Newly diagnosed
WEll I got the news that nobody wants to hear...it was confirmed that I have squamous cell cancer in tonsils after a biopsy results came back. Doctor said it was stage iV which is very overwhelming to hear. I feel like I have read way too much on the internet, but I am very glad I stumbled upon this site. The support system on this site is amazing and I will definitely be reading and asking questions as I go through the treatments. I am definitely scared, nervous and worried. So any encouragement and advice would be great. Right now trying to decide where to do my treatments, there are several options. Any thoughts on how to decide where to do them?
Comments
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Treatment center
My choice was to go to a major cancer treatmenrt center. I live in a small town and wasnt satisfied with the answers from our local oncologist. Went to Cleveland Clinic and it was totally different their treatment plan was more up to date and the out look more positive
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Hello Bulldogger....
and welcome to the club nobody wants to join. You happened to have stumbled on the best forum on the internet.....and now you have to go no further on "researching" this on the internet. The first thing I did after finding this place was drop all my researching
....like to scare me to death!!! Most of us were diagnosed in Stage III or IV....that's part of the nature of this disease.....and you will see that we lived to tell the tale.
If you're close to a big cancer center or are able to get to one, that is great. I was prepared to go to MD Anderson, but learned that my treatment would be the same here (in podunk Montana) as there, so chose to to stay home. I did send my scans and files to MDA, tho.....
You'll find that the people here are kind, positive, and VERY smart.....it's a good place to be during this bad patch of time in your life.
p
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Hello bulldogger
1st stepHello bulldogger
1st step is finding the right team. So as Phrannie said MD Anderson is great place to start with, if not there are many other cancer centers also known for being the best. Sorry can't help u much with the centers because I'm not in the US... But I can tell u its ok to be nervous and overwhelmed, soon things will get clear once u have a plan set..
stay strong
whenever u need support we r here, and as my friends here always tell me "we are on the sidelines cheering for you"good luck.
Goyca.
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welcome
Bulldogger1,
Welcome to the H&N forum, so sorry you got the news.
Encouragement and advice? You are going to make it through treatments in one piece. You should start drinking lots of water and swallowing often.
Good luck selecting a cancer center and the same goes for your team.
Matt
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Welcome to the H&N Group
Welcome to the group and sorry you need to be here. First off let me say it is beatable and so many have. I was right before surgery T4, N2, M0 SSC supragolottic [just above vocal cords] and after surgery T3,N0,M0, Had neck dessection on both sides and removed 86 glands and my larnyx. I never had chemo or radaition, but went back to work in 10 weeks.
I do recomend going to the best place you can. Taking in to concideration travel and Insurance, go to the best you can. It is well worth it. They have what is called Tumor boards. This is where you are seen my all the doctors at one time; Surgen. ONC rad, pathology, radiologist just to read the xrays, ONC for chemo and many more. They all review your condition and all decide what is the best for you. They also see more of this than a smaller or local doctor does. You might also read the Superthread (Read Only) It has a lot of information. Feel free to ask questions and when you get down just vent and write it down what your going through. We all understand what you will be going through and have been there. You won't find a better group of understanding and helpful people anywhere. It is a bumpy road you will be going down but there is light at the end, and you will make it like so many have.When you go to the doctor, Take someone with you, it helps to remember. A tape recording is helpful, your smart phone has one. Write down your questions and just hand them to the doctor. He will say something that might make you loose your train of thought so writing them down helpe. My surgen took the paper and worte the answers for me and we went over everything. It help me not be so scaired.
We will keep you in our thoughts and prayers. YOU WILL GET THROUGH THIS.
Please remember this is happimg to you, but your loved ones and caretakers are just as scared and sometimes even more.
Here is a list of the best H&N you can alsy change it for cancer. I like one that is great in both. Mine paid off for me.
http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat
Bill 10/2013
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Tornwmc said:Welcome to the H&N Group
Welcome to the group and sorry you need to be here. First off let me say it is beatable and so many have. I was right before surgery T4, N2, M0 SSC supragolottic [just above vocal cords] and after surgery T3,N0,M0, Had neck dessection on both sides and removed 86 glands and my larnyx. I never had chemo or radaition, but went back to work in 10 weeks.
I do recomend going to the best place you can. Taking in to concideration travel and Insurance, go to the best you can. It is well worth it. They have what is called Tumor boards. This is where you are seen my all the doctors at one time; Surgen. ONC rad, pathology, radiologist just to read the xrays, ONC for chemo and many more. They all review your condition and all decide what is the best for you. They also see more of this than a smaller or local doctor does. You might also read the Superthread (Read Only) It has a lot of information. Feel free to ask questions and when you get down just vent and write it down what your going through. We all understand what you will be going through and have been there. You won't find a better group of understanding and helpful people anywhere. It is a bumpy road you will be going down but there is light at the end, and you will make it like so many have.When you go to the doctor, Take someone with you, it helps to remember. A tape recording is helpful, your smart phone has one. Write down your questions and just hand them to the doctor. He will say something that might make you loose your train of thought so writing them down helpe. My surgen took the paper and worte the answers for me and we went over everything. It help me not be so scaired.
We will keep you in our thoughts and prayers. YOU WILL GET THROUGH THIS.
Please remember this is happimg to you, but your loved ones and caretakers are just as scared and sometimes even more.
Here is a list of the best H&N you can alsy change it for cancer. I like one that is great in both. Mine paid off for me.
http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat
Bill 10/2013
Thank you very much for the encouragement and advice. MD Anderson is definitely the top place to go, but I am worried that it will take two to four weeks to get in. I don't want the cancer to keep spreading while I wait to get started with the treatment since the doctor did confirm I was stage IV. The doctor that diagnosed me yesterday was with UT physicians in Houston and seemed liked he really knew what he was talking about and he really took the time to explain everything so we felt pretty comfortable with him. He said I needed to get started right away and that he could get started on the chemo and radiation with 10 days. I know MD Anderson is the best place but also have heard most of the treatments of radiation and Cystplatinum are the same. I am just torn on what to do - just wanting to get going with the treatment and have a sucessful outcome and recovery. Thanks again for your thoughts and comments!!
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The "torn" feeling isBulldogger1 said:Torn
Thank you very much for the encouragement and advice. MD Anderson is definitely the top place to go, but I am worried that it will take two to four weeks to get in. I don't want the cancer to keep spreading while I wait to get started with the treatment since the doctor did confirm I was stage IV. The doctor that diagnosed me yesterday was with UT physicians in Houston and seemed liked he really knew what he was talking about and he really took the time to explain everything so we felt pretty comfortable with him. He said I needed to get started right away and that he could get started on the chemo and radiation with 10 days. I know MD Anderson is the best place but also have heard most of the treatments of radiation and Cystplatinum are the same. I am just torn on what to do - just wanting to get going with the treatment and have a sucessful outcome and recovery. Thanks again for your thoughts and comments!!
pretty darn uncomfortable......I remember. Wanting to go to the very best place and be rid of this forever.....and at the same time not wanting to be 1000's of miles away from home, family, and those who cared about me. If you feel comfortable with the place you are....and feel trust in this Dr. then good. Even up here in Montana, there was a team.....an ENT/surgeon.....a radiologist and an oncologist who conferred with one another. As it was.....I was diagnosed the beginning of March, and didn't start treatment until the end of April....6 weeks is about average to go between first diagnosis to the beginning of treatment.
This first block of time....between dx and treatment is one filled with a lot of hurry up and wait.....nerve wracking as hell....but it's very common. You can have your scans and records sent over to MDA while your waiting, anyway.....just to see what they say. Their treatment plan might be exactly what the Dr. at UT say.
p
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Stop being torn today
You will be fine where ever you wind up. This stuff is fairly standardized regardless of location. There are flow charts and dosage formulas. You can seek expertise when required outside of standard treatment other than the chemo/Rad doctors. Even the small community hospital where I was treated had a cancer unit with onsite docs, radiation and chemo infusion. Just took up one small corner in a building 20 min from my home. I then found an experrienced surgeon in another hospital when I needed specialized skills. Hospitals differ in protocols. Different places play with duration and frequency of chemo/and their cocktails. Radiation can also be manipulated by duration and frequency and type. This is all done in well controlled established boundaries. Some clinical trials are a bit bolder but so far you have the run of the mill cancer protocol which is very effective. Don't stress over location as there are competent doctors in many communities. You want a place that meets basic cancer treatment protocol and it dosen't have to be worldclass. You can research this stuff to the cows come home. Find the one that meets the majority of your needs. Best of luck and welcome!
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sorry but welcomeBulldogger1 said:Torn
Thank you very much for the encouragement and advice. MD Anderson is definitely the top place to go, but I am worried that it will take two to four weeks to get in. I don't want the cancer to keep spreading while I wait to get started with the treatment since the doctor did confirm I was stage IV. The doctor that diagnosed me yesterday was with UT physicians in Houston and seemed liked he really knew what he was talking about and he really took the time to explain everything so we felt pretty comfortable with him. He said I needed to get started right away and that he could get started on the chemo and radiation with 10 days. I know MD Anderson is the best place but also have heard most of the treatments of radiation and Cystplatinum are the same. I am just torn on what to do - just wanting to get going with the treatment and have a sucessful outcome and recovery. Thanks again for your thoughts and comments!!
Welcome and sorry you have to be here. Glad you found us so early. There is lots of first-hand experience so do visit often and ask/read away.
If you can provide more details about your diagnosis that would help guide us with more specific responses. I'll assume you have a "stanarad" case of SCC Stage 3-4a or less. If you have no other medical conditions and are quite vital and otherwise healthy then go where you feel the most trust and confidence in your medical doctors. If you had any special circumstances that might impact your treatment and recovery then I would seek care at facilities that do cancer all day long such as MD Anderson. There is a list of CCC -comprehensive cancer centers. look up NCI CCC.
If you have the option to go to a CCC and have the time/ability to travel then it would be the better choice. How much better I have no clue. Cured is cured. The day to day care getting you through treatment and recovery can certainly have a big impact on how you do short term.
No matter where you go make absolutely certain they use a team approach and a tumor board to review your case. Atternd this meeting and you will come away reassured that many eyes and experience go into your treatment planning.
Although there are published NCCN guidelines specifying the types of treatment based on diagnosis, there is a lot of variation to the actual details of the procedures left to the doctors. So there is still no substitute for experience. Make sure your doctors see plenty of cases like yours to ensure they know how to do precisely what is best for you.
Good luck
don
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Hello From AZ
As the others have already written sorry that you had to find us , welcome , you will find a vast amount out information with this group ... And yes stop looking at the internet. I'm a stage 4a SCC right tonsil , 1 lymph node survivor ... I was diagnosed in 2011 , Dec 2014 will be my 3 yr anniversary of completing treatment. Cisplatin , taxatore , 5FU ( wore a pump from mon afternoon to Friday afternoon) every 21 days Aug to Oct , then 7.5 weeks of rads & 1 infusion of carboplatin for each week of rads ... My onco said I was going to have the mother of all treatments ... I was fortunate that I didn't experience any major side effects, loss of taste , diminished saliva , but back to normal or as close to normal ... It was and still is a comfort to come here to ask questions thru and after treatments ... It's doable ... Best of luck as your journey begins.
Linda
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hi and welcome to the club
hi and welcome to the club where we hate to see new members. i'm so glad you foung this though since you need it. i'm sorry for your need but you will be in good hands here. ask any question you have, express how you feel, good or bad, share a joke or good story, anything you want, this is the place to do it. it is a rough road but you will get through it and we will be here the whole way to help you along. as wmc mentioned, this will also be hard on your loved ones so please be patient with them. we will all say quite frankly that we couldn't have done it without our wonderful caregivers. most here waited a month or two for tx to start so i don't think that is a big deal. you just need to feel comfortable and trust whatever place and doctors you chose. if you trust them, then i don't think it matters where it is. praying you are able to make a decision so that you will be happy with and that tx will go smoothly. we will be here for you and i hope you will keep us posted on your progress. once you get started the time will fly. keep your head up, stay strong, drink lots of water, eat as much as you can and try to gain some weight, and make sure you swallow thoughout treatment, that is crucial. we're on the sidlines with you.
God bless you,
dj
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+1ratface said:Stop being torn today
You will be fine where ever you wind up. This stuff is fairly standardized regardless of location. There are flow charts and dosage formulas. You can seek expertise when required outside of standard treatment other than the chemo/Rad doctors. Even the small community hospital where I was treated had a cancer unit with onsite docs, radiation and chemo infusion. Just took up one small corner in a building 20 min from my home. I then found an experrienced surgeon in another hospital when I needed specialized skills. Hospitals differ in protocols. Different places play with duration and frequency of chemo/and their cocktails. Radiation can also be manipulated by duration and frequency and type. This is all done in well controlled established boundaries. Some clinical trials are a bit bolder but so far you have the run of the mill cancer protocol which is very effective. Don't stress over location as there are competent doctors in many communities. You want a place that meets basic cancer treatment protocol and it dosen't have to be worldclass. You can research this stuff to the cows come home. Find the one that meets the majority of your needs. Best of luck and welcome!
this is a gold medal answer. M D Anderson is a great place. There are many great places. And beyond that, there are many great doctors. When I was originally diagnosed in 1998, I had the typical small town cant do modern treatment problem, so I made appointments in several major centers. SLU and Wash U in St Louis, both of which are top flight teaching hospitals, and at M D Anderson. The first appointment I had was at SLU, where I met this great ENT oncologist, that I found I got along with just fine. At the end of our appointment we talked about my upcoming appointments at the other places. My question to this guy was "will I learn things that are substantively different at either institution?" to which he answered "No." I cancelled my M D Anderson appointment and to this day am treated by the same guy in St Louis. I have no regrets. BTW, my oncology training is from M D Anderson........
Pat
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Bulldogger
you're feeling what we all felt when we got the news and it's a bit overwhelming for sure. Mine started in my right tonsil and was stage 4 when we found it. Here I am 17 months from diagnosis and 14 months post treatment and am feeling great. It will be rough at times but stay positive and prepare M
I live in the Dallas area and I could have gone to a bigger hospital but I was very comfortable with my team as Texas Oncology/ Medical City and have never regretted it for a minute. Find someone in the Houston area that you are comfortable with, has a solid reputation with state of the art radiation equipment and relatively convenient. You will have lots of great choices in Houston with MD Anderson at the top of the list. I don't think there is probably a sense of urgency in getting started and I had to wait 3 weeks from my tonsillectomy to get started. Go to the dentist and get checked out and get a fluoride tray, consider a PEG tube and understand your chemo options. The radiation treatment seems pretty standard and you'll probably get between 33-36 treatments. The big difference in doctors seems to be their choice of chemo drugs. many of us were treated with Erbitux, which seems to have less side effects than others but there are other trade offs to consider that you should talk to your doctor about. It still has side effects bit they seem easier than others. I know Matt and I had it for sure and many others
Good luck as you get ready for the next phase. It will suck bad at times but honestly once you get started when you look back it seems to go fast. When your in the middle of treatment it doesn't feel that way but it will pass. You can do this.
Keith
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Just chiming in here
Hi Bulldogger. I was diagnosed with a stage IV cancer, in my case -base of tongue with mets to several lymph nodes on both sides of my neck. I saw a great doctor at Stanford, and still see him four years later. He told me that for my case, at least, the treatment wasn't rocket science, and that, for me, the gold standard of cisplatin chemo and radiation could be obtained a lot closer to home. I was able to be treated at a Regional Cancer Center in my home town, with the Stanford guy following along. Best wishes to you in your journey.
Deb
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Welcome HereD Lewis said:Just chiming in here
Hi Bulldogger. I was diagnosed with a stage IV cancer, in my case -base of tongue with mets to several lymph nodes on both sides of my neck. I saw a great doctor at Stanford, and still see him four years later. He told me that for my case, at least, the treatment wasn't rocket science, and that, for me, the gold standard of cisplatin chemo and radiation could be obtained a lot closer to home. I was able to be treated at a Regional Cancer Center in my home town, with the Stanford guy following along. Best wishes to you in your journey.
Deb
Sorry to hear you need to join our club. Everyone has already given you good advice so there isn't much I can add. Just ask a lot of questions with your doctor. Also, bring someone with you so you don't forget. Once we hear the Cancer word our brains just kind of fog out. My wife came with me and wrote down everything. Then she made a folder for all my treatments and surgeries.
I was lucky enough to have a great doctor here in Las Vegas. My ENT said that if I couldn't get in to see him then I was to go to UCLA where they also have a TORS machine. (Trans Oral Robotic System) Whether or not you need that is up to your doctor. Having the SCC on your tonsils is easy to get to w/o a robot arm. Mine was base of tongue so they couldn't reach it by hand.
Please don't Google any information. Everything you need is here. Support, the truth, and good friends.
Tom
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Sorrytommyodavey said:Welcome Here
Sorry to hear you need to join our club. Everyone has already given you good advice so there isn't much I can add. Just ask a lot of questions with your doctor. Also, bring someone with you so you don't forget. Once we hear the Cancer word our brains just kind of fog out. My wife came with me and wrote down everything. Then she made a folder for all my treatments and surgeries.
I was lucky enough to have a great doctor here in Las Vegas. My ENT said that if I couldn't get in to see him then I was to go to UCLA where they also have a TORS machine. (Trans Oral Robotic System) Whether or not you need that is up to your doctor. Having the SCC on your tonsils is easy to get to w/o a robot arm. Mine was base of tongue so they couldn't reach it by hand.
Please don't Google any information. Everything you need is here. Support, the truth, and good friends.
Tom
About your condition. As expected the good people here seem to have it all covered. Good Luck from UK, Gary
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Welcome...
First and foremost, stay off of the internet, or at least re-think what you read (be more informed)...
You're right, nobody here was thrilled about being told they have cancer.
But many of us have been here for a long time, several like myself have fully recovered..., though I'm more abi-normal now than before, LOL... Which isn't really a bad thing. In many ways, I have a much better perspective on the things in my life now.
The things that weee once thought to be a big deal, now..., not so much. Things that I didn't pay enough attention to before, now are huge.
You'll make it through as the majority of us have.
A lot depends on positive thinking, good attitude, humor, and a willinglyness to live.
Of course age, health going in, genetics, etc.. come in to play.
I was STG III SCC Tonsils, HPV+..., over five years ago..., clean and clear since Tx.
Best,
John
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