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Newly diagnosed

Kars5969
Posts: 12
Joined: Feb 2013

I was just diagnosed today with T1 SNUC. Had surgery on January 31, 2013 to remove nasal obstruction. What should I do next? My doctor is very unfamiliar with this and he is actually researching information also. Any help would be appreciated!  My doctor thinks I will need 6 weeks of photon radiation 5 days a week.

 

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Sorry you have to join our group, but a great place to be.

Now I don't wnat you to take this the wrong way, but PLEASE, if your doctor does not understand what you are to do next, you really need to go to a comprehensive cancer treatment center, if you live in a small town as I do, then you need to prepare to make a trip to the closest certified cancer center (even if it is not a comprehensive cancer treatment center)

Please see the "superthread" at the top of this forum you are visiting...it is always the first discussion at the top of the page....also visit the oral cancer foundation website www.oralcancerfoundation.org.

What you have is very treatable  / beatable ...but you do need to be certain you have the correct team in place to deliver the best possible care ....no insult to your doctor intended ....

Keep us posted...

Tim

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

I thought the exact same thing that Tim did but I didn't want to say it.  It is a touchy subject but I agree with Tim wholeheartedly.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I'm sure you have a wonderful doctor but I really feel you need to see a specialist. A good start would be an ENT who specializes in Head and Neck cancer. From that point he can refer you to a radiation oncologist and a medical oncologist. This is not a rare form of cancer that should have a doctor baffled and at a loss for what to do. This is very treatable and with the right doctors you will know exactly what treatment is needed.
Welcome to our club by the way :-)
Billie
P.s. If you let us know the area you live in, maybe someone on here can refer you to an ENT or oncologist

Ladylacy
Posts: 484
Joined: Apr 2012

You definitely need to see someone who specializes in head and neck cancer.   Treatment for head and neck cancer is hard but very doable.  If you live in a small town, there should be someone who can recommend a specialist, otherwise check with the Cancer society or goggle doctors for your area that deal with your type of cancer or cancer centers for that matter.

Best of luck

Noellesmom
Posts: 1304
Joined: Aug 2010

Perhaps it is your family doctor who has given you the diagnosis but will be sending you to an oncologist to have your treatment.  I don't think a family doctor has access to the equipment needed for the radiation.

If this is the not the case, ask for a referral to a radiation oncologist immediately, then come back and let us know what you find out.

 

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Get yourself to an ENT that knows what he is doing and has experience....

Welcome aboard...

John

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Welcome Kars

Ditto to what others have said.   You need to get to an experienced ENT (Ear, Nose & Throat specialist) ASAP.  Preferably one  experienced with Head & Neck Cancer as Billie says, and associated with a Comprehensive Cancer Center.     Many of us had 6-7 weeks of radiation therapy so that part sounds accurate.  Only an experienced team can confirm that....and whether or not you may need chemo.

Please let us know where you live (city and state), one of us may be familiar with a top notch medical team in your area.

We are here to help you in any way we can...we have all become pros in this area.

 

 

 

phrannie51's picture
phrannie51
Posts: 3745
Joined: Mar 2012

that I can only ditto the above folks here....you need to prepare yourself to get to a big cancer center.  Your cancer is T1 right now, that means it has been caught early....

Do say where you are, so someone here might be able to direct you to a center where even rare cancer isn't that rare...and the precise equipment needed to treat it is in place and the people trained to run it, are the highest quality.

p

katenorwood
Posts: 1832
Joined: May 2012

Hey there !

If your doctor is unfamiliar with this dx....and is looking up information, I would think maybe he/she will send you on to a more experienced onc.  Any dx is crazy scarey rare or not.  During surgery did they achieve clear (clean) margins ?  Please remember all your questions and concerns are valid !  And you derserve proper answers from the people experienced in the tx's of your dx.  With me, once the surgery was over with, the ENT stayed in the back ground...and the rad doc, and medical onc took over.  I did move on to a second opinion, and now have a tumor board involved in my care.  Good luck with everything and keep us updated.   Katie  (mine was H/N adenoid cystic carcinoma 2011)

HobbsDoggy
Posts: 165
Joined: Feb 2013

Agree with everyone.  A GP or even a general ENT person does not have the skills it takes to deal with head and neck cancer in detail.  They are the starting point that is what the are really good at doing.  Get to a specalist as soon as possible.  At T1 you got it early and even if its much later than T1 this cancer can be beat.  Also never hurts to get a second opinion no matter where you go.  Sometimes we can't go too far but hopfully there is some place close that has specalists.  Whishing you the best.

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

you doing from surgery? My ENT didn't feel comforable treating my cancer, epiglottis, removed November 2,2011, and he referred me to a surgeon at The James in Columbus, Ohio. My surgery was done by a top notch surgeon and his team using the de vinci robot...I sincerely hope you have sought the best care possible. Please keep us posted.

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

you doing from surgery? My ENT didn't feel comforable treating my cancer, epiglottis, removed November 2,2011, and he referred me to a surgeon at The James in Columbus, Ohio. My surgery was done by a top notch surgeon and his team using the de vinci robot...I sincerely hope you have sought the best care possible. Please keep us posted.

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Kars,

Sorry and glad at the same time you found us. I echo what everyone has said. I can tell you from personal experience, please seek a 2nd opinion at an acredited cancer center. Typically, you'll need a "team" of doctors to help you fight this beast. Confidence in your team is vital. 

Here is a listing of nationally ranked cancer centers http://health.usnews.com/best-hospitals/rankings/cancer. 

"T"

 

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Kars,

please let us know where you live.... city and state...or even country.

We have people on here from all over the world.  It would give us a better idea of where you could go for  2nd opinion.

 

Kars5969
Posts: 12
Joined: Feb 2013

I live in spring hill Florida.  Ibe done a lot of research and found a cancet center that I feel comfortabe with.  I apologize - I have posted but I can't seem to find my posts or reply to my original post.  I'm typing on my iPhone so maybe that's why.  I appreciate all the replies.  I'm scheduled to start radiation 5 days a week for 6 week and chemo erbitux and cisplatin one day a week for 6 weeks.

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Actually Moffitt in Tampa is pretty well known for cancer treatment...

I am in Lakeland and went to The Center of Cancer Care and Rsearch Watson Clinic, which is also affilliated with Moffitt...welcome cracker.

I can highly, highly recommend MD. Jean' and Watson Clinic where I was treated, and as others said, I had a team.

MD. Jean was my main man, he's an ENT that graduated from Harvard Medical School, did his internship at John Hopkins...

MD. Mulaparthi, my Hemotologist/Oncologist, and MD John Barrett my Rads man..

The chemo center nurses are awesome as are all of my MD's...

If you need anything I can help you out with related, give me a shout out...

I answered about a way to research your previous posts, on another post of yours...

Best ~ John

cic2
Posts: 12
Joined: Dec 2012

Moffitt In top 20 of cancer centers in nation- my husband treated there- highly recommend go to an NCI (National Cancer Insittue) cancer center if it's not too far. Or to get a second opinion. DrMcaffrey trained at Mayo- they know what they are doing.

Kars5969
Posts: 12
Joined: Feb 2013

Is there anyway to get notifications sent when someone replies?

Kars5969
Posts: 12
Joined: Feb 2013

I just found out that i have 13 treaments left.  Plus one more round of chemo.  I asked the doctor - so what's next?  If the tumor is still there what do we do next?  Do we start another round of treatment?  what?  He said if it didn't work then there is nothing they can do.  Are you kidding me?  i find this hard to believe that I only get one chance at this and if it doesn't work then I'm done.  Has anyone else ever heard of this?  Where should I got next?   I'm not just going to lay down and die.  Any advice please would be appreciated!! 

Kars5969
Posts: 12
Joined: Feb 2013

I just found out that i have 13 treaments left.  Plus one more round of chemo.  I asked the doctor - so what's next?  If the tumor is still there what do we do next?  Do we start another round of treatment?  what?  He said if it didn't work then there is nothing they can do.  Are you kidding me?  i find this hard to believe that I only get one chance at this and if it doesn't work then I'm done.  Has anyone else ever heard of this?  Where should I got next?   I'm not just going to lay down and die.  Any advice please would be appreciated!! 

phrannie51's picture
phrannie51
Posts: 3745
Joined: Mar 2012

you still have at least 1/2 of your rad treatments left to go, and one more chemo treatment....there is really no good time for stepping out into the future, but right now is the worst time I can think of ...  Your words tell me that you have a lot of fight in you...so for the time being let that fight carry you thru treatment....tomorrow will be here soon enough, there's no sense in projecting possibilities that are a long ways off, possibles of which you have no control....and if you sit down and think about it....most of the dreaded possibilities we dream up in our heads never come to pass. 

You said you have faith in the cancer center you have chosen.....good....keep that faith....and as one of our cohorts on this site says....."BELIEVE!!!  You are going to survive this, so get used to the idea!".....

p  

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

the doctors don't know God's plan.   Cool

God bless,

dj

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

If it were me, and at the end of treatment after you have follow-up scans and they show you as still having cancer. annnnd then if your facilty had nothing left for you...

It's time for a new facility and other opinions...

JG

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