Adenoid Cystic Carcinoma, Encouragement needed!!
Comments
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welcome
To the board, sorry you had to join our club but you will be glad you did.
I don't know much about different cancers and treatments only mine, but
There are a bunch of great and knowledgeable people here who will give
You an abundance of information.
You will also get a fantastic support team, and remember......
Always be positive and have faith in the man upstairs and you can
Overcome anything.
God bless
Tonsil Dad,
Dan.0 -
Max Encouragement
While I can't contribute comcermimg your specific situation. I can offer tons of encouragement .
While you are young and unfortunate, being young is a good thing.
Technology and survival id great these days.
You have a very good shot of a long fulfilled life post treatment these days.
Others will chime in soon.
Hang tough, be determined and stay positive,
John0 -
Hello meganbSkiffin16 said:Max Encouragement
While I can't contribute comcermimg your specific situation. I can offer tons of encouragement .
While you are young and unfortunate, being young is a good thing.
Technology and survival id great these days.
You have a very good shot of a long fulfilled life post treatment these days.
Others will chime in soon.
Hang tough, be determined and stay positive,
John
MeganB ...sorry you have to be part of our club ...but you have found a great place of people who care, truly care.
One thing I learned quickly on is doctors tend to be conservative when speaking %. Some people on here are not % people, which makes sense bc all of the studies you read about that give survival rates 5 years out have to be at least 5 years old, get my point.
For example just recenlty for head and neck cancer patients they have this new robotic surgery (Houston TX) that has GREATLY improved the odds head and neck cancers ...every week it seems like somethng else comes on line.
The other thing is how young you are. Your body is in prime condition for the treatments you will be going through.
Don't google your cancer (outdatd and flat out wrong info is all over the place) ..go to sites like Oral Cancer Foundation, National Cancer Institute, American Cancer Society ...but remember, the sample groups even there are often old (conducted years ago).
I don't know how you feel about "prayer" so I hope you don't mind that I offered one on your behalf before I responded to your post.
All cancer patients have a bond, no matter the type or stage ...I'm on your team meaganb and I'll hang in there with you!
Tim / Idaho
Stage III base of tongue w/ one lymph node / HPV positive0 -
As others have said, welcome...Tim6003 said:Hello meganb
MeganB ...sorry you have to be part of our club ...but you have found a great place of people who care, truly care.
One thing I learned quickly on is doctors tend to be conservative when speaking %. Some people on here are not % people, which makes sense bc all of the studies you read about that give survival rates 5 years out have to be at least 5 years old, get my point.
For example just recenlty for head and neck cancer patients they have this new robotic surgery (Houston TX) that has GREATLY improved the odds head and neck cancers ...every week it seems like somethng else comes on line.
The other thing is how young you are. Your body is in prime condition for the treatments you will be going through.
Don't google your cancer (outdatd and flat out wrong info is all over the place) ..go to sites like Oral Cancer Foundation, National Cancer Institute, American Cancer Society ...but remember, the sample groups even there are often old (conducted years ago).
I don't know how you feel about "prayer" so I hope you don't mind that I offered one on your behalf before I responded to your post.
All cancer patients have a bond, no matter the type or stage ...I'm on your team meaganb and I'll hang in there with you!
Tim / Idaho
Stage III base of tongue w/ one lymph node / HPV positive
...and wish you didn't have a reason to join us here! :-)
Being young will help you A LOT. I think it's helping me, and I'm 47 (which from what I can tell, is about 10-15 years younger than the average for H&N cancer). You'll do great at your age!
I did a lot of looking into studies for my specific cancer type, looking at the results to see what sorts of treatments are cutting edge. I did a TON of reading here, and looked everything up. I went to other boards and read too, for information (although this group is so awesome that I ended up only posting here).
I wrote a blog post on research because I did a TON of it at first, I did it the wrong way, and it really scared the crap out of me. http://eluminarts.com/?p=247
Here are the main points I learned:
Don’t Let Statistics Bring You Down: There's a tremendous article by Stephen J. Gould, a noted biologist who was diagnosed with a quick-moving, deadly form of cancer. It's called The Median Isn't The Message/ http://www.cancerguide.org/median_not_msg.html
Pay Attention To Dates: Cancer treatment changes all the time--no exaggeration. An article even 3-4 years old may be outdated by now. Check the dates on every article or blog you read.
Look For Information, Not Answers: Think of this as arming yourself to pepper your doctors with questions, rather than answering your own questions. If your doctor can't or won't answer all your questions, it's a sign you should switch to a new one!
Remember That You Are Unique: When you start reading, you'll naturally assume everything you read will happen to you. It won't. Don't let yourself go there. The only way you'll know what you will experience is when you experience it. Your age will make a big difference, I think!
Know Your Own Limits: Watch for when you feel like information is bumming you out instead of empowering you, and take a break or even stop. It's easy to get obsessed and find yourself missing out on life because your head is buried in articles (at least, it was for me).
Hope this helps!0 -
Hi Megan........Laralyn said:As others have said, welcome...
...and wish you didn't have a reason to join us here! :-)
Being young will help you A LOT. I think it's helping me, and I'm 47 (which from what I can tell, is about 10-15 years younger than the average for H&N cancer). You'll do great at your age!
I did a lot of looking into studies for my specific cancer type, looking at the results to see what sorts of treatments are cutting edge. I did a TON of reading here, and looked everything up. I went to other boards and read too, for information (although this group is so awesome that I ended up only posting here).
I wrote a blog post on research because I did a TON of it at first, I did it the wrong way, and it really scared the crap out of me. http://eluminarts.com/?p=247
Here are the main points I learned:
Don’t Let Statistics Bring You Down: There's a tremendous article by Stephen J. Gould, a noted biologist who was diagnosed with a quick-moving, deadly form of cancer. It's called The Median Isn't The Message/ http://www.cancerguide.org/median_not_msg.html
Pay Attention To Dates: Cancer treatment changes all the time--no exaggeration. An article even 3-4 years old may be outdated by now. Check the dates on every article or blog you read.
Look For Information, Not Answers: Think of this as arming yourself to pepper your doctors with questions, rather than answering your own questions. If your doctor can't or won't answer all your questions, it's a sign you should switch to a new one!
Remember That You Are Unique: When you start reading, you'll naturally assume everything you read will happen to you. It won't. Don't let yourself go there. The only way you'll know what you will experience is when you experience it. Your age will make a big difference, I think!
Know Your Own Limits: Watch for when you feel like information is bumming you out instead of empowering you, and take a break or even stop. It's easy to get obsessed and find yourself missing out on life because your head is buried in articles (at least, it was for me).
Hope this helps!
sorry you have joined our elite club.........but I'm SO glad you found this group!!
Laralyn gave you some really good guidelines.....Knowing yourself (your limits) heads the list. I was told right in the beginning to stay off Google. I do know myself, and chose to do as I was told....I tend to "bleak" myself half to death. Google is off limits to me.
You are going to get thru this, just like so many others ahead of you....and so many others that are here starting treatment with you......I'm a week behind Laralyn, Ditto and Sam are a couple weeks behind me....we're in this together, and we're going to make it out the other end of the tunnel together! Just grab a hand...we'll pull you through with us.
p0 -
Thanks for the encouragement!phrannie51 said:Hi Megan........
sorry you have joined our elite club.........but I'm SO glad you found this group!!
Laralyn gave you some really good guidelines.....Knowing yourself (your limits) heads the list. I was told right in the beginning to stay off Google. I do know myself, and chose to do as I was told....I tend to "bleak" myself half to death. Google is off limits to me.
You are going to get thru this, just like so many others ahead of you....and so many others that are here starting treatment with you......I'm a week behind Laralyn, Ditto and Sam are a couple weeks behind me....we're in this together, and we're going to make it out the other end of the tunnel together! Just grab a hand...we'll pull you through with us.
p
My doctors thinks I have a really good prognosis because they caught the cancer before it spread. What scares me is the rarity and lack of info on my particular type of cancer. My MO showed me his reading material from his research and there was less than a page. I have a very strong faith in God and so even though I believe that modern medicine is great ( and I'm thankful for access to it) , I still have a fear of the unknown. I got really depressed this past weekend when I saw that Adam Yauch from the Beastie Boys had died because he also had salivary gland cancer like I do. I have a young daughter (11 months) and it scares me and makes me so sad to think that she might have to grow up without me or live through future treatments with me. I know also that only God knows what the future holds so it doesn't make a lot of sense to dwell on the what ifs. Everyone around me keeps telling me that I'm being strong, but I don't feel very strong right now....I feel like my head is constantly swimming with thoughts. Thanks for allowing me to vent. Praying hardcore for all of you!0 -
Grademeaganb said:Thanks for the encouragement!
My doctors thinks I have a really good prognosis because they caught the cancer before it spread. What scares me is the rarity and lack of info on my particular type of cancer. My MO showed me his reading material from his research and there was less than a page. I have a very strong faith in God and so even though I believe that modern medicine is great ( and I'm thankful for access to it) , I still have a fear of the unknown. I got really depressed this past weekend when I saw that Adam Yauch from the Beastie Boys had died because he also had salivary gland cancer like I do. I have a young daughter (11 months) and it scares me and makes me so sad to think that she might have to grow up without me or live through future treatments with me. I know also that only God knows what the future holds so it doesn't make a lot of sense to dwell on the what ifs. Everyone around me keeps telling me that I'm being strong, but I don't feel very strong right now....I feel like my head is constantly swimming with thoughts. Thanks for allowing me to vent. Praying hardcore for all of you!
Hi Meaganb,
And welcome to the forum. I guess you already know how there are a great many people here who will support you all they can.
I too had a rare Salivary Gland cancer. Not yours specifically but in the ballpark. Yes, it is a bit discouraging to not get much information from your doctor but it's all they have. Mine was Mucoepidermoid Carcinoma with the tumor on the base of my tongue. I talk in the past tense because I consider myself a survivor. The cancer is gone as far as I'm concerned and until they tell me different.
When they removed the tumor, did they tell you the grade? Adam Yauch must have had an aggressive type or they just didn't get all of it. The news didn't say exactly which one he had. Mine was graded low so I didn't need to have chemo, just radiation, and a low dose at that.
But please don't worry so much about this even if it is an aggressive type. Oral Cancer has a really good record of survival. Get your information here, not Google or any other search engine. Like was stated before, it is old information and not very accurate. We've been there.
Stay Well and consider some Xanax too, it may help.
Tom0 -
Gradetommyodavey said:Grade
Hi Meaganb,
And welcome to the forum. I guess you already know how there are a great many people here who will support you all they can.
I too had a rare Salivary Gland cancer. Not yours specifically but in the ballpark. Yes, it is a bit discouraging to not get much information from your doctor but it's all they have. Mine was Mucoepidermoid Carcinoma with the tumor on the base of my tongue. I talk in the past tense because I consider myself a survivor. The cancer is gone as far as I'm concerned and until they tell me different.
When they removed the tumor, did they tell you the grade? Adam Yauch must have had an aggressive type or they just didn't get all of it. The news didn't say exactly which one he had. Mine was graded low so I didn't need to have chemo, just radiation, and a low dose at that.
But please don't worry so much about this even if it is an aggressive type. Oral Cancer has a really good record of survival. Get your information here, not Google or any other search engine. Like was stated before, it is old information and not very accurate. We've been there.
Stay Well and consider some Xanax too, it may help.
Tom
I don't know the grade or stage or if those are even two different things. The tumor was 3 cm at it's widest part so from my own research that means it was stage II. The little bit of research they do have on ACC supports that it doesn't really respond to chemo so I am only getting radiation. Things could be worse, it could have spread to lymph nodes or elsewhere. I am trying to be positive. And my husband has already told me that I am banned from google searches.
reading posts on here is super encouraging. I don't personally know anyone who has been through radiation so it's nice to have others to walk through this with. 0 -
Oh and Xanax and I don'tmeaganb said:Grade
I don't know the grade or stage or if those are even two different things. The tumor was 3 cm at it's widest part so from my own research that means it was stage II. The little bit of research they do have on ACC supports that it doesn't really respond to chemo so I am only getting radiation. Things could be worse, it could have spread to lymph nodes or elsewhere. I am trying to be positive. And my husband has already told me that I am banned from google searches. reading posts on here is super encouraging. I don't personally know anyone who has been through radiation so it's nice to have others to walk through this with.
Oh and Xanax and I don't agree. It makes me groggy and I'm the primary caregiver for my daughter while my husband works. I do wish I could tolerate it better though sometimes. I think it would definitely calm me down. 0 -
Hi Meagantommyodavey said:Grade
Hi Meaganb,
And welcome to the forum. I guess you already know how there are a great many people here who will support you all they can.
I too had a rare Salivary Gland cancer. Not yours specifically but in the ballpark. Yes, it is a bit discouraging to not get much information from your doctor but it's all they have. Mine was Mucoepidermoid Carcinoma with the tumor on the base of my tongue. I talk in the past tense because I consider myself a survivor. The cancer is gone as far as I'm concerned and until they tell me different.
When they removed the tumor, did they tell you the grade? Adam Yauch must have had an aggressive type or they just didn't get all of it. The news didn't say exactly which one he had. Mine was graded low so I didn't need to have chemo, just radiation, and a low dose at that.
But please don't worry so much about this even if it is an aggressive type. Oral Cancer has a really good record of survival. Get your information here, not Google or any other search engine. Like was stated before, it is old information and not very accurate. We've been there.
Stay Well and consider some Xanax too, it may help.
Tom
Welcome to the board! This is a wonderful place, it really is.
I can't add much to what has already been said. Clear nodes and clear margins - those are two words which should be music to your ears! If they think they got it all then the rads are to kill it stone dead - an insurance policy to make sure.
I share a few things with you - firstly too young as well (not as young as you I am 34 got it at 33), I also have a salivary gland cancer (mine is MEC the same as Tommy's) and I also have a young family 1 and 3 years old).
I had a dissection too, two weeks ago as well as a tonsil removal and BOT biopsy. Everything clean and no sign of a primary anywhere so am doing 4 monthly scans at the moment to see if anything turns up. No sign on PET or MRI or CT, hopefully there isn't one!
Salivary gland cancers are very rare indeed, not related to anything you've done that they know of so far - just 'plain bad luck'. But with the results of your surgery you sound like you are in a great position to beat it.
I too was sad about Adam Yauch, not least because I loved the Beastie Boys and admired him a lot. But we are all different and although I don't know either situation I'd bet his prognosis wasn't as good as yours which you have outlined above.
I think the 'my kids are going to grow up without me' is an inevitable thing to go through your head. It was and still is my biggest fear, but we have to use that as inspiration to say we're not going anywhere because they need us.
The people in here are getting through this together, welcome to the forum we are all here for you.
You will win this battle and come out stronger on the other side.
All the best
Leo0 -
There are other anti-anxiety/depressennts....meaganb said:Oh and Xanax and I don't
Oh and Xanax and I don't agree. It makes me groggy and I'm the primary caregiver for my daughter while my husband works. I do wish I could tolerate it better though sometimes. I think it would definitely calm me down.
Since I started treatment I started taking Celexa....it doesn't make me tired but I've only been taking it for two weeks.
I'm so glad you found this forum....it truly is a life-saver...
P0 -
There are other anti-anxiety/depressennts....meaganb said:Oh and Xanax and I don't
Oh and Xanax and I don't agree. It makes me groggy and I'm the primary caregiver for my daughter while my husband works. I do wish I could tolerate it better though sometimes. I think it would definitely calm me down.
Since I started treatment I started taking Celexa....it doesn't make me tired but I've only been taking it for two weeks.
I'm so glad you found this forum....it truly is a life-saver...
P0 -
We're in the same boat.
Megan,
I read your history, and we have similar stories. I was diagnosed with ACC last September. I had my surgery in December, and finished my 33 radiation treatments in early April. I had a salivary gland tumor in my soft palette, with mets to two lymph nodes in my left jaw. No clear margins, 45 lymph nodes removed with just 2 positive. And a wicked cool scar to boot. So I've been in your shoes. While the medical literature can be very discouraging, the stories of survivors on networks like this one are much more encouraging. I found the ACC support group through ACCOI.org to be helpful, also google "cheeky librarian" she is an ACC survivor with a blog that is very informative. I wish you the best as you continue your radiation treatments, and your recovery afterwards.
Best of luck,
Dave0 -
DaveACC911!DaveACC911 said:We're in the same boat.
Megan,
I read your history, and we have similar stories. I was diagnosed with ACC last September. I had my surgery in December, and finished my 33 radiation treatments in early April. I had a salivary gland tumor in my soft palette, with mets to two lymph nodes in my left jaw. No clear margins, 45 lymph nodes removed with just 2 positive. And a wicked cool scar to boot. So I've been in your shoes. While the medical literature can be very discouraging, the stories of survivors on networks like this one are much more encouraging. I found the ACC support group through ACCOI.org to be helpful, also google "cheeky librarian" she is an ACC survivor with a blog that is very informative. I wish you the best as you continue your radiation treatments, and your recovery afterwards.
Best of luck,
Dave
So glad that you finished treatments! I can't wait till June 11th when I can say the same!! Btw, I have a pretty awesome scar myself from surgery. It starts under my chin and goes almost to my right ear. All my friends say I should make up a story about being in a gang fight:)0 -
Thanks for giving hope!LeoS2323 said:Hi Meagan
Welcome to the board! This is a wonderful place, it really is.
I can't add much to what has already been said. Clear nodes and clear margins - those are two words which should be music to your ears! If they think they got it all then the rads are to kill it stone dead - an insurance policy to make sure.
I share a few things with you - firstly too young as well (not as young as you I am 34 got it at 33), I also have a salivary gland cancer (mine is MEC the same as Tommy's) and I also have a young family 1 and 3 years old).
I had a dissection too, two weeks ago as well as a tonsil removal and BOT biopsy. Everything clean and no sign of a primary anywhere so am doing 4 monthly scans at the moment to see if anything turns up. No sign on PET or MRI or CT, hopefully there isn't one!
Salivary gland cancers are very rare indeed, not related to anything you've done that they know of so far - just 'plain bad luck'. But with the results of your surgery you sound like you are in a great position to beat it.
I too was sad about Adam Yauch, not least because I loved the Beastie Boys and admired him a lot. But we are all different and although I don't know either situation I'd bet his prognosis wasn't as good as yours which you have outlined above.
I think the 'my kids are going to grow up without me' is an inevitable thing to go through your head. It was and still is my biggest fear, but we have to use that as inspiration to say we're not going anywhere because they need us.
The people in here are getting through this together, welcome to the forum we are all here for you.
You will win this battle and come out stronger on the other side.
All the best
Leo
I absolutely hate to hear about anyone getting cancer but it really makes my heart sad when people are so young and have young families. My MO asked me on the first day I saw him if we wanted more babies and I told him yes! He said he'd make sure we got them. I know that overall my situation is hopeful, it can just be really easy to get depressed. I really am thankful for this board though. It's much more hopeful than anything else I've read.0 -
The Scar Clubmeaganb said:DaveACC911!
So glad that you finished treatments! I can't wait till June 11th when I can say the same!! Btw, I have a pretty awesome scar myself from surgery. It starts under my chin and goes almost to my right ear. All my friends say I should make up a story about being in a gang fight:)
Think there are lots of members on here of that posse! My dissection was just over 2 weeks ago, scar goes from throat to ear! It's got infected unfortunately so I'm back in hospital on IV antibiotics right now but it doesn't seem such a big deal!
Things are in perspective these days - this is just a little hurdle to get over...:-)
All the very best of luck for the rest of your treatments!
Leo0 -
Same to you Leo! I hope youLeoS2323 said:The Scar Club
Think there are lots of members on here of that posse! My dissection was just over 2 weeks ago, scar goes from throat to ear! It's got infected unfortunately so I'm back in hospital on IV antibiotics right now but it doesn't seem such a big deal!
Things are in perspective these days - this is just a little hurdle to get over...:-)
All the very best of luck for the rest of your treatments!
Leo
Same to you Leo! I hope you heal quickly!0 -
Grade Againmeaganb said:Same to you Leo! I hope you
Same to you Leo! I hope you heal quickly!
meaganb,
I went back and looked at your first post and it said that it had clear margins. Mine did too so it sounds like a lower grade one because it didn't have roots spreading all over the place. That is really good news!
You should see my neck scar. He cut me from almost ear to ear. The right side he took out 50+ nodes with two being positive. He also removed my parotid major salivary gland just to be sure and also knowing I would lose it anyway with the radiation. Then on the left, he moved my gland to more center so it wouldn't get fried from the rads. Having half of my saliva is sure better than none. I need to suck on a button or something like that!
Your frame of mind sure has gotten better since this conversation started. Being positive and not letting the C win any ground is important. Keep up the good fight. This will be over in no time.
BTW, if you want to see my neck scar, click on my pic and go to expressions. I posted a few there.
Tom0 -
Yeah, I definitely have badtommyodavey said:Grade Again
meaganb,
I went back and looked at your first post and it said that it had clear margins. Mine did too so it sounds like a lower grade one because it didn't have roots spreading all over the place. That is really good news!
You should see my neck scar. He cut me from almost ear to ear. The right side he took out 50+ nodes with two being positive. He also removed my parotid major salivary gland just to be sure and also knowing I would lose it anyway with the radiation. Then on the left, he moved my gland to more center so it wouldn't get fried from the rads. Having half of my saliva is sure better than none. I need to suck on a button or something like that!
Your frame of mind sure has gotten better since this conversation started. Being positive and not letting the C win any ground is important. Keep up the good fight. This will be over in no time.
BTW, if you want to see my neck scar, click on my pic and go to expressions. I posted a few there.
Tom
Yeah, I definitely have bad moments but it's hardly ever an entire bad day. It's kind of hard to stay down when I'm with my daughter. She's learning how to walk and making all sorts of noises trying to talk and she is just the most precious gift the Lord could have blessded me with. She was born six weeks after my dad died suddenly last year and I always thought how awesome God was that he gave her to me so soon after. Now she's helping me get through this as well.:) you have a pretty awesome scar. People say they wouldn't know mine was there if they didn't know I had surgery but I think they are just being nice:) I don't care that much either way though. The scar is a part of me know and I'm proud I've made it this far! All the best to you Tom!0 -
Good Luckmeaganb said:Yeah, I definitely have bad
Yeah, I definitely have bad moments but it's hardly ever an entire bad day. It's kind of hard to stay down when I'm with my daughter. She's learning how to walk and making all sorts of noises trying to talk and she is just the most precious gift the Lord could have blessded me with. She was born six weeks after my dad died suddenly last year and I always thought how awesome God was that he gave her to me so soon after. Now she's helping me get through this as well.:) you have a pretty awesome scar. People say they wouldn't know mine was there if they didn't know I had surgery but I think they are just being nice:) I don't care that much either way though. The scar is a part of me know and I'm proud I've made it this far! All the best to you Tom!
Hi Meganb,
I am also 27 and recently found a lump in my mouth...awaiting diagnosis. You will beat this thing!
I am inspired by your talk about your father and daughter! My wife and I were literally going to start trying to have kids in a couple of weeks but I guess we have to deal with this first!
Happy Mother's Day!
Greg0
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