Hi - my husband, age 57, was diagnosed in March with floor of mouth cancer. It had invaded his mandible, and by the time we were able to get surgery scheduled, a small amount was also found on his tongue. The mandible had to be removed all the way up to the "L" shape section on both sides.

He had a modified radical neck discetion, and reconstructive surgery on the same day as the removal of the cancer. We were told by the docs that there was a 5% chance that the reconstructive surgery would not be successful and we won the lottery on this.

The fibular flap failed. The blood flow would go in, but not go out. After 4 days of waiting to see if it would correct itself, the docs went in and removed the tissue (leaving the bone) and did a pec flap. 14 days later he was in the hospital with an infection from a fistula. The tissue was OK, but the bone, at the chin area, started to deteriorate.

He has been on an NG tube since May 21 (surgery date) and is scheduled to have a PEG tube put in on Aug. 7. His six weeks of radiation are due to start on July 31st.

The surgeon wants to do another free flap after radiation. The radiologist didn't want to do radiation treatment at first because of the issue with his bone, but radiation can not wait any longer.

I guess my question is -- What is going to happen next? My husband has to keep a bandage over his chin because there is always fluid leakage. This leakage started when the infection set in and has not stopped, even though the infection has cleared up.

The radiologist was worried about another infection and the problem of having to stop and restart treatment.

Has anything like this happened to anyone else?

What happens when another free flap is done? What happens with the pectoral muscle that was already cut to make a flap? Where would they take another free flap? What are that chances that a 2nd free flap would fail?

We have a reconstructive surgeon that does not communicate well at all. At my husband's last appointment, when discussing the bone problem, the surgeon only said to him "we can fix that". It was later, when we saw the Radiologist that we learned that the surgeon's idea of "fixing" was to do another free flap. We were floored -- we thought it would be a fix -- not a redo.

Overall, my husband is in very good health (excpet for the cancer). His diagnosis was Floor of Mouth SCC - T4N2M0.

He had 70 lymph nodes removed from levels I, II and III. Seven of those were positive (both sides of neck affected), but the Head & Neck Surgeon said he would not need Chemo. That is one other thing I didn't quite understand.

Karen:

Welcome to OCF. Im sorry you have to go thru this. There are many people here who have been thru this type of procedure who will answer your questions. Im sorry that I dont have experience in this to help you.

Is your husband being treated at a CCC? Does he have just the radiation oncologist or also a medical oncologist? Chemo works in conjunction with the radiation. Most people here including myself have had chemo along with radiation to get the best results. I also would be concerned that you were told by a surgeon that he doesnt need chemo.

It sounds like your husband is going thru heck right now. When talking to the doctors its a good idea to take a notepad to write down questions and their answers, taking someone else along helps too.

Karen
where are you getting treatment. Send me a PM.

I started IMRT twice, once they inserted the PEG tube they found another suspicious area and we decided to open up the radiation filed. If possible you want to start with radiation as soon as you can.

Did they get clean margins?
Since they are doing radiation it seems strange not to support this by concurrent chemo therapy. Perhaps there are other risk factors? Chemo is definitely putting the immune system in the toilet for a while, maybe they are worried about infection. You might want to discuss this with your RO as well.

M

Hi Christine,

I am not sure what a CCC is, but my husband's surgeons are at Emory in Atlanta (both his Head & Neck Surgeon and Reconstructive Surgeon). They both have some of the best credentials, and yes, I do tend to ask a LOT of questions. I even made an appointment with his Head and Neck Surgeon prior to his first surgery just for the purpose of asking questions. It is because of their great credentials, as well as my lack of knowledge, that I get confused when thier treatment plan does not follow standard protocol.

However, most of the difficulties have been with the reconstrution so far, and as I mentioned, his reconstructive surgeon does not know how to talk to people. In fact, right after the 2nd surgery when he did the pec flap, he came to the waiting room to tell us how the surgery went and what was done, and the fact that the bone was no longer "vascularized". I asked him how this was going to effect the radiation treatements. His comment was "everything will be more difficult, but it will get him thru the next year."

My jaw dropped and I couldn't think of what else to ask. His wording gave me such a jolt - as if we only needed to get him thru one more year. I am sure that isn't what he meant, but that is how it came out.

My husband also has a Radiation oncologist, but when I asked him if he does chemo, he said no, only radiation therapy. This Radiation oncologist is not at Emory, but at a good medcial facility in Gwinnett County Georgia that has some really state of the art equipment.

So, so far we have seen - Family Doc, ENT, Head & Neck Surgeon, Plastic Surgeon, Radiation Oncologist, Gastro Doc (for Peg tube) and we may still need another Oncologist for the Chemo (if the docs decide to do that).

The Radiation doc did want to sent him for a consult and work up to decide on Chemo, but after he spoke to the Head and Neck Surgeon, he changed his mind. That is why things get confusing. Even the doc's can't seem to agree.

Today, my husband has gone for another scan to see how things are going before starting radiation tomorrow. I know this will put his mind at ease a little bit about the status of the bone. The discharge the last few days had increased somewhat, but there does not seem to be any infection.

Karen:

CCC is Comprehensive Cancer Center

That is where the whole team of doctors are working together for your husband. I have 9 people on my 'team' which includes a nutritionist and a speech therapist and all the other doctors.

You will find so much info on here and answers to your questions. Some of the info can be scary as this is such an awful disease. Just remember everybody is different with how they react to treatment and healing.

Marcus,

I just posted in response to Christine most of the answers to your questions.

The only thing that was not in that post was the margins. Yes, the Head & Neck Surgeon was able to get clear margins.

Your thoughts about not doing chemo because of infection risk are quite valid at this point, however, the Head and Neck Surgeon told me just 2 days after the initial surgery that he would only need rads, and no chemo. Infection issues were not even in play at that point.

My husband said the docs are telling him it is because the cancer has not metastized. I thought any lymph node involvement was considered reason for chemo.

I know we should have started rads about 3 weeks ago, but the infection really but a stop to that. He was in the hospital on IV antibiotics for 5 days and on oral antibiotics for 14 days after that, so everything got pushed back.

Karen:

I had stage 1 oral cancer in two different spots in my mouth. I also unfortunately ended up with a recurrance just recently, it was also stage 1. The cancer never got to my lymph nodes and I had chemo. My understanding is that radiation is done once, but recently I have been seeing people here doing it again in rare cases. Chemo alone with this type of cancer doesnt work so well. Radiation with chemo treatment plan will make the radiation work better. Thats what was explained to me.

Hi Christine,

I guess I have had to be my husband's CCC, trying to coordinate everything. I thought that by going to Emory we were going to get something like that, especially when they wouldn't even consider operating until his tests were reviewed and disccussed by the Tumor Board. But that hasn't happened. We have found that each and every doc is afraid to step on the others "turf".

The Head and Neck Surgeon found the Fistula (which caused the infection) on a Thursday and said "you need to see the Plastic Surgeon as soon as possible". We weren't able to get in to see him until the following Tuesday, but by Sunday, my husband was admitted to Emory with an infection.

At the last appointment with the Plastic Surgeon, where he told my husband he wanted to "fix" the bone, he also told Chris (it's about time I gave my husband a name - huh) that he needed to see the Head and Neck surgeon before he would consider operating. You would think they would talk to one another instead of having to wait and get appointments and duplicate everything.

I have had to push the docs to get orders for rehab. So far they have only ordered the shoulder rehab and that is after we asked. There has been no rehab for speech or swallowing. He has had to learn that on his own. Chris pushes himself to take 8 cans of protien formula each day thru the NG tube (it takes 90 minutes for 2 cans to drip thru). This takes care of his nutrition and he has learned how to swallow milkshakes, which he adds protien to, and he was excited the other day when he finished an entire can of tomato soup.

Our last problem was when the Radiologist said he didn't want to start the radiation until we say the Plastic surgeon (whom Chris had just seen the week before). We lost it at that appointment. I think that doc knew we were about to just give up because he stopped everything and got on the phone with both surgeons to coordinate while we waited in his office.

I should have known what to expect when I couldn't even get the docs to remove the catheter at the hospital. There was a point where it was obvioulsy no longer needed, but each team of docs that came into his room said that had to be done by the other team. I got so frustrated. Finally the "big cheese" doc came in. You wouldn't think that it would take a Head and Neck Surgeon to remove a catheter. I couldn't believe how everyone kept passing the buck on something so simple.

OK - I'm rambling now -- sorry. I hope it makes others on this post feel better about their quality of care.

Christine,

Sorry to hear that you had a reoccurance. While I certainly expect that to happen with Chris, since it had already agressively spread and we have had so many delays, it would be so much harder with Stage I, when you think you were lucky enough to get it in time, to have it come back.

The rads with chemo was exactly what I had read in most of the literature as being the best treatment option. That is why I finally decided to post to this web site, to see if I wasn't mistaken from any medical standpoint or if the docs just don't think adding chemo will make a difference at this point in his cancer. Doc's seem to have a way of saying one thing while thinking another. I have asked very pointed questions and recieved vague and generalized responses. I know they don't want to be negative in any way, I just wish they would be more factual.

I was a Stage IV with nodal involvement (no ND) and I was told chemo was an option but I should opt for it so I did. I can't understand why your RO has said no chemo to begin with either. I would continue to ask why or why not.