Sinonasal Undifferentiated Carcinoma – ever heard of it?

I wish I’d never heard of it, either!  I can honestly say 4 months ago I would never have imagined this to be one of the articles I would be writing about. 

It’s one of those “rare” cancers, but now that my mom is fighting it, “rare” has hit a little closer to home. 

Sinonasal Undifferentiated Carcinoma (SNUC) is a rare cancer of the nasal cavity and/or paranasal sinuses.  It’s very aggressive and often has a poor prognosis if not detected early.   From what I’ve researched (aka: googled) that seems to be a result of the following:

  1. It’s rare, so no one has a lot of experience with it therefore there’s not years and years of experience in successfully treating it.
  2. It has the same symptoms of a sinus infection (nose bleeds, nasal obstruction, runny nose, double or blurred vision) so it’s very commonly diagnosed incorrectly.  This is unfortunate because it is a very malignant, aggressive cancer so by the time it’s truly diagnosed it’s often metastasized. 

 Fortunately, I think we caught my mom’s early enough.  She’s not a fan of not being able to breathe, as it turns out.  So after her nose was “stuffed up” for a month or two, even though it was allergy season, she headed straight to the allergist.  Who, by the way, misdiagnosed her and gave her a few rounds of antibiotics, I believe… maybe steroids too.  I didn’t pay too much attention through all that because we just thought she had a sinus infection from hell.  When that didn’t work, they referred her to an Ear, Nose and Throat guy (ENT), where a MRI was performed, a mass was detected and she was referred to the team of specialists she’s working with now. 

Treatment options include chemotherapy, radiation treatments and surgery.  I think the combination of radiation treatment and surgery is supposed to provide a greater chance of remission than radiation alone. Like I said, I’m not a doctor.   Just a googler.  So take this for what it’s worth! 

I’m sharing this because while it may be “rare”, it might actually happen to you or someone you know.  And odds are, you or they will just chalk it up to an annoying sinus infection and keep right on moving.  I would have.  But I’m relieved my mom didn’t.

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22 Responses to Sinonasal Undifferentiated Carcinoma – ever heard of it?

  1. Jason says:

    Great Post! Very informative and to the point! Thanks!

  2. bob says:

    No joke. I was diagnosed with SNUC 3 years ago. I too had a sinus infection symptoms for several months before they caught it. Had radiation and chemo. Still alive to talk about it.

    I used Raid too much when I was a kid to kill ants in CA. It must have been the cause!

  3. Mrs. X says:

    Jeana, We got our diagnosis 6/10/11. For a very rare cancer there seems to be alot of new cases. My husbands surgery is 7/1/11.

    • Jeana says:

      I am so sorry to hear that!! That’s exactly how I felt when they told me how “rare” it was! I’m relatively new to the process, but you are more than welcome to ask questions!! I’ve done quite a bit of research on it now!! You and your husband will be in my thoughts and prayers!

      • Jeana says:

        Hi! I just wanted to check in with you to see how your husband’s surgery went?

        My mother is going in this Friday. She underwent two rounds of chemo prior to the surgery, so that’s what we’ve been doing the last couple of months!

        Hope you guys are doing well!

  4. Barb says:

    Jeana,

    I’d love to hear how your mom is doing and if you’ve done any other research on SNUC. My daughter had SNUC and I’ve created a foundation to raise awareness as well as funding for research. Obviously, awareness is huge, so the more voices we have the better!

    Barb

    • Jeana says:

      Hi Barb! My mom is still going through radiation/chemo. 2 weeks left! It’s been a pretty tough road, though we feel pretty blessed to have caught it early. She did chemo first, then surgery, and now we’re finishing with radiation and chemo. Needless to say, she’s not very happy!! But we’re happy we still have her!! How was your daughter’s experience with SNUC? I haven’t done much more research… I tried to do a lot in the beginning but it’s a very frustrating topic to research, as I’m sure you know!! Thanks for reaching out!!

      • Barb says:

        unfortunately, my daughter did not make it. Hers was a short battle, and she died after a 7 month fight…3 days shy of her 23rd birthday. One of my observations is that it seems the younger victims have a rougher go. Again, not a lot of studies, but my guess is that it’s a very aggressive tumor type and with young adults, their metabolisms probably are somewhat of a detriment. CabriMed has put together a team of 5 specialists that will hopefully start collaborating this fall. I’m anxious to learn more so we can discover best treatment protocol and save more lives. Good luck to your mother and I’ll pray for her. Attitude is key with anything, so give it the good fight!

  5. Jeana says:

    Barb – I am so sorry to hear that. I just can’t even imagine what your family must have gone through. I just can’t imagine there would be anything more painful than losing a child! I have two toddlers and I just thank God every day for them, as I know quite a few mothers that have lost theirs. Every day is a blessing.

    I’m so impressed that you have continued on with the research to help others with the battle. I was talking to my husband about you last night… I fear if I lost someone like that I would just try to “forget” – try to put the pain away on a shelf so to speak… You inspire me!

    Had your daughter’s cancer metastasized prior to diagnosis? From what I’ve researched, and from the limited amount of information my parents are willing to share, it sounds like if you catch it before it metastasizes the prognosis is much better. I just don’t know how much better. Or what the chances for recurrence are. So much we don’t know!! It’s so frustrating!!

    Thanks again for reaching out, Barb. As you can imagine, I don’t come into contact with many people that are familiar with SNUC!!

    • Barb says:

      Ashley’s had not metastasized before diagnosis, but it did during treatment. We did a full 3 rounds of chemo and 35 radiation treatments before surgery, and I think surgery first may have been a better outlook…but who knows and I can’t think about that. I just hope that we can use Ashley’s Foundation to find out more to improve survival rates and raise awareness.

      After Ashley completed radiation, she discovered her lymph nodes in her neck started swelling. We had hoped that they were just working overtime fighting, but a biopsy told us otherwise. We went to MD Anderson for a miracle and we were really impressed with the care we received there. However, the Friday before our Monday surgery a PETscan lit up and we did an MRI to confirm more cancer on her thoracic spine. We cancelled surgery and headed home.

      Hang in there with your mother. This can be beat and I pray that you’re one of those survivor stories. I’d be really interested to learn the complete treatment so I can pass that along to the research organization.

  6. Expecting a Miracle says:

    My niece was diagnosed in August, I have not been able to find a lot of information. She has had three rounds of Chemo and recently started her radiation. I am trying to find recent studies on this disease but can’t seem to find anything. Any information would be greatly appreciated. We have so many questions and with so little information available it is very frustrating. Jeana hope all is well with your mom. Barb I am so sorry for your loss.

    • Jeana says:

      I am so sorry to hear that!! This cancer is an aggressive cancer and it’s so rare and the information you’ll find is so dismal that it makes it hard to keep searching!! But don’t give up hope… there are positive stories out there of people that have beaten this thing… I will keep your family in my thoughts and prayers!

      My mom did the chemo first, then surgery, then radiation. The radiation has been the worst for her, by far. Please look into a feeding tube for your niece. I don’t know if my mom was offered one early on or not, but halfway through radiation eating and drinking became so painful for her. We are three weeks out and she’s still barely eating and drinking. My dad is having a really hard time… it’s so hard on both of them!! The treatments have to be so aggressive due to the nature of the cancer. Also, there are pain patches that can be placed on the skin and anti-nausea medicine that can be given as a suppository. Trust me… if she doesn’t do a feeding tube this might be vital information and for some reason, sometimes the drs just don’t think of ways to make this whole process easier!

      Feel free to ask me any questions, though Barb has been looking into this longer than I have. I have entered a different phase with my mom… technically she is “cancer free”, but I really don’t know what the doctors are telling them about the odds of recurrence. Part of my frustration is my parents are “protecting” us and I don’t think we get 100% accurate information from them. I did find a message board on the Cancer Compass website… I wish I could provide you a link but after I found it it’s been hard to go back and find it again! There are survivors that post there, which provides hope and some will outline their treatments, etc.

  7. Barb says:

    first, Jeana, happy they are saying your mom is cancer free! This gives us time to find out more so we can help prevent recurrance. (I’m keeping positive).

    Expecting a miracle…keep that thought. Attitude is a big part of treatment. Where is she being treated? Because it’s so rare, it’s good to check with larger institutions that have dealt with this before. Surgery might be a good option, but let the professionals tell you. We are so early in our research phase, but we’re going to keep raising awareness and money and continue with research. Jeana’s right…so little is known, but hopefully we’ll change that!

  8. Expecting a Miracle says:

    Jeana, thanks for the Cancer Compass message board. I found some interesting posts and some long time survivors.

    Barb, she is being treated through UT. Her doctors have been really good, they seem to be on top of the situation. She will be finishing up her Radiation next week.

  9. Jeana says:

    Expecting… I’m so glad you found it helpful! The posts from the long term survivors really give me hope… and every little bit helps!

    My mom goes to UT Southwestern. Her doctors are wonderful. I think they even consult with MD Anderson (though I’m not sure how I learned that?).

    I hope her radiation recovery goes well!! I do hope you stay in touch and keep us updated!!

    Barb – we are ecstatic about her being cancer free… I think we all just had unrealistic expectations about how long recovery would take and how helpless we would all be to help her. Radiation for head cancer has so many side effects! Sore throat (she said it felt like a knife had scraped it), dry mouth, fluid in the ears, sinus infection (from the surgery I think), nausea (she throws up her antibiotics she’s taking for the infection…) the list goes on and on!! She’s more or less said she loves us all but if the cancer comes back she’ll see us in Heaven!! She truly is an optimist… as negative as that statement sounds… but she says she’s been blessed, she’s lived a full life and she has no intention of living out her days doing this and living in fear of it coming back. So I sure hope she’s one of the lucky ones that kicks this!

  10. Expecting a Miracle says:

    Well we have our Miracle….. Dr says no cancer. I just want to say thank God for answered prayer.

    • Jeana says:

      Expecting… that is WONDERFUL news!! :) Did they do surgery as well or just chemo and radiation? I get a lot of questions from people so I always try to compile as much information as possible so I can help others! Were they able to catch it before it metastasized? It seems like that is a part of a lot of the success stories.

      Thank you so much for the update!! Hearing about other SNUC survivors gives everyone more, or continued, hope!

  11. Expecting a Miracle says:

    Just chemo and radiation, they did surgery on the nasal area to reconstruct. The tumor had gone through the skull as well. The chemo and radiation got it all. They took tissue samples during her nasal surgery and we just got the results back and he said no cancer left. Her Doctors have been really great, we are so very thankful for them. There are still many follow up visits to determine if any further surgeries are going to be done.

  12. Expecting a Miracle says:

    Jeana, how are things with your mom?

  13. Jeana says:

    So far, so good! She’s still sleeping a lot and she’s having a hard time with hearing. She’s had an infection in the nasal cavity and in the ears… so it’s hard to know if the hearing problem is from the ear infection or the radiation. I think my dad is working on getting a hearing aid for her. It’s a very slow recovery but we feel very blessed every day she’s alive to complain! :) I think there’s a PET scan in the near future so we’ll keep our fingers crossed for that! Really wish I’d never heard of SNUC.

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