Esthesioneuroblastoma

Chuck2339 said:

My story dealing with ENB
- October 2008 I had, what I thought was, an annoying nose bleed. Didn't think much about it until a month later when I had 3 serious nose bleeds in two days.

- So, off to the local ENT who told me I was suffering from nasal polyps. So I was put on a series of steroids to shrink the polyps and ease the inflamation.

- Now its into December 2008 and the "polyps" hadn't gotten any better, so I was scheduled for a simple surgical procedure to remove the polyps. Surgery was scheduled for early January 2009.

- I awoke from surgery to the concerned faces of my ENT doc and my family. "Your condition wasn't nasal polyps. We suspect a malignant tumor and have sent a biopsy in for analysis."

- Upon hearing the results of the biopsy, my ENT doc immediately turned my case over to the ENT specialists at UVA Hospital (I live in Charlottesville), and Dr. Paul Levine in particular. I understand the he is one of the preeminent physicians in treating our rare cancer, Esthesioneuroblastoma.

- My case was identified as Kadish 3 as the tumor had taken up residence in my frontal sinus but had also invaded the cribiform plate and was attacking the dura, the outer lining of the brain.

- So, for treatment. Chemo followed by radiation. These treatments to finely define the tumor's margins. Then, finally surgery.

- Feb to March 2009; chemo. Sickness, weakness, hair loss. Not a fun time

- April to May 2009; 25 daily radiation treatments (they gave me the weekends off!) For the first 2 weeks everything was fine. The docs told me the effects of the radiation would be cumulative. Oh yeah. The last two weeks I was too weak to drive myself to the hospital.

- They gave me the month of June 2009 off to recover. Surgery was scheduled for July 9th 2009

- Two surgical teams. One, led by Dr. Levine was facial resection surgery to remove the tumor from the sinus and rebuild all the tissue that had to be removed. Evidently, the first rule of cancer surgery is that, in addition to the tumor, anything it touches has to go. The other, led by neurosurgeon Dr. Mark Schaffrey was to do a cranial resection surgery to remove what tumor had approached my brain.

- I was on the operating table for 10 hours.

I had to sacrifice my sense of smell and most of my sense of taste. I can only discern sweet, salty sour or bitter. I have no ability to taste flavors. A good buddy of mine told me that no taste is not so bad. Now you can drink cheap beer! My nose is a bit crooked from where it had to be rebuilt.

But guess what? Now, nearly 3 years later I'm cancer free and back to living a normal life. I go back to see the docs every 6 months or so for them to look around. So far, so good.

ENB, although very rare, if detected early, is readliy treatable and recurrences are not that common. I really feel like I've been given new life and if you're facing ENB and live close enough, do consider University of Virginia hospital.

I'm thriled to be able to claim the title of Cancer Survivor.

Hi Chuck, I'm so glad your treatment went so well and you are cancer free, that is so great. Well done you for coping with all that The nature of your tumour sounds similar to mine, protruding into the brain and attacking the dura. Mine is also causing protopsis of my right eye and has fully invaded my right maxillary sinus aswell as my ethmoid sinuses..joy. I just wondered how the ENT entered the site to do surgery.. I too may have a double surgical team and i wondered if your ENT was able to go in endoscopically or through your cheek ?

I know everyone's tumour is different but I wonder what you guys' experience is, endoscopic surgery or through the cheek? i am really hoping I can get this done endoscopically. I'd be grateful to hear your experience...

jedsnearlythere said:

What was your incision site Chuck?

Hi Chuck, I'm so glad your treatment went so well and you are cancer free, that is so great. Well done you for coping with all that The nature of your tumour sounds similar to mine, protruding into the brain and attacking the dura. Mine is also causing protopsis of my right eye and has fully invaded my right maxillary sinus aswell as my ethmoid sinuses..joy. I just wondered how the ENT entered the site to do surgery.. I too may have a double surgical team and i wondered if your ENT was able to go in endoscopically or through your cheek ?

I know everyone's tumour is different but I wonder what you guys' experience is, endoscopic surgery or through the cheek? i am really hoping I can get this done endoscopically. I'd be grateful to hear your experience...

The part of the tumor that was in my sinus was evicted by surgery through the cheek. Facial resection surgery (whatever that means). In addition to the tumor, my olfactory nerves had to go. Now I can't smell or taste anything. That's a new sensation to get used to!

The part of the tumor that escaped through the cribiform plate on its way to the brain was removed by cranial resection surgery. I have a scar that runs across the top of my head to testify to that. Fortunately, my hair covers the scar. Total time on the surgeon's table - 10 hours. I guess good work does take time.

Asmom905 said:

Looking for info

Hi all.. My 4 year old daughter was just diagnosed with estesioneuroblastoma, she had emergency surgery as the tumor was causing proptosis of her left eye.  She had a partial resection and had a grapefruit size tumor removed from her dura and left eye orbit.  A small piece was left to save her eye and in only 3 short weeks the small tumor had grown very aggressively.  She has received to rounds of chemo so far and is scheduled for 6 weeks of proton radiation to begin soon.  She is stage C from my u derstanding meaning it traveled outside of the sinus cavity but to their knowledge has not metastised elsewhere in her body, she is scheduled for a pet scan on Monday.  Has anyone been through this with a child? The doctor said there are so few cases they aren't even sure it is the same disease in a csold as it is in an adult.  Based on what I read here it looks like there are several cases of recurrence and I'm wondering if that has been true in childhood cases as well...

 

Hi Asmom905, I am so sorry your little one and your family is going through this. I cannot even begin to imagine how difficult it must be for all of you. I can' t offer any insight on this disease in childhood, I was just wondering how things were going? You are in my prayers x

jedsnearlythere said:

Diagnosed two days ago....

hi, I'm not sure if I'm posting correctly so forgive me if I don't!

I was diagnosed on Friday. It's Sunday now. i have Esthesioneuroblastoma Hyams grade 2-3, big daft blobby shaped thing that's pushing my right eye out so I look like Kermit the frog and has pushed through the cribriform plate and currently believes it is the scaffolding rescue committee for my frontal lobes. it has also, rather rudely deposited it's little babies in my lumbar and my hip. I didn't think I was the cancer type, lol!

I'm 43 and have three BEE-YOO-TIFUL children and may I just say that this dull lump will not be taking me out. Ever. I will be dying, probably around 180 with my countless grandchildren, great grandchildren etc running around the garden. 

I am also, praise God under the care of Dr Hanna at MD Anderson. And just in case it's helpful, my treatment has been planned as firstly Induction Chemotherapy with Cisplatin and Etoposide, to try to shrink the tumour down, if it behaves and shrinks down to 50% then I will go another round of Chemo. If by that time the tumour and it's fetid offspring have not disappeared they will operate endoscopically and craniotolly if the tumour still thinks it has to hold my brain up...then chemo-proton radiation.

I feel like me and my Medical team are crack Marines or something, going in for a deep cover mission to blast the living daylights out of a calculated terrorist attempt to take over the mother country. I am MAD as h*ll. 

I thought I had developed an allergy because I'd recently emigrated to the States (I'm British), then when my eye starting bulging attractively I was sent for a scan thinking it was sinusitis.

I am so glad I found you all, and what I'm even more glad about is how positive and strong and happy you all are. Soooo grateful. I too know that this blip is eminently curable, I'll be squealing I'm FREE!!!!! by Christmas.

I'll keep you posted. Stay happy, cancer hates a happy life

 

This is the same time-frame my husband was diagnosed...please post how you are doing...perhaps we can share war stories...he had surgery one week ago today!!!!  Sounds like we could be bunker-buddies...stay strong!  Sounds like you have a lot of people depending on you and hopefully helping you with love and support!

In March 2013 I had surgery to remove what we thought was a nasal polyp.  Biopsy came back as Esthesioneuroblastoma Grade 2.  My ENT in Maine had never heard of this and we were sent to Boston within a week to meet with ENT Eric Holbrook and neurosurgeon William Curry.  AMAZING docs!!  My turmor was contained to the left side, not very agressive, and had not reached the brain.  I had a 9+ hour surgery in May, spent 4 days in ICU and was discharged on the 5th day.  Recovery went really well.  I just finished radiation a little over a week ago.  I had 25 treatments to the lymph nodes.... the cancer had not spread there but treated as a precaution.  I also had 33 Proton treatments to the tumor site.  The radiation itself was not bad and I didn't have too many side effects.  The worst side effect I am dealing with now is the congestion due to swelling from the radiation.   Anyone else have or had this issue?

jnoelle77 said:

sinus congestion

Congratulations on getting through your radiation treaments!  I hope you are feeling OK.  You've been through a difficult and long ordeal.   Take very good care of yourself.

Did you have endoscopic resection or open surgical approach? 

There are similiarities in our cases, though my cancer might have been more extensive.  My first surgery was also to remove what was thought to be a polyp.  My esthesio was Kadish B, Grade 2/3 and was in the left middle turbinate and maxillary sinus.  The cancer surgeons also removed my skull base, dura and both smelling nerves, but thankfully no cancer was found in those areas.  I had endoscopic surgery at UPMC but had my chemo and proton beam radiation at Mass General in Boston.  Like you, I also had my neck radiated as a precaution.   I finished chemo/radiation April 2012.

I also had a lot of nasal congestion after radiation.  It especially bothered my ability to sleep.  My surgeon said my sinuses/nasal passages would take a year to heal from the radiation related damage/inflammation.  I nasal irrigated at least 2, often 3 times a day and it helped the congestion.  Howeer, I also suffered from nasal obstruction due to a scar band in my nasal passage.  I was told scar bands are not uncommon in patients who have had endoscopic surgery.  In my case, it contributed to difficulty breathing, so I eventually had the scar lysed 3 months after finishing radiation.  That made a big difference in my case.    

 

 

 

 

 I had the endoscopic resection..... and yes lack of sleep is the biggest issue right now.  Apparently I have developed a cold on top of all this.  The Radiation Oncologist told me I should start to see some improvement with the congestion within a month.  I will see my ENT in two weeks, we will see what he has to say.....  Did your scar tissue develop right after surgery or after radiation?   Hope you are doing well and thanks for your input!

KP said:

And Here We Go Again

Hello Fellow Members,

My husband who is a 5 year survivor with a recurrence to his lymph nodes, will start his six weeks of radiation tomorrow. This times around I'm sure will be better for him as he is not doing the chemo this round. Apparently as this is a "orphan" cancer, not a lot of data on chemo for recurrences and so they base it on squamous cell carcinoma and chemo only gives you a 10% increase in 5 year survival. Tom did very well with his two recent surgeries and I'm sure he will do just great with the radiation. We are completing all the treatment this time at Hopkins alone but we did seek a second opinon at UVA with Levine. They all say the give the same basic pep talk on actual evidenced based research but we have had varied subjective opinions on chemo.Basic recommendation (based on squamous cell stuff) is that if you have extra capsular spread from lymph node or 3 or more lymph nodes that are positive then chemo is an option.

Tom had two positive lymph nodes but one of them had some "focal" extra capsular spread. We have Levine who said because of hearing loss (from previous chemo round) maybe low dose weekly cysplatin with six weeks of radiation. Then you have UVA radiation oncologist saying if it was him he would do radiation only. Then you have UVA medical oncologist who says you are young and healthy go full blast with full dose cysplatin only.

Then you have Hopkins...radiation oncologist lays out the information and states you have that option for chemo. Hopkins medical oncologist says if she was the patient she would not do chemo....Hubbie decided to save the big gun (chemo) for any future recurrences. So here we are ready.. set...go...

The theme song for Tom and I (if we could have that option) would be Avicii's Wake Me Up when it's all over when I'm wiser and older. Oh if we could all only do that right??

Karla

So sorry to hear Karla about Toms recurrence. I always look for survivors and try to grab hope from their years.  unfortunately, it seems this nasty esthesio has a bad habit of coming back. Mine has been very aggressive and continues to give me new tumors & moves often making me have multiple surgeries,losing body parts, now going into my 3rd series of chemo&radiation treatments in the past 15months.  I wish you both strength to get thru the next round with flying colors and beat this demon. Good luck.

Chuck2339 said:

My story dealing with ENB
- October 2008 I had, what I thought was, an annoying nose bleed. Didn't think much about it until a month later when I had 3 serious nose bleeds in two days.

- So, off to the local ENT who told me I was suffering from nasal polyps. So I was put on a series of steroids to shrink the polyps and ease the inflamation.

- Now its into December 2008 and the "polyps" hadn't gotten any better, so I was scheduled for a simple surgical procedure to remove the polyps. Surgery was scheduled for early January 2009.

- I awoke from surgery to the concerned faces of my ENT doc and my family. "Your condition wasn't nasal polyps. We suspect a malignant tumor and have sent a biopsy in for analysis."

- Upon hearing the results of the biopsy, my ENT doc immediately turned my case over to the ENT specialists at UVA Hospital (I live in Charlottesville), and Dr. Paul Levine in particular. I understand the he is one of the preeminent physicians in treating our rare cancer, Esthesioneuroblastoma.

- My case was identified as Kadish 3 as the tumor had taken up residence in my frontal sinus but had also invaded the cribiform plate and was attacking the dura, the outer lining of the brain.

- So, for treatment. Chemo followed by radiation. These treatments to finely define the tumor's margins. Then, finally surgery.

- Feb to March 2009; chemo. Sickness, weakness, hair loss. Not a fun time

- April to May 2009; 25 daily radiation treatments (they gave me the weekends off!) For the first 2 weeks everything was fine. The docs told me the effects of the radiation would be cumulative. Oh yeah. The last two weeks I was too weak to drive myself to the hospital.

- They gave me the month of June 2009 off to recover. Surgery was scheduled for July 9th 2009

- Two surgical teams. One, led by Dr. Levine was facial resection surgery to remove the tumor from the sinus and rebuild all the tissue that had to be removed. Evidently, the first rule of cancer surgery is that, in addition to the tumor, anything it touches has to go. The other, led by neurosurgeon Dr. Mark Schaffrey was to do a cranial resection surgery to remove what tumor had approached my brain.

- I was on the operating table for 10 hours.

I had to sacrifice my sense of smell and most of my sense of taste. I can only discern sweet, salty sour or bitter. I have no ability to taste flavors. A good buddy of mine told me that no taste is not so bad. Now you can drink cheap beer! My nose is a bit crooked from where it had to be rebuilt.

But guess what? Now, nearly 3 years later I'm cancer free and back to living a normal life. I go back to see the docs every 6 months or so for them to look around. So far, so good.

ENB, although very rare, if detected early, is readliy treatable and recurrences are not that common. I really feel like I've been given new life and if you're facing ENB and live close enough, do consider University of Virginia hospital.

I'm thriled to be able to claim the title of Cancer Survivor.

I had initial surgery in July 2009. So far cancer free since then. No side effects.Typically, I go back and see the docs two or three times a year for them to look around.

jedsnearlythere said:

What was your incision site Chuck?

Hi Chuck, I'm so glad your treatment went so well and you are cancer free, that is so great. Well done you for coping with all that The nature of your tumour sounds similar to mine, protruding into the brain and attacking the dura. Mine is also causing protopsis of my right eye and has fully invaded my right maxillary sinus aswell as my ethmoid sinuses..joy. I just wondered how the ENT entered the site to do surgery.. I too may have a double surgical team and i wondered if your ENT was able to go in endoscopically or through your cheek ?

I know everyone's tumour is different but I wonder what you guys' experience is, endoscopic surgery or through the cheek? i am really hoping I can get this done endoscopically. I'd be grateful to hear your experience...

Sorry if my english is not good. It would be nice to know how you are doing now with the cancer. I was diagnosed this summer when i was 19.
I live in Europe, Finland. My treatment was free cause i am a student and in finland we have the social care system that pays all the medical bills if you dont have a job.
I had 2 surgery done first was 12 hours and other 4 hours. The cancer was not growing into my skull, but to my eye so they had to take away everything that was near of the eye. Thank god i still have my eye and its working! The cancer caused me vomiting and hyponatremia for two years i would like to know if im the only one who had these kind of issues.
Im wishing the best for you all, im praying for us

Rebecca-