Squamous Cell Carcinoma

JohTimm · January 2007

Hello,
Ihave recently moved to Phoenixville, PA. after being treated in San Francisco for my condition. The doctors agreed that I should go home to my family and make the best of my time left. Well the expiration date has passed and I want to get in touch with a group, or someone in my area-a ten mile radius is fine- that I can talk with about my experiences. I would like advice, make contacts and just share the travails of having to go through all of this.

Thanks,

Jack

eltonjohn · January 2007

I'm not within 10 miles of you, I'm in Southern California. I was however diagnosed with squamous cell carcinoma of the tongue. I underwent surgery on 4-25-05 and had the left side of my tongue removed and replaced with tissue from my inner left forearm. My forearm was then covered with skin from my left thigh. I had a stomach tube implanted during the surgery and it finally came out 12-24-05. The surgeon also did a left neck flap and took out my lymph nodes. I underwent 39 weeks or so of radiation which has rendered me still very tired and I continue to suffer from short term memory loss.
I just underwent a PET scan which now shows a small spot on the neck opposite side from my previous surgery.
This cancer is a bad one. You don't say where your tumor is located. I'd be more than happy to answer any questions that you have about my experiences. Feel free to ask.

JohTimm · January 2007

Hi eltonjohn,
Thanks for the response. My carcinoma was on the right floor of my mouth-found by my dentist-so in April of 1995 I had it excised. One doctor wanted to do a radical neck disection, and when described to me scared the hell out of me. So I got a second opinion and this doctor said that the rocedure was not necessary, and could it from only the inside of my mouth. I opted for the new procedure and after finding out that my lymph system was clean spent the next 7 years without worry. There was always a lump of scar tissue I could feel but it never changed untillDecember 2002 when my neck ruptured one evening and blood was spurting everywhere. I nearly passed out from fright because I knew what it was. After trying to clean up I went to the emergency room at UCSF-I had been living in San Francisco for 33 years-and hooked up with my doctor who did the original surgery. Nothing would close the wound. Not stiches nor cauterizing, which smelled awful, and all agreed only radiation would do it. Now all this sounded great but I was uninsured, having lost my employment two monthe before, so my doctor found a way to get me "...into the system for people like me. It was excruciatingly slow and bearucratic. My treatments did not begin until late Feb. 2003-radiation twice a day, and chemo every Monday-so while I was waiting I had a continous bleed from the neck and had to change the dressings frequently. Also two seperate skin infections occurredIt was all very painful and nerveracking.
Finally the treatments began and so did the chemo nausea and radiation burns and the ruined immune system which gave me Thrush and a few other oral infections, so the pain made eating solids impossible and what little liquid dietary supplements I could tolerate tokk me from 170 lbs. to 117 lbs after it was all over. My doctors said that they could not cure me and gave me a year or so to live. So I moved back to Pennsylvania to live out the remaining days with my family.
Forgive me the lengthy backgroiund as I do have some questions for you. Obviously I am still alive and was getting along quite nicely after accepting my fate and making peace with my past. The I realized that I was going to be around for a lot longer that predicted and became extremly angry. Now I had to reinvent myself all over again. Along with that came the depression, anxiety and PTSD that my shrink says is all to common in cases like mine. So, did any of this happen tou you, and if so how have you dealt with it? I see a shrink and am on anti depressants and anti anxiety meds which I don't want to be. I want to get through it on my own and with advice from others.
Did you finally re-learn how to use your tongue without biting it al of the time. The right side of mine is numb because they apparently had to do some slicing and dicing on it also. Did you also loose all sense of taste? Mine lasted six months only returning slowly, but still it never all came back. Have you gotten over the constant fatigue at all. I have not and it has been almost four years. You are lucky that you did not receive chemo as the long term, and lifetime, side effects are very unpleasant.
So how are you coping now? Does the latest PET scan carry with it possibly more surgery or rads? I hope not. I hope that I have not been to long winded here, and thank you again for geting back to me.

Jack

eltonjohn · January 2007

JohTimm said:
Hi eltonjohn,
Thanks for the response. My carcinoma was on the right floor of my mouth-found by my dentist-so in April of 1995 I had it excised. One doctor wanted to do a radical neck disection, and when described to me scared the hell out of me. So I got a second opinion and this doctor said that the rocedure was not necessary, and could it from only the inside of my mouth. I opted for the new procedure and after finding out that my lymph system was clean spent the next 7 years without worry. There was always a lump of scar tissue I could feel but it never changed untillDecember 2002 when my neck ruptured one evening and blood was spurting everywhere. I nearly passed out from fright because I knew what it was. After trying to clean up I went to the emergency room at UCSF-I had been living in San Francisco for 33 years-and hooked up with my doctor who did the original surgery. Nothing would close the wound. Not stiches nor cauterizing, which smelled awful, and all agreed only radiation would do it. Now all this sounded great but I was uninsured, having lost my employment two monthe before, so my doctor found a way to get me "...into the system for people like me. It was excruciatingly slow and bearucratic. My treatments did not begin until late Feb. 2003-radiation twice a day, and chemo every Monday-so while I was waiting I had a continous bleed from the neck and had to change the dressings frequently. Also two seperate skin infections occurredIt was all very painful and nerveracking.
Finally the treatments began and so did the chemo nausea and radiation burns and the ruined immune system which gave me Thrush and a few other oral infections, so the pain made eating solids impossible and what little liquid dietary supplements I could tolerate tokk me from 170 lbs. to 117 lbs after it was all over. My doctors said that they could not cure me and gave me a year or so to live. So I moved back to Pennsylvania to live out the remaining days with my family.
Forgive me the lengthy backgroiund as I do have some questions for you. Obviously I am still alive and was getting along quite nicely after accepting my fate and making peace with my past. The I realized that I was going to be around for a lot longer that predicted and became extremly angry. Now I had to reinvent myself all over again. Along with that came the depression, anxiety and PTSD that my shrink says is all to common in cases like mine. So, did any of this happen tou you, and if so how have you dealt with it? I see a shrink and am on anti depressants and anti anxiety meds which I don't want to be. I want to get through it on my own and with advice from others.
Did you finally re-learn how to use your tongue without biting it al of the time. The right side of mine is numb because they apparently had to do some slicing and dicing on it also. Did you also loose all sense of taste? Mine lasted six months only returning slowly, but still it never all came back. Have you gotten over the constant fatigue at all. I have not and it has been almost four years. You are lucky that you did not receive chemo as the long term, and lifetime, side effects are very unpleasant.
So how are you coping now? Does the latest PET scan carry with it possibly more surgery or rads? I hope not. I hope that I have not been to long winded here, and thank you again for geting back to me.

Jack

Wow. You have really been through it. I feel pretty lucky now. My recent PET scan found a small "spot" on the opposite side of my neck from where the previous carcinoma was found. I can eat just about anything. The flap on my tongue has worked pretty darn well. My saving grace is my surgeon, Joel Sercarz from UCLA. He is the best. He decided that a needle biopsy under ultrasound was needed for this new "spot." I am scheduled for that procedure on 2-2-07. On 4-25-07 it will have been 2 years since the operation. I am on Xanax for anxiety. My neck hurts still pretty badly, but my primary care physician has prescribed me Morphine with Vicodin if I need it. I am also lucky because I still have my medical insurance. I also lost my job but converted my medical insurance to COBRA. I also had a disability policy that has paid me for the past two years, it just ran out. We are planning on selling our home in Long Beach and taking the equity to buy a home outright in Fallon, Nevada. We will still have quite a bit left over for a nest egg and I will be eligible for Medi-Care in July of 2007. Things could be a lot worse for me. How are your surviving? I hope you have a good family connection. My anxiety has to do with my looks. I used to be fairly good looking and now I feel as though I could scare small children. The radiation caused small wrinkles around my mouth and my neck still looks pretty bad. My speech was effected very badly also. But, I am fortunate to have a primary care physician who will prescribe me what I need. I look at eating like: I will try anything (cut up real small) and if I can eat it good, if not I'll try something else. I cannot eat any citrus or anything too spicy.

I'm sorry it took so long for me to get back to you, I will check more often now. The type of cancer we have is one of the worst. Let me know if you have anymore questions, ej

eglow · January 2007

eltonjohn said:
Wow. You have really been through it. I feel pretty lucky now. My recent PET scan found a small "spot" on the opposite side of my neck from where the previous carcinoma was found. I can eat just about anything. The flap on my tongue has worked pretty darn well. My saving grace is my surgeon, Joel Sercarz from UCLA. He is the best. He decided that a needle biopsy under ultrasound was needed for this new "spot." I am scheduled for that procedure on 2-2-07. On 4-25-07 it will have been 2 years since the operation. I am on Xanax for anxiety. My neck hurts still pretty badly, but my primary care physician has prescribed me Morphine with Vicodin if I need it. I am also lucky because I still have my medical insurance. I also lost my job but converted my medical insurance to COBRA. I also had a disability policy that has paid me for the past two years, it just ran out. We are planning on selling our home in Long Beach and taking the equity to buy a home outright in Fallon, Nevada. We will still have quite a bit left over for a nest egg and I will be eligible for Medi-Care in July of 2007. Things could be a lot worse for me. How are your surviving? I hope you have a good family connection. My anxiety has to do with my looks. I used to be fairly good looking and now I feel as though I could scare small children. The radiation caused small wrinkles around my mouth and my neck still looks pretty bad. My speech was effected very badly also. But, I am fortunate to have a primary care physician who will prescribe me what I need. I look at eating like: I will try anything (cut up real small) and if I can eat it good, if not I'll try something else. I cannot eat any citrus or anything too spicy.

I'm sorry it took so long for me to get back to you, I will check more often now. The type of cancer we have is one of the worst. Let me know if you have anymore questions, ej

eltonjohn,

I saw your story and it sounds similar to what my Mom is going through. I wonder if I could ask you a few questions?

A brief history, she was diagnosed in August w/ oral cancer and went through surgery to have a tumor removed from her tongue. The surgeons also did a neck dissection and removed lymph nodes from both sides of her neck. She had muscle pulled up from her stomach, underneath her breast to replace part of her tongue. That did not take and they had to do another surgery, taking muscle from her back this time. She has recovered mostly from that surgery but a second tumor was found so chemo and radiation started right away. They originally waited to start until her healing was close to complete from the surgery.

She is in her last week of radiation right now and has an appt w/ the surgeon 2/5/07. I assume they will run the same tests as when she was diagnosed so they can compare.

From the sound of your surgery, I would assume you had a trach? If so, how long? Did you ever experience long-term coughing? My Mom is and no one seems to be able to explain why this is.

She also has a feeding tube but is much more anxious to get the trach out.

I'm glad I found this website and you in particular since your story sounds similar to my Mom's. There doesn't seem to be a whole lot of info about oral cancer compared to other cancers.

Thanks again in advance and I wish you all the best.

Emily

JohTimm · February 2007

eltonjohn said:
Wow. You have really been through it. I feel pretty lucky now. My recent PET scan found a small "spot" on the opposite side of my neck from where the previous carcinoma was found. I can eat just about anything. The flap on my tongue has worked pretty darn well. My saving grace is my surgeon, Joel Sercarz from UCLA. He is the best. He decided that a needle biopsy under ultrasound was needed for this new "spot." I am scheduled for that procedure on 2-2-07. On 4-25-07 it will have been 2 years since the operation. I am on Xanax for anxiety. My neck hurts still pretty badly, but my primary care physician has prescribed me Morphine with Vicodin if I need it. I am also lucky because I still have my medical insurance. I also lost my job but converted my medical insurance to COBRA. I also had a disability policy that has paid me for the past two years, it just ran out. We are planning on selling our home in Long Beach and taking the equity to buy a home outright in Fallon, Nevada. We will still have quite a bit left over for a nest egg and I will be eligible for Medi-Care in July of 2007. Things could be a lot worse for me. How are your surviving? I hope you have a good family connection. My anxiety has to do with my looks. I used to be fairly good looking and now I feel as though I could scare small children. The radiation caused small wrinkles around my mouth and my neck still looks pretty bad. My speech was effected very badly also. But, I am fortunate to have a primary care physician who will prescribe me what I need. I look at eating like: I will try anything (cut up real small) and if I can eat it good, if not I'll try something else. I cannot eat any citrus or anything too spicy.

I'm sorry it took so long for me to get back to you, I will check more often now. The type of cancer we have is one of the worst. Let me know if you have anymore questions, ej

Sorry I took so long. So how went the biopsy? I hate those things. I was also on a lot of pain medication but gradually stopped them all as the pain was allways there (even Oxycontin

let the breakthrough pain in) and all they really did was
constipate me and make me itch So I lived with the discomfort. You are so lucky to have the insurance packages. I had to wait two
years after getting on dissability to be eligible for medicare.
I too am on Xanax and it really dose the job. I stopped the Wellbutrin after I realized the most of the depression was from self pity and the old "Who cares?" attiude. Those are lethal.My face and neck have gone through some alterations as well thanks to the radsMissing a salivary or two whick leads to constant dry mouth and slurred speech. My neck looks as though it had caught on fire, my lower right lip droops and my thyroid gland was destroyed. I am very self consious too now about the way I sound and look.
I hope your move will be a great sucess. Oh, one more thing. Yoy had radiation right? Did they pull all ofyour teeth to prevent necrosis like they did mine? Good to jhear from you. Yake cre my friend.

jjcamp · March 2007

eglow said:
eltonjohn,

I saw your story and it sounds similar to what my Mom is going through. I wonder if I could ask you a few questions?

A brief history, she was diagnosed in August w/ oral cancer and went through surgery to have a tumor removed from her tongue. The surgeons also did a neck dissection and removed lymph nodes from both sides of her neck. She had muscle pulled up from her stomach, underneath her breast to replace part of her tongue. That did not take and they had to do another surgery, taking muscle from her back this time. She has recovered mostly from that surgery but a second tumor was found so chemo and radiation started right away. They originally waited to start until her healing was close to complete from the surgery.

She is in her last week of radiation right now and has an appt w/ the surgeon 2/5/07. I assume they will run the same tests as when she was diagnosed so they can compare.

From the sound of your surgery, I would assume you had a trach? If so, how long? Did you ever experience long-term coughing? My Mom is and no one seems to be able to explain why this is.

She also has a feeding tube but is much more anxious to get the trach out.

I'm glad I found this website and you in particular since your story sounds similar to my Mom's. There doesn't seem to be a whole lot of info about oral cancer compared to other cancers.

Thanks again in advance and I wish you all the best.

Emily

Hi, this is my first time that I have ever even looked at a chat room but I'm at my end. My mother was diagnosed with Squamouse Cell Carcinoma on May 16, 2006. We live in a rural community and the clinic referred her to the University of Nebraska Medical Center. Her primary oncologist has been Dan Lydiatt. On June 1, 2006, was first her 1st appt at UNMC and she meet with Dr. Lydiatt as well as an oral surgeon, had blood work up, ekg, etc., blah blah blah. She had a T-2 lesion on the floor of her mouth. On 06/06/06 (look at that date) she had surgery. They removed the tumor, took part of her jaw bone, removed all lower teeth and all top except 6 of the fron, did a radical bilateral dissection, removed lymph nodes, inserted at trach, placed a flap in the floor of her mouth with a piece from her left for arm together with an arterie for blood flow and finally a graft from her left leg to cover the place on her arm from the flap. She (we) were in the hospital for 8 days, she did absolutely wonderful. She's a fighter and wasn't going to let this beat her. She came home and recovered well. On July 17th she had her 1st chemo treatment along with radiation. I've read about people talk about the "mask", it was very hard for her but she came through it like a champ. She finished 3 chemo treatments and 7 weeks of radiation without pause. One thing to keep in mind that she each day she had 2 1/2 hours one way of driving time for her daily radiation treatments(5 hours a day of driving and 1 hour of treatment). On 9/1/06 my sister from Nashville returned to "celebrate" the end of the treatments. On 9/3/06 we took my mother to the local ER because she was severely dehydrated (she refused to have a tub). They gave her 2 bags of IV and released her. On 9/5/06 I brought her back to the ER for because of dehydration and I insisted that she was admitted. She (we) stayed until 9/10. I have not talked about the severe mouth sores, dry mouth, loss of apetite, the inability to eat, weight loss (38 lbs) or the severe depression, as anyone who reads this or been through it will understand.

She has been hoping for her teeth back for months so she will be able to . On 1/11/07 we meet with the oral surgeon for the implants so that she could get dentures. She began HBO treatments the following Tuesday in preparation of surgery for the implants - she is to have 20 before surgery and 10 after. She is now waiting to have the surgery scheduled, I would expect it to happen in the next few weeks (it is a money issue, she retired 12/31/05 and has no insurance).

I realize I have been going on but I'm getting to my point.

On Friday, March 9th, she had an appt at the clinic in our small town for a sore that she has on her shin of her leg (it is about 1 1/2" inches in diameter). The DR told her he does not believe it is an infection and that it is most likely cancerous. The doctor did a scrap and a biopsy of the lesion. She got a call on 3/12 and they told her that the findings from the scrap have come back and it is "normal skin bacteria". The biopsy results should be back by 3/16/07.

HERE IS MY BIG QUESTION!!!!!!!!!!!!!!!

3 years ago, my mother went to this clinic because she had a small sore on the same shin which would not heal. The DR examined it and said that it was most likely an infected sore, gave her an antibiotic and said if it didn't go away come back. She never returned for this ailement. I have spoke with an number of people and they also FEEL dumb for going to this clinic for any problems because the DR doesn't know what it is and that the patient is just being a hypocondriac.

I am now concerned that my mother my have had skin squamous cell carcinoma 3 years ago which has gone untreated and then moved to the oral cavity.

Has anyone heard of this happening before?

I'm just really concerned that she will have to go back through treatments.

Thank you for any help you may provide.

Julie
(I have edited this and I know that there are many typographical errors, I apologise but it isn't that important to me.)

Squamous Cell Carcinoma

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