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Sinonasal Undifferentiated Carcinoma - SNUC - Resources
What is SNUC?
Sinonasal undifferentiated carcinoma (SNUC) is a rare cancer of the nasal cavity and/or paranasal sinuses. Initial symptoms range from bloody nose, runny nose, double vision, and bulging eye to chronic infections and nasal obstruction. It has been associated with several types of papilloma in the nasal cavity, which are benign, but can give rise to malignancy. Prior irradiation for other cancers has been associated with the development of SNUC in a number of cases, and has been associated with a genetic mutation known to be associated with cancer development. Most patients have not had prior irradiation, and no other causes have demonstrated to be significant, though some studies have found that woodworkers and nickel factory workers are generally more susceptible to sinonasal malignancy of all types. (Source: WebMD)

Despite the use of immunohistochemical techniques, the differentiation between SNUC and esthesioneuroblastoma can be quite difficult. Given the difference in natural history, treatment, and prognosis between these two malignancies, correct diagnosis is essential. (Source: Danny J. Enepekides)

A SNUC Success Story
My husband is an 8 year survivor of this terrible disease.  He was diagnosed eight years ago, two months after the birth of our second daughter.

He had stage four disease, but it had not spread.  His surgery was at Stanford University and after the surgery they told me that they were able to get clean margins all the way around.  After surgery, he went through six weeks of aggressive radiation.  It was horrible.  They never told me that he would die, and they never told me that he would live.

Even though its been eight years, and he has no evidence of disease, I worry about him making it to the ten year mark.  I'm so grateful for every day that we've had.  The dr. told him that if he has cancer again in that area, it would not be a recurrence, it would be a completely different kind of cancer.  The dr. is pretty sure that he won't get it again. - Janet

Below are more details on this success story...
This past Saturday was the 8th anniversary of my husband's surgery.  Wow!

So his only symptom with the cancer really was having a stuffy nose.  He had gone to the dr. who said that he probably had a sinus infection, so he went on about 3 rounds of antibiotics.  Nothing worked.  Then he had an x-ray, and they told him they saw nothing.  It continued to get worse and he complained that it felt like he couldn't breath out of his nose at all.  He had a couple of nose bleeds at work and his PCP referred him to an ENT.  The ENT ordered a CT scan and that's when he found the mass.  He referred him to Stanford.  They did an MRI as well as endoscopy.  They told us that he did have a large mass but it probably wasn't cancer because he didn't fit the profile for the person who gets this kind of cancer (they said that these cancers mostly occur in older Asain men.  My husband was 42 at the time and he is Caucasian).

They did a biopsy and a week later they called to confirm that it was cancer.  It was stage IV but had not metastasized.  It had eaten through the dura and subarachnoid but not the pia matter.

They did a radical resection and they were able to get clear margins all they way around during the surgery.  They said that the fact that they got all the cancer and were able to get clear margins is probably why he survived.  They were very, very aggressive with the surgery.

He did not get chemo, but he did get radiation therapy.  At the time, it was some kind of new radiation that would attack only the area surrounding where the tumor had been.  I remember that they told me that it covered 16 fields but I don't remember any of the other specifics.  It was six weeks, five days a week.

The radiation was terrible.  They covered his head to mid chest.  He lost his hair and it burned his mouth and throat.  He was unable to talk or eat.  He lost so, so much weight.

During the surgery, they severed his olfactory nerve so he can no longer smell anything and his sense of taste is minimal.

The first year after the surgery, he saw the dr. every month.  Now he only has to go once a year.  The dr. told him that if he gets cancer in his head again, it would be a completely new kind of cancer, not a recurrence of what he already had.

I'm not sure if that's all the info you need.  If you need anything else, please let me know!

Janet

SNUC Stories
We want to help others diagnosed with SNUC. If you have questions, a story that you can share with others, or just need someone to talk with regarding this terrible disease, we encourage you to contact us.

SNUC Treatments
We encourage those with stories of progressive treatments to share them with others. Please contact us to share your story.

 

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