Tongue Cancer Patient / Saying Hello

Hello everyone! I (like many others I'm sure), found this website / forum while doing some research on my somewhat recent cancer diagnosis and treatment. I figured I would join and share my story, also to try and connect with other individuals that have or may be going through the same or a similar experience to mine.

Introduction:

I'm a 33 year old Caucasian male, I've been very athletic most of my life and have participated and competed in a wide variety of sports over the years. All and all, I've been fairly active and would consider myself a "jack of all trades, master of none". I work from home doing online marketing, but spend most weekends and or fixing things. I'm a European car nut as well, so I've spent plenty of time under cars fixing and modifying them. I was also a long term smoker, about 15 years at slightly under a pack a day until I was diagnosed.

Background (up to diagnosis):

About a year ago, I was at a regular dental visit and the dentist pointed out to me that I had cracked and lost a fairly large filling on my back molar. The missing filling never bothered me, so I really had no idea it was gone. As the year progressed, from time to time I would feel a little "knick" or "pinch" for lack of a better term, somewhat like a pinch but very small and it would only last a brief second. This could happen while eating, talking, etc... I could never find a specific way to trigger it, but I certainly knew it was there when it happened.

I had moved from Ohio to Vermont, so my long time family dentist was in Ohio and I had not found a regular dentist in Vermont yet. I took a trip back to Ohio to visit my family and figured that I would have my teeth cleaned, and also get the missing filling replaced to put an end to this little "knick" or "pinch" I was dealing with that slowly but surely got worse. So in I went for the routine cleaning and filling, an hour later I came out with a new filling and what I thought would be the end of my pain. I had asked the dentist if he thought anything was wrong with my tongue, but he assured me everything looked ok.

I returned to Vermont from my trip to Ohio a week later, still feeling fairly refreshed about my recent trip to the dentist and not having to deal with the worry of the tooth any longer. However less than a week after returning, my speech became heavily slurred and more pain came with it. I could look and see where the damage had been done from the tooth rubbing and causing all the discomfort on my tongue.

After a few phone calls, I finally found a local dentist that could take me as a new patient. The appointment was 2 weeks out, but it was better than nothing and I didn't know exactly who else I could turn to (ER, surgeon, etc...). My appointment came and I explained things to my new dentist. She did not like the look of the first filling, so she pulled it out, put a new filling in and smoothed things out as much as possible. Again, we both felt this would fix things and get me back to normal.

A week later, the pain was getting worse and my methods to try and get the sore to go away were not working. No matter how much I rinsed with warm salt water, brushed my teeth, honey, tea bags and just about every other method I could find, would do anything for the sore. I began taking Advil to try and curb the pain and make day to day life a bit more manageable. Another phone call to the dentist office, trying to explain everything with a heavy slur to the receptionist. Another appointment, but another week out...

This visit, the dentist felt that I may be chewing on my tongue during my sleep. Somehow I was getting something caught, or dragging something around to cause my tongue to be extremely sore and rubbed raw. I had asked if she thought this was something more "in depth" like cancer, etc... partially at the pressure of my family to find out what was wrong. She did not think I was dealing with anything extremely serious and felt that a custom fit mouth guard may help prevent the rubbing, so the mouth guard mold was made and a day later I had a custom fit mouth piece.

Again, I had high hopes that this might solve my problem. Maybe the mouth guard would give me enough time to keep my tongue from getting torn up and actually start to heal. I was instructed to call immediately if things did not change. A few days go by with the mouth guard (and some horrible drooling while sleeping), I feel a little better, but still have issues when the mouth guard is not in. A week later, another call to the dentist and a rush appointment in that afternoon.

This visit to the dentist brought some more slight grinding of the new fillings, trying to smooth everything out as much as possible. I just wanted the tooth removed at this point, but my dentist was hesitant to rip out a good tooth. Again I left the dentist with a hope that this recent work may fix everything and I would be on my road to some pain free days.

Another week passes and still no improvement. I called the dentist again, this time barely able to speak on the phone to set up the appointment. The dentist was well aware of the pain I was in at this point, and she felt that referring me to the oral surgeon would not be a bad idea at this point. Fortunately there was an oral surgeon in the same building, directly above my dentist office. Unfortunately, the surgeon could not see me for almost 2 weeks... Another 2 weeks of intense pain, sleeping with the mouth guard and more intensive worrying began.

I arrived at the oral surgeon, almost prepared for the worst news. My speech and pain levels had been getting worse and worse over a 3 month period at this point, and I knew that something wasn't right. The surgeon came in the room, took a very quick and brief look in my mouth and almost immediately felt that it was oral cancer. He said he would spare me the pain of having (2) biopsies done, so he referred me over to the doctors / surgeons at Fletcher Allen in Burlington, VT.

Another 2 week wait to get over to the surgeon for the biopsy... more pain, more worrying, no improvement at all. The meeting with the surgeon went well, he took a look and initially felt that it might not be cancer possibly just a tumor, he wanted the biopsy to confirm, but did offer a somewhat brief look at a possible alternative diagnosis. Out came the needles and instruments... once the first shot to numb everything up was in, it relieved me a little as it was the first time in months I did not have any pain due to my tongue (that I could feel anyhow). The surgeon prescribed some pain medications to deal with the pain along with the biopsy area and also some steroids and antibiotics to try and get the swelling and pain levels down.

A week later, just after Thanksgiving, the call came with the biopsy results. I was now a confirmed cancer patient.

Prognosis:

The next few weeks flew by, appointments were set up with multiple doctors, each wanted to hear my story from the beginning. The surgeon, the radiologist, the chemo therapist all listed to my story, looked around to see what was going on in my mouth and began to formulate a plan for recovery. The initial talk was of surgery to remove a portion of my tongue, then things moved to a possible start with radiation and chemo, followed by surgery.
Follow up appointments the following week laid out a few more possible options and what they felt may be the best plan of attack. There was going to be a cancer "convention" that Thursday morning, so I was told the case would be presented and after, I should have a fairly good guideline for the final plan of attack.

The appointment was set up that Thursday with my doctor @ Fletcher Allen. She and many of her colleagues had reviewed my case as had most of the cancer department. I did feel that I had a large team of doctors fighting for me and formulating the best plan to cure me. She felt that surgery would be my best bet for a cure. Removing the tumor quickly and following up with radiation is what she felt would be the best plan of attack. She explained the process of the surgery, what might go wrong, what other areas might be affected and how the recovery process would work after the surgery. We left the hospital knowing the surgery would be coming soon, so we waited to hear back about a time that the surgeons could get operating room time together... We were also advised that getting a second opinion would be a good idea.

An appointment for a second opinion was set up at Dartmouth on Tuesday, December 14th. On the drive back from Dartmouth, around 4pm in the afternoon, the nurse coordinator from Fletcher Allen called to inform me that my surgery date was scheduled for Thursday, December 16th first thing in the morning. I was dumbfounded... just in a total state of shock, less than 48 hours to come to grips with my surgery date, let my family in Ohio know and travel to Vermont along with prepare myself for everything. At first I declined the surgery date (mainly out of fear), there just was not enough time for me to prepare. A few moments after hanging up the phone, my doctor herself called to try and calm me down, along with discuss why this treatment needed to happen as soon as possible. I reluctantly agreed to the surgery date, but also knew she was doing everything in my best interest for a full cure / recovery.

Pre-surgery:

I had learned quite a bit over the past few weeks. I knew that the form of oral cancer I had did not present itself as "normal". My age and the location of the tumor (more towards the front of the tongue) took out a few options (like the TransOral Robotic Surgery), but my doctor assured me she would be as delicate as possible and not intrude any more than she had to. She did feel that the PET and CT scan indicated the cancer had spread into the lymph nodes on the left side of my neck, so those would be taken out along with the section of tongue. There was a possibility that she would need to graft skin from my forearm to put a flap in my mouth, another graft from my leg to cover the section on my arm, and the possibility that my jaw might need to be broken / partially removed to gain more working room. I was certainly aware of all the factors, but there were quite a few open ended options that I would not know about until I woke up from surgery. The day before the surgery flew by, since the hospital is a 2 hour drive from our home, the Hope Lodge was able to accommodate us for the night prior to the surgery (and my partner for the following days), this let us get up and be at the hospital in less than 5 minutes. My family all started driving to VT from OH right after the news of the surgery date, and I was very fortunate to have my entire family there the day of the surgery.

I should also note that I have had a full beard for all of my adult life. For the past 15+ years I have had it and most people have never seen me without it. Needless to say, aside from the cancer diagnosis, the fears of being disfigured, and now the fear of loosing my beard forever. I shaved by beard off the night before the surgery and started to adapt to the new look.

Surgery:

The surgery went well and lasted about 7 hours. They did not have to break my jaw, nor take the skin graft / flap from my arm, but they did remove 40% of my tongue and the lymph nodes on the left side of my neck. Another oral surgeon removed two lower wisdom teeth that were severely impacted, as the dental work all needed to get done as quickly as possible before the radiation treatment. I was in the ICU for 2 days, a nasogastric feeding tube was inserted (while in surgery) through my nose to take care of my nutritional needs and also a catheter (also done while in surgery). I was a bit disoriented after waking up the first time after the surgery, but did not have any severe pain. My ICU nurse was absolutely wonderful and did everything she could to make me and my family as comfortable as possible.

Recovery:

I spent 7 days in the hospital recovering from the surgery. The pain levels fluctuated, but the doctors and nurses all made sure that I was in the least amount of pain possible. The incision along my neck was large, but not painful due to cutting through the nerves. I could tell the wisdom teeth were removed, but there was quite a bit of numbness along the entire left side of my face. I had no clue what was left of my tongue, I could feel something, but wasn't sure exactly where things started and stopped. It took a few days to sort of adapt to what my "new" mouth felt like. I did not have the same kind of pain from the tooth rubbing my tongue raw though, so that was somewhat of a relief.

The nasogastric was not too bad to deal with at first, but 5 days into my stay, it just became too annoying and was causing a great amount of pain. I had shown the doctors that I could swallow and speak to a certain degree, so they agreed to remove the feeding tube. What a relief! Having the nasogastric tube removed was a major step in my recovery, I only had one drain left in where the lymph nodes were and the catheter was removed in the ICU, just one more tube to pull and I would not have any hoses hanging from me.

The nurses were all wonderful, every one of them made me feel great and they all were a huge help in my recovery process. Some quickly became more than just "my nurse" and are now friends.

Christmas was quickly approaching and I knew there was a good chance I might spend it in the hospital. The team of doctors felt that my recovery was moving along very well, so with all my tubes out, they released me from the hospital on the 23rd of December so I could spend the Holiday at home with my family.

Unfortunately my release time wasn't scheduled perfectly with my pain med schedule... Pain meds were every 4 hours, the hospital gave me my last meds at 11am and I was discharged at 1pm, finally leaving the hospital about 2pm. We started the 2 hour drive home, stopped at the drug store upon arriving in town, only to find they did not have the prescribed pain mediation. A quick phone call to the drug store across the street turned up a small amount of pills, but not the total prescription. Something was better than nothing as it was now 5pm and my pain levels were through the roof. We finally got home, crushed up the pain meds, found something to mix them in and wash them down with... finally some relief.

The next few days went fairly well, but I knew there was a portion of my tongue that was "there", but I had no sensation in at all. It looked like they had wrapped some extra tissue from the surgery around my tongue, and stitched it down to act as a protective barrier to cover the open wound. I had a very odd sensation behind where it attached, but nothing at all at the very edge. Eating was horrible, anything that involved chewing created quite a bit of discomfort and very difficult to do. The first food I tried to chew, I managed to bite the front portion of tongue I could not feel, which created a good amount of pain where it attached to my tongue and caused some bleeding. Soft foods only it was...

Just a few days before New Years, I was feeling pretty well and thought I would give some mac and cheese a try. One small bite went into my mouth, I tried to maneuver it around to my teeth to chew and took a soft bite. I immediately knew something was not right and rushed to the bathroom. The portion of "tissue" on the front of my tongue that I could not feel had gotten tangled in with my teeth. I managed to pull it almost all the way off my tongue with that one bite, for the exception of a small connecting point that was attached with what seemed to be a stitch. Blood was coming out pretty good and I went into a state of panic. My partner immediately called the hospital, they got the doctor on call to give us a call and it happened to be one of the doctors that closed me up during surgery.

We explained what had happened, and he assured us that as long as the bleeding was in control, everything would be fine. I could not get past the sensation of having this mass of something "dead" hanging off of my tongue, just barely hanging on. It felt like I had a massive piece of gristle from a steak attached to my tongue. They told me to come into the clinic first thing in the morning, so we immediately called the Hope Lodge to get a room and started the commute.

I barely slept that night, my head was a mess of horrible thoughts and my body was totally exhausted. My appointment at the clinic was early, so I stumbled over in my PJ's not really caring at all how I looked, it represented how I felt pretty well. My doctor took one look and said, "Oh, that's not an issue, just a minute and I'll have you all fixed up!". She acquired a stitch removal kit, had me open up and made one quick snip... I felt nothing at all and saw the fairly large mass of "something" come out and into the tray. Immediately upon closing my mouth, it felt absolutely wonderful to not have this "thing" hanging there and there was not pain at all. I wouldn't be surprised if my spirits brightened up the room a little bit, it felt so wonderful to feel what my new tongue REALLY felt like.

Recovery (3 weeks out):

Once the previous episode (see above) was over, I finally felt that my recovery had moved into a good direction. I've been able to start eating more and more food and found new ways to move things around to make chewing and swallowing easier. My speech is certainly not what it used to be, but I can speak fairly well and hold a conversation on the phone. My parents headed back to Ohio right after I was released from the hospital, but I speak with them every day on the phone for at least a little while to try and improve things. My speech has continued to improve, but I'm also aware that it will probably never be what it once was.

What's annoying? Food gets stuck, either on the roof of my mouth or around me teeth and I have trouble cleaning it off. I get frustrated when I try to say "3" or something that starts with "th", talking to the automated customer service phone calls is not going to work. Before the surgery I was terrified to sneeze because of the pain. I can now sneeze without any pain, but I have absolutely no control of what is "expelled", so I leave a mess of spit and snot on me, the floor or whatever happened to be in front of me. I think it's time to start carrying a handkerchief full time.

Beyond those fairly minor annoyances, I've been adapting to the changes fairly well. Each day that goes by I seem to figure out something that makes life a little easier. I've been completely off pain meds since my last visit to the doctor where she removed the "thing". Emotionally I've been a train wreck, but with all the changes, and coming off the narcotics so quickly... it was somewhat expected. I haven't totally broken down or been crying at the drop of a hat as I had in the early weeks, so that has felt pretty good as well. I quit smoking the day before my surgery and have not picked one up since.

I will be starting chemo and radiation treatments in the next 2 weeks. The schedule has me bouncing back and fourth between the hospital for doctors appointments, a feeding tube insertion surgery and the radiation mapping, along with my dentist to get any dental work sorted out before the radiation. I will have (3) chemo sessions during my (6) weeks of radiation which are (5) days a week. From everything the doctors have explained to me and that I've read here, it is going to get worse before it gets better, but it is my chance at a possible cure.

The lab results of my surgery came back with the following results. The 14 lymph nodes all turned up negative, so that was great news, it had not spread. They took 14 margins from my tongue after the tumor was removed and those all turned up negative, again great news. Unfortunately they are not able to get any negative margins from the section of my tongue that was removed, so there is a strong likelihood there are still some microscopic cells remain.

If you have made it this far, I applaud your ability to listen to me ramble. I hope to continue to update this with my recovery process as I move through the chemo and radiation treatments. Thanks to everyone for their contributions to this forum, it has been very helpful to read through the stories.