My surgery is scheduled for Thursday, 1/16. I will be having a complete glossectomy and dissection of the right side of my neck. The nodes on the left side have already been removed.

I met with the surgeon today who is going to be doing the reconstruction. This was the first time I have met with this person. I was very pleased with our conversation, and he made me instantly comfortable. He was very straightforward in explaining the procedure and the decisions that he might need to make along the way.

From his reading of the PET scan, he said the tumor was close to the larnyx. Depending on the exact involvement, he may have to shave some tissue off of the larnyx. If he needs to take too much, he said that it could impair my swallowing, so I need to make a choice in advance. Basically, the choice in that case is to a) keep the larynx to preserve speech but be unable to take food by mouth or b) remove the larnyx and be able to eat, but loose the ability to speak more or less normally. The surgeon emphasized that there are ways to articulate sound without a larnyx and be understood.

I have been thinking about it this afternoon and have decided that I would rather have my larnyx removed if it came down to a choice between eating and talking. Never eating by mouth would be pretty devastating to me. I hate to loose my larnyx, but I think I could deal better with an alternate means of speech than I could with a life of not eating by mouth.

The most important thing he said was that he's confident (within the uncertainty inherent in cancer) that I have a good shot at successful treatment this time around. He believes they can get it all with the surgery. It's very likely that I will then need to go through radiation + chemo. I really hate to go through that again, but I really like being alive, so it will be worth it.

As for the reconstruction itself, he will be take tissue from my thigh for the reconstruction of the tongue. If they tumor has involved my jaw, it's possible they will need to take some bone from my shin to do a reconstruction of the jaw.

So, here I am waiting for the surgery. Though I am terrified, it's good to have everything lined and understand what is going to be happening. I still can't believe I had this stupid recurrence, but it happened and there is nothing to do but move forward. I am confident in my surgical team. Life is going to change more this second time around, but I adapted the first time and will adapt again.

Hi Roger, sounds like a good plan.
Kris had a total laryngectomy with his Glossectomy as the epiglottis was involved. Leaving the larynx would have meant a life time of aspirating, even saliva.
Trust in your plan and surgeon. You will be okay.
When you feel up to it let us know how the surgery went. Thinking of you.
Tammy

Roger C.

You did your research, know the options, have set surgery plans, date, and most of all have trust in your doctors. I wish the best for your surgery, and you will be in my thoughts. Like you said, you've did this before, and will do it again! Take care, and thanks for updating.

Roger, a lot of us are watching your thread, waiting hopeful for good surgery results and to hear from you again after.

Stay strong,

Tony

Best of luck hope everything goes amazingly well.

Thank you all for your kind wishes and support. I will post back with progress when I have my wits about me again.

Tammy, your husband Kris's experience with the laryngectomy makes the thought of it easier for me if it has to happen. The eating advantages are obvious without the fear of aspiration, and it sounds like he is able to communicate fine. I hope I can keep my larnyx, but if I can't I have Kris as a role model for a good recovery.

Hang in there, Roger!

Its amazing the things we can adjust to isnt it? I greatly admire your upbeat attitude and how easily you are taking this in stride.

Hoping your surgery is a success and you have a speedy and painless recovery. Dont be afraid to be your own advocate and speak up if you need something. Dont be afraid to ask for the pain meds. Having a patient hurt is not helpful to their recovery at all, it makes it much harder to bounce back when you hurt.

Im not sure what your speaking ability will be but if you will have a trach, ask specifically for a possey muir valve trach. The possey muir valve trach allows the patient to talk easily without having to do anything special.

Wishing you all the very best with everything! We are all in your corner cheering you on. Please post when you are able or maybe you could have a relative provide an update for us. We all worry about each other when one of us goes for a major surgery.

Thank you very much Christine! Believe me, I have plenty of moments of despair, but I am doing my best to face the situation bravely. In a few days all detectable bits of this horrible thing will be out of my body. That is something to look forward to. Of course there will be rads+chemo down the line, but I will worry about that when it gets here. In the mean time, I will shamelessly allow my wonderful family to treat me like a king as I recover from surgery.

The first time around, I was amazed at how painless the recovery was. The team at the hospital did a great job of managing my pain. I am hoping for a similar experience this time around, though the surgery is of course more extensive. I'll be sure to make it known if I am having pain.

Thanks for the tip on the trach. The first time around the trach did not have any sort of valve. When I got to speaking, I had to cover it with my finger. After a while I was able to cap it off during the day so speaking was easy, and then the wonderful day finally came when it was removed altogether.

Thanks again for your kind wishes and support. I'll be sure to post when I can or get my daughter to do so for me.

I am alive! Complete glossectomy. Clean margins. In surgery 12 hours. They saved my larynx. They are confident they got all the cancer. Right neck dissection removed all nodes, many of which were involved. Chemo will probably be started in a month. No bone involvement.

Congratuations on a successful surgery! Rest up!

Yay Roger. Really good news on the larynx, it will make communication so much easier. Good to hear you at alive and well. Keep us posted.
Tammy

Roger, congrats on a successful surgery! Best wishes with a speedy, painfree recovery.

So glad they saved the larynx!!!! I assume the rebuilt your tongue which is terrific!!! hopefully you'll be sprung soon and on the road to a full recovery.

hugs!

Roger, congratulations. You're a hero.

Thank you all! Yes, tongue was rebuilt with thigh tissue. Thigh is of course what hurts the most. I understand it was a pretty sophisticated job with a lot of nerve rewiring, but I don't know the details. It feels pretty "normal" but I am not trying to do anything with it.

Time for more rest!

A lot of breathing problems until yesterday. Tachycardia. Had some fluids and tests. Doing better today. Talk of possibly coming home tomorrow.

Woot!!! sprung! Hopefully you will get home and begin to heal. Hugs

Coming home today! Doctors are pleased with progress. What an ordeal, but at least I will be at home. So tired of being in the hospital, though it is a very nice one.

I am settled in nicely at home and feeling a little better each day. I expect to begin chemo in a couple of weeks, so the feeling good part will go out the window. I will probably also have another round of radiation. Nothing firm yet. I expect to hear next steps in a couple of weeks.

The surgery required was much more extensive than the PET scan lead the team to believe. In the short time since the PET scan, many more lymph nodes became involved. The tumor had grown from my tongue into my right cheek. Fortunately, there was still no bone involvement. I was in surgery over 15 hours. The surgeons were meticulous both with removing the tumor and with the reconstruction. They were very pleased - achieving clean margins throughout are are confident they removed the entire tumor.

My wife said she had a conversation with the surgeon who did the reconstruction about eating. The surgeon said I would not be able to be able to eat dry things like white meat chicken but would probably be able to eat dark meat. This was hugely encouraging. I was picturing blender everything, so entertaining the thought of solid food with limitations was beyond exciting. I know it will be some work to get there. I understand the surgeon spent a lot of time wiring up nerves to give my tongue some mobility.

I have said just as couple of words with my family and managed to make myself understood. A long way to go with speech too, but I can feel how it will be possible.

Roger,
Glad you got through surgery well and resting at home. Chemo and rads are the typical course of action and you know the drill.

Your signature does not indicate HPV status. For some reason, it seems like your cancer is not HPV+, is that right?

Thanks
don

Hi Don,

It is HPV 16+. Signature updated.

Roger

Roger,

How you feeling now. Mine was on Jan 20, and feel better bow.

Hi neversmoke,

Thanks for asking! I am glad you are feeling better. I am not bouncing back quite as fast as I did after the first round, but am feeling better all the time. It's hard to believe I've already been home for a week!

I had an appointment with the surgeon on Friday. He said I am doing great. He removed the staples from my face. Some of them really got my attention as he removed them, but most came out quickly and painlessly.

My biggest challenge is sleeping. Sometimes I am fine, but other times I can't quite attain a position that is comfortable and allows me to breathe easily. Then, about the time I am sleeping well I will wake up with a coughing fit. It is improving with more good stretches happening, but it is a real drag. I have tried heat and moisture exchangers on the trach. They work but almost make it too moist with lots of very distracting gurgling and bubbling. I have a humidifier running full bore all the time so the room air is pretty moist.

More information than you wanted to know I am sure, but I felt like sharing. I hope you continue to improve and feel better each day!

Roger

I have an appointment with the chemo and radiation oncologists on February 13 to begin treatment planning. I am also supposed to have a swallowing evaluation on that day, but it's not been scheduled yet. Having been through radiation before, I absolutely dread having to go through it again, this time with chemo as icing on the cake. I know it is important. I will get through it but I am not looking forward to it.

Roger, this time around you are much smarter. You know all the medical lingo, have your treatment team in place and know how this ordeal works. This can work to your favor! You know how important your intake is and how to manage it. Every single day you need at least 2500-3000 calories and 48-80 oz of water. (You should be doing this already.) Plus this time around you have us in your corner Do you know if you will be getting less rads this time around? I seem to remember a couple members who did rads more than once having slightly smaller doses of rads the 2nd time. If so, then this could be a whole lot easier than it was the first time.

Hang in there!!! We will help you get thru this.

Usually it has to be above 50Gy, if not more, to kill SCC. I had 50Gy IMRT, and 50Gy Proton for two recurrences, but I also had HD-IORT, 12Gy and 10Gy, as a boost, which is equivalent to 3 times that in IMRT, and a pec flap, so was able to receive even more radiation, although the radiated field was smaller, and it also depends on the maximum dose toxicity level of the structure or nearby structures involved, and prior radiation.

Thanks so much. It makes a huge difference to have the support of you great people this time around. I am not sure what the dosage will be. I have not talked to anyone at all about it yet. That would be great if it could be a little less intense this time around. I am not sure what the first dosage was.

I do make sure to take a lot of water, but unless my math is wrong my PEG feedings are calibrated at 2340 calories per day. That sounds on the low side, but it was set up by the dietician. I haven't started to take anything by mouth yet. When I do that will be added in to the calorie count.

Roger

A quick update. The swallowing test was disappointment. I was not able to get any fluid down at all. Too much swelling still. The therapist wants to try again in another month. In the mean time I am to try working on tiny sips of water or crushed ice. I have had a little success with the water sips, but most of it is not going down.

The radiation and chemo oncologists both agree that it's too soon to start treatment yet. It will probably be about a month. When it does happen, it looks like 6 rounds of Cisplatin and 30 hits of radiation.

Overall they tell me I am doing great in my recovery from the surgery. I don't feel great though. It's taking a long time to bounce back, and I feel pretty sluggish much of the time. I am generating a lot of anxiety for myself worrying about the swallowing. I need to chill out and give the swelling time to subside, which seems to be taking forever.

Roger,
Thanks for the update. Sounds like things are going along but not as fast as you would like. You are going through a lot of treatments so it is going to be a longer road to get past this all.

Since you need to get rads/chemo the throat is going to get hard again so adjust your outlook past the end of that set of treatments. It is a long way away for sure but focusing on the longer term will make the daily ups and downs go by a bit easier.

The PEG is essential to get the liquids and nutrition down.

Hang in there, Don

Hi Roger, it will take time to recover from this surgery.
Kris just started with very small amounts of water to swallow. He used a syringe to squirt 5 - 10 mls directly to the back of his mouth. Then he tipped his head to get gravity to help the liquid , well I guess, almost flow down the oesophagus. It took a few weeks of practice to get this right. Be patient and keep practicing.
Tammy

Roger, while it is important to practice your swallowing, it is also important to be on the alert for aspiration. Try coughing up the liquid that you feel isn't going down and go see a doctor right away if you develop a fever. Practice dry swallowing to keep your swallowing muscles in shape every day.

Thanks everyone for your encouragement and advice. I seem to be making gradual headway with the sips of water, and at least having some in my mouth is refreshing. Good point on the dry swallowing. I do this a lot and had not considered it to be part of my therapy. But muscle movement is muscle movement, so I will be sure to keep at it.

Hi Roger:
Back when I was in treatment I had a lot of mucositis problems. I could always remember how I felt that day, how bad it was that day. And maybe I could remember how I felt the day before, but two days back or three days back, or a week back, forget it.

Not remembering the long term day to day made it difficult to determine if I was getting better, getting worse or just standing still.

So, I started a written log and religiously wrote a comment about how I felt every day. Over the short term it may not help much, but from week to week it definitely did. I could easily see that I was improving, even though it seemed the improvements were almost too small to describe on a day to day basis.

Give the idea a little thought, it might be just the thing you need to give you that little boost to your spirit, that hey, improvement is occuring, it's just very slow in coming.

keep fighting, you will get there.

Tony

Hi Roger, I just signed back up again yesterday. I also have a re-occurrence (from 2008). To others I seem fine on the outside, but on the inside I am shaking. I feel like the cancer has spread to my brain, because I am walking around in a Fog. Today I will get my PET scan date, Fri. I meet my reconstruction surgeon. I don't like doing things twice! I am not brave! Radiation again...with THAT MASK...NO WAY!!! I did read your pages here. You at least you give me hope. Do you have a feeding tube?

Hi DianneH,

I am so sorry to hear of your reoccurance. When I found out I was so terrified and full of disbelief that I did not know what to do. I went through Christmas in a fog as you describe. I don't regard myself as brave either, but I think we all untapped reserves that help us through. When I had the first treatment, I pictured it as once and done, and it seems overwhelming to go through it again. Yes, that horrible mask and radiation, this time with chemo stirred into the mix. But, there will come a time when it is done, hopefully for good this time.

I have both a feeding tube and a trach. I hope to lose the trach in a couple months. I imagine I will have the feeding tube for some time as I ramp up on my eating.

Good luck in your meeting with your reconstruction surgeon. You and I will both get through our ordeals. I am eager to hear how you progress. Best of luck to you!

Roger

Hi everyone, this is Roger's daughter Hilary. I have been going through things on his computers trying to find things and such and I came across these support forums he was using.

Unfortunately, my dad passed away in the beginning of April. The cancer had become too aggressive and treatments were not an option anymore. He didn't suffer long and he fought hard until the end with such pride and strength. I am so thankful that he had such great support from all of you and I know he would've liked you all to know how he was. I can take some comfort now knowing he is no longer in pain and suffering. Even though I lost a great father, he won his battle and he is living pain free in paradise somewhere.

Best of wishes to all and your loved ones.

-Hilary

Hilary,

I am very sorry to hear about your dad. It is always so hard to lose the battle to the beast. Thank you for taking the time to visit here for your dad to say goodbye. My thoughts go with you and the family as you carry on.

Hillary, my deepest, heartfelt sympathies to you. I'm so sorry to hear of your dad's passing. I was wondering how he was doing. It was so thoughtful of you to think of us, in the midst of your grief.

Hilary, thank you for letting us know. Im so very sorry to hear of your fathers passing! May he rest in peace free from pain and suffering. My sincere condolences to you and your family.

Hillary,

I am so so sorry for your loss. I just lost a loved one to the "beast" as that call it, last week. It was hard. I am currently a caregiver to another. My heart is with you. It is so hard. I wish I could give you a hug.

Thankyou for updating us Hillary.
I know that you will have great memories of your Dad. Treasure them always.
Tammy

Glad to hear they saved your larynx! That's great news. Hang in there, Sophie

I'm sorry for the loss of your father.

Hillary, I know how difficult it is to lose someone so dear. The feelings of acceptance and grieving are so confusing and overwhelming. I am sorry for the loss of your dad. He certainly was so very strong, all my condolences.

Thank you so much for reaching out, Sophie

I am so sorry on the loss of your dad... hugs and many blessings to you.