Newly diagnosed

Hi Kars ...

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 said:

When I first read your post

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.

Kars
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 said:

I agree

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

specialist

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.

 

Welcome....but get a 2nd opinion ASAP

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.

 

 

 

Are you at a cancer center ?

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)

How are

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.

2nd Opinion!

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"

 

Kars5969 said:

Update

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.

The Big City of Spring Hill....

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