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SNUC (sinunasal unadifferentiated carcinoma)

1sunnyday
Posts: 2
Joined: Nov 2009

Would like to know if anyone out there has this. It is a very rare form of cancer. My husband was diagnosed in February 2009. He has been through 6 rounds of Chemo(cisplatin+taxotere) and 33 rounds of radiation. Had surgery on Sept 29,2009 and had remaining tumor removed. Due to tumor still being present in scar tissue in eye, right eye had to be removed. He is now healing and getting better as days go by but it is hard some days. If anyone is going through similar cancer would like to hear from you and get much needed support.

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Hondo
Posts: 6238
Joined: Apr 2009

A friend of mine had this type of cancer it is not as rare as they tell you. He had to have his left eye taking out of place in order for the doctors to remove the cancer in the back, the cancer we not in the eye so they were able to put it back in place. That been about 5 years ago, he works as a Captain on a Diving Ship he has been back almost 4 ½ years and doing great, little side affect and no Cancer.

Kars5969
Posts: 12
Joined: Feb 2013

I was newly diagnosed.  What stage did your friend have?  How is he now?

Cindy M
Posts: 1
Joined: Apr 2010

Yes, I had this. I was diagnosed Nov, 2005. Yesterday was my 4 yr anniversary of cancer freedom !!! I had all my treatment at MD Anderson. I had surgery, chemo and radiation.

seifam
Posts: 1
Joined: May 2010

Yes, I am a survivor of this type of cancer. It is very rare, but one on which there has been tremendous progress. After all three types of treatment (chemo, radiation, and surgery) at MD Anderson in 2004-05, my doctors have pronounced me "cured." It is a terrible disease, but can be surmounted with persistence and the right doctors. I hope your husband is doing exactly what the doctors tell him to. With you at his side and a positive attitude, he WILL survive it. The best of luck to you both!

songwh
Posts: 1
Joined: May 2010

Hi! Seifam,

Thanks for sharing such encouraging news. Congratulations on your full recovery.

My name is Weihong. I am a 35 years old mother of two young kids (my son is only 20 months old and my daughter is 6 years old). I have been diagnosed with a sinus cancer in the right side of my ethmoid sinus (undifferentiated squamous cell cancer from the biopsy test) on March 8th, 2010 and I was devastated. The tumor is locally advanced (stage 4) with extensions toward my brain, right eye, and nasal cavity, but it has not metastasized. My doctor started chemo treatment for me on March 26th with Docetaxel, Cisplatin and 5-FU. I have just completed two cycles of chemo treatment, and the MRI scan results taken on May 5th showed a little improvement. By the way, I am HPV negative. The doctors will have a tumor board meeting tomorrow and try to decide what the best treatment next step is for me among surgery, radiation, chemo-radiation. I was very disappointed at the treatment result, and thought I should do more research on my own.

It was very hard to find much SNUC survivor info on the internet. Then I came across this site and there is some encouraging news here. I am wondering if you could share more information about your own case, so that I and others who are going through this terrible disease can have something to gauge our own case and help us make informed decision.

Below are some questions about your case that will be very helpful for me, I hope you can answer them at your earliest convenience. Thanks a lot.

1. Where did you get treated?

2. Where was your cancer exactly located? Which sinus was it in?

3. What kinds of chemo drug were you given? for how long? (This is very important for me as the two cycles of chemo treatment that I have received so far did not work well)

4. Was your cancer HPV positive? (This is also very important as Cancer with positive HPV responds well to treatment, but mine is HPV negative)

5. What type of radiation therapy did you get: IMRT or proton radiation?

6. Which hospital did you get your surgery done? Who was your surgeon?

7. Do you have any suggestions on diet that may have helped with your case?

My family and I really appreciate your help. I look forward to your reply. Thanks a lot.

Weihong

gloria22
Posts: 2
Joined: Jun 2010

My mother was diagnosted on May 18 after several months on wrong diagnostic. We saw another Doctor (ENT)and we got the diagnostic. We live near to San Diego and we got a second opinion that specialist nose and neck told me my mom has SNUC and we waitining this week to meet with medical doctor (chemo) and radiologist. Can you share more information with me..I tried to help my mother..thank you

gloria22
Posts: 2
Joined: Jun 2010

Can you tell more about your treatment? my mom is too scare about radiation and chemo treatments. I really appreaciate your help.

marl35m
Posts: 1
Joined: Aug 2011

Hello there.. I just discovered this site today and came across this discussion board. There has not been anything written in over a year on this particular board. I would love an update as to how you are doing now. My dad was diagnosed almost 2 years ago, and this particular cancer is so rare, that he has yet to meet or talk to a single person out there that is going through something similar as himself. I hope you are doing wonderfully and I'm excited to hear of your progress!

Cara M.

tesa's picture
tesa
Posts: 122
Joined: Feb 2011

Hi Cara,
My mother was diagnosed with paranasal cancer in June of 2010 in the nasal cavity , maxillary sinus and part of ethmoid sinus. She had surgery and radiation in Charleston. Now she's undergoing chemo at MD Anderson. Any cancer of the sinus is so rare. I'd love to hear about your experience. Even though paranasal isn't quite the same as your dad's, it is very similar with it being in the sinuses. please let me hear about your dad's experience.
To my knowledge my mother is the only one on this board who had paranasal cancer...it's very lonely.

Obxbeach
Posts: 1
Joined: Sep 2011

Hello-
My husband was diagnosed with snuc in April. After the poor prognosis, I was able to get us in with a self referral to MD Anderson in Houston, Texas. I don't think there is a standard course of treatment for this type of cancer. We started induction chemo at home (NC) under the direction of our doctors at Anderson (2 rounds). We came back to Anderson at the beginning of June and the MRI showed progression. They immediately started planning for radiation/ chemo concurrently (imrt radiation). So far he has had 4 rounds of chemo and 7 weeks of radiation. It was horrible. They ended up putting a feeding tube in. Sounds bad, but enables him to receive nutrition and hydration. We are now back at Anderson for our post chemo/radiation MRI and pray the disease has not progressed. The did a MRI in the middle of radiation and unfortunately it was the same as the one done before. However, my husband is symptomatically doing ok. The feeding tube is still in place, but he is starting to eat again. MD Anderson has been wonderful and we are thankful we can come here for his care. Praying for good news from his latest MRI!!!! I would love to connect with others going through the same thing.

buffygnu
Posts: 1
Joined: Aug 2011

Hi Cara and Tesa,
My brother Ed, 47yo, was diagnosed with SNUC last week. We are all devastated. He is the only one in the family that never smoked. He is starting treatment at University of Pennsylvania next week, chemo. We meet with the surgeon Friday to find out what his options are. He has always been healthy, except for sinus problem since childhood. he is a scuba instructor in the Philippines for the last couple years and i wonder if the concentrated oxygen and nitrous may have contributed to this cancer.Cara i would love to here about your dad's journey and how your family handled everything. thnx mary

linnron
Posts: 1
Joined: Feb 2012

My husband was diagnosed with SNUC in April 2010. Luckily, he was treated at University of Pennsylvania. He had surgery, chemo and radiation (IMRT).Treatment ended in October 2010. He was never sick in his life, no surgeries prior. He gained weight prior to treatment and has had such a positive attitude throughout the whole ordeal. His tumor extended from the dura of his brain throughout his sinuses, wrapping back to the carotids. Drs. successfully removed the tumor without losing his eye. He went through what most of you have either read or gone through....lost weight, hair, steroid rage (quickly corrected). The biggest loss was his sense of smell and taste which will not return, but he IS HERE! He also had some heart issues which were probably radiation related, but all taken care of.

April 2010 and now February 2012....we just had a PET scan and he is still CLEAR. Yes, he misses not tasting food, he has everyone fooled. His strength is about 70% back to normal, still tires earlier than pre-cancer diagnosis. I cannot say or give enough praise to all of the people involved at the University of Penn. I drove him 2.5 hrs. one way every day for 7 weeks and it was worth every minute.

We both ride motorcycle and he is back riding! His motto was always do what we have to do and get it done. He would joke with the staff and all the patients and get them to tell their story. We both were humbled in getting to know fellow patients and the power of the human spirit.

I wish all of you the best in your journey with this horrible disease. Research and read all you can. It helped me through this. I've been following the thread since 2010 and am finally ready to share the good news! Yes, there is hope.

pecostiff's picture
pecostiff
Posts: 3
Joined: Apr 2013

Hi there. My dad is 54 yrs old and diagnosed with snuc. The plan is to start concurrent chemo and radiation. What type of radiation did your husband have? md Anderson offers proton therapy radiation and I'm wanting to take my dad there for a second opinion. Did your husband have chemo and radiation before or after the surgery?

BillyOwen
Posts: 2
Joined: Oct 2011

Hi Cara, there is hope. I have made it threw treatment and working on recovery..

Kars5969
Posts: 12
Joined: Feb 2013

I'm Neely diagnosed T1 - what stage were you?  How are you now?  My doctor performed surgery on 1/31 and wants to do 6 weeks of photon radiation 5 days a week.  Looking for any advice you can give.  Thanks!

BillyOwen
Posts: 2
Joined: Oct 2011

Here it is Oct 28, 2011 and I am cancer free. Wth the love and support from my wife 1sunyday I have made it threw. Positive attitude and help from family and friends have made all the differance in the world. My main advice is EAT if you can , and if you can not. Find a way to injest calories. Chemo WILL break you down. Over two years later, I am still trying to build back up. God Bless all that are afected by this horrible dieses caled SNUC..

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Hondo
Posts: 6238
Joined: Apr 2009

That is great news I am glad for you, here we do the dance when we hear a report like that, so I am doing the dance for you.

PS: Also welcome to CSN.
Hondo

Kars5969
Posts: 12
Joined: Feb 2013

What stage were you?  Are you still cancer free?  I'm newly diagnosed T1.  My doctor wants to do 6 weeks of photon radiation 5 days a week.  Looking for any advice I can get.

dwilliams
Posts: 1
Joined: Mar 2012

My mother 63 was just diagnosed last week with SNUC, the doctor at Emory in Atlanta has not given us much hope, he says that she is stage 4 and we could try radiation but its likeley should would go blind in her left eye and he is not sure if the tumor would respond to radiation because there was bone involved. this has taken over her bones in her sinus cavity. So we dont know if radiation would be of any benefit or what it will to to her physically while she is in her last months of life. So im lost and dont know what to do... Any suggestion?

vlove
Posts: 1
Joined: Jul 2012

Hello, my mother was 67 yo when she was diagnosed with snuc in aug. '10. News was devastating. Little medical information was available due to its rarity. Tumor grew on left nostril and had extended to sinus on left side as well. It was considered stage B. First she went through surgery to remove tumor. Tumor was removed in sections, surgery considered successful, growth did not extend to base of brain. After surgery she was in and out of hospital as doctors tried to fix a cerebral spinal fluid leak. Once that was cured she went through 6 rounds of chemo, 2 each time at every 3 wks. At the same time she had (I don't remember) about 30-35 rounds of radiation. After that everything went well until sept '11 cat scan showed cancer progressed to brain and many tumors were on forehead. She went through a second round of chemo. She didn't do well with chemo, she caught staph, was hospitalized for 5 wks, doctors recommended to stop chemo. She passed away on Feb. 29 .

Kars5969
Posts: 12
Joined: Feb 2013

I am newly diagnosed and looking for advice.  How is you mother now?  Is she still treating?  

myopericytoma
Posts: 4
Joined: Aug 2012

I have this. It is apparently an extraordinarily rare form of cancer - has anyone heard of anyone who has/had it (myopericytoma)?

mitchdunham
Posts: 1
Joined: Aug 2012

hi everyone.
i had this disease. i was diagnosed with it august 1, 2011 after having a tumor removed from my right nostril on june 28 of the same year. i then had radical surgery to take out the cancerous tissue in my nostril. then, i recieved proton radiation therapy 5 days a week and chemo 1 day a week at mass general in boston from november 17th til january 10th. i had a biopsy in may after i thought i felt something similar in my left nostril. the surgeons took out samples from both nostrils and they both came back negative, so as of right now i appear to be in good shape. it's really unfortunate that there is not a ton of info on this disease readily available because it seems like it's becoming more common, but it's certainly far from mainstream.

good luck to everyone

mfjorge
Posts: 2
Joined: Oct 2012

I am not yest a conplete snuc survivor but i am on my way to be so.. I'm a 25 year old male who had just finished med school 2 weeks before diagnosing myself. In medical literature you will find that snuc has a very poor prognosis, however i believe this is due to the lack of information of new cases and treatments being done nowadayas. I was diagnosed in july 2012 and so far i have undergone 2 debulking surgerires, 4 rounds of intraarterial cisplatin chemotherapy, 3 rounds of intravenous cisplatin and 33 rounds of radiation therapy with imrt. I am just finished all this and i am awaiting the next mri to see what finally happened with the tumor. I am a bit uneasy but i hope everything will be ok. To all those other patients suffering from this terrible disease, have hope. Know that snuc can be beat even though it is in an advanced stage (kadish C).! I would appreciate if anyone else could tell me more about the treatment they recieved. And to all those with new diagnosis, the road to recovery is no sugary path, it is hard but definately possible.. Please feel free to contact me with any wuestions whatsoever at jasgmd@gmail.com. Have a great day and hope above all!!!

Kars5969
Posts: 12
Joined: Feb 2013

I am newly diagnosed.  What stage were you?  How are you now?  Are you finished with treatments?

jamesmurdock
Posts: 1
Joined: Feb 2013

My Girlfriend (41) was diagnosed in July/August 2012 and had surgery at the end of August to remove the tumor that had broken through the cribriform plate and was pushing against her brain. 

 The cancer was very progressed by the time her primary care doctor noticed what was going on and transfered her to OHSU in Portland, Or. 

 The Surgery went very well and they say they got all of the tumor. After recovering from surgery for two months or so (she had a craniotomy and endoscopic nasal resection) she started her 33 days of radiation and 4 rounds of Cisplatin and Etoposide.   

 

  It is now a month and a half after her last Chemo treatment and she is doing extremely well.  There were very hard times for all of us but don't let all the talk about how 'rare' or 'unknown' this type of cancer is get you down too much.  It seems like the stage of your snuc determines if you will get surgery,radiation,chemo and in what order. 

 

 I wish the best to anyone that has come to this forum, There are quite a few really good hospitals in the USA that can and will help you.

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