In March of 2014, I went to Baylor Sammons Hospital in Dallas, TX with a diagnosed tumor at the right side base of the tongue. I had a biopsy and it was diagnosed as squamous cell carcinoma. It seemed like I had what many people were getting and that the treatment would be very straightforward-35 radiation treatments and 7 weeks of chemotherapy. I was told by the oncologist that this would definitely be cured with the treatment. I did get second opinions on the treatment options, BUT NEVER GOT A SECOND OPINION ON THE PATHOLOGY. It was never recommended by the doctors at Baylor to get a second opinion on that. It turned out to be Mucoepidermoid carcinoma and the tumor was not gone. I went to MD Anderson Cancer Center in Houston and a 13 hour surgery was done to remove half of my tongue and replace it with a flap from my arm. This was done on November 9th of 2014 and it seemed like it was a good job. I had a CT scan a week ago and the preliminary reading was good. However, the radiologist read it and found two lymph nodes on that the doctors now want to ultrasound and needle biopsy. Those nodes are on the left side of the neck. I have that biopsy scheduled for next Tuesday and am very anxious. I have tried to move the biopsy date to an earlier time, but they are extremely booked. Has anybody had this type of situation or one similar to it? This is my first post to the forum. I thank anybody for the help they could give.

Welcome to OCF! Im sorry to read about what you have already gone thru. Luckily you have now found our site. We will help you with info and support.

You are now being treated at one of the best comprehensive cancer centers (CCC) in the US. Waiting is the worst!!! Ive been in your shoes and its very difficult to focus on anything besides "what if...". Anxiety is not good for anyone, so do your very best to keep busy. By doing things that take lots of concentration it will help you to stay calm.

Tuesday is right around the corner. It will be about another week after the biopsy until you get the results. More waiting, UGH!!! We have a saying around here... " its not cancer until the biopsy says it is". Repeat this to yourself over and over until you believe it. Ive had many scares that turned out to be nothing. Hopefully this will be nothing serious and you can go on with your recovery and life.

Hang in there!!!

Hello JPT. I can relate to your story. First of all the waiting. It is very hard and all you can do is try to do things that you enjoy and that will take your mind off the possibilities.

I had two lymph nodes light up on a scan before last year's surgery. No cancer was present. I also know what you mean about second opinions on pathology results. Not for oral cancer but the ovarian cancer I had 20 years ago, it was only a retesting of the tissue that resulted in an accurate diagnosis. The second opinion doctor asked "his" pathologist to look at it again. This was my good luck. I don't think it is standard practice.

Waiting for test results ...hmmm. It's crazy but I've found that treating myself works. Shopping even. Really nice food. Learning something new. Writing down your feelings. If you have to wait a while after the biopsy, you might have time to see a counsellor.

Best wishes.

The nodes could simply be an infection or healing although cancer can cross the midline. Id tell them to go in and remove the nodes. I know a needle biopsy is a quick way of determining cancer but to me I'd say just remove them - I'm assuming the nodes on the other side have been removed. Hugs - I know it's terrifying. Ideally tongue cancer (oral tongue) is treated with surgery first this is why a ccc is always the best choice right out of the gate, but if you don't know to ask then you have to trust your dr. Knows what he's talking about.

Thank you to Christine B, Alpaca and Cheryld. Your words are very helpful as I go through this incredibly hard journey. One of the most frustrating things for me is that I am still on the feeding tube. I have made a lot of progress regarding swallowing. I went to the swallowing "boot camp" and now see a swallowing specialist three times a week. At first, I couldn't even swallow water and had to carry a spit cup wherever I went. I now primarily have problems if I can't get the type of food that I can swallow. I sure do miss those barbecued ribs that I used to have. I can eat things like bananas and yogurt and I am still working to broaden the type of foods that I can eat. I may get the esophageal stretch and am going to look into an appliance that my dentist recommended the other day. The other part of the issue with eating is that it is such a social event and I am working hard to keep connected even though I have to make special arrangements for my nutrition. I have gotten some information from the Oley Foundation and they have some very inspiring stories there.
You are right-it is very important that I keep myself as busy as possible so I avoid the depression that can come on when I am not busy. Thanks again and I will keep in touch.

Its always nice having another survivor join our group. We understand exactly where you are coming from. Being on a feeding tube is horrible, but it is a necessary tool for many patients. Im on one for life, myself. Its hard watching TV with all the delicious foods being advertised. Seems like everywhere you go, there is food and people making plans to go here or there to eat. Ive adapted to it but its not an easy situation at all.

The Oley Foundation can be very helpful. They have a great patient/donor exchange program. Ive used it both sending to others and receiving things myself. Im glad you have found them.

You still are in the recovery phase so you have a long way to go. Sounds to me like you have made quite alot of progress. Im sure you are doing much better than when you first finished rads. Keep pushing yourself on what is within your control... your intake. You will learn quickly I am a nag about this topic! Every single day until you hit the 2 year point, take in at least 2500 calories and 48-64 oz of water. Ask your doc about adding some high protein whey powder to your diet to help with your heeling. I would wait until after the test result come back and you are all clear before making any dietary changes, except to strive for hitting the previously mentioned numbers. Ive found that by having something to focus on and to work on helps to keep your mind busy. It works for me, maybe it will help you too.

Hang in there

JPT, you are right about the social side of eating and the need to stay connected. I struggle with it because my natural tendency is to be a bit shy so it's easy for me to say "I can't go to that because I can't eat without making a mess". Don't be like me! Christine gave some good advice a while back: cheesecake is easy to eat. If I go out to a cafe, I can sometimes have that. It's just the right consistency. Pity it is so sweet. If I'm out all day I'll sometimes have a McDonald's lime milkshake to keep hunger at bay until I get home. I am sooo sick of smoothies and they're very expensive at cafes. Favourite food at the mo is mashed mixed vegetables (yams, sweet potato, broccoli, cauliflower) with brown onion gravy and some cooked mushrooms with sour cream. But I have to have that at home!

Thanks again for the good advice and encouragement.

I will keep in touch since I think I have found a really good forum.

The feeding tube is hard I was blessed and not blessed in that I had one but couldn't use it so I was forced to consume all my nutrition by mouth. At the time it sucked but I had the tube removed 2 weeks after treatment completed because I had no use for it. I made protein shakes, loved puddings (rice) yogurt, soft foods... Scrambled eggs, mashed potatoes, soups, and drank a crap load of water to wash it down. I'm a vegetarian and don't do a lot of dairy so I would use almond or cashew milk as well the thicker it is - the more slippery it is - the easier it is to help slide the food down your throat! Good luck... Let us know about those nodes...

I had my biopsy today and, as suspected, it was positive for carcinoma. They will get the final reading by the end of the week. I also had a chest CT. I somewhat question the CT since I will probably need a PET scan sometime. The doctor will look at the scans and the biopsy report and give his opinion on what to do next.

Im very sorry for your bad news. I was hoping it wasnt a recurrence so soon after you just finished treatments. I would have questioned the CT scan as well. Didnt you just have one recently? Guess it doesnt really matter now, whats done is done.

Dont be surprised if your option is surgery as you just finished rads. Chemo used by itself is only used for palliative care.

Good luck with everything and please keep us posted.



PS...I sent you a private message (PM) when you first posted. Look next to the my stuff tab and click on the tiny flashing envelope. Please review the link Ive sent you and add a signature. This will greatly help us to help you. Thank you!

It must have been hard to have those fears confirmed. Now you are on your way to having a plan of action. Keep us posted. Many of us have had recurrences and know how it feels.

Wishing you well.

Sorry to hear the bad news. This is a unique place full of wonderful people and resources to help you get educated and support you through the treatments.

Good luck

Is there any chance that the cancer could only remain in the lymph nodes and that removsl of the nodes could achieve a cure? I really don't want any more of the tongue removed.

I'm thinking unless the tongue shows cancer it will just be the nodes. But it will be a bit harder recovery because you've been radiated. Tell them ASAP - none of This waiting crap - it's been confirmed you want it removed yesterday. I'm saying this because it sounds fairly aggressive. The next stop from the nodes is often the chest. At which point it's very hard to catch. I don't want to panic you - I want to empower you to push and make noise until the do something quickly. Hugs.. And sorry for the news.

Call every morning to see if there is a cancelation? Getting the biopsy done will bring you the answers you need, in the mean time ask for a xanax or something to reduce the anxiety if you need it.

You are right about nutrition, it'll help you recover faster. Scrambled eggs with cheese was one of the few things I could eat. Slimy food it the best, overcooked veggies work like asparagus, mushrooms too.

Hello again,
I went to MD Anderson for a biopsy of the two suspicious nodes on the left side of the neck and they were positive for mucoepidermoid carcinoma. I have since seen the chemo oncologist there and will see the radiologist and the surgeon next week. The plan, most probably, will be to do a dissection of the left neck (hopefully selective) and to get rid of the nodes. There probably will not be any radiation since I have had so much in early summer of 2014. The chemo doctor did not recommend chemo since chemo has already been done and the only way to cure this is to cut it out.
In addition, I have suffered a pathologic fracture of the right mandible and will have to get that taken care of after the nodes are removed. My fear is that surgery is extensive and I wonder how I will be after that. I have progressed pretty well on my swallowing, with the help of a wonderful speech therapist. However, I am still having to use the Peg tube for almost all my nutrition.
I sometimes have days where I have trouble getting out of bed-like today- because of the anxiety and depression that accompanies this. It is particularly difficult because of the fact that my cancer was misdiagnosed and the treatment should have been different and I might have had less long term complications like difficulty swallowing and some changes in my speech. "What if" serves absolutely no purpose, however. What really is difficult is that sometimes I feel like this is too much of a struggle physically and mentally and it is hard to keep going. I am scared of dieing and sometimes I feel scared of living.
I do feel this forum does allow me to vent with people in similar situations. I am not sure how to put my specifics on the bottom of my posts, but if you see my first post, you can see most of my specifics. I will try to put my specifics on the bottom of my posts so that they will show up for everyone on each one of my posts.
Thanks for your help.

JPT68,

I'm sorry to hear of the cancer confirmation, but happy to hear you are at MDA. I don't know if there is anything I can say that is helpful, but for myself, I took one day at a time, even each day was gauged from meal to meal at times, listened to music, set small goals some of which seemed silly, trivial, ordinary, but meant a lot to me or just stared at the ceiling as I was bed confined for a year. Maybe speaking with a counselor is helpful. I had one in the nursing home, I thought was free, until I was billed, but talking with someone does help, and ACS, other organizations as well, pair you up with a sponsor that went through something similar to speak with, if that is possible, and discussing anything here as you noted. There are also monthly SPOHNC meetings at various locations in the U.S., and wouldn't doubt MDA has one or their own HNC support group.

I've been down the road where I have trouble getting out of bed, don't want to do anything, even to this date, and if wasn't for my doctor visits I wouldn't, but I have to admit you should do some type of activity, like light walking, if approved and as advised by your doctors, and be in shape for surgery, which helps in recovery, and survivorship/QOL as they now term. They may suggest PT somewhere down the line, even before surgery, and recommend that too.

Best wishes, and thank you for updating your post.

Thanks Paul B,
I really apreciate your quick response. I think the thing that bothers me the most is still being on the feeding tube. It also is tough since I think there is a possibilty this might not be the case if they had diagnosed it correctly from the beginning. Mucoepidermoid carcinoma responds best to surgery. However, thinking like that is useless and is really unhealthy for me psychologically. As my counselor says, "you can't go down the road you didn't travel". I am also fearful of my upcoming PET scan and probable surgery (surgeries). You are right about setting goals for yourself, even if they are small ones.
Thanks, John
It sounds like you have had a battle also.

John,

My treatments(s) had a more unusual path, circumstances, than most, like yourself. I had two peg tubes, the first was without my knowledge when in ICU losing over 110 pounds from cancer cachexia, and only on IV for several months. Then when I was finally released 6 months later, I had it removed after a clear PET/CT, which everyone was amazed with no further treatment other then chemo 8 months earlier. But I had a recurrence a month or two later, and already had compromised swallowing, and trismus, that a Peg tube was recommended for radiation. My oncologist said would not be able to tolerate chemo. I kept it for four years though 10 more radiation, chemo and surgeries, some were tube dependent, and I finally had it taken out or say yanked out, two weeks ago, approved by my doctors, SLP, after I was free of cancer for a year as I have had persistent cancer the past 5 years,10 months.

I tell you this to never lose hope or give up. The body is amazing in it's recovery, and was about to write myself off several times, but after waking up each day, but that's only half the story, I had some hope, and basically able to eat most foods now with a mechanical soft diet, due to no teeth, otherwise I would be eating pizza, but I whip up all kind if foods I can eat, and enjoy.

Best wishes!

Im so sorry that you are facing further treatment for MC. It certainly sounds like you have had your share of ups and downs. Im very sorry you are struggling with this mentally. We are always here to listen. We understand what you are facing, we have been thru similar things ourselves. Im glad you are seeing a therapist. Its very common for OC patients (and even many caregivers too) to have a need for a therapist, maybe even anxiety meds. Its a traumatic experience being diagnosed with a serious illness. That event is something not one of us will ever forget.

I understand exactly how you feel. After 3 rounds of OC, Im now disfigured and using a feeding tube for life. I have quite a few really bad days where Im so sick I can barely walk or talk. This usually ends with a trip to the ER. Being disfigured in a society where everyone focuses on appearances, being a woman who is missing half her lower jaw sticks out like a sore thumb. Ive handled this very well and after 6 years I have a productive, happy life.

If I can overcome my obstacles, I have faith you can get past this too. Try your very best to focus only on things within your control and avoid the "what if's" like the plague. Staying very busy will help keep your mind tied up which keeps you from worrying too much. Nobody needs any extra anxiety, especially when facing an upcoming major surgery.

Hang in there!!! We are all in this together. You can lean on us to help get you thru what you are facing.


PS... Ive sent you directions on how to add your signature. Click in the tiny flashing envelope next to the My Stuff tab which is near the middle of the top of the page.

Thanks Paul,
I just wonder if I can be as strong as you and some of the other people that are on this forum.
The problem with my swallowing is that I had to have more than half my tongue removed and the tongue is so important to swallowing. Combine this with my 70 gray radiation. I have some signs of aspiration on my chest CT.

You're stronger then you already know, and if I could have ran away, I would have! Don't think I'm strong or positive, I'm more realistic, and I say just get me through however which way I can, even if it's cursing and kicking along the way. My oncologist once told me, it's not a matter of what has happened or can happen that matters, but being able to pull through when it does, that matters most, and did.

Concentrate on yourslf, and moment, although helping others has helped me, in addition too, educating myself to this disease. I had oropharyngeal cancer in the tonsil, somewhat different than oral, had 70Gy bilateral radiation once, ipsilateral 4x totaling over 192Gy to the same area in my neck, aspirational pneumonia several times. was on a respirator too, and all cleared up. It's not something to ingnore either, and listen to your doctors.

Thanks Paul,
I will keep in touch. I am fortunate in that I have a wonderful wife and family as well as friends that care. Sometimes I keep going because of them.

I just got back from M. D. Anderson and it looks like I am having surgery to take out all the lymph nodes on the left side. They will then do a flap to cover the area operated on with a flap from the chest. In addition, I am having a msndibulectomy on the right side to remove all the dead bone that has occurred from the radiation I received. I have also now developed a malocclusion that cannot be fixed because putting in a fibula flap would be too difficult due, probably, to the fact that I already have a flap there that replaced half my tongue. I am still working on my swallowing but I have developed some ground glass opacities seen on the CT of yhe chest. I have not developed aspiration pneumonia. The surgery will be about four to five hours. I am still working on my swallowing, but I am scared that I will not be able to get rid of the feeding tube. This is a big quality of life issue for me, since I enjoy going out to dinner with my wife and travel that we do. I wanted to keep everyone informed and get some advice from all.

Also, I am not sure how to update the info that everyone has describing the individual's condition and the treatments and responses to treatment they have received. This is the abbreviations and info on the bottom.

Im sorry you have to go thru such a major surgery. Ive had a mandibulectomy (thats one word I never wanted to know how to spell much less pronounce) in 2009. Its a big surgery, mine was 10+ hours. Its not easy but I have faith if I can get thru it you can too. Expect to stay in the hospital for at least 1 or 2 weeks. Recovery with this type of very involved surgery can be a long road. Make sure your doctor writes prescriptions for 2 different pain meds while you are hospitalized. This way you can alternate between them instead of having to wait for the right time to take your next dose. I had significant pain when I had my mandibulectomy, lots of stitches, staples and skin graphs all had me feeling like I was run over by a truck (and it backed up and hit me again and again). In some ways, your mandibulectomy doesnt sound as involved as mine was so hopefully you wont be hurting too much.

As far as eating goes, that is very individualized. Some patients cant ever eat properly after surgery or radiation while others have been thru OC multiple times with some major impacting treatments can manage fairly well. To me, I feel the eating ability also takes some determination which you have. I hope after your recovery you will be able to enjoy dinners out with your wife again. The most important thing is to eliminate the cancer, after that everything else will fall into place. Collateral damage can wreck havoc on a survivor but in time everything is manageable.

Wishing you all the very best with everything.


PS...Check your private messages. Ive resent the link to the thread that teaches you how to make a signature and navigate the forum.

Thanks Christine (I think),
Was your mandibulectomy combined with a free flap reconstruction? They do not plan on reconstruction. I imagine that is because I have had a free flap reconstruction there for my hemiglossectomy. The plastic surgeon-Dr. Garvey from M. D. Anderson thinks that would be too "heroic" and that the downside risks are too great and would leave me with an inability to open my mouth hardly at all. Have you come across anyone who has had a mandibulectomy such as mine without free flap reconstruction? What they want to do is to cut out only the dead bone and stop when the bone is healthy. It is being represented that this is to be to about the corner of the mouth, although they are not sure. I only have the OR for about 5 hours and that includes a left side selective dissection to get rid of the nodes in my left neck. That will be accompanied by intraoperative radiation treatment and two weeks later 23 radiation treatments measuring 46 gray. One year ago, I had 70 gray directed at the tumor and lymph nodes that were on the right
side. Thanks for your advice and I will update my history soon.

JPT68, luckily for me my tongue was not involved in my surgery, it was primarily my L jaw. I did have tissue moved from my wrist to my jaw area.

As you will notice, every patient/survivor here is slightly different. No two situations are exactly alike, everyone's case is unique which makes it very difficult to compare. The doctor can always tweak your surgery down the road if any reconstruction would be needed. I understand the apprehension with the upcoming surgery. Its scary going into this unknown territory. Do your best to stay busy to keep from worrying too much. As much as you can focus on whats controllable in your life and avoid the "what if's" at any cost.

Best wishes!


PS... Im looking forward to seeing your signature. I had forgotten about your previous rads when I replied yesterday.

JPT68,

I'm sorry to hear you're having extensive surgery, and understand your concerns. I'm glad the doctors feel they can get this cancer, otherwise they wouldn't be doing it, so that's a positive sign, plus being at the top cancer center in the country.

I had intraoperative radiation, IORT, twice to the same left neck, once in 2012 was with a pec flap to protect the carotid artery after the neck muscle was removed in 2011, and in order to have more radiation, which IORT was followed by IMRT, and Proton Therapy in 2013. The surgeries were about the same duration, required the ENT and Radition Oncologist, support staff in the OR, shielded room, but the boost dose radiation wasn't for another month I guess due to healing from prior radiation to the same area.

Good luck with everything.

Thanks Paul B,
I am really struggling with the knowledge that because I didn't get a second opinion, I have had to go through more than I needed to and that I now have complications which I might not have had. My correct diagnosis is mucoepidermoid carcinoma instead of the squamous cell carcinoma that it was diagnosed as. Mucoepidermoid carcinoma does not respond to radiation and chemo the way the squamous cell carcinoma does and at the end of the treatment, the tumor was still there and they called and said Sorry, we have not seen this in 500 cases. I am in the process of formulating my signature.

Christine and everyone else,
M.D. Anderson is planning on removing the left neck nodes with chest flap. Also, removing the dead bone on the right(as little as they can). They do not plan any reconstruction on the right. Have you heard of this? My questions are numerous. I have pathologic fracture and pain from ORN on the right, as well as malocclusion.

JPT, yes I think Ive seen similar situations discussed here over the years. Every patient has slightly different circumstances so their treatment plan can vary from someone who appears to have the same thing going on. From saying there is no reconstruction planned means to me that the doctor plans on not removing too much so it wouldnt be necessary. Any reconstruction can always be completed down the road if something needs to be tweaked.

As far as the pain is concerned, talk to your doctors as soon as you can. Nobody should have to suffer. Ive had some minor ORN myself and know how much mine hurt. Hopefully the doctor will prescribe you something to manage the pain soon.

Hang in there!

Hi there hopefully they are moving quickly on this surgery. Did they say anything about your chest status? Ground glass like opacities? I'd be asking what they think it is.

Christine is right they can do reconstruction at a later date once everything heals. It sucks that you have to go through more rads and surgery but surgery should get most of it and the rads should finish it off.

Regarding the second opinion not sought, put it behind you - look forward. You are at a top hospital take that to heart. They are looking to cure you... take that to heart as well and hold onto your hope and joy. cancer can be a bitch - it will steal whatever you let it steal. Refuse to give it more than it deserves - which is a swift kick in the butt.
Hugs to you.

Thanks Christine and Cheryl,
Your words are very inspiring.
The opacities are due to aspiration as I have fought very hard to resume swallowing. My surgery is on Monday. The chest appears clear of any cancer on CT and PET.

JPT68, please consider drinking thickened fluids for the time being so that you don't get aspiration pneumonia repeatedly. You can get a can of Thicken Up from the pharmacy and put it into whatever you are drinking. It helps to prevent aspiration.

Good luck on Monday with your surgery. I will say a prayer for you. Denise

Thanks Gloria and Denise
John

Good luck with surgery Monday, John!

So glad to hear the chest is clear... Hugs and blessings that all goes well on Monday!

Thanks everybody for your posts.
I had the surgery at MD Anderson 9/28/2015-they did a neck dissection on the left side with a chest flap. I didn't think I had that much chest muscle but the surgeon said I did. The surgery was about 5 and 1/2 hours. The surgeon wanted to do a mandibulectomy on the right side because of ORN in the right posterior mandible. However, I expressed some questions about the surgery and he did not want to do the mandibulectomy because of my ambivalence. I am not sure about the mandibulectomy. The plastic surgeon did not want to do a reconstruction of the fibula to the right side of the jaw because it would be "too heroic". I guess that is because of the surgery and radiation I had prior-70 gray, hemiglossectomy with a right wrist flap, right neck dissection. In the left neck dissection, 27 nodes were taken out. One of the nodes was cancerous with slight extracapsular spread. They are ready to do 23 radiation treatments. They did 12 gray of intraoperative radiation. The total will be 46 Gray of radiation. I am not looking forward to having more radiation, but I guess this "cleans out" the region where there might be some "worrisome" nodes.

I hit submit before I proofread the above post, so I hope it didn't get too confusing. My questions are the following:
I am experiencing a little bit more difficulty speaking-it is weaker and more "gravelly". I am hoping this is just temporary due to the surgery and radiation. Anyone experienced this and does it come back?
Has anyone else had the radiation and chemo 70 gray before the hemiglossectomy, flap reconstruction and neck dissection? This may be called a salvage surgery.
I have ORN of the right jaw and fracture and they want to just take the dead bone out but no reconstruction right now. Anybody experienced with this?
I was initially diagnosed with SCC and, after all the radiation and chemo and the tumor was not gone, they realized they misdiagnosed the tumor. It was mucoepidermoid carcinoma. Any one else had this?

HI there - there are a few people here who've had salvage surgery. And others who've had issues with ORN. and yes... I've heard of that cancer here as well...

Someone... hopefully will be along soon to answer you. If not look up some of the key words...

ORN,
salvage surgery
and Mucoepodermoid cancer

and see who and what pops up. Maybe contact them directly?

hugs and best of luck.