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olfactory neuroblastoma

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

Well, I had my surgery on the 31st, and am going for my followup tomorrow. They will remove the packing left in my nose and maybe have my pathology reports. Hoping to know whether I will be having the radiation treatments. I know more than likely I will but hoping I don't. Does anyone have an opinion on different clinics. I am going to Lee Moffit cancer center in tampa but I live in Plant city. we have a radiation clinic here but I am wondering if it is possible to not get as good of treatment there as opposed to staying at the cancer center for my treatments.

I felt dizzy for a few days and nausea after my surgery, has anyone else had that? I feel like I am being a wimp. My dr said I should be able to go back to work after 10 days. Just hope I feel like it.

For some reason it just makes me feel better to be able to talk about things. Thanks to everyone for writing, it helps me by reading what others go through and how they deal with it.

take care,

margie

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Margie,

I understand if you can have a choice with radiation, you get IMRT as opposed to the standard. This may mean you have to go twice a day but the intensity of the doses are 'modulated' to be more effective to hit the cancer while causing less 'collateral damage' to surrounding tissue. You will find good info on the net about IMRT or ask your Doctors.

Hope it all goes well and you don;t need it.

Regds
Scambuster

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

Thank you, looked up IMRT and found there is a certification which my local rad clinic does not seem to have. Will ask about that today at the doctor's office

Thanks

Margie

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

Hi Margie,
Congratulations on getting your surgery done so quickly. You're anything but a wimp, and don't be afraid to tell your doctor how you feel about going back to your job. You are the authority on that issue, and right now you are doing a great job of recovering. Dizziness and nausea would seem to me to be par for the course for surgery on the 31st, depending on severity. Talk to your surgeon or specialist about that when you get your pathology, and hopefully they will both be lessening in frequency and severity.

My radiation for SCC, base of tongue, two lymph nodes involved was IMRT, but only once per day. I have no idea of what you're prescribed regimen might be if it is needed, but I know most people here getting "regular" radiation are receiving IMRT. Joking and laughing are always good medicine along with good nutrition. My best wishes are with you and your family.

Hal

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

Thanks for the encouragement. guess I still need to be taking it one day at a time.

margie

chark
Posts: 14
Joined: Jun 2010

I too was told I have Olfactory Neuroblastoma after my sinus surgery. I am trying so hard to wrap my head around it. I lost my Mom in 2008 to cancer. May I ask you a few questions. Do you have children and how did they handle it. I am trying to figure out what the Hyman grading scale means. My path report labels it a II and IV. You had your surgery really soon. I don't have my first appointment at the hospital in Boston until July 15 for my initial appointment, that is like 3 weeks since my diagnosis. Well I hope you are recoving and I will be praying for you. God is good.

Christy

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Christy, welcome to CSN. I cannot answer your questions but wanted to welcome you. YOu have come to the right place for answers. There are many people here who will answer your questions and provide you with support. Since we've all faught the battle or are currently fighting the battle, we know what you're feeling. We know what it is like to be scared, to wonder what the trmnts will be like, will we survive, etc. There are many, many survivors here, some fighting C more than once. Anyway, I just wanted to say welcome and you will be all our prayers.
God Bless,
debbie

chark
Posts: 14
Joined: Jun 2010

I am finally able to sleep so that has helped. Family and friends are so encouraging and God is so good.
Happy 4th of July to all of you.

Christy

debbiejeanne's picture
debbiejeanne
Posts: 2233
Joined: Jan 2010

Christy, I'm glad it worked. You are so right, GOD IS GOOD!!
GOD bless you,
debbie

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

I was diagnosed with the same cancer, Esthesionueroblastoma (also known as Orlfactory Nueroblastoma), you can read my information on my profile. Make a list of questions when you go see your doctor, dont be afraid to ask, also try and bring someone with you to all your appointments. Sometimes you get overwhelmed with all the "information" and you will need another pair of ears to hear what you may have missed. I would go home sometimes in a fog, information overload.

Good luck in whatever your decision is, please let us know how you are doing!!

Laugh and smile everyday!... :)
Sirena

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

Yes Gracie, it was really worth it! Every time I hug my kids I smile and know, it was all worth it!

God bless!!

robe68
Posts: 14
Joined: May 2010

For my part, I can definitely say it was all worth it. From my original diagnosis till now, I have had a son and watched him grow for the past 2 years. It has been an utter joy.

From a fellow survivor,
Rich

brian1145
Posts: 2
Joined: Apr 2010

Sirenaf42 thank you for your encouragement and kind words during rough times. I had to have four surgeries to my head and neck and radiation treatment will be soon. I spent 10 days in intensive care and 7 days in a regular room just par for the course I guess. Right now I'M taking it one day at a time, and just recovering from all the surgeries that were done. My doctors are very optimistic about my recovery. I lost my smell and I do miss it but hey I'm not complaining if that's all I loose. However I did suffer memory loss but doctors said it should only be short term. THANK YOU for helping me get through this and continue to stay in touch.

mqt
Posts: 2
Joined: Jul 2011

Margie and all,
I have been diagnosed with olfactory neuroblastoma cancer on my left side of nose and eye and had gone thru 2 cycles of chemo therapies and now waiting on MRI results to determine surgically remove cancer and later with radiation treatment. I am having blurry vision especially on my left eye. Margie and forum, please fill me in what to expect from this rare case of cancer. Can this type of cancer be beaten, vision can be restored? How long do I expect to be out for surgery?

Thanks so much in advance!

Mike

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

Hi Mike, I am a 3 year survivor of Esthesionueroblastoma (another name for olfactory neuroblastoma), read my profile for my story. My cancer was in my ethmoid sinus and nasopharnyx, luckily it had not spread to my eyes or bone.

Please feel free to email me at sirenaf44@yahoo and I will help out in any way I can!

Hang in there, you are not alone my friend!

Sirena

mqt
Posts: 2
Joined: Jul 2011

Thanks Sirena for your prompt and informative response. I feel very comforting and
encouraged that you had the same type of cancer and had made that cancer history.
Does IMRT radation treatment work best for olfactory neuroblastoma cancer? It surely worked
for you. Some friends suggested me to proton radiation treament. I would appreciate your
advice and inputs.

Thanks again!
Mike

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

I know people who have had IMRT and Proton for our type cancer. Im not sure of why one gets one type and one gets another, maybe its the size and location? I would ask your radiation oncologist for an explanation of the different types. When I had my treatments, I didnt know anybody with our type cancer, so I had no clue of what to do or what was going to happen. So I just went with the flow of my schedule at MD Anderson. I look back and think I must of looked like a zoombie or something, just moving wherever they wanted me to go. How do you know what questions to ask, when you dont even understand your cancer? It just crazy and mindboggling.

olivia46
Posts: 27
Joined: Sep 2011

Hi Sirenaf42 and all:

I was just diagosed with olfactory neuroblastoma. I'm going to see a radiation oncologist and a neurosurgeon soon. The operation will be within 6 weeks. Just wonder what to prepare for questions and what to expect of the operation. I was seeking 2nd opion and came to u penn hospital in Phili.

I'm glad to find this support group, however, not familiar with the site yet.

Thanks,

Olivia46

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Welcome Olivia...LOL, if you hit that post button more than once because it's slow, you'll end up with four posts... we've all done it.

Here is a link to Sweetblood (Dawn's) accumulation of links and information you might find very helpful.

SuperThread

Best,
John

olivia46
Posts: 27
Joined: Sep 2011

Hi John:

Thank you very much for the link.

Olivia46

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

You will be glad you found this support group... many times I just needed to know someone understood me.. and there many here that do!

You can email me at sirenaf44@yahoo.com and you can ask me anything. My cancer was in my ethmoid sinus, oralfactory nerve and nasopharnyx. Surgery was endoscopic followed by 6 weeks of IMRT radiation to sinus area, both left and right also including my right neck lymphnodes. I am 3 years cancer free :)

Look forward to getting to know you.

Sirena

olivia46
Posts: 27
Joined: Sep 2011

Hi!

My cancer is on the left sphenoid sinus. The radiation oncologist told me that I will need 6.5 weeks, 5d/week, radiation threapy after my surgery. He mentioned damage of my vision. I need to find out more about what he meant. Am I going to be blind on one side or both sides? I have his e mail address, I'm going to send him questions. Also I need to see a medical oncologist for chemo. My ENT was away, I guess we are going to discuss this.

Thanks for listening.

Olivia

olivia46
Posts: 27
Joined: Sep 2011

Hi!

I am still not familiar with steering the site. I checked the "olfactory neuroblasatoma"(ON) as the favorite site by copying "ON" address before login. After login,I went to "ON" favorite site to get here. I'll check the help desk again. I asked before but did not get the response.

I had a long surgery in October by two doctors. I was told the tumor was removed completely. However, for preventive care,it is wiser to have radiation therapy. I'm going to have mask preparation next week. We need to drive ~ 1.5 hr to the hospital. Should we stay nearby the hospital? Could anyone please advise me how bad the side effects are going to be and how to deal with them? I knew that eating is going to be a problem, I should have Ensure handy; dry mouth could be eased a bit by mouth wash; some local hair loss.... Some mentioned the mask was awful..... Is the treatment could result in any memory loss or peosonality change? I'm just very nervous. I'll ask these questions next week too. Any advice will be greatly appreciated.

Thank you for listening.

olivia

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

Don't be afraid to start another thread so you get more answers to your questions. I had radiaiton therapy in 1998, and am preparing to go through it again starting in January. I did't find it to be that bad the first time. I worked every day throughout, had no significant pain or other side effects to prohibit ordinary activities. I drove, housekept, recreated, and slept. Actually i slept a lot because I was pretty tired.

If you are not clausterphobicc the mask isn't bad. The individual sessions only take a handful of minutes to do. So the longest thing you've got going will be the drive.

Since I couldn't get IMRT where I live, I have moved to a city about 375 miles from home for the duration of my radiation therapy. If I lived an hour and a half away from the hospital, I'd probably tough it out and drive every day. But that's pushing it.

Best to you.

Pat

olivia46
Posts: 27
Joined: Sep 2011

Hi, Pat:

Thank you so much. I have some ideea about the housing facility near the hospital. Will see how it goes to make decision accordingly.

olivia

olivia46
Posts: 27
Joined: Sep 2011

Hi, Pat:

Thank you so much. I have some ideea about the housing facility near the hospital. Will see how it goes to make decision accordingly.

olivia

olivia46
Posts: 27
Joined: Sep 2011

Hi, Pat:

Thank you so much. I have some ideea about the housing facility near the hospital. Will see how it goes to make decision accordingly.

olivia

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Sorry that you had so much trouble getting to this site. Normally when you first log in click on “Discussion Boards” and it will bring you into the site where there are a lot of “Cancer Specific” sites scroll down to “Head and Neck Cancer” that is where we are. Just click on it. Then like Pat was telling you open a new post by clicking on the “Post New Discussion Topic” and there post your question and a lot of other will do their best to give you answers.

Wishing you well in your treatment
Hondo

olivia46
Posts: 27
Joined: Sep 2011

Hi, Hondo:

Will give a try. I guess there must be a specific catagory that questions for olfactory neuroblastoma will be lumped together.

Thanks a lot.

olivia

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

I too welcome you to the faimly here on CSN, there is a lot of help and infomation that you can get right here from others who have been there.

Wishing you all the best
Hondo

olivia46
Posts: 27
Joined: Sep 2011

Hi Hondo:

I'm still trying to know how to navigate in the support site. It seems I can only create mails by replying to other people's mail? Need to spend more time to be familiar with the site.

Thanks,

olivia46

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Not sure how I missed this one Margie...sorry.

I live in Lakeland and Watson Clinic Center for Cancer Care and Research is also affilliated with Moffit...very good place.

I went/go to Watson Clinic here in Lakeland.

Hoping all is well with you and yours.

Best,
John

mdsamoa
Posts: 1
Joined: Jun 2013

I am writing for my 62 year old brother who lives on the Island of American Samoa. He has recurring Olfactory Neuroblastoma.  He has had two surgeries in Manila Philippines.  He had his last surgery in December 2012 and it appears to not have been successful.  The reoccurrence of the cancer is near or in his optic nerve.  He has lost most of his sight in both eyes, therefore the reason I am writing for him.  Knowing this is a rare form of cancer can anyone recommend a hospital in the US.  He has relatives he can stay with near Cleveland OH, San Diego, CA and Greenville South Carolina. My brother does not have insurance or many funds to pay for surgery so we are looking at options that will work with him on a payment schedule for the costs of surgery and treatment.  Does anyone know of any organizations that I can reach out to for assistance.

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