Rhinectomy

SteveBlue
SteveBlue Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
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

Comments

  • CEMunger
    CEMunger Member Posts: 15
    #2
    rhinectomy

    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) 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    welcome

    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

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #4
    CEMunger said:

    rhinectomy

    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) 

    Welcome

    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
    Skiffin16 Member Posts: 8,305 Member
    #5
    CEMunger said:

    rhinectomy

    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) 

    Welcome...

    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
    KTeacher Member Posts: 1,103 Member
    #6
    CEMunger said:

    rhinectomy

    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) 

    Search

    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.

  • barcapnett
    barcapnett Member Posts: 1
    #7
    CEMunger said:

    rhinectomy

    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) 

    rhinectomy

    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

  • CEMunger
    CEMunger Member Posts: 15
    #8
    CivilMatt said:

    welcome

    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

    thanks

    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

  • CEMunger
    CEMunger Member Posts: 15
    #9
    KTeacher said:

    Search

    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.

    KT, 
    Stanford is three hours

    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

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    CEMunger said:

    thanks

    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

    Above Matt's Post

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

    Best,

    John

  • CEMunger
    CEMunger Member Posts: 15
    #11
    Skiffin16 said:

    Above Matt's Post

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

    Best,

    John

    John, 

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

    Carol

  • yogygator
    yogygator Member Posts: 2
    edited May 2020 #12
    Rhinectomy

    Hello all!  My husband is 65 yrs old and will be getting his nose removed this Friday.  Needless to say, we are both scared.  My heart breaks for him.  I'm wondering if anyone might know information in finding a type of mask that would have a simulated nose (Zoro mask?) where he could wear his glasses?  He has a very aggressive squamous cell carcinoma that began about 4 months ago.  He had the MOHS, graft, etc., but it just continued to take over his nose.  Any thoughts, ideas, suggestions, etc. would be greatly appreciated.  Thx!  Ann

  • dlp.69
    dlp.69 Member Posts: 1
    edited May 2020 #13
    Rhinectomy

    Hi peoples , My Mother is 75 yrs old. I have been here full time carer for the last five years , as she has copd chronic kidney failure,heart and lung disease,and a nackeredL4 But the mind is still sharp as a tack. She was due to have 4bcc's removed from the nose back in  November of last, Along came Covid 19 Surgery was 13/5/20 And then involv

    ed total removal of her nose.. back home now but the copd is playing up after all the drugs and surgery .. Finally to the question . Where in queensland australia can one get a prosthetic nose made

    ps (she said she wants a groucho marks nose) I know she is joking

    Many thanks in advance dlp.69

  • CancerFreeSunny
    CancerFreeSunny Member Posts: 76 Member
    edited May 2020 #14
    yogygator said:

    Rhinectomy

    Hello all!  My husband is 65 yrs old and will be getting his nose removed this Friday.  Needless to say, we are both scared.  My heart breaks for him.  I'm wondering if anyone might know information in finding a type of mask that would have a simulated nose (Zoro mask?) where he could wear his glasses?  He has a very aggressive squamous cell carcinoma that began about 4 months ago.  He had the MOHS, graft, etc., but it just continued to take over his nose.  Any thoughts, ideas, suggestions, etc. would be greatly appreciated.  Thx!  Ann

    Hi. I had MOHS on my nose too

    Hi. I had MOHS on my nose too but I want to give you this great website. They do prosthetic nose improvement:

     

    https://www.medicalartprosthetics.com/prosthetics/nose/

     

    I now have sqaumus on side of my face near my ear. Doc has done freezing, deep biopsy and then this time a heavy freezing. Hopefully this takes care of the matter for me. Laughing

  • macmanrick
    macmanrick Member Posts: 16
    #15
    Rhinectomy

    Yogigator and dlp.69:

    I am sorry to hear about your loved ones.  I am now 63 and 3 1/2 years out from a total rhinectomy.  I had agressive SCC, T2N1M0. I had the rhinectomy followed a week later with surgery to remove 90+ nodes from my neck.  I am now fine and back to my new normal life.  I have a wonderful Dentist specializing in  Dental Phrostethics.  I have several prhosteic noses and though not perfect, work well enough.

    My srugeon recommended this route as opposed to reconstructive surgery for two reasons:

    1.  Very hard and cumbersome (many prcedures) to build up in a reconstructive proceedure.

    2.  Removeable, as the surgeon stated "I can see everything, nowehere for any recurrence to hide".

    I also where glasses, your husband will be bandaged for a while, a good eyegglass strap holds the glasses in place up against the bandages.  I wanted a Jimmy Durante nose, tried fake nose and glasses, really did not work (I did not get the Jimmy Durante nose).

    My advice is to look for a specialist, like I found.  They are committed to their work and will work hard to make it right.

    Good luck!  Reach out if I can help more. 

    As you can see, there is not allot of correspondence on this proceedure and treatment.  I will help if I can.

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