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MY RARE CANCER recently diagnosed Sinonasal melanoma stage TIVa

mjdouty
Posts: 6
Joined: Jan 2011

My cancer considered less than .4% of all cancers. Not many statistics on survival but looks pretty bleak even without metastasis. Surgeon says 1 1/2 to 5 years. Surgeon says think can cure in sinus but will come back elsewhere. Will have face radiation after surgery. seems side effects of salivary gland and no taste which may never return.Surgery in two days after my wedding tomorrow. Surgery called cranial facial sinus obliteration, yeah it's as bad as it sounds. Pretty afraid of surgery, radiation, future chemotherapy and death. Even though I'm a nurse it doesn't help when it comes to this type of thing.

devoteddaughter
Posts: 2
Joined: Aug 2011

My name is Tina and my mother has just received the same diagnosis. First, I pray for you and hope that this finds you well. We were diagnosed in San Diego and I am currently sitting at the Family House in Pittsburgh where we are intending to seek treatment. The only other option that we were given was Texas.

I would love to know how you are and where you were treated. Our appt. is today with a Dr. Carl Snyderman. Any tips or helpful info. would be greatly appreciated! I had no idea that there would be a blog about such a rare cancer. To be honest, I would wrestle the Grim Reaper for my mom; and I think I just met him. Even though my father and I are doing our best to walk in faith, we are scared and I am angry. I'm an only child and my children only have my parents. I would do anything to keep her here with us as long as possible. My heart is breaking for myself, and now for you. There is no positive info out there! Please contact as soon as you are up to it. My cell is 760-402-4594. Call collect if you need to, please, I would love to hear from you. I am desperate for honest contact.

In His Care,
Tina, devoted daughter

devoteddaughter
Posts: 2
Joined: Aug 2011

My name is Tina and my mother has just received the same diagnosis. First, I pray for you and hope that this finds you well. We were diagnosed in San Diego and I am currently sitting at the Family House in Pittsburgh where we are intending to seek treatment. The only other option that we were given was Texas.

I would love to know how you are and where you were treated. Our appt. is today with a Dr. Carl Snyderman. Any tips or helpful info. would be greatly appreciated! I had no idea that there would be a blog about such a rare cancer. To be honest, I would wrestle the Grim Reaper for my mom; and I think I just met him. Even though my father and I are doing our best to walk in faith, we are scared and I am angry. I'm an only child and my children only have my parents. I would do anything to keep her here with us as long as possible. My heart is breaking for myself, and now for you. There is no positive info out there! Please contact as soon as you are up to it. My cell is 760-402-4594. Call collect if you need to, please, I would love to hear from you. I am desperate for honest contact.

In His Care,
Tina, devoted daughter

tesa's picture
tesa
Posts: 120
Joined: Feb 2011

Hi Tina,
My mother had paranasal sinus cancer. she had radiation and surgery last year at Charleston hospital. She's currently receiving chemo at MD Anderson in Texas. Can't find anyone with this type of cancer.

Heemang
Posts: 1
Joined: Jan 2012

Hi

My mom also has the same type of cancer. She was diagnosed last October 2010, and received radiation therapy 20times . June 2011, the doctors have told her surgery isn't an option. Going through RT was hell for her, no epetite, dry skin, bleeding, fatigue, i cannot write all the side effects. She is recovered from RT and resumed eating well.

She was offered to be in a clinical trial for a drug Roche has developed for melanoma, but unfirtunately she didn't have the gene that will qualify her. No other treatment, such as chemotherapy, was offered since she seemed to be doing ok post RT.

She seems to be doing relatively well, however the tumor in her right sinus is getting bigger again. I can see it bulging and pushing her nose to the left side very quickly.....this worries me to death. What happens when the tumor gets so big that she cannot breath. There aren't many clinical data out there, and even the oncologist at BCCA don't seem to know a lot about this type of cancer. This is so frustrating. It is hard to find and connect with others with the same thing for exchange of information and support. I wish she had common cancer sometimes... It only has been six months post RT and we are running out of treatment options. Also we were told that chemo is only effective 15-20% with this type of cancer.

Bottom line is, we are not giving up. It is not the end until the end comes and we hope for the day without cancer in out minds.

I hope to talk to anyone out there who is going through the same thing and share experience. I wish everyone the best and please do not lose hope and courage.

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