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Esthesioneuroblastoma

famfrench's picture
famfrench
Posts: 7
Joined: Dec 2009

Just diagnosed two days ago and in a state of shock. Looking for any info to help make informed treatment decisions.

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

I am 14 months post my last radiation treatment. Im doing great, healthy and happy. You can read my profile for my history and feel free to email me at sirenaf40@aol.com to just have someone to talk to that has all ready walked in your shoes.

Sirena

PBailey
Posts: 16
Joined: Jan 2009

I too know the shock of being diagnosed, I was diagnosed in Oct. 2008, and underwent Endoscopic Surgery(11/08) & CyberKnife radiation(3/09). Please feel free to contact me as well if you need answers.

famfrench's picture
famfrench
Posts: 7
Joined: Dec 2009

Am I to assume "endoscopic" means you didn't have to have your face altered by large icisions? They are pretty much telling me I will not ever look the same after this. I am by no means a vain person, but I have teen-aged Daughters, 3 young Grandaughters, and another due in April, and I don't want to have my face "resected" if It is not 100% necessary.

PBailey
Posts: 16
Joined: Jan 2009

I was in the same place as you, although I have 2 small kids (8 & 5) and did not think that (full resection) was the way to go for me. The surgeons removed the olfactory nerve through my nose and once the black eye healed you would never know I had any surgery. Amazing stuff I might say. I had my surgery at UPMC in Pittsburg although the neurosurgeon has since moved to CA, however there are other great neurosurgeons there still. All is well with me now 13 months later.

famfrench's picture
famfrench
Posts: 7
Joined: Dec 2009

How do I go about finding if there is someone in the Indianapolis area who can do this for me? I am not happy with the way my ENT gives me info in just bits and pieces and don't feel that I am being given hope for other options. I have searched the Internet everywhere I can think and don't know how to find where I should turn. So far I have read survivor stories from PA and TX and have requested an Appt and/or info from Mayo in MN but I'd like to find someone locally as we are not financially able to travel. I already fear my job is in jeopardy as I have only been employed there since April and now I'm being told I may miss up to 6 months work! How do people survive not just the cancer but the financial devastation? There is so much to deal with...I don't know where to start! Any ideas of finding alternatives in the Indianapolis area would be greatly appreciated!

Dazey
Posts: 86
Joined: Sep 2009

Check into the Family and Medical Leave Act (see below)It may be something you are eligible to get. I am sorry to hear of your struggles - somehow doesn't seem fair to have to deal with so many issues at the same time. My thoughts are with you. Dazey

Overview

Covered employers must grant an eligible employee up to a total of 12 workweeks of unpaid leave during any 12-month period for one or more of the following reasons:

* for the birth and care of the newborn child of the employee;
* for placement with the employee of a son or daughter for adoption or foster care;
* to care for an immediate family member (spouse, child, or parent) with a serious health condition; or
* to take medical leave when the employee is unable to work because of a serious health condition.

PBailey
Posts: 16
Joined: Jan 2009

Just to let you know we traveled from Northern Virginia to Pittsburgh. I would recommend trying to get as many opinions as possible especially if you are not getting the information and attention from your local ENT. Although I had my surgery in PA, I have a local oncologist (I also had my radiation done locally) and see my local ENT. I went back to PA for a follow up with the ENT but have not been there in almost a year. The ENT @ UPMC is amazing and I would recommend him in a minute.

As far as the expense, we stayed in PA for 1 week, of which I was in the hospital for 4 days. We had no idea as to the expenses going there but I do know that most of the hotels around the hospitals (there are a bunch associated with UPMC) offer patient rates. Also the hospital has a family suite thing which is minimal daily (less than $30) for a room & bed (no frills)

Lastly, if you travel from out of town, the departments try really hard to get all of your appointments staged so that you can get everything done fairly quickly. At least that was me experience. Once I decided, I had 1 pre-op day which was all of the testing and a day later off to surgery. They are accustomed to people coming in from all over so they really have it down!

Let me know if I can answer any more of your questions. I know how overwhelmed you must be feeling at this point. I hope that you find the answers you are looking for :)

Blessings,
Patti

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

All I can say is that Indy is known to have one of the best cancer treatment centers in the country. Not sure of the name of it but do know that Lance Armstrong was treated there. I am sorry I can not happen more and so very sorry that you had to come to this website, but coming here will be one of the best things you can do. Best of luck to you and your husband and many prayers.

Kurt

famfrench's picture
famfrench
Posts: 7
Joined: Dec 2009

Lived here my whole life and am in such a fog, I didn't even think to check there! I did check with ACS and was told they do not have a registry of facilities or doctors familiar with this particular form of cancer. I would think that since it so rare there would be even more of a reason for just such a registry. I only wish I had the expertise to be able to create such a website for survivors of this type of cancer since I hope to become a survivor myself!
I have my MRI and Pet scan tomorrow , then another visit to my ENT. I plan on letting him know I am seeking a 2nd opinion. I requested an appt. with the MAYO clinic and heard from them today. They are going to request copies of all my tests and take a look, and then we will set up an appt. I appreciate all the info and good wishes you all are sending my way. I am a true believer in the power of prayer.

PBailey
Posts: 16
Joined: Jan 2009

On your MRI & PET, you will be in my thoughts and prayers as you look for the answers you need. Again if I can be of any help, just let me know!
Kindly,
Patti

WILCIN97
Posts: 1
Joined: Jan 2010

we haven't been on here in a long time. my husband was dx with ESN in Oct 09, we looked at all options and chose to go to Dr Amin Kassam who pioneered the endo nasal approach. He is amazing. After 11 hours of surgery he had clear margins all around.
We also have limited funds and job security but it has just somehow worked out. Now we are looking at proton radiation for follow up and that will again require a lot of travel and loss of work. But the ESN is an aggressive tumor and so you just gotta go for it.

we live in Florida. let me hear from you . We are happy to talk with anyone!
ccpound@gmail.com

ninnyscott's picture
ninnyscott
Posts: 12
Joined: Mar 2010

My diagnosis was 3-9-10. I am scheduled for surgery on the 31st at Lee Moffit Cancer center in Tampa Florida. I don't know what approach they are doing yet. My MRI and Pet scan are scheduled the day before surgery and my surgeon said he has to have the MRI results before he will know. I am quite nervous about the whole thing. Hoping to get back to work after the surgery and be able to work a few weeks into the radiation therapy. Otherwise I will be out of my FMLA and have to pay COBRA insurance rates. I think the financial part of this has me as stressed out as much as the physical part. It is amazing how your life changes in a few moments. I feel much better talking to others who have gone through or are going through this.

blessings and prayers to all
Margie
ninnyscott2@yahoo.com

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Margie, your stress and concerns are understandable, we've all had--and still have--them. I wish I knew more about your's and Famfrench's c, so I could be more precise, but it sounds as though things are moving at an efficient pace so good for you, less time to worry and quicker to get to the treatment you need. The suddenness can be overwhelming. The first week or so after my diagnosis I would get so scared my chest would get cold. But the shock will subside and allow you to think in a straighter line as the days pass.

Something I was not good at that others will remind you of, request and hold copies of whatever you can. MRI, Pet scans, diagnosis and dates, and anything else that will help you order and manage your treatment history will take away some of the stress. For now you need to breath, and focus the tasks that are coming your way. Financial uncertainties are real enough, but they need to be prioritized right beneath getting the care you need. A good friend of mine's husband was in Stanford's care for several months. She said they owe close to a million which is just about the amount they don't have for now. Stanford will just have to understand, she said. You say your surgery is already scheduled, good.

You've come to the right place to ask your questions. The people on this board are top- notch givers, and care about nothing beyond passing their experiences and support on to you as you begin the process of treatment and healing. I'm sorry you will be going through this Margie, and grateful you found your way here. Just sent a prayer your way.

Hal

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

All I can say is that Indy is known to have one of the best cancer treatment centers in the country. Not sure of the name of it but do know that Lance Armstrong was treated there. I am sorry I can not happen more and so very sorry that you had to come to this website, but coming here will be one of the best things you can do. Best of luck to you and your husband and many prayers.

Kurt

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

The University of Chicago claims to be the top head and Neck center in the Tri-State area. You could make the drive in a day maybe stay over night and be back the next day. Or just all out in one day. Scheduling would be crucial and you should start getting copies of any medical documents, films or scans. The head ENT Doctor there is Kerstin Stenson and you could reach that office at 773-702-4851. Alternatively one of the best resources for second opininions is your own Doctor. Ask for a recomendation. Keep asking questions.

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