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has anyone out there first diagnosed with squamous cell after biopsy that showed up under your ear and down your jaw line? so far, they have not identified a orgin but are performing a procedure tomorrow that they put me to sleep and snoop around my mouth,throat and nasal/ear areas. I am very scared and have few answers or directives. My wife feels strongly about chemo as a horrible option. Any advice?
Cancer Surgery Acid reflux Dry mouth Yeast infections Breast cancer Chemotherapy Pain Prilosec Stress
sounds like we are in very similar boats my friend. Diagnosed Oct. 1st, by biopsy, mine is in my throat, but doctors have scheduled a second more extensive look around down to belly (and they are putting in a PEG tube then).And I was supposed to do only radiation, but because of latest neck scan now it is chemo and radiation, scheduled to begin Nov.30.
I was not too scared about the radiation date approaching, but I am scared of the chemo:)
Many others have gone successfully before us though so that is encouraging. We just need to be tough.
Please keep and open mind to the treatments. Chemo is poison and hard on the body, but it also kills the cancer. The nurses will check your blood counts before the chemo treatments and if they are not good, the treatment will be postponed until your blood counts are more normal. In my case, I was supposed to have 8 chemo treatments but only was able to receive 4 due to my blood counts. My oncologist said that this was not abnormal and 4 years later I am healthy. I just want to reassure you and your wife that you will be monitered closely during your treatments.
You and your wife are in my prayers,
Mimi
I had a procedure today, that they put me out and took a gander down my throat and around the mouth and so on. Took a couple biopsy pieces also. So far, it looks to not have a origin, which ENT doc says is good news. Today, is day of acceptance and looking forward with some fear, but hints of resolve. I pray for your best out come regarding your future procedure. Did you smoke and drink? I quit drinking 10 years ago, thought that would be soon enough. Lifes twist. Keep me posted about your future progress and my wife and I will pray for you. :)
You are very kind and your words of support meant alot to me and my wife. We did not know that they monitored your blood that closely. I had visions that they just pump the crap in there until you are fixed either way. Thankyou for your kind words and wisdom.
Wifey and me!!!
My friend My dad Started back in 1991 with cancer of the tongue a nonsmoker nor did he drink. In 1991 they removed part of his tongue, Dad was fine for 10 years and a spot came back on his tongue again. And his last battle started again in 2007,at the base of his tongue and on the right side of his neck. Never did they do chemo ,he had 45 treatments of radiation back in 1991 when radiation was not so perfected like it is today. His last doctors choose to treat my dad with chemo and Urbtux my family and I wish that dad would have been treated by means of chemo at first. The most recent battle with cancer was surprisingly the best ! Dad had no affects from the chemo may be a little sleepy the day of treatment but besides that he did everything food shopping ,baseball games ,cooking,ect dad also felt great no sickness like years ago. If we would have let him he would have went back to work. Dad was 72 and was manager at a local building supply yard. Dad always had a positive attitude he swore that is the main thing to keep in order to fight cancer, doctor after doctor could not believe how strong willed and positive he was. The combination of his attitude and the doctors is what worked. Also my mother in-law under went chemo during the time of my dads last battle with cancer,My mother in-law was covered with lymphoma cancer the same oncologist treated her. She lost her hair but other then that she went about life as if nothing was wrong. My friend chemo is not what it was years ago ask your doctors for all the details stay strong think positive eat well if only dad had met the oncologist that he last had, dad would have beat his cancer the doctors he had prayer only want to operate, the results of the chemo were so much more tolerable and affective with little or no side affects NO RECOVERY TIME like the operations he had in the past. Please think about the chemo don't let the name scare you it scared us but not dad he told the doctor "if you think it's right then sign me up and tell us where and when" My dads last two years were the best years I sorry and I don't mean to upset you by no means but dad passed away from complications caused by the surgeries, all the other signs were so positive while he was going threw the chemo all red and white blood cells improved all his blood work was improving week after week the spot on the base of his tongue showed no signs of growing the tumor in his neck shrunk and dad had some pimple looking spots around the area of the tumor on his neck they cleared up and never came back. His doctor wished he had met my dad years ago and we do too. I am sorry for the long story my point is if the doctors recommend chemo I urge you to do it, I seen the results of both multiple surgeries over the years and chemo IT WORKS!!!! And I understand your wife's concerns I had the same ones but to my surprise it was the best thing that happened to my dad during his 18 years of battling cancer.
God Bless
Tom Jr
points well taken. I am starting to feel that way. My frustration has been the time off work needed for chemo. With 2 college tuitions and regular bills, it made the alternative more attractive. But, maybe not worth the risk. Thank you for your kind words.
I would like to be another voice in favor of chemotherapy. You want to do all you can to save the functionality of the body parts that may be affected. I would also look at medical centers that do a combined chemotherapy/radiation therapy treatment. Things are getting better and more effective.
I also know people who underwent chemotherapy who worked right through it all. Jut relax, take lots of fluids and eat a low fat diet to keep the stomach settled. Also make sure you get the best anti-nausea drugs available. Ask your doctor about both oral and IV based anti nausea drugs. When I had chemo, the gold standard was Zofran, now that drug is generic. I am sure there are better ones now.
I understand your concern about college tuition payments but having had a 3rd round of cancer while i had 2 kids in college was made a bit easier when I sent a letter to the financial aid office from my doctor explaining my situation. Scholarship money went way up.
The worst that will happen is you wil have to eat into savings etc. It is not fun but you will find a way.
I'm not sure if our symptoms were the same or not, but mine first showed up as a swollen lymph node that was along my neck just below the jaw and extended up towards my ear. It to two needle biopsies and two CT scans to finally diagnose SCC which I found out originated from my tonsil. I did have chemo along with radiation because I felt that my doctors were experts that deal with this all the time and knew what the best treatment would be. No one wants to have chemo and I hated the thought of poison going into my body, but that has been almost two years ago and I know I would not be alive now if I had not done what the doctors recommended. I can understand your wife's feelings about this, but ultimately you have to follow your own instinct as for the best treatment for you. If you have great doctors that you feel you can trust, then you should consider what they advise. I would also suggest that you get a second opinion which I also did and ended up choosing the second doctor I went to. You have to feel good about your doctors and I hope you will find great ones. Paula
I have Squamous cell carcinoma in my jaw. I have surgery set for 12-10-09 where they will remove part of it and replace it with a bone from my leg. I did not smoke, ever. Mine started in the oral cavity (mouth). I'm hoping you are being treated by someone who has LOTS of experience with this kind of cancer specifically and not just someone who thinks he can handle it. My case was mismanaged by inept physicians who were not up on the latest therapies, causes or procedures. My new doctors (I have an entire team now) from UC San Francisco say that this type of cancer responds poorly to radiation and chemo as a treatment of first choice. Get lots of information and get a second opinion. I wish I had not wasted so much time being "treated" by my initial doctors who said they knew what they were doing but didn't. I now have specialists who treat only this as opposed to oral surgeons who only pull wisdom teeth and rarely treat cancer patients. By the way, my doctor says that 60% of the patients he sees had NO risk factors - so try to get past the blame game about smoking and drinking and concentrate on getting well. Hang in there and have a positive attitude.
pjradford,
You sound very close to what they are telling me. Exception would be that the Ear nose and throat doc says that the tonsil showed no signs. But yesterday while I was out in the scope, they took biopsy of them amongst other places. He seems convinced that it does not have a origin, which he says is a good thing. I do feel that the cancer center by where I live is a good facility. I must say that after yesterdays short stay at the hospital, I am more and more convinced that they have my best interest at heart. Now to just get past the thought of a feeding tube that they said I would require for the treatment. Sounds awful.
Hello, I also had cancer found all along my jaw bone,arround my ear. I had my first surgery and biopsy. they took out my parotid gland,sbmandibular gland and lymp nodes all are around your jaw and ear. My fist byopsy was close but wrong, Not squamacell but an even rarer cancer Adenoid Cystic carcinoma. The only way they can tell the difference is by doing three different test. so please find someone that knows the difference. I had my slides sent to Dr. David
Eisley. He is ahead of the head and neck clinic at the university of SanFransisco. Second, I would like to mention that none of of just get cancer overnight so with that in mind. Drive your own healthcare!!! Get at least two head and neck oncoligist oppinions. you have time!!!! As far as talking about kemo. I say as for the study results and weigh out the quality of life issues and possible problems that could result from kemo or radiation. Don't just think if they have a kemo drug out there you should take it. Find out the historic results, pro's and con's and most of all when you find out wat drug they sugest. Post it first and ask others before you make a decision. I understand all of us want to get things going as soon as possible after we have been devistated with the diagnoses. Again we didn't just get the cancer in a few weeks, months, and many times years before they diagnose it. learn and make a smart and comfortable decision. there are also many types of radiation out there to look at also. every one is different and everyones body is different there are not two of us alike, nor is there two of us that have lived in the same enviorment or had the same diet or genes,ect.... I've learn a lot over the last two years and I would be happy to be more specific on any of your questions or help in any way I can. If you want you can call me and I can help over the phone. The thing I have learned the most is the people that get the best care and are the most comfortable going through all this are the ones that take the bull by the horns and drive their own health care. there is no treatment or cure for my cancer. they only gave me 2 to 5 years because of it's progression but I can tell you I study a lot. I've learned the importance of diet and exersize togeather and best of all to talk to the people that are experienceing the same!!!!!! Best advice of all I say. Obey God and leave all the consequences to him. With much love, Dave Tipton
David, Thank you for your response. I had a fine needle biopsy that revealed the diagnoses of squamous cell carcinoma. Monday, I was put under and the did a exhaustive search per my onocologist and Ent doc. They took biopsy from mouth areas, throat and tonsil. Yesterday at the ONC doc, they gave a all clear on all biopsy taken that day. So far, a unknown origin. Onc. says that he believes the salivary glands are the origin. This makes sense and I thought this from the very beginning. Dry/cotton mouth. Pucker up when drinking and so on. Inoperable however, because the bulk of the mass is around the jugular vein. So.......Rad/chemo is best option they say. Meetings this week and next and some teeth need to be pulled and off we go I guess. Worst part for me, is the thought of having the feed tube. They are requiring that I do this. That is slightly freakin me out....
Please ask your Dr.if they rulled out Adenoid Cystic Carcinoma. It won't hurt to ask! My 1st ent and pathology of squamous cell carcinoma was wrong. the second oppinion I got was from University of SanFansisco. When I used them they were rated in the top 5 of knowledge and experience of head and neck cancers. Second, get the pek tube. I lost 65 pounds in four months and could have been within minutes of losing my life. It is not a big deal. But, if you refuse and you are to ill to do the surgery they won't be able to help you, honestly. It is a simple surgery and it takes a total of about 20 min. I was a dummy and refused it until it was to almost to late. I tell you from experience. It is you only safeguard. Not to mention how simple it makes the problem. WhenI was in the hospital they just hooked my tube up, like a iv. 1st they put osmolite in me. Which is all the essentials you need to live on. All they pumped in me came out my mouth. i was to sick to digest it and it caused me to constantly throw up. So, they put me on Ensure. it is made by the same company but it doesn't have as much of the ingeadients that help you digest it. that is the only difference between the two. Oh, no that is not true, osmolite it cheaper thats why the dr's gave it to me in stead of the good stuff Ensure because that is what my insurance told them. So keep that in mind. After I got well My wife bought all the ensure at walmart and the give you a big suringe to put it in the tube, she got all my medicine in liquids, so, I didn't have to try to make pills go down or have liquids burn my throat. The other good thing is that liquids are generaly of better quality and faster acting. They will show you how to take your risidules. What that means is you only put so much in youe stomach at a time, if you put to much, you will feel full, then bloated and if you go further than that your will burp it up. What they want to know is are you digesting your food. So, you will insert your food and then waite like 20 min.and you check your risidules (left over food in your stomach) by attaching that big suringe and sucking out the contents in your stomache and mesuring what came out. That is what your body didn't digest. It helps them, if you are in the hospital to determine the rate they can feed you at. The drip, like a I.V. It also tells them about you health are you digesting food. you will be surprised what radiation or even kemo does to you and they need to know how you are doing. That is the biggest thing that will help you go through it all easier or save you life. I cannot stress enough making yourself eat and getting the nutrician your body needs to stay well threw all the poisening of all cells good and bad. Further into your therapy you will be ill and last thing you want to do is eat and that will become your highest priority. That is why they and I am stressing you to get the pek tube. Trust me it is a God send with it and hell without it!!!! The other thing to consider is let your body heal from the surgery well before you start therapy it is a lot easyer on you!! You mentioned the dentist. This is standard practice. You must make sure you tell them about all your troubled teeth. you know best! You cannot afford risk of any infection especially in the head. Second, they know that you will not be able to go through dental work or tooth pulled ect for up to 2 years after treatment. It all depends on the person and the amount of radiation and the location of the radiation. They are going to be trying to miss you teeth and jaw bones as much as they can. They don't allways offer more protection you can put over you teeth during radiation, mainly I think because it adds to the discomfort and the mental trauma. But ask them about it. You are going to probable have a lot of tooth pain after the radiation and swelling.typically people get dry sockets. I don't know if you have ever had one but it hurts. Hot and cold and even breathing air threw your mouth after radiation can hurt bad. You will loose a lot of your saliva mainlt on the radiated side. Your going to have a very dry mouth. So, store up on your favorite bottled water because you wil be carrying it everywhere with you for a while. Leave some in each car so if you foreget you will allways have some. You will get sores all over your mouth and tung and throat some people hardly have a problem others have a really bad problem. you will get yeast infections in your mouth also and many times all through your whole digestive system from the radiation. That is another reason why the PEKtube and activia ids the best yogart during radiation. It is also very, very, stong and tends to burn the mouth. So, another reason for the pek tube. There is so much to share to help prepare and understand. please, don't let it be discouraging to you! At the treatment centers they will tell you these things as the time needs. mainly, they know all this can be so very devistating and they don't want to overwhelm you. I started help canceling people where i got my treatment and I was so blessed and so were the people I was priveleged to help go threw it all. I'am here for you and I know there are lots of us out there that have been there done that. None of us ever get the same exact treatment and none of us are the same. But there are many comman things that we can help each other with. I am allways available to anyone (559)859-2290. with the love Jesus Christ has put in my heart for you! Dave Tipton
oh you can reach me on my email. dtvisalia@aol.com,
sincerely, Dave Tipton
Oh, silly me. I just rembembered that I wanted to mention about your teeth. After the adiation damage, if they had to pull a tooth they are very hard to heal and most times they will not heal. Any time you go to a dentist after you have radiation they will want you to have your radial oncologist sign off of any work even cleanings for months to a year or longer. You just can't go to a dentist and tell them you want this done. Your radiation oncologist also will not start your treatment until your dentist signs that you are free of any problems or the work they had to do like pull a tooth is healed enought to start your treatment. So, do go to a good dentist you like and ask them to tell everyone that is going to work on you to be extra carefull even cleaning your teeth not to tear your mouth up. Again, I just want to help. i have no desire to discourage or make your heart heavy, but rather let you know that all of us out here are here for you and many of us have priceless information that can really help. It is very hard to post things like this for me when I don't know if the person is ready for it or if it will do the opposite and be that last thing that devistates them. My heart is I want so badly to help bring knowledge and experience because for me I fear more the things I don't know about then the things I do know at least something about. love Dave Tipton
I had a peg tube which was placed before I started treatments and this made going through treatment so much easier. At first while I was healing from surgery I was eating and did not need it. But it did not take long after radiation was started before swallowing became painful and eating of course was almost impossible. The feeding tube provided nutrition to my body. Some people have said they waited till they "needed" the feeding tube. The only problem with that is you are going through so much already, why have to go through another procedure?
I just want to reassure you that the feeding tube will be a good and well needed friend to you.
God bless you,
Mimi
Hi my partner Bob has a feeding tube since February (just after he was diagnosed) and it has been a life line. It does take a little getting used to but after a few weeks it will just become part of you,. He is also starting a new treatment next week. It is a combination of a drug called Eurbotox (sp) and Vectibix which is a targeted chemo and only attacks the cancer cells. This drug apparently has been used in colorectal cancers but our onc. said there has been recent good success in head and neck. We live in Ireland but our onc. Dr. John McCaffery spent many years in Sloane Kettering in oncology and is very up to date on all treatments . (in fact he will be in New York next week). Also please do not fear chemo. Bob continued to work through most of his previous chemo. and my best friend who has breast cancer has just finished her treatment with very little nausea or side effects at all. Plus if you do feel ill there are anti nausea drugs you can get. Many on this site have come through this and I am sure you will be one of them. Best of luck with your treatments I know you will be o.k.
Regards Marie
My b/f Drs didn't believe he needed a feeding tube only because he had so much weight he could stand to lose. And boy did he 80 lbs. His throat did not get real sore BUT he just couldn't tolerate the feel or taste of things in his mouth during radiation, He got down 3 shakes a day and they gave him fluids through out his treatments. But now 2 weeks after his radiation and chemo are over, he is still lacking energy or the taste for anything and the mucus makes it hard to swallow. He is anxious to get some energy back and is now going to talk to the drs about a feeding tube. His nutritionist is suggesting he needs 4000 calories a day to bounce back slowly. So I think if he had the feeding tube all along, he would be at a little better advantage at this point.
I had the feeding tube and still felt like your friend does, weak, mouth of mucus, nose running, no energy. First, the radiation has a cumulative effect. It is still working even though you are no longer in treatments. So you feel worse not better in the first weeks after radiation ends. Recovering from this is a slow and long process. My oncologist told me it would take 1 to 2 years to recover and it took every bit of that time! Truly I was in my third year post treatment before I really began to feel like myself again. And now 4 years out I had 2 people in the same week tell me "it finally seems the real you is back."
I am not telling you this to discourage you but to encourage you and let you know this is part of the process. Drink lots of water, keep it with you all the time and this helps keep your mouth moister. Go and do things you want to do, just rest when your body says rest.
I am here if your friend wants to talk or ask questions.
Have a blessed day,
Mimi
three thoughts on the proposed treatment.
1) Don't worry about the feeding tube it is the easy to deal with and unobtrusive. (just wrap the ends with adhesive tapes to preven inadvertant opening.)
2) Get the doctor's to prescribe a formula after treatment - while boost, ensure and generics will work fine, "mdedical formulas by Nestle and others can be cheaper and even if not covered by insurance, the receipts from on line suppliers can be included in medical expenses on your taxes.
3) Buy a water pistol. Radiation will be painful. I wanted to shoot my docs and thought up the water pistol after I was done.
4) sugar free lollipops are good for lubricating the mouth when swallowing hurts.
5) look at pilocarpine for the dry mouth after the radiation (will produe more mucous while you are healing but later on it will make talking and eating easier.
6) Buy a blender if you do not have one. The first think I hate after radiation was high calorie smoothies (1 cup Breyers ice cream; 1 cup fruit; 1 cap full of wheat germ, 1/3 cup non-fat dry milk or protein powder; and whole milk to cover) You can use higher fat ice cream but I did not like the taste. )
YOu could also add carnation instant breakfast instead of the non-fat dry milk to add vitamins.
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