Preparing for treatment
I am very new to all of this. I was diagnosed last week on April 11, 2012 with Stage III Squamous Cell Carcinoma of the Tongue. I had was I thought was a canker sore on my tongue since mid-January and went to my GP and my dentist 6 times combined and was told it was just a canker sore for 2 months. I was still concerned because it was not going away and had it looked at and biopsied by an oral surgeon. When I was told it was cancer I was very scared, but now my ortholerongolgist(spelling?) said that it was in Stage III with some abnormal lymph nodes, I have become a bit freaked out.
I found this group and decided to join because as much as I LOVE my family and friends, I can tell that they are looking to me for answers about "my condition" when I don’t even know yet what is going on myself.
So for right now I am preparing for treatment and the treatment plan from my team of doctors. I am very blessed because I am going to be treated by doctors at the University of Chicago and so far have heard nothing but good things about them.
I am sort of wondering about any advice of what to do before I start treatment. How can I prepare physically, mentally, emotionally? Who do I tell? How much do I tell them?
So any info is welcome! I also want to say that I am very glad I have found this and look forward to getting to know you all!
Dana
Comments
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Welcome Dana...
First of, try to relax a little...., I know much easier said than done.
But cancer these days is very treatable, as you'll see the many of survivors here. Some just starting like yourself, a lot several years post treatment like myself (going on three years post treatment, and many out past 10 - 15 years and going.
I know the anxiety well...January 2009 I was Dx STGIII SCC Tonsil Cancer (primary) and a lymphnode on the same side (secondary)..HPV+.
They took out the tonsils, and I went through nine weeks of chemo (Cisplatin, Taxotere and 5FU) in three week cycles, then seven weeks of concurrent chemo (weekly Carboplatin), and the 35 daily rads sessions).
SInce then all scans have been clean and I have regained all taste and nearly all saliva..all blood work is normal...
As for dealing with it and how you communicate to others, "we are all different"...same with recovery and healing.
Myself, I was very open about it...we (my wife and I) even started a group email list of friends, family and faith that we would communicate to and update on my status. It was very helpful for me to communicate and recieve positive encouragement.
To me I only wanted positive thoughts and energy...if someone started telling me of a firend or relative that had had cancer, I would stop them and tell then, "If this doesn't end positive, I'd rather not hear it right now".
Here is a link to the SuperThread, it's a compilation of helpful info and links that a lot of us have contributed to.
SUPERTHREAD
Others will be on to offer help an encouragement as well.
Try to not research or at least keep and open mind on what you see on the internet...there is a lot of old and outdated information and statistics out there..it's easy to get caught up in to that...remember you are an individual...again, everyone is different.
There are tons of individual specifics that set you apart from the many statistics and numbers...age, health going in, genetics, history...tons...
Thoughts and Prayers,
John0 -
Hello Dana...
I'm sorry you had to look for this board...but am SO happy you found it. For myself, finding this forum, and these people has been a god=send.
I, like you...am newly diagnosed...I found out I have NPZ Stage III with 2 lymph nodes involved, on March 26. I was suppose to start chemo and radiation today, but thats been delayed a few days due to a mishap in placing my chemo port.
I come to this board every morning for an infusion of courage, inspiration, a good laugh...I hope to see you here often...it's a good place to be.
p0 -
Danaphrannie51 said:Hello Dana...
I'm sorry you had to look for this board...but am SO happy you found it. For myself, finding this forum, and these people has been a god=send.
I, like you...am newly diagnosed...I found out I have NPZ Stage III with 2 lymph nodes involved, on March 26. I was suppose to start chemo and radiation today, but thats been delayed a few days due to a mishap in placing my chemo port.
I come to this board every morning for an infusion of courage, inspiration, a good laugh...I hope to see you here often...it's a good place to be.
p
I too have been newly diagnosed. I go for my cosult Wed. and am frightened and also hopeful!! Let's all just ride this bus together and encourage each other and get through it ASAP!!0 -
hello neighborMrs. Sarge said:Dana
I too have been newly diagnosed. I go for my cosult Wed. and am frightened and also hopeful!! Let's all just ride this bus together and encourage each other and get through it ASAP!!
Hi Dana, I am 3 years post for stage 4, base of the tongue cancer. I'm a Chicagoan and although I wasn't treated at The University of Chicago for chemo and rads I did have a neck disection there. it's a great place and you are in good hands. Welcome to the boards.0 -
Welcomeratface said:hello neighbor
Hi Dana, I am 3 years post for stage 4, base of the tongue cancer. I'm a Chicagoan and although I wasn't treated at The University of Chicago for chemo and rads I did have a neck disection there. it's a great place and you are in good hands. Welcome to the boards.
Hi Dana,
Sorry you had to join the club no one wants to be in. But in here you will find many answers to your questions and lots of very good people who help as much as one can via cyberspace.
I had a very rare case so coming here was quite necessary. Doing too much Googling can lead to anxiety and worries that you don't need right now. Listen to your doctors and just go with the flow. There really isn't much choice anyway. One must do everything possible to rid yourself of this cancer. Like John said, we have so many success stories here that the odds are in your favor.
My treatment just ended and I am just starting to recover from the radiation side effects. It took me six months to get to this point and am I ever glad to be here now. It is one procedure at a time. And depending on what is involved, you may be done much earlier than the time I went through.
Look up that Superthread and read some of the old posts about recovery. Keeping positive is very important. And it's up to you whether or not to share information. Some are very private and others like the support many people give.
Once Again, Welcome Aboard.
Tommy0 -
Sorry,ratface said:hello neighbor
Hi Dana, I am 3 years post for stage 4, base of the tongue cancer. I'm a Chicagoan and although I wasn't treated at The University of Chicago for chemo and rads I did have a neck disection there. it's a great place and you are in good hands. Welcome to the boards.
You find youself here, but you'll be so happy you did. You will find more info from
This board than you could ever imagine. And the positive people here are a blessing
They will see you through your coarse of actions with all the help and advice you need.
I was Dx with Tonsil cancer, a high stage II and I finished 33 rads on friday so now I'm in
The "cooking period" then on the road to recovery, this board has been a godsend
So please visit often and update us on your progress.
Oh yes, prayers to the man upstairs will help also.
God bless
Tonsil Dad,
Dan.0 -
HI DanaTonsil Dad said:Sorry,
You find youself here, but you'll be so happy you did. You will find more info from
This board than you could ever imagine. And the positive people here are a blessing
They will see you through your coarse of actions with all the help and advice you need.
I was Dx with Tonsil cancer, a high stage II and I finished 33 rads on friday so now I'm in
The "cooking period" then on the road to recovery, this board has been a godsend
So please visit often and update us on your progress.
Oh yes, prayers to the man upstairs will help also.
God bless
Tonsil Dad,
Dan.
Welcome to the Advise Capital of the H&N World !!
1. Talk to you Dr. about a PEG tube. We are probably 70-30 here on the site with 70% haveing a tube. I had one. Skiffin did without. Personal choice.
2. Get someone to go to Dr's office with you to take notes, you'll need the support.
3. Ask lots of questions for sure.
4. Eat all you want now and put on some weight if you can. IT will come off, trust me.
5. Get a good blender, food processor. liquid food will be your friend soon.
6. Keep a positive attitude and get a good supporter/caregiver. Wifes/husbands/friends are all good
All in all, keep on this site and get all the advice you can from the experts on this site. We are knowlegable, supportive, funny and most of all, we've been where you are once. I am 2 yrs post.
Give it all you have, it is doable and you'll be able to do it, be positive, positive, positive.
Good luck,
Steve0 -
HI DanaTonsil Dad said:Sorry,
You find youself here, but you'll be so happy you did. You will find more info from
This board than you could ever imagine. And the positive people here are a blessing
They will see you through your coarse of actions with all the help and advice you need.
I was Dx with Tonsil cancer, a high stage II and I finished 33 rads on friday so now I'm in
The "cooking period" then on the road to recovery, this board has been a godsend
So please visit often and update us on your progress.
Oh yes, prayers to the man upstairs will help also.
God bless
Tonsil Dad,
Dan.
Sorry for the double post...
Steve0 -
Danadcfogar22 said:Thank you everyone for the
Thank you everyone for the advice... Keep it comming and I am SO glad that I have fould this.
U of Chicago is top-notch. Fire34, here, also went there. Might wanna send him a Private Message. He stops in once in awhile, and is one of the success stories.
Hawk and John had excellent advice. Keep in mind, Dana, that the Drs know what they're putting us thru w/H&N. Keep them in the Loop as to how you are really doing. Pain/discomfort is gonna come your way, and it is best to avoid as much of it as possible, as it adds to your stress and body's struggle.
For me, Magic Mouthwash and liquid Morphine helped my mouth, and also did Hydrocodone. Sipped a lotta water, and ice chips are good. Your's being tongue, not sure about the particulars you will face, but my tongue and mouth took a hit with my NPC. You will hopefully be as amazed as I was at how well you heal, so don't worry none about that. You are gonna survive this thing. We all do. And current C treatment is quite advanced compared to the past- and there are a number of 15+-year survivors here, also. This is the big C, but your C is one of the best to have in terms of survival. And, you are in excellent care at the U of Chicago.
Keep us updated-
kcass0 -
So sorry you have to goKent Cass said:Dana
U of Chicago is top-notch. Fire34, here, also went there. Might wanna send him a Private Message. He stops in once in awhile, and is one of the success stories.
Hawk and John had excellent advice. Keep in mind, Dana, that the Drs know what they're putting us thru w/H&N. Keep them in the Loop as to how you are really doing. Pain/discomfort is gonna come your way, and it is best to avoid as much of it as possible, as it adds to your stress and body's struggle.
For me, Magic Mouthwash and liquid Morphine helped my mouth, and also did Hydrocodone. Sipped a lotta water, and ice chips are good. Your's being tongue, not sure about the particulars you will face, but my tongue and mouth took a hit with my NPC. You will hopefully be as amazed as I was at how well you heal, so don't worry none about that. You are gonna survive this thing. We all do. And current C treatment is quite advanced compared to the past- and there are a number of 15+-year survivors here, also. This is the big C, but your C is one of the best to have in terms of survival. And, you are in excellent care at the U of Chicago.
Keep us updated-
kcass
So sorry you have to go through this trial. But remain positive. You will get through this.
I had same as you. SCC base of tongue and lymph node issues. I am 5 years 4 months out and have no side effects, but everyone reacts differently. The phamplets and booklets are kinda scary. They are worse case scenarios. Fortunately, I had none of the serious issues. I cannot stress enough the value of dental hygiene before/during/after treatment. I went through this when I was 53. with your youth and strength, I am sure you will be fine.
As far as communication, I did not want to talk to or see anyone during treatment(besides my wife, daughter, and staff). I have never seen anyone on this site mention this, but there is a site called Caringbridge. It is free. You can update your condition and treatment daily. People can also leave messages for you. This was great because people can see how you are doing, but they don't have to bother you by calling ect.
Best wishes, and please keep us posted.
Mark Stevens0 -
Good luck to you!
There is a ton of great people here to help with your questions. My cancer was in the floor of my mouth, I don't know about the tongue, though I myself am going to have tongue biopsy soon. I'm going to read your replies too! Take care!0 -
FinishedTonsil Dad said:Sorry,
You find youself here, but you'll be so happy you did. You will find more info from
This board than you could ever imagine. And the positive people here are a blessing
They will see you through your coarse of actions with all the help and advice you need.
I was Dx with Tonsil cancer, a high stage II and I finished 33 rads on friday so now I'm in
The "cooking period" then on the road to recovery, this board has been a godsend
So please visit often and update us on your progress.
Oh yes, prayers to the man upstairs will help also.
God bless
Tonsil Dad,
Dan.
Hey TonsilDad Dan,
Great to read you are finally done now too. I wasn't too sure just how far behind me you were. Isn't it nice to be on the other side of treatment? My cooking just hit the two week mark so I am hoping some of my mouth issues will resolve themselves. My taste buds are working at around 60-70%. What I can't taste at all is sweets. Put some sugar on my tongue and nothing. So much for a sweet tooth!
Let us know when your taste buds return. And how is the dry mouth?
Tommy0 -
infokingcole42005 said:Good luck to you!
There is a ton of great people here to help with your questions. My cancer was in the floor of my mouth, I don't know about the tongue, though I myself am going to have tongue biopsy soon. I'm going to read your replies too! Take care!
Dana, my rad onc told me before treatment started that it is one of the easiest cancers to treat and has one of the highest success rates. Best wishes!
Mark S.0 -
Sorry you have to be here
Hi Dana,
Like you I too am new here. The people on here are wonderful. They will listen to you and help you and even make you laugh so hard that you just might pee your pants!
I may not have the knowledge of this cancer (I am still learning also) but I can offer a "shoulder" too cry on or an ear to "listen"
Hang tough and we all will help you through this.
Renee0 -
Easiest Cancers to Treatmls351w said:info
Dana, my rad onc told me before treatment started that it is one of the easiest cancers to treat and has one of the highest success rates. Best wishes!
Mark S.
I've never heard that before, nor the reference to the highest success rates.
But regardless, H&N Cancer Treatment is one of the roughest regime's out there. Not making light of the rates and successes, but they do come with at least a rough road for several months for most.
Very doable, and true as seen here a tendency of very survivable outcomes.
Faith, Family and Friends,
John0 -
success ratesRinMinn said:Sorry you have to be here
Hi Dana,
Like you I too am new here. The people on here are wonderful. They will listen to you and help you and even make you laugh so hard that you just might pee your pants!
I may not have the knowledge of this cancer (I am still learning also) but I can offer a "shoulder" too cry on or an ear to "listen"
Hang tough and we all will help you through this.
Renee
John, I will stand by my comments. The local ear/nose/throat doc which performed the biopsy on my tongue said I had a 50% chance of living five years. I lived with that comment for four weeks until my first visit with my rad onc. When I related his comment to her, she got reeeealy peeed-off. That's when she made the comment about the ease of treatment and success rate.
Ease of treatment does not mean ease of trauma on the patient, but ease of ability to fight this crap. I know this is a serious procedure. There are so many things to deal with dealing with head and neck issues. Taste, saliva glands, speech, swallowing,teeth, jaws, and on and on. I went through hell with the neck burns and sore throat. As I have said before I am completely recovered with no issues what-so-ever, and I credit her with the results. Now maybe she said this to ease my concerns, but I don't believe she would lie to me. She visited with me every day of radiation. She is one of the most important persons in my life and I told her so. She gave me her cell number and told me to call her with any question or concerns 24-7. I would have her baby...lol.
It seems like I am the most fortunate person on this board due to my successful treatment and recovery and the close relationship I had with my caregivers. It seems to me that no one else on this board had any relationship with their caregivers since I never hear anyone speak of them.
You have a good day and thanks so much for your many heartfelt comments to all!
Mark S.0 -
Hi Mark,mls351w said:info
Dana, my rad onc told me before treatment started that it is one of the easiest cancers to treat and has one of the highest success rates. Best wishes!
Mark S.
Actually it depends on the grading of the tumor and age of the person. High grade MEC has low 5 year survivability and high recurrance (which my tumor was. ) As for easier to treat, maybe he said this because you don't receive chemo with it unless there is metastasis, as it doesn't respond to chemo AT ALL. I don't consider being on morphine and not being able to eat for weeks, having a skin graft removing the floor of my mouth, being on a feeding tube, being in the hospital for 10 days, not being able to speak, having facial paralysis, and missing part of my neck being easy. Your rad onco is a very misinformed person and I'm a little offended that he thinks its such a cake walk.0 -
Btw, you did not have MEC you had SCC verymls351w said:success rates
John, I will stand by my comments. The local ear/nose/throat doc which performed the biopsy on my tongue said I had a 50% chance of living five years. I lived with that comment for four weeks until my first visit with my rad onc. When I related his comment to her, she got reeeealy peeed-off. That's when she made the comment about the ease of treatment and success rate.
Ease of treatment does not mean ease of trauma on the patient, but ease of ability to fight this crap. I know this is a serious procedure. There are so many things to deal with dealing with head and neck issues. Taste, saliva glands, speech, swallowing,teeth, jaws, and on and on. I went through hell with the neck burns and sore throat. As I have said before I am completely recovered with no issues what-so-ever, and I credit her with the results. Now maybe she said this to ease my concerns, but I don't believe she would lie to me. She visited with me every day of radiation. She is one of the most important persons in my life and I told her so. She gave me her cell number and told me to call her with any question or concerns 24-7. I would have her baby...lol.
It seems like I am the most fortunate person on this board due to my successful treatment and recovery and the close relationship I had with my caregivers. It seems to me that no one else on this board had any relationship with their caregivers since I never hear anyone speak of them.
You have a good day and thanks so much for your many heartfelt comments to all!
Mark S.
different cancers, very different treatments. Maybe she was referring to SCC as east tp treat. MEC is not so easy.0 -
U of C rocks!
Didn't Lance get treatment there?
Anyway, sorry you got cancer. Everyone's sorry I'm sure but I'm really sorry because I've had it for a couple years now and it sucks and I hate for anyone else to have it.
Good news: um; you should go hiking everyday!
Bad news: I'll leave that up to the docs.
Prepare physically, emotionally and mentally the same you would for any battle that is life or death.
Tell the ones you love everything.
Tell the ones you don't love the rest.
Do your research.
Ask as many questions as you want.
Sleep late if you need to.
Make friends with your local library.
Consider things you might not normally consider.
Don't eat things you probably shouldn't.
Pray.
Yoga.
Smile.
AB0
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