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Rhinectomy

SteveBlue's picture
SteveBlue
Posts: 1
Joined: Feb 2003

I'm new here --but not new to cancer. I had a rhinectomy (loss of my nose) to cancer almost 5 years---yes--my 5 year survivor date is in October of 2003). I see VERY little on cancer in the nose and loss of the nose. My cancer started out as basal (sp) cell---I had 8 surgeries to remove a very agressive basal cell (don't let ANYONE tell you skin cancer isn't agressive!!) which also developed into squamous. Before they took my nose (I went to 5 different cancer centers for advice) I had a forehead flap done and had gone thru 30+ radiation treatments....the cancer still came back.
Anyway--I have a great prosthesis team up at UCLA MEdical in Los Angeles--as well as a great surgical team.
I'm not sure how often I'll check in here....but my email address is sblue@pacbell.net.
Blessings to all,
Steve

CEMunger
Posts: 15
Joined: Jul 2013

I am ten days post surgery. I've been looking for any and all information on rhinectomy and what to expect afterwards. The team at Stanford didn't have much to say, as it's so rare. There is not much to find online either. 

me: squamous cell carcinoma, (skin cancer) of the soft tissue of the nose. Hence the removal of my nose. (rhinectomy) 

KTeacher
Posts: 910
Joined: Jan 2011

Welcome to our little corner of the internet, you have found a wonderful, supportive group.  I agree with Matt, you might not  get much response because you posted on an old post, you might want to start a new post.  You are in good hands at Stanford, I see Dr. Sunwoo and DLewis sees Dr. Kaplan.  Are you going to be having any further treatment, Chemo or radiation?  Do you live in the penninsula or are you driving from other areas (I am in Merced).  Rare, I know rare--not the same location but last November I had my eye removed because cancer had travelled up the nerves in my cheek to the orbital nerve.  Feel free to p.m. me.  I also belong to a group, Lost Eye--maybe there is a group specific to your type of cancer but please stay here also.  There is so much knowledge and support on this site.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Like mentioned, very old thread...

But you might try emailing the guy...

You never know, my AOL email addy is like 20+ years old.

Best,

John

KTeacher
Posts: 910
Joined: Jan 2011

Rhinectomy Steven Blue.  He started a newsletter.  Stanford also has a specific Head, neck support meeting, there is a booklet in the waiting area that has the support that is available for you.  I live too far away and have not been in the area on the correct dates to attend the groups.  Also, when I was in the Hospital in November 2012, people came in to see me to find out what help I needed, I can pass on names and numbers.

CEMunger
Posts: 15
Joined: Jul 2013

KT, 

Stanford is three hours away from me, so, yeah, it's not convenient at all. 

I'm very happy for you that you had people come talk to you while you were in the hospital. I was not so fortunate. 

Thank you for responding!!

Carol

barcapnett
Posts: 1
Joined: Sep 2013

Hi to CE Munger

I wish I had seen your message earlier!  I went through this almost exactly two years ago (July 5, 2011).  I am now wearing a prosthetic nose created by UCLA and am completely back to my "normal" life (well, new normal).

I would be happy to help you in whatever way I can.  You can contact me through my regular email at bcb6772@gmail.com, and if you want/need to talk, just pass along your phone number and I will try to reach you.

Just fyi, when my melanoma was discovered (the reason for the rhinectomy), I was 56 years old, working full-time, living with my husband, otherwise in pretty good health living a pretty active life.  It has been quite an adjustment, as I'm sure you are experiencing.  I only wish I could have talked with someone who had been through it before me, but I didn't know anyone who had.  

So if I can be of help in any way, please let me know.

Best, Barbara

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

CEMunger,

Welcome to the H&N forum, I am sorry you find yourself here.

The thread you have responded to is 10-years old and may not illicit much response.  If you wish to get maximum exposure you should start a new thread.

There are many members eager to provide help, advice or a listening ear.

Matt

CEMunger
Posts: 15
Joined: Jul 2013

Matt, 

Thanks for the welcome. 

I don't know anything about threads. This was the first thing I found that was anywhere near what I'm going through.

I'll try to learn fast!

 

Carol

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

Carol, check out Barbara's reply to you above the one that you jsut responded to of Matt's...

Best,

John

CEMunger
Posts: 15
Joined: Jul 2013

John, 

Thank you. I sent her an e-mail. I didn't want to repeat myself here.

Carol

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