Sinonasal Undifferentiated Carcinoma

Hello! I'm a healthy, 45-year-old male very recently diagnosed with SNUC. While the doctors review my tests and decide treatment, I wondered if anyone has any advice or encouraging stories? Worst case scenario I may lose both eyes. What should I expect? I appreciate any insight! 

 

On 4/14/2008 McGiver wrote:

Hello! I'm a healthy, 45-year-old male very recently diagnosed with SNUC. While the doctors review my tests and decide treatment, I wondered if anyone has any advice or encouraging stories? Worst case scenario I may lose both eyes. What should I expect? I appreciate any insight! 

If you look further on this sight there is over 200 letters about this condition. All the best Lilypilly

 

On 4/14/2008 McGiver wrote:

Hello! I'm a healthy, 45-year-old male very recently diagnosed with SNUC. While the doctors review my tests and decide treatment, I wondered if anyone has any advice or encouraging stories? Worst case scenario I may lose both eyes. What should I expect? I appreciate any insight! 

 My 17 year old son was diagnosed with SNUC in Feb. 2008.  He is receiving daily radiation treatments and 3 days of chemo every 3 weeks.   He has had 26 radiation treatments, with another 7 - 10 treatments expected. The chemo drugs he is getting are VP-16 (Etoposide) and Cisplatin.  So far, things are going pretty well.  Other than mouth sores, he is handling this well.  He had an MRI this week and it showed the tumor has shrunk.  We are awaiting a decision from the doctors about how many more radiation/chemo treatments he will need, but we are encouraged by the MRI.  His tumor started in his sinus and grew toward his brain.  He is fortunate that it has not effected his optic nerve, but we have been told that the radiation may damage the nerve somewhat.  Only time will tell.  God bless you!

 

Thank you for replying! The more I learn about SNUC, the better I can combat it!

 Please tell your son to hang in there...what a brave young person! Sounds like things are going his way!!!!

I am still waiting for surgery. My team believes surgery is the first step, followed by radiation. My tumor is quite large, and is definitely effecting my eyes.

 Keep in touch, and send your son my very best!

 

On 4/21/2008 McGiver wrote:

Thank you for replying! The more I learn about SNUC, the better I can combat it!

 Please tell your son to hang in there...what a brave young person! Sounds like things are going his way!!!!

I am still waiting for surgery. My team believes surgery is the first step, followed by radiation. My tumor is quite large, and is definitely effecting my eyes.

 Keep in touch, and send your son my very best!

McGiver, I too wanted to learn all there was to learn about SNUC. I doubted my ENT and Oncology doctors, tried to second-guess them. and went for a 2nd opinion. What I found was that there are only about 100 recorded cases in medical literature in the English language, that my doctor was the top specialist in this cancer in my area, and that the treatment regimen recommended was exactly the one used with those who survived. When I told him "it looks like we are all looking at the same database" he said "you did your homework."

I'm 38 yrs old, was diagnosed with SNUC June 2006, did chemo and radiation Aug 2006, had cranial facial surgery Oct 2006 (and 3 others due to complications thru Jan 2007), had eye surgery Nov 2007 and a final eye surgey Feb 2008 which restored my sight. I am so thankful to my doctor that I sent her office an arrangement of flowers. 

I wish you well!

My husband does not have the same type of cancer but we went to Fla yesterday for a consult.I  asked for this cancercompass group about proton radiation therapy. This doc's wife heads up the use in Jacksonville, Fla. He mentioned they are using it for sinus cancer. I think I would check into it!

DeniseB

Thanks for the reply and best wishes to you as well!

Would you be willing to share the name of your doctor? And can you elaborate on what kind of "complications" I might need to be aware of? Honestly, I have never had surgery before in my life, so I feel like I am really entering uncharted waters!

 

Thanks again!!!

Sure.  A couple of days after surgery, when I was still unconscious, the male nurse noticed I was kicking and punching. He relayed this to the doctor who ordered an mri or scan right away. My head had filled up with blood and spinal fluid. They took me to surgery and opened a freshly-replaced piece of skull (about the size of 2 golf balls put together) to drain me. This happened a 2nd time after which they attached tubes to the back of my head to drain the fluids for a week and left the piece of skull off for 3 months.

I'm sorry I forgot to give you the doctor's name. He is Dr. Lawrence DiNardo (ENT in Oncology) with MCV Hospitals, part of the VCU Health System in Richmond.  Other notable specialists I found were in the UVA Medical Center, Sloan-Kettering in NY, MD Anderson in Houston, and UCLA.

I am sorry I don't have a lot of info about the proton therapy, but this doc is (according to multiple radiation oncologists) "world renowned" and well published--google him and his wife.--Dr William "Bill" Mendenhall and Dr Nancy Mendenhall. He said they were using the proton unit for sinus cancer because of the possible complications the cancer treatment can cause  the optic nerves.

Dr Bill is at Shands Hospital--employeed by Univ. of Fla. and his wife is working out of Jacksonville, Fla.

Keep us updated!!

DeniseB