Dear Group,
Hello, I'm new to this group and would like to introduce myself. I am hoping someone will read this and offer me a bit of support. I'm a healthy and energetic high school teacher. This is my 33rd year of teaching. This year I am teaching full-time German, but in the past I have also taught French and English. Every summer I take a group of travelers to explore Europe. The students and I travel to Germany. In my adult groups we have explored France and Italy in addition to Germany.
You can imagine my shock when I found out that I have cancer at the base of my tongue, which moved into the lymph nodes of my neck and which is currently possibly in the lymph nodes of my chest.
Imagine a foreign language teacher, trilingual, without a fully functioning tongue!
It has been six months since I have been diagnosed. I have a lot of pressure on me right now to begin treatment. Radiation and chemotherapy are the only two treatments upon which all doctors agree. I am investigating a hyperthermia/chemo approach. In this, a 104 degree fever is induced and maintained for a six hour period on the same day that the first dose of chemo is administered.
Bottom line: I am DEATHLY afraid of radiation!! I am wondering if I should say no to all treatment and accept the consequences rather than allow my saliva/parotid glands to be destroyed.
Might I add that I have been treated for severe rheumatoid arthritis for the past ten years? I do not even know what it is like to live without pain. Seems to me that chemo and radiation are just going to increase the already high level of pain AND burn up my healthy cells.
Is there anybody out there who can shake some sense into me? I truly do not know which way to turn!!!
Yours,
Johanna
Hi Johanna,
You sound like a pretty tough cookie.
I had radiation/chemo as shown below, and made it through relatively well - I am pain free from the radiation and chemo other than an occassional minor sore throat on one side (I still have some stiffness and muscle fatigue from the neck dissection, but these are minor relatively speaking). Everyone one is different though, and some take the treatment harder than others - but they make it through!
There's a thread from yesterday where I and others discuss saliva issues after treatment (see "Newbie" below started by kenk - you can also search the forum under "saliva"). There are measures intended to protect the saliva glands during radiation treatment as well as medications intended to stimulate the saliva glands after treatment to help get them functioning again.
To me, the saliva issue is not so serious that it would weigh at all in the consideration to treat or not treat the cancer. Everyone's saliva issues will differ according to the individual, and I for one have been making saliva and I'm only 5 months out of treatment.
But we all know where untreated cancer goes, and to me that doesn't seem like a very good option. You will find a wealth of caring and support on this website from people who have had radiation/chemo or been caregivers to loved ones, helping them through.
Best wishes,
Chris
what a difficult time you are having ,but if you have been diagnosed for six months ,your time left for sitting on the fence is coming close to its limit.My husband was going to kill himself when he was diagnosed and he is only 44 Now he has had radical surgery and is only ten treatments off the finish.It may sound horrendous ,and it is ,but the alternative doesnt even bear thinking about.
Pain is controlled with the liberal use of drugs that will help and just think about the reactions of your family and friends if they found out you werent going to battle this disease witheverything available to you.I know that quality of life and life expectancy are two sides to the scale ,but dont give up without a lot of soul searching and information.
Love Liz
Tag Johanna,
Wie geht's? Bist du krank?
My mother taught (retired) German in my high school and I had 2 years of it. So we have that in common. Unfortunately, we also have cancer in the tongue in common too. Not a fun club but a surviable one (living proof here).
I can relate to your worries about being able to speak different languages. You see, my mother was also an award winning choir director at my high school, so of course I grew up singing. It was my natural born gift and was always easy for me. It was drilled into me to have good diction while singing. On top of that, my father was a Voice and Diction, plus Speech professor at the university in my home town. My biggest fear when I hear they were going to cut part of my tongue out was that I would loose the one true gift I had been given in my life. Well, 4 years out and I can sing but not 100% like I used to.
Bottom line, is you will adjust to life after treatment. Treatment is worth doing. I know that you are looking at an unclimable mountain of information right now, but take little steps and get the treatment started.
If you have any questions, let me know.
Take care and fight hard.
Tchuss
Jim
Dear Johanna - You have received incredible encouragement from the folks above and I just want to add to the encouragement. You sound like an incredible person and you have so much to offer the youth of our world and fellow travelers - and it sounds like you truly love what you are doing - so, keep on keeping on - you will just have to go down this road, take the bumps and it will lead back to your main highway. It is all so frightening at first and so much to absorb but with all of us here to answer your questions, calm your fears and give you hope and encouragement, you can do it.
Take care and stay in touch,
Marty
Johanna,
If you were diagnosed 6 months ago and there are signs of spread to lymph nodes, I understand why you are under pressure to start treatment. This disease is very unforgiving and typically needs to be dealt with aggressively as soon as possible.
There are a good many of us here whose livelihoods depend on speaking and/or singing, so you are far from alone in that respect. I was 39 and otherwise healthy when I was diagnosed (18 years ago), and the doctors at my cancer center told me I needed both surgery and radiation. I ended up losing part of my tongue, as well as some salivary glands and lymph nodes, and dealing with dry mouth problems for quite some time after radiation. However, when I was treated, there were no preventive measures that could be taken to try to spare salivary functions -- that is quite different now. Even though I had none of those preventive steps, I've still been fortunate to regain quite a bit of salivary function.
It sounds as though you've heard plenty of radiation horror stories, and I think most of us here who have had it will attest that it was a tough ordeal to get through. However, I found that once I got past the months of radiation (and recovery from it), the longer-term effects that I experienced were more at the nuisance level, and I've never regretted having had radiation. I kept on with my career, went back to singing in my spare time, and have been able to take on volunteer roles with several local charities.
Please don't let yourself be consumed by fear at this point. If you have a consensus from an experienced head and neck cancer team about what needs to be done in your case, please follow their advice. You'll find lots of support here for any questions or concerns you may have along the way.
Cathy
Johanna,
I'm not going to baby you like some of the above. You are flat out crazy to have waited 6 months after being DX'ed with BOT SCC with mets to multiple nodes without starting TX. You were a Stage IV 6 months ago and it certainly hasn't gotten better. You will flat out DIE if you don't get this treated. There are no miracles so stop waitng for one. Run as fast as you can to the nearest Cancer Center and pray that the 6 months you threw away doesn't cause you to loose your life. This site is devoted to people that want to help themselves so join us in our common fight against this horrible disease.
Johanna - I can't believe you waited 6 months!! When my son's biopsy results showed Stage 2 cancer, the doctor's office made an appointment for him with the surgeon for a week later and we were all so flipped out anxious crazy, my ex-daughter-in-law called and got us an appointment for the very next business day! I know what you mean about being able to use your tongue as a teacher. Until I retired a year and a half ago, I was teaching French and Spanish. Your life is worth more than just your tongue. There's a lot more you can do with languages besides use your tongue i.e. translations, online distance teaching, corrrespondence school teaching are some that I've done. You have to start fighting this! I sure hope David did shake some sense into you!
Johanna,
6 months wow !!! I was a stage one and from diag Jan 22 ----I was in surgery on feb 9th... I dont know what you are waiting for !!! Your life will change ..no one will disagree there ..but do nothing ..your life will end. I had tongue cancer as well and I am a young mom(35) of 5 so I as well need to speak ( YEll). i also coach kids school teams .....You can do this...It is like a journey....Not like all the others you travel to europe, but none the less a journey, One you need to make and as scary and as rough as it is and is going to be I dont think you will regret it , you will live to tell about it . And luckily for you , you can speak other languages so you would be able to help others in other countries by telling your story ....Try to find a positive ..it helps. My Motto is Take everything one day at a time and some days on moment at a time and all is possible. I had no Risk factors ..No idea why I was "BLESSED" with this horrible disease.....But I believe that we dont have a choice in the hand we are dealt ..only how we play the hand...If you dont start playing my dear ...you are going to lose. Cus bluffin dont work in this game !
I'll jump on the David-AnneMarie-Sharlee pile-on and strongly urge you to get treatment ASAP!! If you continue on your current self-destructive course, YOU may make it too late to do any good; you posted here for a reason...
It may even be possible to treat you with radiation and spare your saliva glands!! Ask your Docs about IMRT and gland/dental stents; a friend had both at Anderson CC and came out with lots of saliva.
Stent Worst case, even if you couldn't speak, you can still read and write to use your language skills.
Hopefully, you are within reasonable distance to see the cancer treatment specialists at the Moffit center in Tampa and discuss some options besides denial.
Johanna,
I may not be as blunt as David and I commend him for his directness, but you really need to get your priorities straight. "Wondering if you should say no to all treatment" should not be an option. Dying from oral cancer is a HORRIBLE way to go. I have only been a member of this forum for about 2 years and we have lost quite a few wonderful people during that time. I can tell you if you want to have a reason to change your mind, click on the link below. You will read a blog written by a very strong mother who watched her lovely daughter die from oral cancer. She wrote this story to try to help others. You can be one of those that she helped.
http://www.oralcancerfoundation.org/cgi-bin/ultimatebb.cgi?/ubb/get_topic/f/14/t/000005.html#000000 I recently referred a writer for a dental magazine to Rosie in the hopes that she would share her daughter Heather's story with the dental profession and as a result, it would help increase the number of people benefiting from early detection. Despite how difficult it must have been to do so, Rosie seflessly relived the horror of Heather's courageous fight in order to help others.
I pray that you will decide that your life is worth fighting for and that you are succesful in this fight. You are in the right place for guidance here and you CANNOT afford to waste another minute.
Jerry
To Johanna from Amy in the Oz- just 2 questions- #1. are there things you still want to accomplish in your life and are they worth fighting this for? #2. Do you have your life in order, if in fact you decide not to fight?
Johanna,
I am also a base of tongue patient/survivor and completed the prescribed drill of radiation and chemo. I worried myself sick because of it taking my medical team 1 month to the day from the day of my diagnosis until my first day of radiation treatment. It just took that long with getting the preliminaries out of the way to get things going.
Go forward with your radiation and chemo treatment now! Do not wait any longer as that will resolve absolutely nothing! Yeah, I was scared of radiation too but I never even considered eventual death, slow and painfully, as an alternative course of action. Never thought twice about it. This is on top of the fact that I am self-employed with a one man (me) company with a business that requires a lot of oral communication with people. Imagine the momentary fear I had under those circumstances with no employer except for me to lean on, no disability plan to call on, no leave of absence benefit to utilize, no accrued paid vacation to grasp at and no other skills in my back pocket to fall back on in the event of a resulting speech impediment or chronic dry mouth to deal with. All of those things darted through my head but made no difference. I simply had too much to live for with having to raise a 10 year old grand son at 59 years of age. I went for the recommended cure and simply decided to deal with any residual consequences that came along one at a time.
I had the best of care givers in the form of my loving and concerned wife along with a stadium full of relatives cheering me on and praying like there was no tomorrow. Yes Johanna, I simply did what I knew it would take and shunned the idea of any "new age" type treatment forms offered for the most part by folks who probably did good to graduate high school, much less ever being able to add the initials of "M.D." at the end of their name.
Now. I personally am a little over 8 months out of treatment so I know where I am coming from although everyone weathers the "dark tunnel" a little bit differently than his neighbor. The radiation; yep, not pleasant but beats the hell out of the alternative, see above. Painful? Not really, at least in my case. I did feel just plain crappy most of the time but never in agonizing pain for any reason. Yes, you will lose your taste buds starting about the 2nd to 3rd week into treatment and it may take a year or longer to get them back. Sure beats that old alternative I mentioned earlier however.
Let's move next to the dry mouth issue. Yes, my docs advised me that the glands on my right side would be fried for good but they took great pains to protect those on my left side and did an impressive job. I do have trouble with dry mouth but it is not a constant thing. It comes and goes throughout most every day. Some even post here that their salivary function improves with passage of more time although I cannot really say I have experienced that yet. Even so, it is quite manageable and you will learn to adapt and compensate as you go along. You might need to get used to having a bottle of water with you most of the time, chew special gum by Biotene and to use some of the many other products from Biotene as well as other manufacturers. Again, you will learn to adapt and if you stick with this site you will pick up more tips than you ever wanted to know about!
Now, get moving on that treatment and just stick with this site and fire away with every posssible question you can think of.
Bill D.
Dear Group,
Thank you. I had been feeling all alone, overwhelmed and more depresssed than ever. I can see now that I have the support of people who have walked ahead of me, gone through the pain, and emerged to be able to encourage me to move forward, because everything might be all right. In addition to your comments and very direct reactions, I have found some direction and useful tips.
I'm still two weeks away from a biopsy of my chest, but I have an appointment with the Moffitt Center in Tampa for a consultation and my records have been received by MD Anderson Orlando and by the University of Texas Medical Center. I should be hearing from them this week.
Thank you. I am going to have more questions and I know I am still lost. Thank you for showing me enough light to make it through this day.
Yours,
Johanna
cancerous tumors at the base of the tongue and in right lymph nodes of my neck, suspicious spots in the mediastinum of my chest.
Johanna,
I went to Moffitt so if I can help you please e me anytime.
Johanna,
That's the spirit! You can do it. Fire away with the questions, anytime.
Jerry
Johanna! You have made my day!! Good for you!@! I can see that the initial horror has turned to determination to do the right thing for yourself. It sounds like you have taken all the right steps and will have opinions from the finest facilities available. You can trust their guidance, and then you will have a plan. It won't be like waking up to find that none of this is real, but it will be so comforting to KNOW what you are going to do about this awful problem. YAY!
Johanna, one foot in front of the other gets us all moving forward, and it doesn't hurt to ask for a little push every now and then
Keep on moving forward. Amy in the Oz.
Johanna,
I see you have sat down to play the cards !
Well we are all on your side ..So any questions ..ask away and we will be here with you !!!!
PS I'll try to put in a good word to the "dealer"!!!!!!!
Sharlee
Hello Johanna. I wrote a lengthy post the other night because I was so worried for you and even a little angry. But the anger always comes from being afraid, and I was just afraid you were not going to give this a fight. I'm so glad to hear that strong woman voice. There are so many of them here and you have now joined them. My post never made it to the board because I absent- mindedly missed the post message part. Oops. I want to share this part though. During my treatment there was a young boy having treatment as well. I am not 100% sure his diagnosis and only cought a little bit of his mother explaining his situation to another lady. This young man had been through treatment when he was 6. I am pretty sure his mother said it was some type of tumor on the brain. He is now 9 and his cancer had returned and he was going through treatment again. This little boy and his family were very strong people. They were always positive and the little boy never complained. It was very obvious that his treatment was very tough on him and he handled like a warrior would. I have so much respect for that little boy and will always be greatful to him for the things he taught me. He had no idea that he changed my life. We all get scared with the Dx, and some of us get tired and frustrated along the way, but we are gifted one thing that most other creatures aren't and that is our ability to give and receive hope. The only thing that stops that is feeling sorry for ourselves and that little boy taught me to never feel sorry for myself again. He also taught me that someone may be watching and be needing hope, so with a smile I try to pass along the hope he gave me. I hope everyone that reads this post will add this family to their prayer list, and Johanna I will add you to mine. The rest of you are already on it. Good luck Johanna. :-) Lee
Good for you, Johanna!! Sounds like you have started the fight! (And you've made my day.too!)