. I had the easy part.

Jerry

Dear H, You mom will have some difficulty after surgery with swallowing and possibly even wanting to eat. The "normal" waiting time between end of surgery and beginning of radiation is 4 to 6 weeks according to our Oncologist. If she is going to have radiation, as soon after surgery as she can swallow, start having her eat everything she can, or have her drink calorie rich smoothies and shakes. Learn all you can about the peg feeding tube- it could save her life and everyone's sanity. John's was put in during his mouth surgery so he did not have to have 2 different surgeries. I don't know what the experience of others is, but with John's tongue surgery, the doc didn't want him to have anything by mouth but ice chips while he was in the hospital, so he got tube fed nutrition 24 hrs. a day while there. It was 12 days after surgery before John was given permission to attempt broth, tea, etc. by mouth. He worked up to pureed soups, mashed potatoes, slippery pastas, oatmeal, scrambled eggs, shakes and smoothies in the last few weeks before rad.began. During rad. he lost the ability to taste or swallow, so the peg kept him going. You really REALLY got to stay on top of the nutrition and hydration. Best luck for your Mom. Amy

I had 20% of the tongue removed and the back part of the resection wasn't closed (to allow for less speech and eating impairment)- just light cautery and I was eating pudding and pureed foods on day 4 in the hospital (the first day I was allowed to have anything by mouth!). They wanted me eating that before going home. I ate lots of ice cream - although let it melt a little - b/c super cold - it hurt when it touched sensitive places in my mouth where they removed something. Drank lots of ensure and broths for several days. I think I managed a few noodles of macaroni and cheese within a week - but it wasn't chewing - more like just letting things slide down. Anything mussy like that or really small - but I had to take REALLY small bites or I would get a little choked up. My tongue was pretty swollen and didn't really work well for a while afterwards. I forget how long exactly it was until I could really chew most everything. I had to adjust to chewing on the opposite side of my mouth though - as my dominant side was what they cut off and I still have to use the opposite side and most likely always will.

I also didn't have the radiation - so not sure about that. I'd expect that you'll be able to at least manage liquid or semi liquid foods the whole time during radiation if you can manage the pain associated with it. I think everyone on here has had a different reaction to the radiation.

My taste wasn't affected b/c your taste buds are in certain areas on your tonuge - and both sides have the same taste buds - so she'll still have those tastes on the other side. Do a google search and you can probably find a "taste bud map" to tell you where you taste sweet, salty bitter, etc... I can't taste anything on the cut side now however - nor can I feel anything due to the nerves being cut / removed.

I also had a neck dissection on both sides of my neck and didn't have much issue with that - but remember that when chewing - I could feel that "Pull" a little. Not sure how else to describe it. It wasn't painful or anything like that - just felt a little funny from the muscles pulling when chewing.

Hope that helps.

Hi Amy and Jerry, you both didn't have radiation?? Is/was that a concern? I thought radiation was usually given after such surgeries? Or does it all depend on how aggressive the tumour is?

thanks again

H

H,

The question of radiation is one that continually comes up here on the forum. There are no set protocols for treatment of oral cancer and there are several of us here that have had only partial glossectomies and modified neck dissections. It really depends upon the doctor doing the surgery. My pre-surgery MRI showed no node involvement, but my surgeon's protocol was to remove the nodes anyway, as his experience showed that MRI's can give false negatives in 15% of the cases. In my case, since there were no nodes involved (30 removed), it was decided that radiation was not indicated. This was a joint decision by the surgeon and the radiation oncologist. If there had been any signs of cancer in even a single node, I know that radiation would have been done.

At this point in time, I am comfortable with that decision and as each cancer free day goes by, I am more accepting of it. If a recurrence or a new cancer appears, I still have the option of using radiation then.

There are many members of the forum that will argue that radiation should always be used. You and your mother have to be comfortable with the advice and treatment plan that you have been given. If the node is positive, then it certainly is the correct option.

Jerry

Well now I am confused- yet "AGAIN" I have read protocols for treating every stage of scc on various Cancer Center websites. [that's not to say they are all the same protocols] Also, our surgeon\oncologist was prone to quote "protocols" to us when I would question him about John's tx. plan. His Chemo Doc does the same thing.
H- my husband did have radiation starting 6 weeks after his surgery- altho his neck dissection showed no nodes involved [the 1st go round] The surgeon said his floor of mouth tumor was a really aggressive kind. I don't know how they know that. I thought all SCC were the same, just in different areas of the mouth, but I guess not. To fully understand this disease, you would have to devote years to study and research. At age 65, I find I must leave that to others and do alot of trusting [and praying] now. Very scary. Amy

Amy,

I think my use of the word "set" was incorrect. Perhaps the word "consistent" or "standard" would have been better. You are correct, the protocols are not the same. Through my readings and talking to many people, I have found such a wide range of treatment options and follow-up care options that it is very confusing.

Specifically regarding follow up care, I have been in email contact with Dr. Eric M. Genden, the Chairman of the Department of Otolaryngology and Head and Neck Surgery and Immunobiology at The Mount Sinai School of Medicine in New York City about follow-up care. The following is one of our "conversations":

Question - Jerry: Another thing that puzzles me is the standard of care for follow-up. There seems to be NO standard. Some patients get some of, or all of the following. Chest xray, PET/CT scans, MRI's, CT scans, etc. The time intervals and number years vary widely. It is all very confusing.

Answer - Dr. Genden: This is very confusing and currently, my colleagues and I are working on a standard protocol. In general, we order a CT scan 6 weeks after surgery followed by a PET/CT co-registered scan every 3 to 6 months depending on the risk of recurrence.

Sorry for the misused word...no intention of causing confusion.

Jerry

As far as I know it's true there are no set protocols for lots of aspects of follow-up care (like if/when to get a PET, CT, MRI) but my understanding is there IS a national set protocol for treatment of oral cancer, and it's pretty clear about what should be done for most cases, not quite so clear if you are a stage II with some factors that predict recurrence (the category in which I fall and in which your mother may fall, herson, depending on the results of her surgery).

Nelie

http://www.oralcancerfoundation.org/treatment/guidelines.htm

This is a link to the protocol contained in the NCCN guidelines.