Trying To Deal With Diagnosis
It's been a few weeks since all the tests and biopsy confirmed cancer at the base of the tongue. Lymph nodes on right side are swollen. It's difficult when the only real symptom I'm experienceing is the occasional difficulty in swallowing some foods and now have to reconcile myself to the fact of putting myself through the hell of 35 rads and 3 chemos over seven weeks. Going for the mask fitting tomorrow and the chemo onc on Thursday. Also the on-site dentist at some point this week. I so do not want to lose teeth before-hand, They also want to put a peg in before I even start the treatments. All of this is very overwhelming. Live alone with no family around, not sure how I will get through this. Have read many of your stories on here...I really hope I can find the intestinal fortitude to go through the things so many of you have had to deal with. Thanks for listening.
Comments
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Welcome
Welcome to the club that no one wants to join. You have found a group of very supportive folks. First of all I suggest that you read the Superthread, information for before, during and after treatment. If you have some questionable teeth you will want them taken care of before treatment. Do you have family or friends that you can call on for help? Some get through treatment with minimal problems. Be prepared. If you can pack on a few pounds before treatment it is a good thing. Stay in contact and we will help you through this.
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WelcomeKTeacher said:Welcome
Welcome to the club that no one wants to join. You have found a group of very supportive folks. First of all I suggest that you read the Superthread, information for before, during and after treatment. If you have some questionable teeth you will want them taken care of before treatment. Do you have family or friends that you can call on for help? Some get through treatment with minimal problems. Be prepared. If you can pack on a few pounds before treatment it is a good thing. Stay in contact and we will help you through this.
Hi, just finished 3 chemo and 33 rads last week in UK. Didn't have PEG but a lot swear by them. Got a sore throat and fatigue. On painkillers. My primary site was tonsil but you will get a lot of advice here. There are many great people who have been through this. G.
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Hi just went though 35 rads
Hi just went though 35 rads and 12 weeks of the drugs.Had part of tounge removed and all teeth pulled during operation.Took muscle from thigh and made tounge flap.All in all think I'm doing ok.Did have a peg tube put in and don't worry it is a life saver as you go though treatment you won't want to eat but do increase cans of food.And try to swollow as much as you can.Next Friday get the trach tube finally pulled and not really worried about the peg.Just take one step at a time and let yourself get down.Before you know it you'll ring the bell loud and clear.Very good advise here that will get though this and on your way to recovery
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Got hung up on your intestinal fortitude
I had no intestinal or abdominal fortitude when it came to the tube. I did fare better with the radiation and managed to continue my daily exercise routine throughout with modifications.
Had BOT stage III HPV+ cancer with one lymph node positive and a left neck dissection and TORS. Then 33 TOMO radiation treatments. No teeth pulled, but now dealing with lots of cavities and tooth erosion.
I think having the tube for me was the worst part of all of it, nothing but chronic pain and having another thing to take care of. But then in my cae the first tube failed, came out, and I ended up in the ER they put in a temporary one which also dislodged, and had to go back and get another tube 2 weeks later. My theory is my body totally rejected it and the balloon leaked and collapsed.
I is a long story, but basically, I was fortunate to be able to swallow the entire time (mostly liquids) so I really did not need a feeding tube in the first place! Not everyone is able to manage without one however and each person is different.
If I had it to do over, I would take the "wait and see approach", and get one if I needed it. In my case I would have been lucky enough to not have needed one.
Best of luck to you and hoping all goes well and that you have some good friends to help you through this.
PJ
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welcome
JC F,
Welcome to the H&N forum, so sorry you find yourself here.
I was also BOT with lymph node involvement. I had no pain or difficulty, just a swollen node to lead the way.
I started with 28 teeth and still have them all. My rad onc did request a call from my dentist before treatment began.
The mask fitting is often described here like getting a warm facial. It is a little confining, but quickly over.
The PEG is great if you need one and an extra belly button if you don’t. I had two with one coming in the middle of treatments. They were easy to install and use, but looking back I may have been fine without as I always managed to drink one meal a day.
Try to round up someone to help you or services you can call as this treatment can be a challenge once the side effects kick in. We can only predict how hard it will be, the H&N clan runs the gamut on easy or hard.
You can do it, we all did, with many of us confused and scared. After you start, you will find your groove and do fine.
Good luck,
Matt
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Thank You
Thank you for the helpful reponses. I've never felt more alone in my life and it's encouraging to know there are others that can relate their own experinces to this horrendous disease. My emotions are riding a full roller coaster every day...I need all the encouragement I can get.
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Form a teamJC F said:Thank You
Thank you for the helpful reponses. I've never felt more alone in my life and it's encouraging to know there are others that can relate their own experinces to this horrendous disease. My emotions are riding a full roller coaster every day...I need all the encouragement I can get.
When I had a similar diagnosis (BOT, Stage 3+, HPV- [yes, negative]), I made a statement that "There is no `I`in cancer" and with my wife as captain, formed "Team Mike" to help me through it--for support, communicating with doctors and pharmacists, making and getting to appointments, and helping me make decisions. I understand that you are alone, but would encourage you to find a neighbor, friend or home care nurse who can help you. Even if it's someone who can check on you daily in person or by phone, you'll need to let someone know how you are doing on a regular basis and when you need something fast. The chemo + rads treatments can be survived, but it's a long struggle and some emergencies can pop up.
As for the PEG tube, it was a life saver for me. My ability to swallow went away quickly and it took three tries to get the tube inserted. Another few days and it would have been a major procedure to get it inserted. Think about it like an umbrella--it's better to have it and not need it, than to need it and not have it. Your docs can give you their best advice, but if they think you 'might' need it, then think about getting it done.
You have found a great community here, so be sure to check in with us often.
Mike
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Hi JC FJC F said:Thank You
Thank you for the helpful reponses. I've never felt more alone in my life and it's encouraging to know there are others that can relate their own experinces to this horrendous disease. My emotions are riding a full roller coaster every day...I need all the encouragement I can get.
So sorry you've joined our little group, but you've come to the right place. This is all very doable - speaking from my vast experience (4 years ago YAY!) of two surgeries, six rounds of cisplatin chemo, eight straight weeks of radiation for a stage 4 base of tongue cancer with metastises to lymph nodes on both sides of my neck. Also - I had the PEG tube, and found it to be a real life saver. I was able to comfortably feed myself through the tube when eating by mouth became too uncomfortable and was taking way too long.
Most importantly - where are you located? Where are you being treated. Members of this group are located all over the continental US and several foreign countries. Perhaps one of us is close to you?
Deb, located in central California.
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welcome JC F. very glad you
welcome JC F. very glad you found this site as it/we will help you thru this trip. i had cancer of the larynx in 2009 and had 35 rad tx. then recurrence in 2012 and had neck dissection and laryngectomy. that was 2/28/12 and i've been cancer free since then. many here have had the rads, surgery and chemo and have come thru it and you will too. please come here with any questions, when you need to vent, when you want to share a good day or any other feelings you want to share. i promise, we've probably felt the same way. i hope you have a good friend(s) who will help you thru this. when your friends offer to help, LET THEM. you don't have to do this alone. we will all be here on the sidelines cheering for you as you go thru tx so be sure to let us know how you are doing. the superthread, at the top of the topic page, has lots of great info that will help you thru tx and may answer a lot of questions you may have. this will not be a piece of cake but it is doable as so many of us here are LIVING proof. i look forward to the day i read your post of your last tx. we will celebrate with you when you ring the bell indicating that. come here as often as you like, someone is usually always here. the roller coaster ride will seem to slow down in a bit. once you get stated with tx, you will be too busy for your mind to run wild...lol. bottom line is, JC F, you will get thru this. keep us posted on your progress.
God bless you,
dj
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Hi JC
It is hard at first trying to understand the why me stuff but you will get over it as time goes on. The good part is you can beat this cancer and be normal once again. You need to get focus on being positive and aggressive in doing all you can to stay as healthy as possible while going through treatment. The PEG tube is one way and getting what teeth repaired or removed is another, you will do well and be a survivor and this one day will all be in your past.
Welcome to CSN H&N you are in the right place so please plan to stay.
Hondo
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JC , Hello.
I want to wishJC , Hello.
I want to wish you goodluck in the days to come. Stay positive. my diagnosis is different than yours so i cant really give u any adivce. But i want to tell u that u write here whenever u feel and we will be here for u.
I pray for u, its sucks when we r freshly diagnosed. but keep faith and stay strong.
Smiles sent your way,
Goyca.
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Support teamGoyca said:JC , Hello.
I want to wishJC , Hello.
I want to wish you goodluck in the days to come. Stay positive. my diagnosis is different than yours so i cant really give u any adivce. But i want to tell u that u write here whenever u feel and we will be here for u.
I pray for u, its sucks when we r freshly diagnosed. but keep faith and stay strong.
Smiles sent your way,
Goyca.
I was blessed to have a close family nearby. It's important to have support, whether it be this forum or maybe a local support group. Ask your doctor what is available for you locally. I imagine you will have in-home therapists coming when you get home. It is natural to be scared but this is doable. Not easy but you will get through it.
Prayers sent your way
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Welcome.....
It's hard to deal with this diagnosis and you certainly are not alone. You have found the right place for questions, comments, and support. I am a caregiver to 53 yr old male dx Aug 2012 with BOT (2 lymph nodes same side involved) HPV +. He finished tx end Nov 2012 and that consisted of 35 rads and 7 chemo. He did also get a peg tube, but late in the game. I would highly recommend getting it ahead then to get it during tx when things get hard to swallow. Stock up on some Ensure or Boost to keep you calorie consumption up. Also be sure to check out the SUPERTHREAD at the top of the forum and read through that, there is a lot of valuable information there. This is completely doable, but tough at times. Maybe you could get a friend to come live with you during your journey. They could help with meals and also give you needed support so you are not alone. But, remember everyone here knows first hand what you are going through.
~C
P.S. ( PET Scan in Feb 2013 said NED- He is almost 2 years out)
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Inching Closer to D-Day
An appropriate metaphor I suppose as the actual WW2 D-Day just passed. Had the back of head, neck and shoulder mold made today along with the teeth mold and the infamous "mask". Another CT tomorrow and then the chemo onc on Thursday. I come here everyday now to read everyone else's posts and try to gain strength and encouragement from everyone's stories. Was asked earlier where I am at and I'm located in Canada actually right outside of Ottawa Ontario, the capital. I live right behind the hospital that is treating me and walk to it everyday, about a seven minute walk...not sure how long I will be able to make that walk after I start the treatments though. It's hard reading some of your stories but I really do gain a lot of positives from the strength that everyone shows...I hope I can get through this with the same resolve I read here...thanks again for listening...
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best of luck to youJC F said:Inching Closer to D-Day
An appropriate metaphor I suppose as the actual WW2 D-Day just passed. Had the back of head, neck and shoulder mold made today along with the teeth mold and the infamous "mask". Another CT tomorrow and then the chemo onc on Thursday. I come here everyday now to read everyone else's posts and try to gain strength and encouragement from everyone's stories. Was asked earlier where I am at and I'm located in Canada actually right outside of Ottawa Ontario, the capital. I live right behind the hospital that is treating me and walk to it everyday, about a seven minute walk...not sure how long I will be able to make that walk after I start the treatments though. It's hard reading some of your stories but I really do gain a lot of positives from the strength that everyone shows...I hope I can get through this with the same resolve I read here...thanks again for listening...
as your journey starts. You're not alone in this...we are all here, and we're FAMILY! I give all the credit to God and this group for getting me through treatments. You won't find a better group of people, supporter, encouragers and friends than here. I had a PEG (didn't want it at ALL), but ended up HAVING to get it and it truly was not a big deal. Easy in/easy out and it basically kept me nourished when I couldn't eat. I was terrified and found such comfort and peace on this site. Remember...we are all here...ask/vent/post/encourage...we have it all here and welcome you with open arms!
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Support group
I live in UK and my hospital is a top hospital for most cancers. We have a Maggies' support group inside the hospital where you can go for coffee and talks with specialist councillors and group with people with the same cancer as yourself. they put you in touch with benefits and any support you need for your cancer treatment. I got a car that picked me up every morning (free) for my radiotherapy. There are also McMillan nurses that support you throughout cancer treatment they will call to the house. What I'm getting at is there anything like this to help you through inside your hospital, I think most hospital have these things. As your on your own this would help you. When you go to your next clinic appt ask if they have booklets on this. I had back of tongue cancer and 3 cancerous lymph nodes, now it seems like a bad dream now it's all finished. the rads went quicker than I expected I didn't have any pain just a few discomforts. Radiotherapy did damage my esophagus but I was told this is very rare and I'm going through ways to treat this. You will find once you start on your treatment you won't be alone the doctors and nurses become your friends and call you by your first name, they will be your main focus until you finish treatment and believe me and the other friends on this site it goes past quickly. You' ll soon be on your last rad and that's the really good part.
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Hi Jackiejackflash22 said:Support group
I live in UK and my hospital is a top hospital for most cancers. We have a Maggies' support group inside the hospital where you can go for coffee and talks with specialist councillors and group with people with the same cancer as yourself. they put you in touch with benefits and any support you need for your cancer treatment. I got a car that picked me up every morning (free) for my radiotherapy. There are also McMillan nurses that support you throughout cancer treatment they will call to the house. What I'm getting at is there anything like this to help you through inside your hospital, I think most hospital have these things. As your on your own this would help you. When you go to your next clinic appt ask if they have booklets on this. I had back of tongue cancer and 3 cancerous lymph nodes, now it seems like a bad dream now it's all finished. the rads went quicker than I expected I didn't have any pain just a few discomforts. Radiotherapy did damage my esophagus but I was told this is very rare and I'm going through ways to treat this. You will find once you start on your treatment you won't be alone the doctors and nurses become your friends and call you by your first name, they will be your main focus until you finish treatment and believe me and the other friends on this site it goes past quickly. You' ll soon be on your last rad and that's the really good part.
Im also in UK. Wise words by Jackie. I could manage to get to treatment with family /friends etc but I found company, especially that of fellow patients really helpful. Like an extended version of this site. I wonder if CSN have any groups in the area?
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mask and peg
I know the feeling of being overwhelmed,I too had the overwhelming task of the tube and mask,but this is doable and I would probably ask your hospital if they have someone that can give rides back and forth for treatments,We have them here in texas,I had family here and I think they were getting kinda tired of taking me in after while.These treatments can sometimes get you down and tired and you don't want to miss any if you can help it.The tube is mainly for if by chance you start having problems swallowing,some on this thread went through all treatments and didn't need to use a tube and some of us needed it,If you do need it you'll be glad it's there,keep hydrated if by mouth or tube whatever it takes.If you need anyone to talk to that has or is experiencing what you are going through this is a good place to start and I think they have the chatroom fixed too,Anyways glad you found this area and if you need us just give us a hollar.
Chris
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So sorry you're going through this
This disease is for the rough the tough and the very strong. My husband has amazed me in what he has come through so far. I truly hope you can find a good support system to help you get through it. I know the facts you're getting can be overwhelming but try to take it one day at a time, deal with it as it comes. Life will change, but you have to have great fight in you, determination to be stronger than this disease. You can do this....you can be a surivor, overcomer. Attitude is everything.
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