I've been seeing an ENT at Cedars and one at UCLA for the last 4 years having leukoplakia. It turned to SCC T1 or T2 a month ago. The ENT at Cedars recommended a simple (if it can be simple) removal of the cancer as an outpatient.

Saw the cancer surgeons at UCLA two weeks ago, who explained why I should get a hemiglossectomy with forearm flap tongue reconstruction plus neck node removal. It is all to minimize the possibility of reoccurance due to residual cells being left behind. He will insert a trac and a peg during surgery for my own comfort. The trac comes out when I leave in 8-10 days. The peg stays a month. I also saw the radiation oncologist who concurred surgery was better so they can save radiology for a potential reoccurance. Surgery is scheduled for 3/8.
This site is excellent. Wonder if any of you had the flap or have some tips for me. I'm a 58yo male in otherwise good health.

Regards,
Howard

Hi Howard

Sorry hear about what you're going through, glad you found this site. Unfortunately welcome to the club no one really wants to join.

Had a partial glossectomy and neck disection Sept of '02. In my case the surgeon took tisue from the incision from the neck dissection to do the tongue rebuild. Didn't have trach or PEG tube. Depending on how radical the glossectomy is, seems some are having problems with swollen tounge and movement of the tonge for a while afterward. In My case, I had 1/6 of the left side of tonge removed. Could talk on the phone and be understood the evening of the surgery, for a few days had an accent very similar to Homer Simpson. Docs pretty much insisted that I start eating stuff like soup, yoghurt day after the surgery, wanted me on semi-solid food before I left the hospital, about 7 days after the surgery.

Pain wise, not much at all, nothing that some Panadol 500s couldn't take care of. Unfortunatly, some nerves tend to get damaged so am numb around the neck area.

Are the docs planning on doing radiation after the surgery? What is the oncologist saying about post surgery rad/chemo? You will find a general consensus here that chance of reccurrance is greatly reduced by rad/chemo following surgery.

Hope this answered some of your questions, if not, let me know.
Bob S.

Hi,

I don't want to sound too negative, but I'm concerned that JetAgeHobo's surgical experience may be less than what the drs are planning for you. Their plan sounds similar to what I had. It may depend on how much of the tongue and surrounding tissue will be removed.

After 1 1/2 years of monitoring & bioposies for Leukoplakia, I too was diagnosed with SCC on the lateral tongue. Pre-surgery they were calling it a stage T2. The plan was to remove 1/2 my tongue -to the mid-line, as well as neck dissection on the left side, split my lower jawbone to access the tongue/floor of the mouth. And do a reconstruction/flap with tissue from my chest (forearm was also discussed).

I had an 11 day stay, with a trach tube while in the hospital (no PEG, but had a feeding tube through my nose for ~ 3 weeks). Unlike JetAgeHobo, I did NOT speak the first night after surgery. I hardly even remember the first night due to being drugged up and in ICU - as expected, not due to any complications. I did not speak for about a week and then it was with the trach - very strange, and only one word or so at a time. I was NOT allowed to eat anything for the entire 11 days in the hospital. I was not even allowed water or ice chips.

But, the good news, I'm recovering and doing well 5 months out from surgery. My speech is definitely different but most people can understand me most of the time. I also had radiation treatment.

i'd be happy to answer any questions, etc.

Ask questions of your medical team. It sounds as though they are taking an aggressive approach by removing more tissue to help prevent a reoccurrance. (Not a bad thing, I think many, if not most of us, here at the chat board would advocate being aggressive with this cancer).

Because your speech will be different you might want to consider taping what you sound like now. I wish I had done more of that. Funny, that I always hated to hear the sound of my own recorded voice. I wish I had tape-recorded reading some stories for my kids. We do have my voice on video camera and it is still on own telephone answering machine.

My scars seemed major while in the hospital but I am amazed now how much they have faded.

good luck, stay strong. You CAN do this; there is lots of support here for you!
Michelle

PS from Michelle41,

In re-reading your original post, I saw that theoriginal ENT team was suggesting outpatient, minor surgery.

It sounds as though you've been presented with 2 very different treatment scenarios. Are you debating which way to go? Or seeking a third opinion?

Hey Howard,
Welcome to the site. You can get so much information and support here. My husband was diagnosed in July with SCC left tongue. He had 1/3 tongue removal, skin graft from upper leg, modified neck dissections and also had a trach. Healed quickly and was back to work within 5 weeks. He developed some "suspicious" spots around his tongue graft and was biopsied. He has a rare disease, Proliverative Verrucous Leukoplakia, and had the spots removed. We were in the middle of trying to find some help for the PVL since there is no cure except to cut them out immediately because all his spots will turn to cancer, however, 4 months post surgery, he got a left swollen gland with turned out to be a very aggressive tumor. He had a radical left neck dissection on Christmas eve, but they could not get all the tumor. He began chemo/rad Jan 12, and has 4 treatments left. It's been a long, hard battle, but hopefully worth it all. I guess just be sure they take many nodes from each side. I believe from my husband's modified neck dissections, only 6 or 8 nodes were taken which were negative for cancer. Maybe if they would have taken more, they could have caught the neck mets then and started radiation much sooner. Who knows, just a thought!!
My husband has a very positive attitude and I know that helps him get through this.
Good luck and God bless,
Debbie

Howard,

We live in the Los Angeles area also. My mom has been seeing an ENT for her luekeplakia for the past 10 years then in April 03 it came up SCC right side of tongue and mouth stage 1. My mom had a similar surgery with no PEG tube. It was really tough to see her with the traik but it wasn't that bad for her. She stayed in the hospital for 7 days and they closed the traik on the 5th day. She could talk but she was pretty hoarse and with her tongue so different it took a few weeks to get her speech back. She still lisps a little but I can understand everything she says. My moms ENT did not do radiation with the first surgery back in April 03 he said the same as what they are telling you. Save it for a recurrance....(I wish we would have done more research back then) she had a recurrance in November and after more surgery this time with a graph from her leg she is just now finishing up the 6 weeks radiation and 2 chemo sessions.

I would definately get a second opinion regarding the radiation. Her lukeplakia recurred after each removal and so did the cancer..... Just a suggestion from somebody whos experience is kind of similar....

I will be happy to answer any questions that you may have.

Danielle

Your story sounds so much like mine. I also was seeing an ENT for leukoplakia and learned in January of this year it had turned to cancer. I had surgery on Feb. 3, much as you are describing: 1/3 tongue removed, floor of mouth removed, left neck dissection, flap using forearm flap, skin graft from thigh to cover arm wound. I did NOT have to have a trach or peg. I was kept heavily sedated for four days in ICU with breathing tube and feeding tube. I was out of the hospital in a week. Pathology showed clear margins on three sides of what they removed, but not on the other, so on the 27th back I went again for more surgery. This time they took the rest of my bottom teeth, part of gum and bone. I will get results of this pathology Friday.

I will be on a liquid diet a long time...the flap is very large, and pushes my tongue to one side. It cannot be "trimmed" until all healing complete (and if I do radiation that will mean some time), plus now I have no bottom teeth and that situation cannot be remedied until healing complete either.

Yes, my speech is substantially different although I can be understood. I echo what someone else already told you: record yourself. I wish I had done more of it. I did make a tape for my husband just before my surgery and he treasures it. I wish I had done so for all my children and grandchildren. When the "trimming" can be done, the doctors tell me I will speak plainer than now, but never sound as I did before all of this.

About radiation: my doctor had told me that he thought I would not have to have this. When I was released from the hospital this last time, his associates told me to expect it. After researching and reading the postings here on this site, I have about decided I WANT it. So for what it is worth...that is where I am at. Best wishes to you.

Thank you all for your info and good wishes. I attended a H&N Survivor Group meeting at UCLA the 1st Tuesday of the month. I met several (7-8) people who have had reoccurences, tonsilcular, mouth and tongue cancers. All gave good advice about the PEG, TRAC, feeding, etc. I'm going to get the radial forearm free flap as I want to look and sound as normal possible. I have also done considerable research on the internet reading abstract after abstract worldwide on the merits/ problems with this approach (talking quality, qol, eating). All in all, it seems the best surgery to do. In fact I'm looking past this surgery to what is necessary if I need rad or chemo after surgery or down the road.
Best to All,
Howard

Hi All,

Made it through the 3/8 UCLA Dr. Keith Blackwell SCC hemiglossectomy surgery, radial forearm flap reconstruction, neck node disection, peg, and trach. Actually, I feel pretty good and got great news: no traces in nodes and it is a T1. No Rad indicated. Trac was removed after 4 days and ate my first liquid meal on the eigth day and was released. I talk pretty well and have a new half of a tongue made from my left forearm (half was ok) which is less swollen everyday works pretty well. I am now eating a full liquid diet pureeing our food adding liquid and sometimes Thick It to thin liquids making them easy to swallow. Tried some grond meat the other night, it seemed to stick to the tongue but downed it with applesauce. My voice is not bad a little lispy. The arm donor site improves but I can't lift any weight and my hand is a little swolen. The home nursing comes everyday to change the dressings and check me over.

Regards,

Howard Crystal

Congrats to you Howard. Someone on the board once referred to our new speech as "Englisp" - I just love that term! As swelling goes down, it gets easier and easier to eat, talk, swallow, etc. I too was a fortunate T1NOMO, no radiation required. Last week I celebrated my one year of survivorship, and will still occaisionally lisp when I am tired or have been talking too much. Keep us updated on your progress, you've made it through the worst part so far.

Sincerely,
Lisa