I just found out I have cancer

sweetblood22

Mwellsg
Welcome to the club. Sorry you had to join. I had SCC stage IV unknown primary. I had a neck dissction, two years ago tomorrow. They took 23 lymph nodes and my left salivary gland. I had 30 radiation treatments but no chemo because I am also a Fanconi Anemia patient and chemo is not an option. I worked up until the day before my surgery, but I have not worked since. Radiation really knocked me on my ****. I am glad I changed my mind and had a PEG tube placed because I needed it. My mouth was a wreck. My side effects hit hard and fast and were pretty unrelenting. I used my tube thru rads and kept my exact weight all thru but all hell broke loose after rads stopped and my side effects peaked. I couldn't keep any of the nutrition down and I lost forty pounds pretty quickly and was down to 87 lbs. I finally was put on a feeding pump over night which put the nutren in very slowly and that allowed me to gain a little weight and feel a little better. Nutrition is a major factor. As I said, I wasn't going to get a PEG even tho every doc I came in contact with told me I should. Especially because I was only 125 pounds to start out. I read a lot and came across the information that a lot of HNC patients die of malnutrition. That scared me. So I asked for a nutritionist on my team at the hospital, and went ahead with the peg placement.

Between my neck dissection and rads I went for two more opinions. During this time they told me to try to put more meat on my bones just in case I was going to do the radiation. I found it's just as hard to gain weight as lose it. I also bought a juicer and juiced twice a day and worked on eating foods to boost my immune system. (like dr oz's green smoothies, tons of orange,apple, cucumber, and high antioxident juice mixes). I took a liquid multivitamin and a liquid immune booster right in my juice. Knowing what I know now, I would ja d added L-Glutamine to that mix. (I didn't find this site until after treatment, sadly). If you do take supplements you must tell your RO and your Onc because they usually don't want you to take certain supplements thru treatment.

Scambuster is also a member on this site and he practices Traditional Chinese Medicine and is quite knowledgable with vitamins, supplements and TCM. I always stress that you must run things through your doctor first. I just take a multi vitamin, immune booster, glutamin and I eat a lot of veggies, whole grains, some fruits (they still burn my mouth badly), I do dairy, but no meats really because I have a stricture from radiation damage and I cannot swallow meats. My diet is still pretty high in fats tho because I am only 100 lbs and have trouble eating and gaining weight still. I am making progress and I was able to get rid of my peg after 18 months. I definitely feel nutrition is key and I would ask for a nutrtionist on my team.

As you can see there are many of us that are still here. We've made it thru treatment. I wish you the best.


Sweets

dennis318

sweetblood22 said:

Mwellsg
Welcome to the club. Sorry you had to join. I had SCC stage IV unknown primary. I had a neck dissction, two years ago tomorrow. They took 23 lymph nodes and my left salivary gland. I had 30 radiation treatments but no chemo because I am also a Fanconi Anemia patient and chemo is not an option. I worked up until the day before my surgery, but I have not worked since. Radiation really knocked me on my ****. I am glad I changed my mind and had a PEG tube placed because I needed it. My mouth was a wreck. My side effects hit hard and fast and were pretty unrelenting. I used my tube thru rads and kept my exact weight all thru but all hell broke loose after rads stopped and my side effects peaked. I couldn't keep any of the nutrition down and I lost forty pounds pretty quickly and was down to 87 lbs. I finally was put on a feeding pump over night which put the nutren in very slowly and that allowed me to gain a little weight and feel a little better. Nutrition is a major factor. As I said, I wasn't going to get a PEG even tho every doc I came in contact with told me I should. Especially because I was only 125 pounds to start out. I read a lot and came across the information that a lot of HNC patients die of malnutrition. That scared me. So I asked for a nutritionist on my team at the hospital, and went ahead with the peg placement.

Between my neck dissection and rads I went for two more opinions. During this time they told me to try to put more meat on my bones just in case I was going to do the radiation. I found it's just as hard to gain weight as lose it. I also bought a juicer and juiced twice a day and worked on eating foods to boost my immune system. (like dr oz's green smoothies, tons of orange,apple, cucumber, and high antioxident juice mixes). I took a liquid multivitamin and a liquid immune booster right in my juice. Knowing what I know now, I would ja d added L-Glutamine to that mix. (I didn't find this site until after treatment, sadly). If you do take supplements you must tell your RO and your Onc because they usually don't want you to take certain supplements thru treatment.

Scambuster is also a member on this site and he practices Traditional Chinese Medicine and is quite knowledgable with vitamins, supplements and TCM. I always stress that you must run things through your doctor first. I just take a multi vitamin, immune booster, glutamin and I eat a lot of veggies, whole grains, some fruits (they still burn my mouth badly), I do dairy, but no meats really because I have a stricture from radiation damage and I cannot swallow meats. My diet is still pretty high in fats tho because I am only 100 lbs and have trouble eating and gaining weight still. I am making progress and I was able to get rid of my peg after 18 months. I definitely feel nutrition is key and I would ask for a nutrtionist on my team.

As you can see there are many of us that are still here. We've made it thru treatment. I wish you the best.


Sweets

Alot of Us went threw the same
You where told over the phone, I was told by a laughing physicin, die or take the treatments, I never knew I had cancer, till that day and was tramatized, One of the nurses in the office was nice to sit me down, and reassure me it would be ok....stay positive, you don't know what's going to happen. Eat as much as you can and gain the extra pounds, Sweetblood is write, this is the thinkg that probably saved me, i gained 20-lbs, and glad i did after losing 60, I have gained only 1o back since a year ago, The malts and enssure are great, but my stomach shrank in 2 weeks of not eating, it went out as fast as i drank 3 of them....EAT proteins, and anything carbs, pack it on!.....Best to you, and we are all here...Take Care. Dennis

JUDYV5

Fluffy
There is nothing fluffy about your diagnosis. Being in shape isn't always a good thing when dealing with cancer. The ent who gave me my intial diagnoisis was concerned that I was in shape, because I didn't have any excess pounds to lose. He also painted a pretty ugly picture about the treatment ending with I probably would survive. He was right about everything. Find a doctor in a facility that has a record for treating your kind of cancer. Experience is everything. I also made sure that the doctor and hospital I picked were a perfered provider in my insurance network. You need to tell people. I was throughly amazed how supportive people are. I had friends bringing meals to my house 3 times a week. I had friends drive me to my daily radiation treatments. The kindness and prayers of others really helped me through some difficult times. Everyone handles treatment differenly, but everyone describes it as hard. I was knocked on my a**. "feel bad" doesn't even describe it. Now 7 months after treatment I am happy with the new me. I am back at work, but more important back at life. I saw my Doctors on Wednesday and they seem very impressed with their work.
I got my first NED in July. Attitude is everythig. - Judy

hawk711

JUDYV5 said:

Fluffy
There is nothing fluffy about your diagnosis. Being in shape isn't always a good thing when dealing with cancer. The ent who gave me my intial diagnoisis was concerned that I was in shape, because I didn't have any excess pounds to lose. He also painted a pretty ugly picture about the treatment ending with I probably would survive. He was right about everything. Find a doctor in a facility that has a record for treating your kind of cancer. Experience is everything. I also made sure that the doctor and hospital I picked were a perfered provider in my insurance network. You need to tell people. I was throughly amazed how supportive people are. I had friends bringing meals to my house 3 times a week. I had friends drive me to my daily radiation treatments. The kindness and prayers of others really helped me through some difficult times. Everyone handles treatment differenly, but everyone describes it as hard. I was knocked on my a**. "feel bad" doesn't even describe it. Now 7 months after treatment I am happy with the new me. I am back at work, but more important back at life. I saw my Doctors on Wednesday and they seem very impressed with their work.
I got my first NED in July. Attitude is everythig. - Judy

mwellsg and diagnosis
Well first of all let me tell you that it is NOT YOUR FAULT. I asked my doctor what caused my tongue cancer with lymph nodes also and he simply said " bad Luck ". So I took it as that and you should too. Now, get on to kicking cancers ****. You can do this! We all have done it and/or are going through it. This is the spot where you can get help, answers, ****, etc. We all offer our personal e-mail or even phone number if needed. I am in Northern CA and we have survivors spread all over the country, so just ask and you'll get our support.
Talk to your wife and ask for her help, you'll need help as we all did. It ain't easy, but this cancer can and is cured.
I hope I haven't rambled but this site gave me hope and all the wonderful people here, John, Judy,Joe, Pam, Jimbo,Deb, K Cass,Kim and of course Sweetblood gave me strength and advice and support. More than they know. So, keep in touch, get answers, start treatment and begin what we all call, "The New Normal". Life is still good and it will be better after this ends for you with a successful treatment.
All the best,
Steve
P>S> I just found out last week that I am now NED,(no evidence of disease) on my last PET scan. I am 9 months out of treatment and still healing but I am now NED and that is the most important step for me. felt like a 100 lb weight was lifted off my back.
All these words, like NED, PET, PEG, etc, will become second nature to you. You will know more than you ever wanted to know about H & N cancer and in the future you can help someone else with your stories and experiences....Good Luck to you.

soccerfreaks

hawk711 said:

mwellsg and diagnosis
Well first of all let me tell you that it is NOT YOUR FAULT. I asked my doctor what caused my tongue cancer with lymph nodes also and he simply said " bad Luck ". So I took it as that and you should too. Now, get on to kicking cancers ****. You can do this! We all have done it and/or are going through it. This is the spot where you can get help, answers, ****, etc. We all offer our personal e-mail or even phone number if needed. I am in Northern CA and we have survivors spread all over the country, so just ask and you'll get our support.
Talk to your wife and ask for her help, you'll need help as we all did. It ain't easy, but this cancer can and is cured.
I hope I haven't rambled but this site gave me hope and all the wonderful people here, John, Judy,Joe, Pam, Jimbo,Deb, K Cass,Kim and of course Sweetblood gave me strength and advice and support. More than they know. So, keep in touch, get answers, start treatment and begin what we all call, "The New Normal". Life is still good and it will be better after this ends for you with a successful treatment.
All the best,
Steve
P>S> I just found out last week that I am now NED,(no evidence of disease) on my last PET scan. I am 9 months out of treatment and still healing but I am now NED and that is the most important step for me. felt like a 100 lb weight was lifted off my back.
All these words, like NED, PET, PEG, etc, will become second nature to you. You will know more than you ever wanted to know about H & N cancer and in the future you can help someone else with your stories and experiences....Good Luck to you.

Well said
And congratulations re the most important of those acronyms: NED!



Take a little time for the happy dance, dude.

Take care,

Joe

adventurebob

Get ready
First; you can slow everything down at any time. There is most likely not a big rush to get started with treatment. And; you should receive formal, in person 2nd and 3rd opinions before scheduling a start date with the doc you choose.Do not let the medical professionals control the pace at which you move through this. If it is not on your personal schedule, it has not been officially scheduled. This will help prevent getting too overwhelmed. Slow it down at any time. Take days off if needed.
2nd; being in shape is a huge benefit right now. Do not let that go. It will minimize the side-effects and increase your recovery time. If nutrition is a large part of that already do what you can to improve on it. If nutrition is not a huge part yet; start immediately. Whatever it has been it will most likely need to be somewhat different. A good book would be helpful. I recommend "Anti-cancer", "Beating cancer with Nutrition", "Foods to fight cancer", "Healing the Gerson Way" and "The China Study. Lots of unnecessary controversary around how important diet and nutrition are so some research is really important.
Treatment for most head and neck cancers seems to be surgical removals and chemo and radiation. All three are difficult and painful and the medical system is antiquated and less efficient and patient centered than it could be, making it even more difficult and painful sometimes. It helps to start off with an attitude of "I am the one responsible for making sure everything happens the way it is supposed to". And then actually just taking charge of everything and knowing all the ins and outs. A good caretaker can help tremendously with this. Allowing them to be an extension of you really helps. Decide who you will trust and trust them.
If you ever were to take time off from work this would be the time. Not sure what options you have but now would be the time to exercise them as cancer is a full time job. The more time you can devote to fighting and healing and recovering the better your chances. Whatever your cancer, the more you can do to stack the deck in your favor and keep it stacked, the greater your chances of survival. Your doctors will generally administer medicine to you an hour or so each day. The other 23 are up to you. The biggest part is yours. This is the battle for your life. All your resources should be tapped for this.
Let the days focus be on the day. Try not to get too far ahead and when you do come back as fast as you can. Get through each day. Get through today.
Stay here with us. This is the number one place on the internet for "real" info about what you're going through. Ask any question. Tell us anything you need to. We're all here for you.
Gather your strength. Be brave. Pray.
Kick ****!

Bob

hawk711

soccerfreaks said:

Well said
And congratulations re the most important of those acronyms: NED!



Take a little time for the happy dance, dude.

Take care,

Joe

thanks Joe (soccerfreaks)
Joe
Right on. I danced all the way home once I got the monkey off my back. NED is a good thing.

Keeping up all the good posts,
Steve

ekdennie

some basic facts
here are some basic facts...no flowery stuff

1. find out what type of tumor it is, what stage, what grade, etc.
2. ask what are the best treatment options
3. if you don't like anything your doctor says (other than that you have cancer) get a second opinion
4. if you need surgery, radiation, chemo, or a combo of them, ask in what order you should have it for the bet results.
5. tell your wife...she will know something is up...she will need to be able to take care of you when you have a bad day...and you will have them.
6. what kind of work do you do? depending on the treatment type you may have to take some time off...others can work through the whole time. it isn't about feeling bad, it may be that you just don't' have the strength some days to get out of bed...but your mental attitude can make those days rare!
7. workout as much as you can throughout the whole process...it will keep your heart healthy, which will help your body heal from the treatments faster.
8. see a therapist the moment you feel sad, anxious, depressed...it happens to most head and neck patients
9.treatments vary. I had surgery and radiation. no one can see my scars...they are inside my nose and the roof of my mouth (my tumor was on my hard palate). I have to wear a prosthetic to cover the hole, but with it in, no one can tell. I have some redness on my face, but with the heavy application of lotions before, during, and after radiation they are minimal. I had huge sores throughout my mouth, but with pain meds and oral rinses they were not as painful as they could have been...for me they were like a mouth and throat full of canker sores. I have also lost some hair, but it is behind my ears, so I wear my hair down when I care if people will notice, otherwise I still wear it in ponytails.
10. you will have bad days, you will have good days. that is just how it goes. you can either worry about what might happen or address those things you can take care of. I chose and still choose to change/ deal with those things I can. I worked out and did as much activity as possible before I began treatments. I made myself get out of bed to send my oldest to school every morning (he was 4 and going to pre-k). I couldn't drive him, but I could wave goodbye, then go back to bed. when it was time to rest, I slept for more time than I did before so that I could keep doing those things that were important to me and my family. I am out of treatment and waiting to see what the ENT says at my next appointment...I am sure I am cancer-free, but until that first scan I can choose to worry about it or I can do the projects I had to put on hold while I was recovering...I am doing my projects.

I know you don't want the fluffy stuff, but I am young (31) and I am going to give you a little. what I wish for you: doctors with skilled hands (if you need surgery), with the right medications (if you need them) to take away you pain or to kill the cancer, with a game plan that will work so that you can be cancer-free one day. wishing for you the anger to fight, the peace to love your family while you fight, and the wisdom to seek help when you need it the most. Oh, and because everyone who has been told they have cancer (my dr told me over the phone, too) A GIANT HUG.

Hondo

hawk711 said:

thanks Joe (soccerfreaks)
Joe
Right on. I danced all the way home once I got the monkey off my back. NED is a good thing.

Keeping up all the good posts,
Steve

Hi Steve
Congratulations on the NED report, a great way to start the New Year

Hondo

Hi mwellsg
We are all afraid when we first find out we have cancer, and we fear for the unknown future of our family. A lot of what happens to you will depend on your doctors and your attitude. Doctors can do wonderful things in helping us treat the cancer, but keeping a positive attitude is what they need us to do. You will need help from your family, your wife and your friends, you see when you have cancer it affects everyone around you as well. Listen to your care team and don’t be afraid to ask questions if you don’t understand something about your treatment.

Remember this Cancer is cured everyday and many of us stay here on CSN just to help people like you who are just getting started, you will do well my friend just keep positive and enlist the help and support of your wife and family.

Hondo

Ron49

Same situation
Hi MW,

I am so sorry to hear you have recently been diagnosed however as I was told by so many you are so fortunate to have found this site and already can see you have met some of the best and most knowledgeable people. I also was recently told over the phone that I had scc after a biopsy was done on a swollen lymph gland on my neck. That was on Dec 10 and I had surgery to remove the left lymph gland and my tonsils last Monday January 3rd. Today I learned the tonsils were negative and will have a PET done soon. My wife and I have been nearly paralyzed with fear for the last month and the only straight talk I have had is from here when I posted the "JUST FOUND OUT". Listen to the advice and the words of encouragement shared here. Also I have found the chat room helps to remove some of mine or my wifes anxiety if we have a particular concern. Everyone here is like an on line supplemental care giver and we have found everyone gives great advice. I wish you only the best in your treatment and will be praying for you and your family.
Ron & Robyn

abbimom

so sorry
I was diagnosed 10 years ago when I was 21 years old in college. I had a lump on the side of my tongue near the back and it spread to the lymphnodes in my neck. I was stage 4 and they told my mom they thought I would live 2 years. they were wrong. I'm still here after 10 years. No matter what the doctors prognosis is stay strong and positive. The treatments are not fun and you will most likely feel miserable just being honest. I had a 1/4 of my tongue taken off and a neck dissection. Then I had radiation and chemo. I'm so sorry you have to go through this and you have a lot of support with this site. I just tried to stay positive and take things one at a time and just get through it. One positive is that treatments are better now and everyone reacts to the treatments differently. My big thing is to talk to a dentist about your teeth because radiation really screws them up. Also magic mouthwash which is a combination of medicines helps your mouth during the treatments. Take care of your teeth and do whatever exercises they give to you. Good luck to you and your family and best wishes.
Linda

kingcole42005

Hi Mw,
Hi Mw, Welcome this site is wonderful beyond words. The people here are kind and generous and will offer you tons of support. I have a different kind of cancer than yours, floor of mouth, and none in my nodes. I know that there are alot of people here that have been and are in a similar situation as you. I do know that treatment is rough, but if I can make it anyone can. I absolutely despise going for my 6 month treatments at the dentist, let alone a cavity or crown. Then I get oral cancer! I am just finishing up my last radiation treatment I had 30 dropped down from 33. I have two left. Radiation is very hard, especially for head and neck patients so be prepared and take ALL the advice given from people here when you start. I sure did and it helped me immensely. So I wish you all the best. Your going to beat the crap out of this cancer!!! Shelly

mwellsg

hawk711 said:

mwellsg and diagnosis
Well first of all let me tell you that it is NOT YOUR FAULT. I asked my doctor what caused my tongue cancer with lymph nodes also and he simply said " bad Luck ". So I took it as that and you should too. Now, get on to kicking cancers ****. You can do this! We all have done it and/or are going through it. This is the spot where you can get help, answers, ****, etc. We all offer our personal e-mail or even phone number if needed. I am in Northern CA and we have survivors spread all over the country, so just ask and you'll get our support.
Talk to your wife and ask for her help, you'll need help as we all did. It ain't easy, but this cancer can and is cured.
I hope I haven't rambled but this site gave me hope and all the wonderful people here, John, Judy,Joe, Pam, Jimbo,Deb, K Cass,Kim and of course Sweetblood gave me strength and advice and support. More than they know. So, keep in touch, get answers, start treatment and begin what we all call, "The New Normal". Life is still good and it will be better after this ends for you with a successful treatment.
All the best,
Steve
P>S> I just found out last week that I am now NED,(no evidence of disease) on my last PET scan. I am 9 months out of treatment and still healing but I am now NED and that is the most important step for me. felt like a 100 lb weight was lifted off my back.
All these words, like NED, PET, PEG, etc, will become second nature to you. You will know more than you ever wanted to know about H & N cancer and in the future you can help someone else with your stories and experiences....Good Luck to you.

thanks
it's settling in now. getting ready for the journey. good folks out here.

mwellsg

adventurebob said:

Get ready
First; you can slow everything down at any time. There is most likely not a big rush to get started with treatment. And; you should receive formal, in person 2nd and 3rd opinions before scheduling a start date with the doc you choose.Do not let the medical professionals control the pace at which you move through this. If it is not on your personal schedule, it has not been officially scheduled. This will help prevent getting too overwhelmed. Slow it down at any time. Take days off if needed.
2nd; being in shape is a huge benefit right now. Do not let that go. It will minimize the side-effects and increase your recovery time. If nutrition is a large part of that already do what you can to improve on it. If nutrition is not a huge part yet; start immediately. Whatever it has been it will most likely need to be somewhat different. A good book would be helpful. I recommend "Anti-cancer", "Beating cancer with Nutrition", "Foods to fight cancer", "Healing the Gerson Way" and "The China Study. Lots of unnecessary controversary around how important diet and nutrition are so some research is really important.
Treatment for most head and neck cancers seems to be surgical removals and chemo and radiation. All three are difficult and painful and the medical system is antiquated and less efficient and patient centered than it could be, making it even more difficult and painful sometimes. It helps to start off with an attitude of "I am the one responsible for making sure everything happens the way it is supposed to". And then actually just taking charge of everything and knowing all the ins and outs. A good caretaker can help tremendously with this. Allowing them to be an extension of you really helps. Decide who you will trust and trust them.
If you ever were to take time off from work this would be the time. Not sure what options you have but now would be the time to exercise them as cancer is a full time job. The more time you can devote to fighting and healing and recovering the better your chances. Whatever your cancer, the more you can do to stack the deck in your favor and keep it stacked, the greater your chances of survival. Your doctors will generally administer medicine to you an hour or so each day. The other 23 are up to you. The biggest part is yours. This is the battle for your life. All your resources should be tapped for this.
Let the days focus be on the day. Try not to get too far ahead and when you do come back as fast as you can. Get through each day. Get through today.
Stay here with us. This is the number one place on the internet for "real" info about what you're going through. Ask any question. Tell us anything you need to. We're all here for you.
Gather your strength. Be brave. Pray.
Kick ****!

Bob

good attitude
great approach to this. thanks. and thanks for the leads on the nutrition stuff. i'll get a book and get started.

mwellsg

ekdennie said:

some basic facts
here are some basic facts...no flowery stuff

1. find out what type of tumor it is, what stage, what grade, etc.
2. ask what are the best treatment options
3. if you don't like anything your doctor says (other than that you have cancer) get a second opinion
4. if you need surgery, radiation, chemo, or a combo of them, ask in what order you should have it for the bet results.
5. tell your wife...she will know something is up...she will need to be able to take care of you when you have a bad day...and you will have them.
6. what kind of work do you do? depending on the treatment type you may have to take some time off...others can work through the whole time. it isn't about feeling bad, it may be that you just don't' have the strength some days to get out of bed...but your mental attitude can make those days rare!
7. workout as much as you can throughout the whole process...it will keep your heart healthy, which will help your body heal from the treatments faster.
8. see a therapist the moment you feel sad, anxious, depressed...it happens to most head and neck patients
9.treatments vary. I had surgery and radiation. no one can see my scars...they are inside my nose and the roof of my mouth (my tumor was on my hard palate). I have to wear a prosthetic to cover the hole, but with it in, no one can tell. I have some redness on my face, but with the heavy application of lotions before, during, and after radiation they are minimal. I had huge sores throughout my mouth, but with pain meds and oral rinses they were not as painful as they could have been...for me they were like a mouth and throat full of canker sores. I have also lost some hair, but it is behind my ears, so I wear my hair down when I care if people will notice, otherwise I still wear it in ponytails.
10. you will have bad days, you will have good days. that is just how it goes. you can either worry about what might happen or address those things you can take care of. I chose and still choose to change/ deal with those things I can. I worked out and did as much activity as possible before I began treatments. I made myself get out of bed to send my oldest to school every morning (he was 4 and going to pre-k). I couldn't drive him, but I could wave goodbye, then go back to bed. when it was time to rest, I slept for more time than I did before so that I could keep doing those things that were important to me and my family. I am out of treatment and waiting to see what the ENT says at my next appointment...I am sure I am cancer-free, but until that first scan I can choose to worry about it or I can do the projects I had to put on hold while I was recovering...I am doing my projects.

I know you don't want the fluffy stuff, but I am young (31) and I am going to give you a little. what I wish for you: doctors with skilled hands (if you need surgery), with the right medications (if you need them) to take away you pain or to kill the cancer, with a game plan that will work so that you can be cancer-free one day. wishing for you the anger to fight, the peace to love your family while you fight, and the wisdom to seek help when you need it the most. Oh, and because everyone who has been told they have cancer (my dr told me over the phone, too) A GIANT HUG.

thanks
wow. a pathway. great advice and it is much appreciated

mwellsg

Ron49 said:

Same situation
Hi MW,

I am so sorry to hear you have recently been diagnosed however as I was told by so many you are so fortunate to have found this site and already can see you have met some of the best and most knowledgeable people. I also was recently told over the phone that I had scc after a biopsy was done on a swollen lymph gland on my neck. That was on Dec 10 and I had surgery to remove the left lymph gland and my tonsils last Monday January 3rd. Today I learned the tonsils were negative and will have a PET done soon. My wife and I have been nearly paralyzed with fear for the last month and the only straight talk I have had is from here when I posted the "JUST FOUND OUT". Listen to the advice and the words of encouragement shared here. Also I have found the chat room helps to remove some of mine or my wifes anxiety if we have a particular concern. Everyone here is like an on line supplemental care giver and we have found everyone gives great advice. I wish you only the best in your treatment and will be praying for you and your family.
Ron & Robyn

you are so right
at 2am the other morning, i though i was going to explode. somehow i found this site and it is a godsend. people helping people from real world experience beats text book stuff every day, hands down. sounds like you and i are on similar journeys and you are up ahead on the path. all the best and if it's ok, i'm going to hang back here and watch a bit. mike

rozaroo

kingcole42005 said:

Hi Mw,
Hi Mw, Welcome this site is wonderful beyond words. The people here are kind and generous and will offer you tons of support. I have a different kind of cancer than yours, floor of mouth, and none in my nodes. I know that there are alot of people here that have been and are in a similar situation as you. I do know that treatment is rough, but if I can make it anyone can. I absolutely despise going for my 6 month treatments at the dentist, let alone a cavity or crown. Then I get oral cancer! I am just finishing up my last radiation treatment I had 30 dropped down from 33. I have two left. Radiation is very hard, especially for head and neck patients so be prepared and take ALL the advice given from people here when you start. I sure did and it helped me immensely. So I wish you all the best. Your going to beat the crap out of this cancer!!! Shelly

hello Mw
I was diagnosed with stage 4b cancer of the toncil Dec 15 2009. Had 35 radiation treatment's
& 3 cisplatin chemo. Had peg tube put in asap & did not use it till end of radtation. Never
lost any weigh & once I found out I started eating for dear life. I actually gained 30 lbs.
Had a hard time keeping feeding's down at first, but hubby kept pushing the food down my tube. My cancer centre gave me a huge helpfull binder which I added more paper too. I kept a daily journal of when I took my med's feeding's & appointment's. Believe me it so helps to
be organized during treatment. Make sure to drink water etc even small sip's. You must do that to keep your swallow & so you do not dehydrate which I did once. I have had scopes done
every two month's & one cat scan which turned out great. Next week is my first pet/cat scan
so we will see how it go's from there. I wish you great success through your treatment & recovery. Remember we are all here to offer support through goodtimes & bad.
God Bless
Roz

JUDYV5

hawk711 said:

mwellsg and diagnosis
Well first of all let me tell you that it is NOT YOUR FAULT. I asked my doctor what caused my tongue cancer with lymph nodes also and he simply said " bad Luck ". So I took it as that and you should too. Now, get on to kicking cancers ****. You can do this! We all have done it and/or are going through it. This is the spot where you can get help, answers, ****, etc. We all offer our personal e-mail or even phone number if needed. I am in Northern CA and we have survivors spread all over the country, so just ask and you'll get our support.
Talk to your wife and ask for her help, you'll need help as we all did. It ain't easy, but this cancer can and is cured.
I hope I haven't rambled but this site gave me hope and all the wonderful people here, John, Judy,Joe, Pam, Jimbo,Deb, K Cass,Kim and of course Sweetblood gave me strength and advice and support. More than they know. So, keep in touch, get answers, start treatment and begin what we all call, "The New Normal". Life is still good and it will be better after this ends for you with a successful treatment.
All the best,
Steve
P>S> I just found out last week that I am now NED,(no evidence of disease) on my last PET scan. I am 9 months out of treatment and still healing but I am now NED and that is the most important step for me. felt like a 100 lb weight was lifted off my back.
All these words, like NED, PET, PEG, etc, will become second nature to you. You will know more than you ever wanted to know about H & N cancer and in the future you can help someone else with your stories and experiences....Good Luck to you.

Congrats on the Ned
That first NED is the best.- Judy

Pam M

hawk711 said:

mwellsg and diagnosis
Well first of all let me tell you that it is NOT YOUR FAULT. I asked my doctor what caused my tongue cancer with lymph nodes also and he simply said " bad Luck ". So I took it as that and you should too. Now, get on to kicking cancers ****. You can do this! We all have done it and/or are going through it. This is the spot where you can get help, answers, ****, etc. We all offer our personal e-mail or even phone number if needed. I am in Northern CA and we have survivors spread all over the country, so just ask and you'll get our support.
Talk to your wife and ask for her help, you'll need help as we all did. It ain't easy, but this cancer can and is cured.
I hope I haven't rambled but this site gave me hope and all the wonderful people here, John, Judy,Joe, Pam, Jimbo,Deb, K Cass,Kim and of course Sweetblood gave me strength and advice and support. More than they know. So, keep in touch, get answers, start treatment and begin what we all call, "The New Normal". Life is still good and it will be better after this ends for you with a successful treatment.
All the best,
Steve
P>S> I just found out last week that I am now NED,(no evidence of disease) on my last PET scan. I am 9 months out of treatment and still healing but I am now NED and that is the most important step for me. felt like a 100 lb weight was lifted off my back.
All these words, like NED, PET, PEG, etc, will become second nature to you. You will know more than you ever wanted to know about H & N cancer and in the future you can help someone else with your stories and experiences....Good Luck to you.

Love It
Hawk,
Never get tired of seeing "NED". Wonderful.