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sphenoid and ethmoid malignant melanoma

mums flower
Posts: 12
Joined: Sep 2009

Hi there I feel blessed that I have found this site my mum recently had a mass removed from her sphenoid and ethmoid sinus as it turned out it was invasive malignant melanoma. My mum has her first oncologist apointment on Friday Sept 18, 2009. I talk to my mum twice a day morning and evening she sounds fantastic. My mum has never been one to worry she is my role model, where I think I need to give her strength instead she has given me strength. I will update after the apointment. Would love to hear from anyone who has had this type of cancer.

Janette

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

I am a survivor of Esthesionueroblastoma of the ethmoid sinus and nasal cavity. One year from my last day of radiation is about 17 days away. Your moms strength will help her get through what will seem to be the longest days of her life. Stand by her and support her as she will need you.

Sirena

mums flower
Posts: 12
Joined: Sep 2009

Hi Sirena thank you so much for your reply may I ask what stage your cancer was at? I think I have been on every site on the internet to try and self diagnose my mum as I needed to know what we were up against. The ENT that took out the mass said prognosis was poor I didn't take that at face value because what I have found out from the many sites that I have visited is that every single person is different so I am running with that thought. What worked for one may not work for another. I am glad that you are coming up on the one year mark of your last treatment. I will keep in touch.

Janette

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

You are right everyones treatment is different. Your moms cancer and my type are different so the treatments Im sure will be different as well. I was early stage 2. I had 2 endoscopic surgeries to remove the tumor and then 6 weeks of radiation to my sinus's and lymphnodes. I know people with my form of cancer that were farther along that had to have surgery that cut them from ear to ear (like a head band) as endoscopic was not an option.

I will tell you to read up on the type of cancer, learn all you can about it, but do not try and self diagnosis. It will drive you crazy. I did that and mentally exhausted myself. Go with you mom to every appointment. Write down any questions you and your mom have now, on a piece of paper and ask them. Its amazing how you will feel so overwhelmed at the appointments and forget to ask questions. Writing them down helps. Having someone go with your mom to appointments is an extra set of ears to listen. I remember leaving an appointment and looking at my mom and saying... did you get all... I would get so caught up in one thing he said, Id miss the next 3.

Good luck at your appointment and keep us updated. I will light a candle and say a prayer for your mom and you.

Sirena

mums flower
Posts: 12
Joined: Sep 2009

Hi Sirena first off my Mum and I would like to thank you for saying a prayer and lighting a candle we are very grateful. I wasn't able to go to my mum's appointment today as I don't live near my mum, and so it was just my Dad and Mum that went. The oncologist looked up at Mum's sinus' and didn't say anything and my mum never asked (I don't think she wants to know)I think from what they were told from the ENT 2 weeks ago is that they couldn't get all the mass as it was either attached to the optic nerve or near the optic nerve. In the next 2 weeks my mum is scheduled for an MRI as well as a CT scan. Blood work was done today. So now we just have to wait and see what the scans show Mum will then be fitted for a radiation mask. I can tell you one thing about this diagnosis it sure puts life into perspective things that used to be a big deal are now be put by the wayside. Will keep you in my prayers.

Janette

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

OHHH the fun radiation mask....not at all what I expected it to be.... you can look it up on the internet, and actually on YOUTUBE.... that way you and your family can see in advacnce what it is. I thought it was like a hockey mask lol... I was wrong :)

Please feel free to email me at sirenaf40@aol.com, should you or your family have questions about the road ahead. I have walked that walk, and it always helps to have someone who has been there before you to lighten the path.

Sirena

snow_white290
Posts: 2
Joined: Jan 2010

I was reading your story and it sounds very similar to what my mom is going through right now....I realize this was a few months ago and was wondering how things have been going - we are just starting the chemo and radiation in a week. I know you mentioned that they could not get all the mass as it was near the optic nerve, has there been any progress?

thanks so much and my prayers are with you.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

Sorry to hear about your Mom having cancer, but you are in the right place for help. We are all here for one reason and that is to help others who are just starting. Sometimes you will get very good advice and other times just prayer, but you will always go away with something. Keep us posted on how your Mon and you are both doing, take care and welcome to CSN

God bless and keep you both in his care.

snow_white290
Posts: 2
Joined: Jan 2010

thank-you so much !!! it's comforting to know there are people out there to talk to.

my mother is extremely worried about losing her vision - her radiation doctor said that it is most likely a possibility not only in the right eye but the left as well.

I am wondering if anyone else out there has had doctors mention this and what has happened since then?

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I am not sure of your Mother Cancer; I am NPC cancer in the nasal passageway so they had to use radiation very close to the nerves for the eye and ears and the possibility of going blind and deaf was always there. I did loose hearing but I can see very well.

Make it a matter of prayer and leave it in Gods hands, I to with be praying for you both.

mums flower
Posts: 12
Joined: Sep 2009

Hello sorry I haven't been keeping up with the site but I had nothing to write about until now... Mum completed radiation Nov 09 it couldn't be a strong dose due to the location of the remaining tumour. This past week My Mum started to get double vision again in the same eye as it came last time the MRI on Friday confirmed what we already knew so off we go to see the Ent surgeon this week, he told my mum in November that he was going to be her best friend (now I know why). I am an eternal optimist and will always be until I see otherwise. From what I have read on the internet about statistics and such I have decided to throw them by the wayside as we are all individuals and I refuse to put my Mum into a percentage. My thoughts on this are remove the tumour again and try chemotherapy maybe that will be the answer. My Mum and Dad are in good spirits and incorporating humour into this which I am happy for. I feel for everyone who has to go through something as terrible as Cancer I read this site and it gives me faith and hope. I pray for all families going through this.

Janette : )

AliviaD
Posts: 3
Joined: Mar 2013

Hi, I just wanted to ask as the thread is old, how you are all going with the cancer?  I had a ct scan this week and discovered that my sphenoid sinus on the right is over double the normal size, which is whacauses caused pressure, pain and recently my right eye lid twitches constantly now... Ruling out mucous at the moment, which I feel is a waste of time as I have never had sinus problems, th. Only issue I have had is right eye pain, severe headaches, severe toothaches that resulted in my teeth being infected and finally last year they took them all out :(  I'm 34 so this was not ideal in my eyes..... 

 

Anyway... I'm waiting and would like to know how u are

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

AliviaD,

 

Welcome to the H&N forum.

 

The person you are trying to reach hasn’t been on line since April of 2010.  I would think you will have a slim chance to hear a response.

 

A better choice would be to start a new thread with your questions and observations open to all participants.  If you do that you will have a much greater chance of response.

 

Matt

ymegd
Posts: 5
Joined: Mar 2013

Hi I was dignosed with melanoma on my left nostril they did a flap all went well-what  happened was 1 year later dignosed with recurring melanoma in left maxillary sinus also going into infraorbital nerve just had surgery on the 11 th of march 2013. going to dr next week to set up radiation and possible chemo-- I have been lucky so far did not lose my nose or my left eye, and they dont think its spread any where else. hang in there! would like to talk more since Iam pretty new to this site also.

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