Cancer Survivors Network

Hello, I was diagnosed in October 2008 with early stage esthesioneuroblastoma. I underwent Endoscopic surgery in Pittsburgh (UPMC) in Nov and have just completed post op radiation using the CyberKnife on Friday 3/6/09. I now will have follow-up MRI's & chest x-rays every 90 days for the next few years and annually after that. I had never heard of this cancer and finding treatment options can be somewhat hard since there is no real "expert" on this cancer. I feel blessed since this was caught early and the procedures I choose were with little side effects, short recovery times and excellent prognosis' on the horizon.

Thank you for sharing your story. My husband was just diagnosed with an ENB, stage C, grade 1-2, which has gone into the cranial cavity. After our search and careful discernment, we have decided on UPMC as well. We share in the frustration that treatment options and data are uncertain due to its rarity. But hearing your story offers hope. We wish you well. If you have an words of insight for us, we would appreciate hearing from you. If anyone else has used UPMC, we would love to hear your experience.

Pinkbear,
I traveled from Northern VA to PA and had my EEA surgery at UPMC Mercy, feel free to contact me if you need to chat. I had surgery in Nov 08, I have nothing but good things to say about the doctors there, who are you seeing?
Cheers and blessings,
Patti

Patti,
We just met several drs. today. Surgery is scheduled for a couple weeks from now. I would love to chat to see how things went for you. You can email me at llknox@sbcglobal.net if you would like.
Thanks for the posting.

Hi

Mi name is Eduardo Glenn, form Costa Rica, with a Esthesioneuroblastma (orbit invasion, cribose plate erosion, complete blocking of the nose, fast growing tumor). I need an option for a endoscopic surgery or another approach, we don´t have the experiencie here in Costa Rica with this type of tumors. Do you know any other Center different as Pittsburgh? They have a cost basis of $180.000 for the procedure (Dr. Snyderman group). I know they are the best team for that but I need to pay myself for the procedure and this amount is impossible for us in Central America. I am trying to find another option more cheaper to save my life.

Any help will be nice.

Eduardo Glenn

Hi Eduardo, I don't know if this is any cheaper or not but MD Anderson in Houston is another highly rated cancer hospital in the US. I suggest you give them a call and explain your situation, I hope they can help. Wishing you the best.

I don't know what the cost would be, but I had my esthesionueroblastoma removed in April of 2007 at Rush University Medical Center in Chicago by Dr. Guy Petruzelli and Dr. Rich Byrne. Excellent hospital, excellent physicians

Eduardo, you might try googling endonasal approach to find other places who do this surgery. Although we had surgery with the Pittsburgh team of doctors, they travel the world teaching their technique to other doctors. I saw on-line there is a dr. at the university of north carolina who trained with the drs. in Pittsburgh who is now doing the surgery as well. It might also be done in Atlanta at Emory, and a place in California too. Hopefully it will come up when you google! Wishing you well on your journey!

We found experts for my husband at Memorial Sloan Kettering Cancer Center in New York City.

Yours was the first info I saw when I looked up this diagnosis. I have so many questions! I was just diagnosed 12/15, and scheduled for an MRI and Pet scan on 12/22 and surgery is scheduled for 12/29. I am still trying to digest everything and am having a really hard time coming to terms with what they say they are going to do to me. They listed an anterior craniofacial resection, medial maxillectomy, pericranial flap, and lumbar drain. They gave me a CD-Rom with some info but it is still hard to wrap my head around all this. Did you have any/all of these procedures?

able to share some good news....had surgery on 11/22/02 at age 52.....cranaiofacial resection followed by radiation.....while I have to irrigate twice daily...all else is good.....surgery was done at Memorial Sloan Kettering

I was diagnosed in Dec of 1998. Had the surgery followed by 42 treatments of radiation, and was ok for about five years. Then had a lymph node recurrence in the neck. That was removed followed by 10 doses of radiation. So far so good. I've developed a little meningioma from the first radiation, but it seems benign.
Originally, my ENT surgeon told me that the tumor broke apart when it was removed. It's possible that caused the recurrence.

Don't forget. They got the cancer. You're good to go, so go! And MD Anderson is one of the best. Getting the right docs--very important.

hello,
i was researching on this specific cancer and found this....i was reading through so many of the peoples posts in here. My dad was diagnosed with esthesionueroblastoma in 1997...i was just about 13 at the time.we have been through it all id say..his first two operations were done at UCSF...the third i think was at LA as well as the fourth,chemo was at UCSF,radiation was in san francisco too...proton was in loma linda...then he underwent another operation and more chemo...his last doctor was in LA again and we did chemo again there last year...

Never used Zicam, I too am a Esthesio survivor. I believe mine to be related to environmental, mainly wood dust.

My husband had surgery at UPMC for ENB in April, 2009 and is undergoing proton radiation therapy now. Doctors asked him if he did a lot of wood working or used wood glues, which he did not. He also never used any nasal sprays prior to his diagnosis.

Wow. Just ran across this board today. I was first diagnosed in Nov 2005 after undergoing a "routine" sinus scraping to remove a chronic infection. After hitting a growth in the sinus cavity the ENT took the steps he deemed necessary to control the profuse bleeding. Testing of the tumor revealed Estesioneuroblastoma. For such an extremely rare cancer, I am surprised to find all these posts here today. Once identified (was misdiagnosed the first time) I had 6 weeks of radiation. Then, scans every 6 weeks, which dwindled to every 3 months, then every 6 months.

In November 2008 I began having symptoms of a tingling and/or numb left arm. Long story short, tests revealed enlarged nodes in the left neck. When antibiotics failed to address the issue I went in for a neck dissection with Dr. Guy Pettruzelli at Rush University in Chicago. During the surgery he found that the tumor (identified as the same olfactory neuroblastoma) had broken through the nodes and had begun invading surrounding muscle tissue. After a minimal healing period I went in for another 6 weeks of radiation targeted around the neck and chest, which completed in May 2009.

Now preparing for the regular scans, which begin again next month.

When I was first diagnosed in May 2008, finding someone with ENB was difficult. Since I completed my treatments I have met atleast 5 people. Most with the same issue, mis-diagnosed the first go around.

I worry abour re-occurrence, but try not to think about it, but sometimes, its just hard. The people that I have met that are past the 2 year mark, have all had some sort of re-occurrence.... so the Olfactory NBlastoma had gone into your nodes and spread from there? Its just weird, and I know as a cancer patient we tend to link everything to cancer, but my left arm goes numb when I sleep, often...

okay sirena... Get off the ledge.... breath LOL I guess when I see my doc this Thursday, I will mention it. Maybe its from being on this computer too much :)

Please keep me posted on how you are doing. You can email me here or at sirenaf40@aol.com.

Sirena

How beautiful that sounds..... you should have started singing, you may have lead a choir :)

Hi Alison,
I too thought I would get a clean bill of health after my routine "polyp removal" and NEVER expected my diagnosis of Esthesioneuroblastoma on 10/06/08. I do believe that the initial surgery removed all of the "tumor" however I still underwent endoscopic resection (@UPMC Pittsburgh) of the olfactory nerve & blub on the left side (there were additional cancer cells found during surgery) in Nov. 08. I wonder now if radiation would have "gotten" them. I had CyberKnife radiation in March 09 and have had clean scans since that time. Still on the every 3 month cycle but hopefully will continue to be cancer free.

With the CyberKnife I had very little side effects, the treatment was completed in 5 days and I had a few dime sized bald patches of hair where the beams were concentrated and a little redness of my cheeks. Other than that just the usual tiredness. My radiation was concentrated on the surgical/tumor bed and did not effect the saliva glands at all which I understand can be hard.

Currently I cannot smell and do not know if that will ever come back, although technically it could, since I still have the right bulb and nerve, my local ENT is not ruling it out for at least another year and I remain prayerful.

I wish you well on your journey, my advise for you would to ask many questions, read as much as you can handle and take notes to the doctors, but in the end choose the best treatment for you! You will be in my thoughts and prayers.

Blesings,
Patti

Hi Allison.

I was diagnosed with Esthesionueroblastom May 2008. I too went in for a routine polyup removal, twice..... They removed the first one, 6 months later another had grown in the exact same place, same size. They removed that one, and the lab results showed the cancer. I had a total of 3 endoscopic surgeries and then was referred to MD Anderson for 6 weeks of radiation treatment. Your questions are normal, and you should never be afraid to ask. I had to have 2 teeth pulled before treatments as they had old silver fillings and they felt the decayed teeth would not survive after radiation.

Side effects for me started about 2 weeks into radiation treatments. My eyes became, and still are, very sensitive to the sun light, I have to always wear sunglasses outside and I have noticed some vision change. I had severe dry nose and dry mouth, in which I had to use a nasal rinse and mouth rinse to clean. You could and most likely will lose your saliva during radiation. So drinking A LOT of water is very important in keeping your mouth healthy. I lost my sense of taste and smell around the same time, week 2. I lost a small portion of my right eyebrow (where the radiation went in) and lost about 4 silver dollar size spots of hair on the side over my right ear and 2 on the back of my head. Where the radiation goes in, the hair will not grow back. where the radiation goes out, it kills the hair and it just slowly breaks off, but it will grow back. I actually cut mine short during treatments so I wouldnt have to mess with it. I was really tired the last couple weeks, and wanted one less thing to worry about.

I was surprised and did not expect the radiation mask. You can go to YOU TUBE and key in Radiation Mask, and you will see some videos people created explaining what it is and how it is made. I didnt know about it, and was not at all prepared for it. Its nothing bad, just not what I expected. Around week 4 of treatments, I couldnt eat anthing that was dry and mostly drank Ensure, smoothies and shakes, soups, oatmeal and liquid type meals. Food had no taste nor smell and chewing was impossible to do without saliva. I lost about 40 pounds during my treatments and months recovering from treatments.

I am now 1 year past my last radiation treatment. Cancer free :) I will tell you, the 3 - 4 months after radiation, was harder than the radiation. I can only smell every now and again. Its like I get a hint of smell, but nothing major. My tastebuds have returned about 80%. I cant eat anything acidy (tomatos, oranges, etc.) nor spicy. My hair has grown back, the same color and texture as before (well a lot more grey)

2 weeks ago I had laser surgery of my sinus's to remove the scar tissue caused from the surgeries and to repair the damage from radiation, and for the first time in over 2 years... I CAN BREATHE THROUGH MY NOSE... its the little things we take for granted :)

I didnt have anyone who knew anything about what I was going through when I was diagnosed, and am always available to help you whenever you have questions, are scared, or just need someone to talk to. Soo please feel free to email me at sirenaf40@aol.com so we can exchange numbers.

I also have some pictures of my mask and the treatment I went through I can share with you. Good Luck, stay positive and think HAPPY thoughts... cancer is just a bumb in the road, it does not define who we are and what we are meant to be!!!!

Cancer Free since 2008
Sirena

Radiation,post-esthesioneuroblastomaectomy 8/06 for my husband was a 6 wk course......starting several weeks after surgery. My assessment is that the radiation resulted in a reduction of tearing in his r eye-temporarily resulting in corneal ulcers. He was also very tired. One thing that helped us during the presurgical wait and the period of radiation was the use of medition tapes put out by HEALTH JOURNEYS. They offered specific titles to help us maximize what we could do to get the most out of each step of the journey and to get us in the right frame of mind. Nan

I was lucky to have had not many side effects. Mainly fatigue, I did have very little hair loss, My doctor told me about my eyesight that in a year or two I could develope catoracs but could have that fixed. The only disappointment was I did loose my sence of smell and most of my sence of taste and 5 years later it has'nt returned, but I still like to eat.

My sense of smell is on and off again. Sometimes I get a faint hint of something, and then---- its gone. I tell my friends its like trying to start an old car, you think for a second its gonna turn over... you get excited .... and then, its dead. My taste is still muted, but I do have some tasting ability. Its been 13 months since my last treatment and I have just accepted this is who I am.. The girl who can see the roses but cant smell them. The girl who will still lick the frosting bowl, but can only tell you its sweet and not what flavor it is. I will say, I do miss my 3:00 diet coke, cause I still cant tolerate carbonation ... I guess it beats the alternative. So I complain with humor and am grateful for what I do have.

Had my surgery in NY and radiation under Dr. Flickenger in 1998 and 1999. A very good guy, and held in high esteem by other docs. The effects of radiation depends a lot on the angles the treatments take. The techs and doctor should be able to tell you what might be effected. You will have fatigue. And the salivary glands can be compromised eventually, but there are sprays and gum for that. Just make sure you rest after treatments. Give yourself a break. Your job is to get well. Nothing else.

You'll do well. The treatments are so much better now.

Allison, The exact same thing happen to me. I had a sinus infection that didn't clear up with regular meds and I went to the ENT dortor who gave me stronger meds then when that cleared he said I had a polyp. When he went in to remove it, he found the cancer. At the time (2003) We swarched everywhere for information. I hope I have been of some help. I have been cancer free since Feb. 2003. No reaaurance or problems. I went throught the 6 weeks of treatment after surgery and my eyesight never changed and i now live my new normal life. The tiredness will get better. I did loos eyelashes, eyebrows, and mystash, never loss the beard. That will all grow back. I cannot smell anymore and I am from the New Orleans area and the spices of the food I will never be able to enjoy again. If I eat a oyster poyboy I'll remember what it tast like and it helps. Best of luck with your recovery. As far as teeth problems and dry mouth issues there are a few. I cannot get teeth pulled anymore