I'm new here
I'm new here. Was diagnosed with SCC in March of this year. Tumor was on the right side of my tongue. In May I went through a partial glossectomy (partial tongue replacement), right neck disection, tracheostomy, feeding tube placement and a skin graft of my right forearm with removal of the radial artery for the tongue reconstruction. It was a pretty brutal surgery. After surgery it was determined through my pathology that there was cancer in one lymph node and had already breeched the node and the tumor on my tongue had attached itself to the small nervous system so radiation and chemo became necessary. To prep for radiation I also had to have all of my teeth removed. I'm glad to fin others who have been through similar things.....I've met very few people who have been through this type of cancer. I finished with chemo and radiation on 8/24 but still feeling many of the radiation effects. Eating again is really hard....Does it get better???? Just getting food to my throat is a time consuming challenge. Having no teeth is awful too. Insurance wont cover dentures so who knows how long I'll be with out them. Looking forward to reading older posts and finding those that can relate. Thanks for listening.
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I am in a similar situation.
I am in a similar situation. Nearly a year ago, I found a lump on the left side of my tongue. Turned out to be SCC, non HPV. Had partial glossecyomy with neck dissection on the left side. One node had cancer so they prescribed 33 rad treatments. Two months out of treatment, I felt a lump on the other side of my neck. Apparently, the rads didn't clear it and I had a second surgery to remove the node which was overtaken by the tumor.
I just started Proton radiation with chemo, this time. My last PET scan and MRI showed no additional cancer.
Eating does get better. In my case, I find the 2nd surgery affected my appetite for some reason. I can eat solids, but food just doesn't appeal to me. Almost nothing does. It takes time but you will get better.
My biggest fear was losing my teeth. Fortunately, I didn't have to as they are in very good condition. I'm sorry to hear that because my tongue and neck are in bad enough shape. It's the new normal, as they say. I have a question for you. My tumor was less than 2cm. I did not have a flap and now my tongue is tied down on the left. Was your tumor larger and how is your speech, as a result?
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Mine measured 2.5 and thestevenpepe said:I am in a similar situation.
I am in a similar situation. Nearly a year ago, I found a lump on the left side of my tongue. Turned out to be SCC, non HPV. Had partial glossecyomy with neck dissection on the left side. One node had cancer so they prescribed 33 rad treatments. Two months out of treatment, I felt a lump on the other side of my neck. Apparently, the rads didn't clear it and I had a second surgery to remove the node which was overtaken by the tumor.
I just started Proton radiation with chemo, this time. My last PET scan and MRI showed no additional cancer.
Eating does get better. In my case, I find the 2nd surgery affected my appetite for some reason. I can eat solids, but food just doesn't appeal to me. Almost nothing does. It takes time but you will get better.
My biggest fear was losing my teeth. Fortunately, I didn't have to as they are in very good condition. I'm sorry to hear that because my tongue and neck are in bad enough shape. It's the new normal, as they say. I have a question for you. My tumor was less than 2cm. I did not have a flap and now my tongue is tied down on the left. Was your tumor larger and how is your speech, as a result?
Mine measured 2.5 and the invasion into the small nervous system was a depth of 1.6. So a bit larger than yours. My speech has been a process. It is getting much better but I talk much slower so that I can form the words properly. I dont like talking as much now to people. There is some sluring and because I currently have no teeth there is sometimes a bit of a whistle...it makes me laugh because to me it sounds so ridiculous. They say some speech will be improved once I get teeth because they will lower the palate of the denture so that my tongue can hit it properly to help me make the sounds. My toungue is a bit tethered on the right side and I am having an additional surgery in January to release it. They will do a small graft from my arm to place under my tongue so its not to free and give it a bit of control. This has certainly been life changing. I too am totally uninterested in food. I can only eat soft things and do not like textures. It's a work out to eat and swallow the food. It smells fantastic but when it comes to eating I dont like it. I've lost almost 70lbs since all this started which for me was the silver lining of the whole thing. How did your body deal with the radiation? I've struggled so much with those side affects. The blisters in my throat, dry mouth etc etc.
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Our stories are similar but
Our stories are similar but you've certainly had a rougher time. The first set of rads I tolerated ok. Mouth sores, fatigue, trouble swallowing, mucousitis, all affected me. But I began recovering a month after they ended. Then I started all over again.
I have the same food issues. Things smell great and I remember what they're supposed to taste like, but when they hit my mouth...blah.
I am interested in possible tongue reconstruction. Is it possible and how is it done. I haven't asked yet, but I imagine the docs are more interested in curing the cancer more than anything. I would love to have my normal speech back. I too, resist speaking as much as possible. It's terrible.
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it's very frustrating tostevenpepe said:Our stories are similar but
Our stories are similar but you've certainly had a rougher time. The first set of rads I tolerated ok. Mouth sores, fatigue, trouble swallowing, mucousitis, all affected me. But I began recovering a month after they ended. Then I started all over again.
I have the same food issues. Things smell great and I remember what they're supposed to taste like, but when they hit my mouth...blah.
I am interested in possible tongue reconstruction. Is it possible and how is it done. I haven't asked yet, but I imagine the docs are more interested in curing the cancer more than anything. I would love to have my normal speech back. I too, resist speaking as much as possible. It's terrible.
it's very frustrating to speak to people. I am an office manager so I am dealing and speaking with people all day long. Of course my co-workers have been wonderful to me and understanding but it's the public that I'm insecure about. Quite frankly I shouldn't care at all but I do. I used to be very outgoing....but I find myself alittle more restrained these days. I think that will improve some when I get teeth back.....not having them makes me crazy. I love to smile, laugh and cut up. It is a process. I still have the feeding tube so I do a lot of liquids but today I ate 1/2 of a hamburger. So weird without teeth, gumming it to death. After a few bites my throat started to hurt again but in time that will clear up.
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welcome
cbeaz4626,
Welcome to the H&N forum, I am sorry this crap visited you, Usually, all aspects of life post treatment do adjust to an acceptable “new normal”. I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).
Even though I was always sampling foods, I did not get back to normal eating for 7 months. The awful feel and taste of 95 % of all foods was overwhelming. So, other than a few foods I liked, I drank smoothies and protein drinks. I was happy to travel around with my little igloo cooler full of drinks and had hopes that it would get better and it did.
You may have some difficult hurdles to clear, but you should and probably will get there. Progress is glacial for many of us, but after 4.5+ years post, I have accepted multiple glasses of (insert beverage here) for each meal. Additionally, I drink about 10 glasses of water a day.
As for dry mouth, it is light years from the beginning, but still an annoyance. I use 2 Xylimelts at bed time and also, use Stoppers 4, Biotene (spray & mouthwash),Oasis, etc. the one thing they all have in common is the Xylitol. I always have a water bottle at the ready and I have gotten comfortable asking for a drink where ever I am, if needed (and it is needed).
Best of luck.
Matt
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I'm certainly glad to knowCivilMatt said:welcome
cbeaz4626,
Welcome to the H&N forum, I am sorry this crap visited you, Usually, all aspects of life post treatment do adjust to an acceptable “new normal”. I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).
Even though I was always sampling foods, I did not get back to normal eating for 7 months. The awful feel and taste of 95 % of all foods was overwhelming. So, other than a few foods I liked, I drank smoothies and protein drinks. I was happy to travel around with my little igloo cooler full of drinks and had hopes that it would get better and it did.
You may have some difficult hurdles to clear, but you should and probably will get there. Progress is glacial for many of us, but after 4.5+ years post, I have accepted multiple glasses of (insert beverage here) for each meal. Additionally, I drink about 10 glasses of water a day.
As for dry mouth, it is light years from the beginning, but still an annoyance. I use 2 Xylimelts at bed time and also, use Stoppers 4, Biotene (spray & mouthwash),Oasis, etc. the one thing they all have in common is the Xylitol. I always have a water bottle at the ready and I have gotten comfortable asking for a drink where ever I am, if needed (and it is needed).
Best of luck.
Matt
I'm certainly glad to know that others have the food issues too. I have felt really alone in all of this. Dont get me wrong, my family and friends have been amazing as well as my husband.....gosh they were all so good during this but to talk to people who really get it makes me feel better.
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food and eating
cbeaz4626,
I used to have Sunday dinner at my parents’ home every week. Would have (typically) 1 bite of chicken, a few peas and a spoonful of mashed potatoes and that was it. When they asked me why I could not eat more, I put a can of Crisco on the table and said “this is what food feels and tastes like” to me.
After 7 months, it was like a switch got flipped and life with food rapidly returned to (almost) normal.
I was trying different foods all the time, it just wasn’t happening for awhile.
Matt
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I'm glad to know that it doesCivilMatt said:food and eating
cbeaz4626,
I used to have Sunday dinner at my parents’ home every week. Would have (typically) 1 bite of chicken, a few peas and a spoonful of mashed potatoes and that was it. When they asked me why I could not eat more, I put a can of Crisco on the table and said “this is what food feels and tastes like” to me.
After 7 months, it was like a switch got flipped and life with food rapidly returned to (almost) normal.
I was trying different foods all the time, it just wasn’t happening for awhile.
Matt
I'm glad to know that it does return. It's been hard because food was always my thing. I'd throw all the parties, cook all the food....and its GOOD food! I'm known in my circle for it so it has been tough. I still cook it for others. I cooked as often as I could during chemo and radiation for my husband from scratch.....but couldn't taste it to check for seasoning.....it's a whole new lifestyle change. I'm happy to be alive and looking forward to kissing 2016 GOOD-BYE!
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Kissing 2016 GOOD-BYE!
2016 needs to be HISTORY. I ready your thread and connected on so many levels, But I love how you closed your last post because that is exactly how I feel. Being advised that I had sqaumous cell Cancer (Head and Neck) in May and thinking that I may not make it to Christmas- to now having gone through the Radiation and Chemo treatments, and all of the side affects mentioned, I am SO DONE with this crap.
I wish you all of the best and send you a virtual hug... which this BabyBlue could use back!
BB
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Better days ahead
cebeaz, I was diagnosed with - Moderately invasive differentiated SCC of the (L) base of tongue, glossopharyngeal sulcus and (L) tonsilla pillar. Stage 4A, T2N1-2aM0. Tumor was 3.5 cm with two suspicious lymph nodes. The tumor had not crossed the midline of my throat but was beginning to paralyze my left vocal cord and squeeze my windpipe. I was not a candidate for surgery and had radiation and chemo. My Oncologist wanted me to commence treatment ASAP and my dental condition was not the best. Had to make the decision to have all my teeth removed. So I am in much the same boat as you except that I do have the tongue tie issues. The whistling, lack of desire to talk so much and the eating challenges I know only too well. My taste buds are still out of whack but coming back slowly. Weird stuff, like I can start a cup of sweetened coffee and taste the sweetness but half way through, it is like I never sugared it. Moving food to the back of my mouth is a challenge. Dry mouth is the killer here. I am six months out of treatment, just had my first scan which came back No Evidence of Disease (NED) - Praise the Lord. My Oncologist has now cleared me to move on to getting dentures. Here I have met some challenges. Firstly, as all recipients of radiation to the jaw area have to, I have to go through 20 sessions of HyperBaric Oxygen Therapy (HBOT) before oral surgery and 10 sessions after. Secondly, I need oral surgery because when my teeth were removed in the rush to get me into treatment quite a lot of tooth debris was left behind and also the bone underlying my gums needs to be smoothed to ensure the best fit for dentures. I commence my HBOT next Monday Nov 28. I will have my surgery at the end of December and will hopefully be looking at denture fittings sometime late January/February next year. In hindsight, it would have been ideal to have had the extractions done by an Oral Surgeon, who at the same time would have done the bone smoothing. Ah well, what's done is done. I will keep you up to date with how things go. If you have any questions, please ask as I have spent a fair bit time researching this phase of my recovery, plus I am sure there are others who can provide advise and insight in to how it has gone for them. BTW, my insurance company has authorised my HBOT due to medical necessity and I believe the oral surgery will also be approved. Here's to our continued victory over the beast and speedy and exellent revovery progress.
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Sending that hug right backBabyBlue said:Kissing 2016 GOOD-BYE!
2016 needs to be HISTORY. I ready your thread and connected on so many levels, But I love how you closed your last post because that is exactly how I feel. Being advised that I had sqaumous cell Cancer (Head and Neck) in May and thinking that I may not make it to Christmas- to now having gone through the Radiation and Chemo treatments, and all of the side affects mentioned, I am SO DONE with this crap.
I wish you all of the best and send you a virtual hug... which this BabyBlue could use back!
BB
Sending that hug right back to you. I am very grateful to have made it through this year and to have recently had a clean pet scan. However this year has been the worst of my life. For me the emotional part (depression) didn't hit until after everything was done. During the fight it's all about the fight, staying positive which is what everyone tells you, you have to do. I think I just went into fight mode. About a month or so after I fisished radiation and chemo I found myself crying a lot, overly sensitive and angry at things that normally wouldn't upset me much. Then one morning I woke up and realized how depressed I was feeling. Mainly about all the change. There was/is no normal yet......I'm slowing seeing my way out of it but it has been the most difficult thing I've ever walked through hence my good-bye 2016 post!!!!!!!!!
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AMEN to the continued victoryBill_Litchfield said:Better days ahead
cebeaz, I was diagnosed with - Moderately invasive differentiated SCC of the (L) base of tongue, glossopharyngeal sulcus and (L) tonsilla pillar. Stage 4A, T2N1-2aM0. Tumor was 3.5 cm with two suspicious lymph nodes. The tumor had not crossed the midline of my throat but was beginning to paralyze my left vocal cord and squeeze my windpipe. I was not a candidate for surgery and had radiation and chemo. My Oncologist wanted me to commence treatment ASAP and my dental condition was not the best. Had to make the decision to have all my teeth removed. So I am in much the same boat as you except that I do have the tongue tie issues. The whistling, lack of desire to talk so much and the eating challenges I know only too well. My taste buds are still out of whack but coming back slowly. Weird stuff, like I can start a cup of sweetened coffee and taste the sweetness but half way through, it is like I never sugared it. Moving food to the back of my mouth is a challenge. Dry mouth is the killer here. I am six months out of treatment, just had my first scan which came back No Evidence of Disease (NED) - Praise the Lord. My Oncologist has now cleared me to move on to getting dentures. Here I have met some challenges. Firstly, as all recipients of radiation to the jaw area have to, I have to go through 20 sessions of HyperBaric Oxygen Therapy (HBOT) before oral surgery and 10 sessions after. Secondly, I need oral surgery because when my teeth were removed in the rush to get me into treatment quite a lot of tooth debris was left behind and also the bone underlying my gums needs to be smoothed to ensure the best fit for dentures. I commence my HBOT next Monday Nov 28. I will have my surgery at the end of December and will hopefully be looking at denture fittings sometime late January/February next year. In hindsight, it would have been ideal to have had the extractions done by an Oral Surgeon, who at the same time would have done the bone smoothing. Ah well, what's done is done. I will keep you up to date with how things go. If you have any questions, please ask as I have spent a fair bit time researching this phase of my recovery, plus I am sure there are others who can provide advise and insight in to how it has gone for them. BTW, my insurance company has authorised my HBOT due to medical necessity and I believe the oral surgery will also be approved. Here's to our continued victory over the beast and speedy and exellent revovery progress.
AMEN to the continued victory!! I think I cried the most over losing my teeth. I was lucky enough to have all my teeth done at the same time they put in my port so it was done during general surgery. They were all cut out and smoothed. However getting insurance to pay for the replacement has been very frustrating. I have written a final letter and also included letters from my radiologist and dental oncologist. If I dont get anywhere this time I am going to go to the insurance commission and file a complaint. I cant understand why they wont cover it. They have said they dont cover dental but they have covered every appointment and the removal of my teeth so to replace them to me only seems logical. They pay to replace breasts after a mastsectomy so to me the fact that I'm having to fight this is ridiculous. Good luck with your surgery on Monday. Post back when you are feeling up to it. Thanks for the support.
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Insurance companiescbeaz4626 said:AMEN to the continued victory
AMEN to the continued victory!! I think I cried the most over losing my teeth. I was lucky enough to have all my teeth done at the same time they put in my port so it was done during general surgery. They were all cut out and smoothed. However getting insurance to pay for the replacement has been very frustrating. I have written a final letter and also included letters from my radiologist and dental oncologist. If I dont get anywhere this time I am going to go to the insurance commission and file a complaint. I cant understand why they wont cover it. They have said they dont cover dental but they have covered every appointment and the removal of my teeth so to replace them to me only seems logical. They pay to replace breasts after a mastsectomy so to me the fact that I'm having to fight this is ridiculous. Good luck with your surgery on Monday. Post back when you are feeling up to it. Thanks for the support.
Got to agree with you about the insurance companies. Before I start on my vent about them I would say that if I had received better advice back in February my situation would be a lot different. From my oncologist I got the dreaded - "it's the big C, stage 4 you need to start treatment ASAP and you will only have one real shot at beating it so you can't afford anything to go wrong". From my dentist, "your teeth aren't real bad but you need a lot of cleaning up etc etc, no extractions though. It will take about six weeks". They talked and the advice was - "best course of action is for the teeth to come out". Did not get any advice that maybe an Oral Surgeon should do it and prepare my mouth for dentures.
Having my teeth removed was a 'medical' decision and had nothing to do with dental or cosmetics/appearance. My teeth were actually not that bad. Approached insurance company and they refused to pay for the extractions. Now they are going to pay for the HBOT which I must have and, if I believe the Oral Surgeon they will pay for the removal of the tooth debris and the bone smoothing as a medical necessity. The cost of dentures will be on me. While, the surgeon said that implants (posts) are not ruled out explicitly for cancer patients like us who have been irradiated in the neck and head area there is always a real risk that implants will not heal and OsteoRadioNecrosis (ORN) (bone death)will be triggered. It happens sometimes without any injury or surgery to the bone and the fallout is not nice - surgeries and bone transplants to rebuild the jaw. That is what the HBOT is all about. To increase oxygen presence and promote healing so bone death doesn't occur. I am not having surgery on Monday. Monday will be my first HBOT session. I get to ly in a pressure chamber and watch TV or sleep for a couple of hours. I will do that every day Mon to Fri for four weeks (20 sessions), then have the surgery and then do another 2 weeks (10 sessions) afterward. I am currently negotiating with my employers about my working hours etc for the next six weeks or so. I will come back and update as thing progress
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