On 1/6/2010 I had a biopsy that showed that I once again had SCC on the right lateral side of my tongue. The tumor was small (<2 CM) and was removed, but the margins were not very wide. My prior treatment is listed in my signature line.

I already had a PET scan which showed two things besides the obvious activity in my tongue: 1) Activity on the left side of my thyroid which is a know problem for me since at least 2005 - Hashimoto's thyroiditis (the most common thyroid disease in the US). 2) Small, but hypermetabolic left level 2 and level 3 cervical hypermetabolic lymphadenopathy, suspicious for regional metastatic disease. No evidence of right cervical hypermetabolic lymphadenopathy.

I then had a FNA of the lymph node which showed "negative for malignancy" and was termed "consistent with reactive lymph node". The FNA of the thyroid was also negative for malignancy and was "consistent with Hashimoto's thyroiditis". This is the 3rd FNA of the thyroid since 2005 with the same results and no treatment is recommended at this time.

I've had two opinions so far regarding treatment. I am considering going for a 3rd opinion.

The first was from my ENT who has treated me since 2005. His recommendation is to remove the right half of the mobile tongue with no reconstruction. He would also do a modified neck dissection on the left side, but leave the ride side alone. If the left nodes did shows signs of cancer after the neck dissection, they he would recommend RT on the left side.

I went for a second opinion at Fox Chase Cancer Center in Philadelphia, PA. I meet briefly with the RO and basically RT is out of the question for me since I've already had the max dose to the right side plus I've had such a bad reaction to it to begin with. I didn't meet at all the MO since chemo is not at option at this time. The surgeon also wants to remove the right half of my tongue (possibly more), but also wants to remove into the floor of my mouth and do reconstruction (free flap). He also wants to do a bilateral neck dissection. Additional treatment would be determined after the biopsy of the removed lymph nodes from the neck. He also felt I could get by with a naso-gastric tube while in the hospital (1 week) and would not need a trach. I'll be meeting with the reconstruction doctor and speech therapist on Monday.

I've read about many of the problems OCF members have had with the free flaps, and to be honest this part of option #2 really scares me. Also, based on my test results, I'm not sure a neck dissection is warranted (again concerned about the LT problems).

I have many questions, and here are a few to start:

Has anyone had half their tongue removed without reconstruction? If so, what problems do you have with speech and eating?

Has anyone had free flap surgery and did so without getting a peg tube?

If you had a free flap, how is your speech and eating now? How long did it take to relearn these functions?

Also, what additional questions should I ask my medical team?

Thanks!

Also, I want to publicly thank ChristineB, wilckdds (Jerry), Ray1971, Susan Lauria, suzanne98, mhupe (Margaret), and suemarie who have giving me moral support and guidance so far. Jerry even went above and beyond the call of duty and went with my husband and me to Fox Chase to meet with the surgeon.

Thank you all!

Susan

I'm so sorry that you have to deal with this again. My experience is totally different from yours, so I can't assist with your questions.

Wishing you all the best with your appointments

Karen

I had about 1/3 - 1/2 of my tongue removed without reconstruction in Oct 2008. I had issues with talking and eating for a while, but my tongue adjusted in a few weeks - months.

The 2nd surgery in Nov 2009 involved a cranial nerve which controls the movement of the back left of my tongue. This has caused more issues with talking and eating than the first surgery. Right now I'm still in treatment, so I am still having issues with tongue movement.

Overall though, I was told as long as they removed less than half of my tongue, it would be able to function normally without reconstruction. When I went into surgery in 2008 I was prepped for reconstruction, just in case the cancer had spread further than they thought. Luckily the reconstruction was not needed for me and my tongue went back to functioning pretty normally.

What a difficult decision. My experience of both tongue surgery without reconstruction and flap surgery is that the former is far easier than the latter. After my laser surgery in 2007 my tongue scarred down and was tethered but it didn't worry me much as long as I didn't look at it:) When the cancer recurred in scar tissue I had a much wider excision and a flap from my wrist. I had a trach and nose tube and neck dissection.

The various things combined made for a miserable 18 day hospital stay but at 63 I have bounced back amazingly well. I could speak intelligibly almost as soon as the trach was out. My speech is slightly slurred only because after 3 1/2 months the flap is still swollen. I can eat whatever I like but it's a bit of a struggle at times. As far as overall well-being goes, I feel very well - my scars have faded nicely.

All this is made easier for me because my previously operated on tongue was a bit of an obstacle too so I was used to a certain level of discomfort.

I was told it takes about 3 1/2 - 4 months to recover from the op. Because my flap is still swollen I'm behind schedule but if I get speech therapy soon I think I could go back to my relief (sub) teaching sometime in April ...

Sorry this has taken so long to express - less is more!

I meet with the reconstruction doctor on Tuesday, and he described the reconstruction aspect of the surgery and answered all my questions.

He has me almost convinced that the free flap is a good thing for me, but still not 100% convinced. They would use my forearm for the donor site. Traditionally they then cover the donor site with a graft from the thigh, so you have 3 areas that have to heal. He told me about a new procedure they use which involves cadaver skin (yes, donated from the deceased). This method involves two surgeries. The first is to implant the donated skin in my forearm to allow it to develop a blood supply, etc. This takes place 2 weeks before the main surgery. There are a number of advantages to this method, including fewer problems for the donor site. However, he has to check with my surgeon to see if waiting 2 weeks is OK and also if there would be enough tissue under this method.

Has anyone else had a free flap using cadaver skin? If so, did you have any problems with either the free flap or donor site?

Jen, thanks for your reply. I wish you the best with your treatment. It isn't an easy road that we travel.

Alpaca, you certainly have been through a lot also. Thanks for sharing your experiences.

Karen Rose, I'm glad you aren't facing what I am now, as you've had to face a lot more than I have.

I will keep you all in my prayers.

Susan

I'm not sure whether this would apply to you, but because the floor of the mouth is involved will they be anchoring the tongue flap down to act as the floor of the mouth and tongue? Quite often when they say free flap it is really misleading because it is not actually free, it is stuck down. That is what I have and so do a few other OCF members. Alot of surgeons don't seem to be very clear about that when they are giving their treatment plans.

My original flap was taken from my thigh.

Karen

Karen,

I will definitely add that to my list of questions for my doctor(s). I still have a lot to learn about free flaps, and I'm sure the whole process is very costly also! Thank God I have good insurance, but I still have to pay a portion of my treatment.

Thank you again for your input!

Karen,

A free flap is called that because it is not a flap that is slid over from an adjacent area and therefore maintains it's blood supply and nerve supply. This is called a sliding flap. As you know, a free flap is taken from another area of the body.

The name is misleading, but it has nothing to do with the area of the flap having the freedom to move.

Good luck tomorrow at JH, Susan.

Thanks Jerry.

I had "a nearly total hemiglossectomy", and had a radial forearm free flap reconstruction. My speech is pretty good. I have some speech defects speaking in languages other than English since they require more tongue involvement. English is very forgiving.

I had no peg either. I had NG tube for about 3 weeks (two of them while still in the hospital), and then managed without the tube. Not saying it was easy, but turned out to be manageable for me. I did lose quite a bit of weight though, but I'm pretty sure you'd lose weight even with peg tube. I eat pretty well now, and my only problems are stemming from lack of saliva (things like nuts, for example, are hard to clear out of your mouth if it's dry), but other than that I'm doing well in eating department.

The recovery process was a bit frustrating because I got so much better relatively quickly after surgery only to be knocked down hard by radiation. But now nearly 9 months after the end of treatment I don't have any major issues aside from dry mouth. My forearm is not pretty, but it looks infinitely better than before, and frankly, I don't care.

I'd go without the free flap -- The fewer cuts to your throat, the better, and you will get used to the modified tongue pretty quickly.

The free flap doesn't do anything except fill the space where the removed part of the tongue used to be. I don't see any improvement to your quality of life with a flap; in fact, my wrist donor site has nerve damage and often gives me some pain.

Yes, the free flap will be anchored to the floor of mouth and cuts have to be made to do the microsurgery to connect the new blood supply to the flap. On my second flap following my total glossectomy, the blood supply died so the flap died. Even with nothing there, I was able to talk, albeit not as well as before. Sadly, all the scarring from all the surgeries and the radiation have slowly closed down my trachea so I am unable to speak at all, despite having my vocal cords, and I am totally dependent on my tracheostomy tube for breathing.

In short, lots more work, more things to go wrong and not much to show for it when finished.

[quote=Susan2992]I meet with the reconstruction doctor on Tuesday, and he described the reconstruction aspect of the surgery and answered all my questions.

He has me almost convinced that the free flap is a good thing for me, but still not 100% convinced. They would use my forearm for the donor site. Traditionally they then cover the donor site with a graft from the thigh, so you have 3 areas that have to heal. [/quote]

Hi Susan,
I had the free flap as you describe in September 2006. Am happy to add more but was wondering if a descion has been made since you last posted on this thread?

Pete..It is good to see you post again

I went for a 3rd opinion at Johns Hopkins in Baltimore, MD, and got a totally different recommendation - one that I'm more comfortable with.

He first wants to do another PET scan first before any surgery to make a better determination on whether or not a neck dissection is needed. He felt like I did that a PET scan done 2 weeks after surgery can very likely be showing a false positive. And the FNA I had showed no evidence of cancer. So he wants a little more reason to justify a neck dissection before actually doing it. I need to wait until mid-March for the PET scan.

He said that my tongue is healing nicely (biopsy/surgery was on 1/6) and currently shows no visible evidence of cancer. However, he does recommend surgery, but not sure how much of the tongue he would need to take. He wants to do frozen sections during surgery and may only need to excise a small area or may need to take half as was recommended by the other doctors. So going into surgery I won't know how much of my tongue I'll have when I wake up.

Reconstruction may or may not be needed depending on how much of my tongue needs to be removed. Depending on how much is removed, he may just do a graft or if a lot is removed, then a free flap. Again, I will have a big surprise when I wake up.

So right now I'm on hold until the PET scan, and then a surgery date and plan will be set (sometime before end the of March). The one decision still up in the air is whether or not a neck dissection is need, and if needed, should it be one or both sides.

Pete, you echo my original surgeons opinions exactly as he doesn't feel I'll need the free flap (nor as extensive a surgery as opinion #2).

Thanks to everyone for your input. It seems that the free flap works fine for some, and others have problems. At this point I'm hoping I won't need one. The recovery time is a lot less without it.

I agree with the first and third assessments; keep your eye on the cancer ball and then apply the KISS principle. One problem with the flap is that they may need to remove more of tongue than otherwise. Also, a neck dissection may be required to hook up the blood supply for the flap. All best avoided if not needed.

Pete

I had the free flap 3 years ago to reconstruct about 1/3 of my tongue, and except for the scar on my wrist, no one notices anything; speech is normal, eating, swallowing normal. (Even the neck dissection scar "just looks like another wrinkle" my 10 year old granddaughter told me last year)

I was at UCLA, was in surgery about 9 hours, had a trach and a nasal tube for the week I was in the hospital; was talking and eating before I left, and both were removed before I left. Took pain med for about two days after, and was able to eat almost normally very soon after. Very unremarkable recovery - skin graft on thigh was slowest to heal, and probably the most uncomfortable.

I had weekly massages for a year after the surgery and still get every other week. I think the attention to the dissection area helped with the lymph swelling and scar tissue; My neck gets tired and is achy sometimes, but not much worse than before surgery. I find a spot once in a while that doesn't have full feeling, but everything is pretty much back to normal.

I know I'm very blessed to have had such an easy recovery. I was surrounded by family and friends and covered in prayer. I'm very thankful that there is even such a thing as tongue reconstruction!

All that said, I wouldn't look forward to having it done again! My kids tell me the first few days were worse than I remember - said I was a little goofy on my pain meds! I started talking as soon as I woke up - just wasn't very easy to understand for a few days.

Good luck with whatever treatment you decide on.

I am not sure how or where to ask my question so I am going to give it a try here. I was diagnosed with Mucoepidermoid Carcinoma Low grade in December 2008. I just celebrated my one year anniversary from surgery on March 26, 2010. I had a fibular free flap done and have suffered severe pain in my leg since. Has anyone else experienced this at all? I am still on pain medication daily and cannot even walk far distances because of it! Help guide me in the right direction please!

Terri,

Start a new topic in the Introduce Yourself Forum, otherwise you will probably not be found here byt those that can help you.

I had the repeat PET scan on 3/16 - the 'active' lymph nodes from the PET scan in January have quieted down, so neither my local doctor nor the doctor at Johns Hopkins feel a neck dissection is warranted at this time yippie! They definitely recommend careful monitoring of the lymph nodes in my neck via PET scan and physical exams to ensure nothing develops in the future, but for now they will leave my neck alone.

My surgery at Johns Hopkins is scheduled for 4/6. He will be doing frozen sections during surgery to ensure that all suspect tissue is removed, but he feels the surgery on my tongue will be minimal. He does not anticipate that I would need reconstruction, so no free flap (a big sigh of relief!). Although he said there is a small possibility I made need a graft (using my thigh as the donor site). The surgery will be 2 to 3 hours, and I would stay overnight.

This is a far cry from the surgery that was recommended at Fox Chase! The surgery they recommended would have taken 8-12 hours, 24 to 36 hours in ICU, 7 to 10 in the hospital, and 8 weeks recovery time. Plus I would need speech and swallow therapy and physical therapy afterwards. Not to mention the LT consequences and QOL issues caused by the surgery.

It sure seems like I got off lucky!

Thank you to all who responded with their experiences with a free flap.

Alleluia! Susan I am so happy to read your post.....doesn't sound real bad, I am not making light of it, just happy you won't have to have a flap , etc......And overnight, is even more awesome!

WOW - what a huge relief you must be feeling Susan. That is terrific news compared to some other advice that you have received.

Your experience over the last couple of months should send a very clear message to everyone how important it is to get at least a 2nd or 3rd opinion.


Karen

That is great news Susan and best wishes for your upcoming operation. It was great that you took the advise to get more opinions.
I was in such shock when I got the diagnosis that I just went along with everything that the doctors said. Had not found this site at that stage and did not even know where to go for another opinion.
Will be thinking of you on the 6th and looking out for your post.

Same here Gabe. If I knew then what I know now.....

Karen

Susan

CONGRATULATIONS on being persistent and getting multiple opinions. I did not comment before since I feel the consequences of my tongue surgery, free flap and neck disecction are not the norm. I had zero problems with the free flap, zero problems with the skin graft on the wrist and zero problems with the groin donor site yet I can no longer swallow at all (failed 4 MBS) and am on a feeding tube for life despite 9 months of swallowing therapy and even VitalStim. I'm glad you will avoid any such risks.
Again, good luck
charm

I had the repeat PET scan on 3/16 - the 'active' lymph nodes from the PET scan in January have quieted down, so neither my local doctor nor the doctor at Johns Hopkins feel a neck dissection is warranted at this time yippie! They definitely recommend careful monitoring of the lymph nodes in my neck via PET scan and physical exams to ensure nothing develops in the future, but for now they will leave my neck alone.

My surgery at Johns Hopkins is scheduled for 4/6. He will be doing frozen sections during surgery to ensure that all suspect tissue is removed, but he feels the surgery on my tongue will be minimal. He does not anticipate that I would need reconstruction, so no free flap (a big sigh of relief!). Although he said there is a small possibility I made need a graft (using my thigh as the donor site). The surgery will be 2 to 3 hours, and I would stay overnight.

This is a far cry from the surgery that was recommended at Fox Chase! The surgery they recommended would have taken 8-12 hours, 24 to 36 hours in ICU, 7 to 10 in the hospital, and 8 weeks recovery time. Plus I would need speech and swallow therapy and physical therapy afterwards. Not to mention the LT consequences and QOL issues caused by the surgery.

It sure seems like I got off lucky!

Thank you to all who responded with their experiences with a free flap.

Charm & Everyone Else,

I owe it to this forum to be persistent and to seek multiple opinions. The experiences shared by others and advise given here is priceless. Although I've had more than one doctor tell me that I ask too many questions, including two of the surgeons that wanted to do major surgery on my tongue. I now have a personal rule that no surgeon who feels I ask too many questions will ever operate on my tongue while I'm under general anesthesia - after all, he or she certainly would be in the position to limit the number of questions I could "ask" in the future!

I am also aware that everyone is different in their response to treatment. My path on this "cancer journey" has taken a few unexpected turns and my reaction to RT has been more severe than most. I am thrilled with the recommendation of the doctor at Johns Hopkins, but at the same time I'm being cautiously optimistic that this will "cure" me once and for all.

Thanks for being there - I'll let you know how the surgery goes!

Susan,
That is wonderful news. Looking at the hour you posted this, the euphoria must be keeping you awake. Here's hoping you are finally done with this and all future doctor visits give the same good news.

Take care,
Eileen

Hope your pain is subsiding by now and that you are starting to enjoy your new status.

Susan,

It is so great to read your good news! Congratulations and a big whew! I hope your recovery is swift.

Anita