Hello,
I have been reading your stories here for a week but this is my first post. My husband has just been diagnosed with a recurrence of his SCC. This time the cancer is in his right cheek, and possibly the mandible. We just met last week with the surgeon and today with the plastic surgeon to discuss what may happen in surgery. I know that a number of you have had the Fibular Free Flap done to replace the mandible, and my question is how long was your recovery time? The surgeon told him about 4 weeks but the plastic surgeon said 8-12 weeks. He is a farmer, and if any of you know farmers you know they don't like lazing around the house!
Also, did you have a tracheotomy, and for how long? What was the incision like? They said that his would be from the middle of his bottom lip, through the chin, down the neck and then over to the right. That just sounds so horrible to me!
I am trying my best to be positive and believe that he will again beat this thing. His mood is always positive--I don't know how! His last go-around he lost 50 pounds (that was with a PEG), and powered through his radiation and chemo without taking a break, but there were times when I didn't know if he would make it or not. I'm so scared that a recurrence is a very bad sign, but I don't let anyone know how worried I am.
Here's the kind of guy my husband is: he was explaining to a friend of his that they may have to take bone from his leg to rebuild his jaw. The friend said how awful that sounded. My husband said "Well, then I'll really be able to run off at the mouth!" lol
Thanks for reading this, I really have come to appreciate your wonderful survivor stories and your courageous spirits!
Lori

Lori:

Im so sorry to hear of your husbands recurrance. On the positive side, you have found OCF. There is a wealth of information and support here.

You mentioned your husband had a peg tube and lost 50 pounds. Thats similar to how I was, Ive lost a total of 65 and kept it off for now anyway. Did his doctor recommend getting the peg tube again? It really is very helpful, imagine if he hadnt had it last time. Its much harder to go thru radiation and chemo than having surgery.

Your signature says its Stage 2, has there been a pet scan done? How much have you found out about how advanced it is? My cancer was also in my cheek both the first time and my recurrance. First round was chemo and radiation. Somehow even after a clear pet scan, I had a recurrance in almost the same spot on my cheek as round 1.

Everybody reacts differently and there are so many different types and places a person can have oral cancer. Have you read "trach trouble" from Karen M? Her husband has gone thru something very simialr to what you are describing. The surgery I had for my recurrance went in thru my mouth and cut out the inside part of my cheek. No trach for me. I think my recurrance was much simpler than what you are describing for your husband. Mine was caught very early and it didnt affect the bone at all. I was told that once the surgeon got in there it could have been necessary to scrape the bone, luckily it wasnt. My surgery was done outpatient, but I probably should have stayed over 1 night. I was back to work the next week, but remember I didnt have everything done that you described your husband may need.

Hopefully your husbands case will be similar to mine. If your husband doesnt need to have the jaw reconstructed then it should be fairly easy to recover from the surgery. Im sure someone who has gone thru that will respond to your questions.

Your husbands positive outlook will be a big asset to helping him get thru this. Ive known many farmers and you are right, they cant sit still. There is always something that needs to be done. Best of luck to you both.

Lori- My husband had just about everything you described. The trach, fibular free flap, facial scars and all. All in all he looks amazingly good for all the surgery to his face. The scars didn't take long to heal at all. Unfortunately he has lost alot of weight and still has the PEG tube. We are looking into dentures but he had alot of sores in his mouth from all the treatments he has had. Right now he is on a trial that does not cause mouth sores so we may be on the path for dentures soon. He has alot of trouble opening his mouth wide enough though. His leg looked awful at first but once the tissie settled back it's hardly noticeable. It looked like a shark bite at first but just a scar now. Good luck to both of you-this is a great place for support and advice.

Sue

Christine,
Thank you so much for your reply. Yes, 3 years ago he had a PEG tube. It stayed in until 5 months after his treatments ended. I am so glad he had that in, it really saved his life. At this point, the doctors are only talking about putting in a feeding tube through his nose, just for the duration of his hospital stay. I'm sure if he has chemo and radiation again, they will suggest the PEG again. Or if they don't, I will!

His chemo doctor has already said that he will for sure have some type of chemo again, but he is consulting with the radiation oncologist about the possibility of re-radiating. 3 years ago, he was told he could never have radiation again, so I don't know what that decision will be. Does it matter that back then, the radiation was to his tongue and right neck, and now the site would be his right cheek and possibly right jaw?? I'm not sure if that matters or not, but those beams are so precise it wouldn't be radiating the same exact places.

Yes, right now the new lesion is being called a Stage II, simply because of its size. Since they won't know for sure if the bone is involved until surgery, the stage may change after that. He had both PET and CT scans done last week. The only thing that showed up was the lesion in his cheek, so no mets anywhere else, thank God. I haven't read about Karen M's husband yet, but I sure will.

Your story gives me hope that they will get in there, and it will be only his cheek involved. Thank you so much for your kind words and advice. I will be coming here many times in the next weeks and months. The advice and support here is unmatched.

Lori

Sue,
Thank you so much for replying. I will go back and read your story with your husband from the beginning. I think it helps so much if you kind of know what to expect, even thought everyone's story is unique. I'm so glad your husbands scars healed nicely. My husband kind of wears his scars with pride, be was a little upset when his large neck incision healed so well it really can't be seen! It's funny, when he got his first scar, it was 2 months before the cancer, he had his hip replaced (In fact, if he hadn't had a hip replacement, the cancer wouldn't have been found at all--it was found during the routine physical before his hip operation!). Anyway, after the operation he acted upset about his scar and when the doctor asked him why he said "Well, now there's no way I can compete for Mr. Nude America!" The doctor got quite a chuckle out of that!

I wish you the best of luck with your husband's dentures. I totally understand what a trial that is! Ron lost all of his teeth prior to treatment 3 years ago, and wasn't fitted for dentures until 6 months later, after giving the mouth tissues time to completely heal. He never could wear the bottom plate, it was just too difficult to keep it in. He did wear the top plate, but usually only when I insisted on it. If it were up to him, he would never wear them at all, and on a daily basis, around the farm, he doesn't. I understand that this is MY hang-up, not his. I really try to realize that in the big picture, it is not a big deal at all, but I must admit, I do like to see my husband with teeth!!

I wish you and your husband continued good health and thank you for your words of encouragement. They are truly appreciated.
Lori

Lori:

Im glad Sue responded, she has experience with what you have described. There are several others here who have also gone thru same type of recurrance too. I guess Im one of the very few lucky ones with a relatively easy recurrance that was caught very quickly. I hope your husband's turns out to be like mine.

I always thought the same as you did abotu radiation. You do it once then thats it. Even though it was a different location this time, it probably still would be considered the same place due to it being the same side. Thats how my doc explained it to me, still would have gotten scatter radiation. I dont understand that much about it, sorry. There are several people here who have gotten radiated twice, seems its something that doctors are starting to do in some cases.

Keep posting any questions you have.

Hi Christine,
I'm not sure about re-radiating either. I guess we will have to wait until after the surgery when we will meet with the Oncology team again to find out if they will consider it. When your cheek lesion was removed, did they do a flap to fill it in? I have a hard time picturing just taking out a chunk of tissue there, it's kind of thin to begin with.
I feel like I did 3 years ago, too many questions, answers will come when they come. I think that's the hardest part. The days that you sit at home wondering what's going to happen. I'm so glad I found this forum! Hope you're doing well.
Thanks again,
Lori

Lori:

Its ok to ask questions, thats how you learn how to handle this. Thats exactly what makes OCF so great is cuz there are so many different types of oral cancer and so many senarios. There is bound to be a few who have experience in the same kind as you.

You are correct in saying that cheeks are thin. My 2nd cancer was caught very very early. In Jan my pet scan was all clear and April I had a sore in my mouth. That explains how my ENT was able to get the tumor out without doing any kind of reconstructive surgery. Im a little lopsided with my left side looking skinnier than my right, but its ok. I dont have any scars at all on my neck or face which is amazing. He just went in and scooped it out, he took a chunk about the size of a quarter, and he got it all with clear margins. Maybe it wasnt so bad cuz I compared it to doing chemo and radiation. Had a few complications afterwards, but thats just me being unlucky with my procedures. Hope your husbands goes as easy.

An update:
Surgery has been scheduled for September 30. We will meet with his "Chemo doc" on the 25th to discuss possible future treatments. Since he had Cisplatin 3 years ago, would that be considered again? Also, I know that Erbitux is now being used for Head and Neck Cancers. I remember reading about Erbitux 3 years ago and I asked about it, but at the time I was told that it wasn't "standard" chemo for Head and Neck cancers. I'm wondering if he would have a better chance if he got Erbitux this time. Anyone?
Thank you,
Lori

Sorry to hear this. It looks like this was caught early.
Erbitux has a different mechanism than cisplatin. It selectively targets a growth factor receptor.
It seems to be easier available these days, which makes sense it is a relatively new drug. I think it was approved for H&N cancer in 2006, either as combination with radiation or as a single drug. Also there have been studies using Erbitux together with traditional chemo therapy agents.

It may be possible to have IMRT again. Eve if you do not do this the possibility that is available is good.

M