Squamous Cell Carcinoma

Svensk · August 2005

Hello,

My husband has been diagnosed with SCC at the base of tongue and it has spread to one lymph node on the right.

You all sound so brave - I am so scared for him... Yesterday we met with the tumor board and got quite morbid statistics as to the survival rate.

The doctors advised against an operation on the back of tongue, because maybe he wouldn't be able to eat except through a tube in his abdomen. The treatment would be 7 weeeks of radiation together with chemo the first and third week (maybe more I'm not sure) starting the week of Aug. 29th. They want to radiate both sides of the neck even though the tumor on the tongue and the cancerous lymph node are both on the right.

We plan to meet with the radiologist and oncologist next week. In the meantime we made an appointment with UCLA for a second opinion and also with Stanford.

I am wondering if anyone has had Proton radiation therapy - we read that it's supposed to be stronger than conventional radiation and also do less damage to surrounding tissues. I realize that both chemo and radiation will be very difficult for him, but what are the most important questions - we have read so much... learned about the probable loss of the salivary glands, stiff neck - the doctors didn't say anything about a temporary feeding tube... there's so much we don't know. Any information about this whole process would be so helpful.
Take care.
Svensk

tavz77 · August 2005

Hello,
I too had scc...in the tonsil and lymph nodes on the left side. Yes I would get a second opinion. My docs are very optimistic that they have got it all and that it wont come back and that's how I'm praying. Radiation to the head and neck is tough. I had 6 weeks of radiation IMRT. I suffer from dry mouth and have to keep water by my side 24-7...also had to have teeth pulled and that is no fun either. but through the tender mercy of our God, I am still on this side of the grass....hang in there and listen to what the docs are telling you.....and get the second opinion....that never hurts.....God bless and take care..
Rich

rose42bp · August 2005

HI!!!!!! Sorry tohear about your husband. I had surgery first myself for scc of the left side of the tongue. Mine was right at the back of my tongue before getting to what is considered the base. Had radical neck surgery the first go round too. After second surgery had six weeks radiation. I got through it without a feeding tube of any kind. It is tough,especially the last two weeks of radiation and the two weeks after completion. The effects from the radiation run about a week behind so after completion that is why it is rough for two weeks. Dry mouth came early for me. Anything you put in your mouth stings it and hurts. My skin did not do so well as some people i saw. It got really red and wept toward the end. There are several medicines they give for dry mouth, swallowing problems. It will irritate your esphogus and make it hard to swallow. It will swell up all of a sudden and it will feel like a giant lump in his throat. It was scary for me but it went down and felt better but still made it hard to swallow. I still have that some now, a year later. But tell them all his symptons even if feels silly. I have heard some people that have had radiation only and got along pretty well and did not need anything else, the cancer was gone. A second opinion is very good. Get the facts, pray alot about what options he has and make a decision what to do. As I was told there are no right or wrong decisions just be able to live with the decisions you make. With God's help that is possible and he will help him through it. You are both inmy prayers. Please keep us updated.

dvdasmth · August 2005

Hello,
I too am sorry to hear about your husband.
I also had SCC of the floor of the mouth and base of the tongue.
I had an operation to remove the cancer and also a radical operation of the neck to remove both lymph nodes.
They put a tracheodomy in my neck (which lasted about a month) and a feeding tube through my nose which was removed about two weeks after I was released from the hospital.

The next step in my treatment, 2 months later was radiation. I'm not aware of the type but my teeth were removed before the operation because both sides of my jaw and neck were radiated. The first 2-3 weeks I had no discomfort or pain however, the later part of the treatment became very difficult: It was very hard to swallow or even drink water. I've lost 80% of the salivary glands.

I hope the details of my experience help you and don't sound morbid because for me it was an adventure in change.

I thank God because it could have been much worse.

Your husband is lucky to have you at his side.

Please wish him well for me.

David

P.S. I have a web-page on the CSN if you'd care to view it.

pday1 · August 2005

Hi, Svensk--

I am currently undergoing radiation and chemo for SCC left tonsil/one lymph T1/N1/M0 at UCLA. My surgeon was Dr. Blackwell, highly thought of for reconstruction surgery if needed. Although I'm not having surgery he is the "team leader", as I understand how it works at UCLA. My radiation oncologist is Dr. Julliard, probably at the top of the list in U.S. as far lymphatic system knowledge . Medical Oncologist is Dr. Rosove, who is doing fine job of feeding me poison while keeping side effects down. I am having 6 weeks whole neck radiation with fields designed to spare as much saliva/parotid function as possible, followed by two weeks of targeted IMRT to primary sites. Each week on Tuesday I get 175ml Paraplatin(Carboplatin solution) and 40mg Taxotere. This is fairly light dosage of chemicals designed to soften up the little devils for radiation. Am not having a feeding tube to start with. Dr. Julliard says he has not had to have one with his patients going on five years now, and wants me to maintain the swallowing capability throughout.

The folks at UCLA are terrific. I had a second opinion and that Doctor recommended exactly the same treatment that the UCLA team did. After doing my initial research upon being diagnosed, I thought I would like to have only IMRT to try and save saliva better but you always run some risks with such a highly targeted, software driven treatment. Although remote, there have been more than a few "technical misses" in pure IMRT that are not publicized, and opinions are still mixed as to how effective it is for those unseen, microscopic cancer cells that don't show on the CT/PET scans. The lymphatic system is full of nooks and crannies. Since prognosis was really good given my early stage of cancer, I chose to go with what the Docs recommended rather than go against the grain, although they would have given me(reluctantly) IMRT from the start if I had insisted. So far, saliva is still flowing well.

There is another excellent web site for head and neck cancer survivors and information, and I would recommend you visit it and participate, lots of good advice to be had there, too.

http://hncancer.com/survivors.shtml

I know you must be hungry for knowledge--I know I was when I was in your shoes just a few weeks ago. I am in my second week of treatment with few side effects to be felt yet, but I know they will come. Being prepared is a great comfort, so feel free to quiz me or any of the other great people you will run into on this site and others. Good luck, and God bless.

--Art

maur · September 2005

tavz77 said:
Hello,
I too had scc...in the tonsil and lymph nodes on the left side. Yes I would get a second opinion. My docs are very optimistic that they have got it all and that it wont come back and that's how I'm praying. Radiation to the head and neck is tough. I had 6 weeks of radiation IMRT. I suffer from dry mouth and have to keep water by my side 24-7...also had to have teeth pulled and that is no fun either. but through the tender mercy of our God, I am still on this side of the grass....hang in there and listen to what the docs are telling you.....and get the second opinion....that never hurts.....God bless and take care..
Rich

Rich,
My friend was diagnosed with scc of the left tonsil & lymph node involvement,it was stage 4. He is a year & several months out now and is doing well. My question is...do you worry alot about recurrence and what are the first signs?I am afraid all the time and my anxiety is terrible. He gets checked every 3-4 months, is this early enough to catch it? He is 38 and had all his teeth pulled also.How do I try to stop worrying and just live????

tracy_csn · September 2005

I am 55 year old male diagnosed with SCC left tonsil 9/04. Had panendoscopy and radical neck dissection 11/04. 39 treatments of radiation with synergistic cysplatin chemo. With perfect 20/20 hindsight, I might not have needed the surgery, as it was primarily diagnostic (take out all 19 left neck lymph nodes and biopsy them; result was none had cancer.)
I had a peg stomach feeding tube as well as a mediport and would recommend considering getting both. After 2 weeks of radiation, my tongue was such that I had zero taste, and could not bring myself to swallow any of the cardboard like food. With feeding tube, I was able to force in 3600 calories a day, but even then, I lost about 40 lbs. With nearly daily chemo, the mediport saved me the pain of daily vein-needling.
Today I have continuing dry mouth (I highly recommend Biotene OralBalance artificial saliva), which makes it impossible to eat any type of dry food. I also have a lot of neck and shoulder pain (in a radical neck dissection, they remove a muscle as well as jugular vein and one salivary gland...). I have tried acupuncture (not significant result) and continue with physical therapy and massage.
I did not have any teeth removed, but I did have some quick crown work done before starting the radiation. I would get a 2nd opinion from a good dentist that has had experience with h&n cancer before having teeth removed. Now I am a fanatic about dental hygiene, such that if I eat anything at all, I immediate floss and brush right after meals, sometimes four times a day. Also have fluoride trays (ask your experienced dentist...).
Good luck, and my prayers and best wishes go out to you!

Sdawe · September 2005

Svensk,
My husband finished surgery to remove part of his tongue and 36 radiation treatments on June 4th. He was diagnosed with basilod squamous cell carcinoma in January of this year. I know what you are going through and knowledge is the only thing that made me feel strong and my husband feel more confident. We live in an area that has good medical care but the best was all I could think about after you realize the magnitude of this cancer. I walked into UCLA with the intention of this being one of 3 to look at and I met Dr. Abemayor and Dr. Blackwell and we both knew we would look no further. They were visibly the best of the best ( and I can tell you this was the only time in my life that I wanted to be intimidated by genius!) My husband is doing so well but the road was hard but I can tell you my days were about him getting well and nothing else mattered. Today, 3 months post...he is working, eating (a little difficult) and happy. I will also say his feeding tube was in for 5 months and a god send in his recovery (absolutely nothing to be afraid of). Please let us know how you are....Suzann

thumper0001 · September 2005

Svensk,
Hang in, it's a tough go at times. I was T4 and 0 went through 3 chemo's and the 7 week radiation. Was many times that I came close to chucking it. Lost 40 pounds, 20 of which needed to go. Back to work after 4 months, still real sore but getting by and have put 20 of those pounds back on. Let everyone know how things are going and how we can help even if it is just to listen, this is one way that I can give back just a little of the support that I got and believe me I owe a lot to a lot of people. Got my good news a couple of weeks ago, scan and biopsy both clear.

Thumper sez....drive it like ya stole it and tell them you're from Detroit!

tubes · October 2005

Hi Svensk,
My name is Ananth and you can see my web page - My Quest. I was also diagnosed with SCC but of the larynx in its last stage. I too underwent 48 sittings of radiation ( which turned out to be a disaster as I was given double the amount of radiation that I should have recieved - it was enough to have killed me). I also went thru four cycles of chemo - ie; mon-sat: radiation and sundays were kept aside for chemo tht went on all day. I honestly do not think your hubby will need a peg tube for feeding after the radiation and chemo but then I am no doctor - just one who has been through the effects. There will be a temerory loss of voice, difficulty in swallowing and drying in the mouth due to saliva drpping. That is not too bad as water and there is a certain mouth wash avilable that can help keep the mouth wet.In due course all will be back to normal.
In my case however, I developed a rare problem because of the fallout of the amount of radiation I got - I got a fistula between my wind and food passage which made it impossible to eat orally. I have been on a peg tube( tube in the stomach ) for over four and half years now and am pretty much used to it. I "eat" all the food that normal people ( those who eat orally!) do - the only difference being that you all have to chew your food and then swallow it - in my case I dont have to chew - its just pureed and poured down my peg tube with the help of a big syringe - adjusted by me to fit into the tube which gives me all the nourishment I require. I have everything - food, cokes, pepsis etc. but I also keep my taste buds and smell sense alive by chewing on chocolates etc and throwing them out everyday.
I dot know how far I have been able to give you the information you are seeking but all I can say you fear are for real but all will turn out ok.
I guess by the time you read this message the treatment would have been over and hope it went off well.If you feel like writing to me - please do so via my web page. It would be great to hear on your hubbys progress.
regards,
Ananth (tubes)

snickie · February 2006

Hi Svenske- Last January I was diagnosed with scc on base of tongue and right lymph node. Since I had 4 weeks of chemo and 7 weeks of radiation. I had proton radiation which helped me not lose my teeth (so far). Was on a peg tube for 3 months. During radiation I had trouble sleeping and with mucus. I slept sitting up,tried to drink valarian tea to help sleep and cut down on the mucus.It takes a month or so but the mucus does go away. Have lost about 80% tastebuds and saliva glands. Still have to have water on hand 24 hours a day. Since I started treatments I have lost almost a 100 #s. In Nov of 2005 I had a radical neck dessection because the cancer had spread back to the right and left lymph nodes. It's even harder for me to eat. I cannot get my mouth open wide enough for a spoonful of food and kinda have to shove it in. I've notice through all of this that healing is noticable by the months and not weeks. i take lysine(sp?) vitamin for the mouth,gargle with biotene to help with the dry mouth and brush with prodentx every other night to help with dry mouth and keep my teeth from going bad. I hope by this time you are doing better. You probably have found more strength in yourself than you ever thought possible. Take care and God bless.

django · March 2006

maur said:
Rich,
My friend was diagnosed with scc of the left tonsil & lymph node involvement,it was stage 4. He is a year & several months out now and is doing well. My question is...do you worry alot about recurrence and what are the first signs?I am afraid all the time and my anxiety is terrible. He gets checked every 3-4 months, is this early enough to catch it? He is 38 and had all his teeth pulled also.How do I try to stop worrying and just live????

In February I was diagnosed with cancer, right tonsil. Twelve years ago I was diagnosed with cancer, left tonsil and it had gone into one lymph node. I had radical neck surgery in which my tonsil was taken out plus 22 lymph glands because the doctor believed that it could have spread even further. The 22 came back negative so it was in my left tonsil and one lymph node. I had 7 weeks or radiation 5 x a week. On day one of the radiation my salivary glands blew up like a chipmunk. I was one in I don't know how many people that this happens to and 12 years later my left salivary gland does not function and the right one partially functions. I have never fully recovered from that surgery. My teeth are always a mess, my taste buds are gone, I'm hoarse most of the time, I choke on food where I have to take a bite and take a sip of water. Eating is a chore becuase I take too long. I get anxious when I go out for lunch or dinner with someone I'm not comfortable with because I take forever to eat. Twelve years ago I was told by my doctor that if you can get past 2 1/2 yrs. cancer free, it's looking good, if you get past 5 years it's looking even better and for that type of cancer if you don't get it after 5 years you really don't have to go for 6 month check ups. I continued to get check ups 12 years after the fact and wouldn't you know it...I was just diagnosed with cancer, right tonsil.

My frustration and anger is not that I got cancer again, becuase I don't believe that God made me any more special than anyone else on earth, but what is frustrating is that I've complained and complained some more about a pain under my tongue and by my ear for over one year. I was always referred to the dentist, which I ended up having root canals, and the pain would go away after antibiotics, but would come back again. My right tonsil was removed in February and I had a PET Scan and other tests which said that it was in the base of my tongue and palate.

On Friday I'm going again for another PET Scan and MRI or CT Scan (I'm allergic to the iodine) in order for the new doctor to stage the cancer. This doctor is the chief surgeon at a different hospital and thinks that the first PET Scan ordered by the other doctor was not the right one. That makes me feel wonderful. I'm not exactly happy that I was not taken a little more seriously because it would have been caught earlier on and perhaps the surgery would be less invasive. My problem is that I can't have any more radiation. In case any of you don't know that, once you have radiation you cannot have radiation a second time around so the doctor is hoping he can get all of the cancer out becuase otherwise the option would be chemo and they don't believe that's a good choice for me.

I'm 54 years old and moved to Santa Fe 3 years ago with the intentions of moving back east as soon as I got back on my feet. Seems like ever since I moved out here my life has been upside down. I've suffered from ulcerative colitis for 30 years, chronic migraines since the age of 12 and other serious health issues. I guess one of the reasons doctors who don't know me don't take me seriously is because I wear makeup, have my hair done nice and wear nice clothes. For any woman who wants to be taken seriously regarding illness, just wash your face, wear sloppy clothes and have a one inch root on your hair. My question to anyone reading this message is regarding the surgery and pain management. I have a serious problem with codeine and morfine. They give my terrible migraines. I guess I have to make sure the doctors know that because my throat pain would be eased by my migraine would be equally as painful. This happened 12 years ago and I asked them to take me off of the morfine and I was in a lot of pain.

When you have part of your tongue removed (they've told me about 5-7% of the base and part of the palate), while in the hospital do they close your mouth so that it doesn't open? I was told by the doctor they would have to do a tracheotomy also becuase my tongue would be swollen and would not be able to breath. How long is the hospital stay, approximately? I know it varies but is it two weeks, a month? Are you in the ICU? I just want to know more about what you feel coming out of the recovery room and how to cope with this devastating change. How did anyone feel once they opened their eyes after the surgery. What was uncomfortable, how long did the the discomfort last? I'm more freightened of the after effects of the surgery than the diagnosis.

eltonjohn · March 2006

I just underwent tongue cancer surgery at UCLA. I saw Dr. Joel Sercarz (surgeon) and Dr. Keith Blackwell (plastic surgeon). Dr. Sercarz removed the tumor in my tongue and placed a trach in case of swelling after surgery. I also had a feeding tube placed in my stomach. Dr. Blackwell rebuilt my tongue with tissue from the inside of my left arm and then covered the left arm with a graft from my left thigh. I am doing pretty good, however, I lost alot of weight. I got down to 85 pounds and I am 5/'7" tall. UCLA is a great place and you should listen to those guys. I finished 39 radiation treatments and I am one year post surgery and am undergoing speech therapy. I saw my oncologist today for a regular check up and he is very happy and does not see any reoccurrence of cancer. Trust Dr. Sercarz, I do.

eltonjohn · March 2006

I hope your husband saw Dr. Joel Sercarz at UCLA. If anyone can help your husband, its Dr. Sercarz. He removed the left side of my tongue as I was diagnosed with squamous cell carcinoma. I also had a couple of lymph nodes removed from the left si$de of my neck. Dr. Sercarz removed the cancer in my tongue and then rebuilt it with tissue from my left inner forearm. Then he put a graft over my forearm from my left thigh. He also removed the lymph nodes and the scar on my neck is pretty bad. During surgery they had to put a trach in so I would be able to breathe if the swelling after surgery made it hard. They also placed a feeding tube in my stomach. I was in UCLA hospital for 8 days. I wasn't allowed to speak for the first few days, then my trach was removed as I was able to speak when I covered the hole. (The loss of speech was the hardest for me as it is very frustrating not to be able to speak normally.) I am going through speech therapy now. The first day after surgery is the hardest. I had a machine that delivered my pain medicine when I pushed a button and I was pushing that button a lot the first day after surgery when the nurse gave me a spongue bath. Just moving around hurt. Make the doctors provide enough pain medicine. They have a tendency to be stingy with it. I told Dr. Sercarz that I needed it in order to push myself to get better and he understood that. I underwent radiation to my head and neck and there are side effects. The worst for me was the loss of short term memory. I have extensive conversations with people I don't remember. My teenage daughter tells me something and I just don't remember. Also, watch out for the fatigue. Very tiring. Don't limit your diet. Try to eat anything you want, just make it very small bites. I had a craving for peanut butter (it sticks to the top of my mouth which makes eating it very hard) so my husband bought peanut butter ice cream and makes me milk shakes. You will also have to watch out for weight loss. I am normally 125 pounds and got down to 85 during radiation. Good luck, and see Dr. Sercarz if you haven't already.

Christmas · March 2006

django said:
In February I was diagnosed with cancer, right tonsil. Twelve years ago I was diagnosed with cancer, left tonsil and it had gone into one lymph node. I had radical neck surgery in which my tonsil was taken out plus 22 lymph glands because the doctor believed that it could have spread even further. The 22 came back negative so it was in my left tonsil and one lymph node. I had 7 weeks or radiation 5 x a week. On day one of the radiation my salivary glands blew up like a chipmunk. I was one in I don't know how many people that this happens to and 12 years later my left salivary gland does not function and the right one partially functions. I have never fully recovered from that surgery. My teeth are always a mess, my taste buds are gone, I'm hoarse most of the time, I choke on food where I have to take a bite and take a sip of water. Eating is a chore becuase I take too long. I get anxious when I go out for lunch or dinner with someone I'm not comfortable with because I take forever to eat. Twelve years ago I was told by my doctor that if you can get past 2 1/2 yrs. cancer free, it's looking good, if you get past 5 years it's looking even better and for that type of cancer if you don't get it after 5 years you really don't have to go for 6 month check ups. I continued to get check ups 12 years after the fact and wouldn't you know it...I was just diagnosed with cancer, right tonsil.

My frustration and anger is not that I got cancer again, becuase I don't believe that God made me any more special than anyone else on earth, but what is frustrating is that I've complained and complained some more about a pain under my tongue and by my ear for over one year. I was always referred to the dentist, which I ended up having root canals, and the pain would go away after antibiotics, but would come back again. My right tonsil was removed in February and I had a PET Scan and other tests which said that it was in the base of my tongue and palate.

On Friday I'm going again for another PET Scan and MRI or CT Scan (I'm allergic to the iodine) in order for the new doctor to stage the cancer. This doctor is the chief surgeon at a different hospital and thinks that the first PET Scan ordered by the other doctor was not the right one. That makes me feel wonderful. I'm not exactly happy that I was not taken a little more seriously because it would have been caught earlier on and perhaps the surgery would be less invasive. My problem is that I can't have any more radiation. In case any of you don't know that, once you have radiation you cannot have radiation a second time around so the doctor is hoping he can get all of the cancer out becuase otherwise the option would be chemo and they don't believe that's a good choice for me.

I'm 54 years old and moved to Santa Fe 3 years ago with the intentions of moving back east as soon as I got back on my feet. Seems like ever since I moved out here my life has been upside down. I've suffered from ulcerative colitis for 30 years, chronic migraines since the age of 12 and other serious health issues. I guess one of the reasons doctors who don't know me don't take me seriously is because I wear makeup, have my hair done nice and wear nice clothes. For any woman who wants to be taken seriously regarding illness, just wash your face, wear sloppy clothes and have a one inch root on your hair. My question to anyone reading this message is regarding the surgery and pain management. I have a serious problem with codeine and morfine. They give my terrible migraines. I guess I have to make sure the doctors know that because my throat pain would be eased by my migraine would be equally as painful. This happened 12 years ago and I asked them to take me off of the morfine and I was in a lot of pain.

When you have part of your tongue removed (they've told me about 5-7% of the base and part of the palate), while in the hospital do they close your mouth so that it doesn't open? I was told by the doctor they would have to do a tracheotomy also becuase my tongue would be swollen and would not be able to breath. How long is the hospital stay, approximately? I know it varies but is it two weeks, a month? Are you in the ICU? I just want to know more about what you feel coming out of the recovery room and how to cope with this devastating change. How did anyone feel once they opened their eyes after the surgery. What was uncomfortable, how long did the the discomfort last? I'm more freightened of the after effects of the surgery than the diagnosis.

I don't have any answers to your questions, but I just want to send you my prayers and best wishes. I totally understand your frustrations and fears. Be strong! As the saying goes, "You've come a long way, Baby.

Squamous Cell Carcinoma

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