Tongue Cancer Patient / Saying Hello
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jonnykk
Member Posts: 3
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.
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.
0
Comments
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Hi Jonny
Sorry you're here Jon, and glad you found the site. There are a number of people here who have had surgery similar to yours and I'm sure you'll hear from some. It sounds like you're recovering from it, and it's good news that your lymph node biopsies came back negative. I had about the same treatment as far as rads--35--and three chemo sessions. That time will bring a new group of issues, all of them do-able, and the time will pass quickly because it will keep you busy and dizzy. Keep us posted, you can get through this. Search the site for threads--"Search CSN Content", upper right after login--on upcoming treatment symptoms. You'll find a wealth of "practical" information, and be sure to ask for prayers, thoughts, and support whenever you need it. May your treatment be uneventful.
best, Hal0 -
Made it through your long post.
I think that one holds the record. Lol. ;-) Just wanted to welcome you to our little group that no one wants to join and wish you luck during your upcoming rads and chemo.
I can identify with that piece of your tongue getting stuck in your teeth.
Made me about sick because during radiation my mouth was a mess and one day on the way home the roof of my mouth came off in a sheet and got stuck between my front teeth. Lord that was painful. I have trouble with 'th' too! I haven't figured out where to put my tongue to get it to sound normal. My parents have a 200 lb English Mastiff named Thor. When I say his name he just looks at me like I have six heads. We were playing a game at Christmas and I had to read the question because it was my turn. The question had the name Ethel in it. I tried to say it right, and I even said, Ethel, as in Lucy and Ethel in I love Lucy. When my niece handed me her answer she had written 'Essel'. I tried. The automated phones don't like me either.
Blessings,
Sweet0 -
Johnny
As sweet and Hal noted- sorry you are here, but you are most welcome to be here.
I'm NPC, so we are a bit different. NPC being mouth and nasal area, I would advise you to stock-up on the Magic Mouthwash, and do not hesitate to let your Drs. know about how you're handling the C&R. Mouth's gonna take a hit, on top of what's already been done, if I interpret correctly what you said about the all-Positives on what was removed. Morph is scary stuff, but it does the job, and you might keep that in mind. The rads can be somewhat unfriendly, but this thing will be manageable. I was amazed at how quickly my mouth healed, and I hope and pray the same go for you. Keep us updated.
kcass0 -
Welcome
Glad you found us. We're always here for you.
Bob0 -
I was diagnosed with tongue cancer as well
I am also sorry to hear about your situation. I know exactly how you feel about the panic. I was diagnosed with tongue cancer in October 2010, at the age of 26. I had my surgery November 1, 2010. Never smoked, never drank. I believe mine was caused by a very sharp wisdom tooth, and I grinded my teeth and bit my tongue during my sleep, I believe.
I had about half my tongue removed. I had to have a graft taken from my arm, and skin taken from my thigh, like you mentioned. Thank goodness they did not have to open my jaw. From what I read, you didn't need a skin graft? How are you compensating for the portion removed? Sorry if I misread that part or missed something. 2 of 37 lymph nodes were positive for me, unfortunately. My speech has improved, but I just pray it gets better. I just wanted to tell you a bit about my experience. I have days where I am an emotional wreck as well and I was so reluctant to undergo radiation. I was told that this was my chance for cure as well. Just know you're not alone and reading from others here and getting their advice/perspective has helped.
All the best,
Agatha0 -
Thank you!Agatha said:I was diagnosed with tongue cancer as well
I am also sorry to hear about your situation. I know exactly how you feel about the panic. I was diagnosed with tongue cancer in October 2010, at the age of 26. I had my surgery November 1, 2010. Never smoked, never drank. I believe mine was caused by a very sharp wisdom tooth, and I grinded my teeth and bit my tongue during my sleep, I believe.
I had about half my tongue removed. I had to have a graft taken from my arm, and skin taken from my thigh, like you mentioned. Thank goodness they did not have to open my jaw. From what I read, you didn't need a skin graft? How are you compensating for the portion removed? Sorry if I misread that part or missed something. 2 of 37 lymph nodes were positive for me, unfortunately. My speech has improved, but I just pray it gets better. I just wanted to tell you a bit about my experience. I have days where I am an emotional wreck as well and I was so reluctant to undergo radiation. I was told that this was my chance for cure as well. Just know you're not alone and reading from others here and getting their advice/perspective has helped.
All the best,
Agatha
Thank you so much for all the support and comments everyone! I do realize that the chemo and radiation my be a "new world of pain", but as everyone has said, it is a chance for a cure.
I'm saddened to hear just how many people this disease has effected, but hearing from the survivors and seeing all the support is simply amazing. While I wouldn't wish this on anyone, I certainly feel honored to hear from those that have been here before me, and offer their support, advise and words of encouragement.
Agatha, it certainly sounds like our cases are very similar. When I went into surgery, I had all the lines drawn on my arm for the skin graft. From my understanding, it was highly likely they would need to do the graft, but when I woke up from surgery my arm had not been touched. Apparently they did not need to penetrate the floor of my mouth, so they were able to avoid the graft. In regards to compensating for the portion of tongue removed, I'm hanging in there... At first it was extremely difficult to eat and speak. I've had jobs in the past that had me speaking in public on a regular basis and I was fairly proud and confident of my ability to communicate with people. My confidence in the spoken word has been taken, but I too hope and pray that my speech will get better in time. I am realistic though and do realize that I'm lucky to still be speaking in the first place. They removed about 40% of mine (mostly towards the front left, just past the center line in the middle). Friends and family tell me my speech gets better every day, but I'm still highly aware of the distortion pronouncing some words.
While I am certainly scared of the upcoming feeding tube, chemo and radiation treatments, I understand they are a necessity and not an option for my recovery. Emotionally I have good days and bad days... some days I cry at anything and others I feel very confident about my recovery. I'm fighting as hard as I can to keep a positive and upbeat outlook on everything, but this has certainly changed my life forever.
Once again, thank you so much everyone for the kind words, prayers and support. It is so wonderful to hear from everyone and I hope to continue communicating as much as possible through the recovery process.0 -
jonnykk's journeyjonnykk said:Thank you!
Thank you so much for all the support and comments everyone! I do realize that the chemo and radiation my be a "new world of pain", but as everyone has said, it is a chance for a cure.
I'm saddened to hear just how many people this disease has effected, but hearing from the survivors and seeing all the support is simply amazing. While I wouldn't wish this on anyone, I certainly feel honored to hear from those that have been here before me, and offer their support, advise and words of encouragement.
Agatha, it certainly sounds like our cases are very similar. When I went into surgery, I had all the lines drawn on my arm for the skin graft. From my understanding, it was highly likely they would need to do the graft, but when I woke up from surgery my arm had not been touched. Apparently they did not need to penetrate the floor of my mouth, so they were able to avoid the graft. In regards to compensating for the portion of tongue removed, I'm hanging in there... At first it was extremely difficult to eat and speak. I've had jobs in the past that had me speaking in public on a regular basis and I was fairly proud and confident of my ability to communicate with people. My confidence in the spoken word has been taken, but I too hope and pray that my speech will get better in time. I am realistic though and do realize that I'm lucky to still be speaking in the first place. They removed about 40% of mine (mostly towards the front left, just past the center line in the middle). Friends and family tell me my speech gets better every day, but I'm still highly aware of the distortion pronouncing some words.
While I am certainly scared of the upcoming feeding tube, chemo and radiation treatments, I understand they are a necessity and not an option for my recovery. Emotionally I have good days and bad days... some days I cry at anything and others I feel very confident about my recovery. I'm fighting as hard as I can to keep a positive and upbeat outlook on everything, but this has certainly changed my life forever.
Once again, thank you so much everyone for the kind words, prayers and support. It is so wonderful to hear from everyone and I hope to continue communicating as much as possible through the recovery process.
You have come a long way to this point. It is interesting that after multiple dental visits, neither of the two dentists considered cancer! Our dentist has a "special light" which is supposed to show up oral cancer lesions. I think it is a scam. Cancer changes everything and the treatment will "consume" you and your partner for the next several months. You can do this. We are almost done and I have to admit that I wondered if we could continue treatment at times but we got through it. The kind support of forum members has really helped. Take care and keep in touch!0 -
Jonnykkbuzz99 said:jonnykk's journey
You have come a long way to this point. It is interesting that after multiple dental visits, neither of the two dentists considered cancer! Our dentist has a "special light" which is supposed to show up oral cancer lesions. I think it is a scam. Cancer changes everything and the treatment will "consume" you and your partner for the next several months. You can do this. We are almost done and I have to admit that I wondered if we could continue treatment at times but we got through it. The kind support of forum members has really helped. Take care and keep in touch!
Wellcome to the board. Allthough my cancer was in the toncil area, my dental surgeon did not
express any concern when I be showed him the lump on the side of of my neck. He said it was a bacterial infection & that my troubles be over after he removed my molar. I had no other
symptom's etc to indicate it was major. I never questioned his diagnosis untill much later.
No pain or weight loss,night sweat etc. I truly admire all of you who have gone through surgery plus treatment. I had radiation & chemo & was first diagnosed Dec 18th 2009. I don't
like to complain as there are alot here who have gone through so much more. I had sores from
the chemo & had trouble keeping feeding's down but never lost any weight. I am happy to hear
you have so much support by the way of family & a devoted partner. That in itself is key. I
wish you luck on your upcoming treatment & as you go through this journey.Everyone here is
kind & so supportive & some have much more expertise than other's,but we are all here to help each other.
Please keep us posted as to how you are progressing.
God Bless
Roz0 -
Welcomerozaroo said:Jonnykk
Wellcome to the board. Allthough my cancer was in the toncil area, my dental surgeon did not
express any concern when I be showed him the lump on the side of of my neck. He said it was a bacterial infection & that my troubles be over after he removed my molar. I had no other
symptom's etc to indicate it was major. I never questioned his diagnosis untill much later.
No pain or weight loss,night sweat etc. I truly admire all of you who have gone through surgery plus treatment. I had radiation & chemo & was first diagnosed Dec 18th 2009. I don't
like to complain as there are alot here who have gone through so much more. I had sores from
the chemo & had trouble keeping feeding's down but never lost any weight. I am happy to hear
you have so much support by the way of family & a devoted partner. That in itself is key. I
wish you luck on your upcoming treatment & as you go through this journey.Everyone here is
kind & so supportive & some have much more expertise than other's,but we are all here to help each other.
Please keep us posted as to how you are progressing.
God Bless
Roz
Hi Johnny,
Welcome to the site. Glad you found your way here. Feel free to come on and ramble any time. We all do from time to time. I had St.4 Tonsil cancer with mets to nodes. I am 9 months out of my last rad and am doing great!! Don't be afraid, this can be beat and while unpleasant it is doable. Stay strong and mad at the C and you will overcome!!
Best, Steve0 -
Hi Johnny
Sorry that you are here, glad you found us. We all have our own stories. Here is mine. I thought my cancer pain was dental related also. When my dentist suggested that I might have a sinus infection, because there was nothing wrong with my teeth. My family doctor told me I did not have a sinus infection (I didn't believe him) but was concerned about my low red blood count. I had an upper and lower GI done and he saw a large bleeding polyp on my hypopharnyx. The look of fear on this doctor’s face sent me directly to an Ent surgeon in whose office I had an absolute fit shoving the picture of the polyp in the receptionists face. There was no way I was not waiting for a appt in 2 weeks. I had surgery the next day. When the surgeon removed the polyp there was a ssc tumor underneath. Found an Oncology team. They couldn't surgically remove it. The 35 radiation and three rounds of chemo did the trick. I am 7 months out, NED and feeling fine. I did have to have a feeding tube and celebrated the day it was removed.- Judy0 -
same as me.
Wow! I was 21 when I was diagnosed with tongue cancer and it spread to the left side of my neck. I'm 32 now so over 10 years post treatment. I had part of my tongue removed but it sounds like your speech is doing great. Mine is good now but trying to use the /k/ sound is tough and some other sounds like /g/. Had the same surgery as you, did your face blow up like a balloon. I had such a huge face for weeks. It sounds like you have good doctors that are on top of this and that is great. Very disappointing about your earlier dentist visits. I was diagnosed by an ear nose and throat doctor because I went to her because I thought I had a canker sore that would not go away, I was wrong. Radiation and chemo are hard but I think they are better now then when I had them. Eating is still a pain for me. I eat so slow and cannot eat spicy foods any more. Everyone has different reactions to the treatments. I've read some people say they can eat whatever they want, so who knows. Reading your story was just crazy because I felt like I was reading a little about me. I was in college when I was diagnosed, and looking back now I would rather been diagnosed then , then now. It sounds like you have great doctors and a supportive family. Always stay positive and take each treatment one day at a time. It will be finished one day. Good luck to you and if you ever want to talk you can email me
iloveev@hotmail.com. I know I would've loved to have someone who went through what I went through during it, but I just recently found this website and most people our ages do not get tongue cancer. Good luck and best wishes. I'll keep you in my thoughts and prayers.
Linda
Also I fought getting a feeding tube for a long time and then I was hospitalized for dehydration so that is great that you are doing it early on. It will help a lot and save you a lot of frustration and pain.0 -
New Patient
Hi, Jonny. I am sorry to hear of your issues. However, I think it is a good thing that you have found the experienced and kind people on this board early in your treatment program. There are many here who have experienced the same or similar treatments and they are indeed a great resource to maintain your knowledge base and sanity during this very difficult time. I wish you the best of luck during the rads and chemo and try to not get too hung up on some of the very bad stories that you may hear. Every case is unique and nobody can predict exactly how you will respond as far as side effects. Hang tough, keep the faith and continue the fight. Please keep us updated on how you are doing.
Roger0 -
Hello and Welcomejonnykk said:Thank you!
Thank you so much for all the support and comments everyone! I do realize that the chemo and radiation my be a "new world of pain", but as everyone has said, it is a chance for a cure.
I'm saddened to hear just how many people this disease has effected, but hearing from the survivors and seeing all the support is simply amazing. While I wouldn't wish this on anyone, I certainly feel honored to hear from those that have been here before me, and offer their support, advise and words of encouragement.
Agatha, it certainly sounds like our cases are very similar. When I went into surgery, I had all the lines drawn on my arm for the skin graft. From my understanding, it was highly likely they would need to do the graft, but when I woke up from surgery my arm had not been touched. Apparently they did not need to penetrate the floor of my mouth, so they were able to avoid the graft. In regards to compensating for the portion of tongue removed, I'm hanging in there... At first it was extremely difficult to eat and speak. I've had jobs in the past that had me speaking in public on a regular basis and I was fairly proud and confident of my ability to communicate with people. My confidence in the spoken word has been taken, but I too hope and pray that my speech will get better in time. I am realistic though and do realize that I'm lucky to still be speaking in the first place. They removed about 40% of mine (mostly towards the front left, just past the center line in the middle). Friends and family tell me my speech gets better every day, but I'm still highly aware of the distortion pronouncing some words.
While I am certainly scared of the upcoming feeding tube, chemo and radiation treatments, I understand they are a necessity and not an option for my recovery. Emotionally I have good days and bad days... some days I cry at anything and others I feel very confident about my recovery. I'm fighting as hard as I can to keep a positive and upbeat outlook on everything, but this has certainly changed my life forever.
Once again, thank you so much everyone for the kind words, prayers and support. It is so wonderful to hear from everyone and I hope to continue communicating as much as possible through the recovery process.
Like everyone says - welcome to the club - the members are great, but meeting the requirements to join sucks.
I'm glad you posted a long explanation - it helps us see where you're coming from.
Again, like most here - my biggest words of wisdom are "eat, eat, drink, drink, drink, exercise, take your meds, keep your doctor aware of anything that's going on with you, drink, and every day, watch a stupid TV show or funny movie, or participate in a silly activity - and, in case I forgot, drink". Oh, and tell your partner you appreciate them when you remember to be appreciative.
I'm a base of tongue survivor. It was stage IV, two lymph nodes involved. I was diagnosed in October, 2009. Two months after treatment ended, I was eating (and tasting) a majority of the foods I tried.
Do well. Keep us updated.0
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