Anyone out there that has lost their nose/sinus due to cancer surgery?

adirondackgirl
adirondackgirl Member Posts: 14
in Head and Neck Cancer #1

Hi all! Just joined and thanks so much for your warm welcome. Wanted to know if their is anyone out there that has lost their nose/sinus area to cancer surgery and has had to be left unreconstructed due to previous recurrences. Have to wait 2 yrs. now after last surg. Dec. 19 and area has to be cleaned/packed with surg. packing and redressed every other day.

I am freaked out as I looked at the surg. site with the home nurse and it was too soon. I've had nightmares since and been very depressed. I've had 6 surgeries and 33 radiation treatments and 3 times it either came back or they missed a pocket. It's invasive squqmous cell and I'm very scared and feeling alone.

I need some support/encouragement/hope and know that there's folks out there that understand and can be there for me as I'm alone and very scared. I can't have any more radiation and more surgery would be inhumane and leave me with no quality of life

I am praying that this is the end of the cancer and not the end of me.

I've been a nurse for 40 yrs. and have always helped people and so want to get through all of this and be there for others going through this tough journey.

Or just to hear from anyone that's gone through facial surgery and radiation.....leaves alot of collateral damage.

Hope to hear from you!

God bless,

Julie

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    #2
    Eye not nose

    As I have stated in previous posts, I lost my eye due to recurrance of my original cancer.  I also have perineural invasion, we just keep chasing it.  If your doctor has said no more radiation, I have gone through radiation 3 times and Cyberknife the last time.  I know on a site I go on for Lost Eye, the surgeon can leave the surgical area open to heal, I had a skin graft and am very thankful for that.  I couldn't look in the mirror for a long time.  I don't know how but I have just been able to roll with the punches.  I know we have had someone on this site or the Skin Cancer site that had nose removed.  The Skin Cancer site is not as active as H & N.  Please do stick around and play tag with us.  I know that you are a night owl, hopefully you will get the support that you need here.

  • CEMunger
    CEMunger Member Posts: 15
    #3
    Total rhinectomy

    Julie, 

    I had a total rhinectomy due to squamous cell carcinoma last July along with radiation (30 treatments).

    I am healed from both and am now working on getting a prosthetic and/or reconstuction. Both have been long drawn out processes as it seems everything with this is.

    I would be very happy to talk with you and help you through this hard time. I, too, was mainly alone all the time. I had to figure out how to clean and maintain my surgery site, no one could tell me how or could show me. The fear and nightmares, too. 

    Carol

     

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

    Total rhinectomy

    Julie, 

    I had a total rhinectomy due to squamous cell carcinoma last July along with radiation (30 treatments).

    I am healed from both and am now working on getting a prosthetic and/or reconstuction. Both have been long drawn out processes as it seems everything with this is.

    I would be very happy to talk with you and help you through this hard time. I, too, was mainly alone all the time. I had to figure out how to clean and maintain my surgery site, no one could tell me how or could show me. The fear and nightmares, too. 

    Carol

     

    Thank you

    Carol,

    Thank you for posting.  We haven't heard from you in awhile.  Glad you are on the road to  recovery.  I know that your post will be encouraging to Julie.  BTW, she is a night owl from New York so she won't see the post for a few hours, she sleeps during the day.  Have you had any problems with sinus.  I had my eye removed and then had an abcess in sinus and had to have further surgery.  I need to do sinus rinse daily, no longer feel like I'm drowning!  My ENT added and over the counter (Alkalol) product to the saline solution and it has been a tremendous help.  Please stay in touch.  I have a little more surgery before I can look into prosthetic for eye area.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    I sent you a private

    message, Julie.....I do remember a fellow within the last few months who had lost his nose.....and there is another gal who was here not very long ago who also had an open sinus and at least part of her nose was removed, too.  She is on the Survivors of Head and Neck Cancer site on Facebook. 

    p

  • CEMunger
    CEMunger Member Posts: 15
    #6
    KTeacher said:

    Thank you

    Carol,

    Thank you for posting.  We haven't heard from you in awhile.  Glad you are on the road to  recovery.  I know that your post will be encouraging to Julie.  BTW, she is a night owl from New York so she won't see the post for a few hours, she sleeps during the day.  Have you had any problems with sinus.  I had my eye removed and then had an abcess in sinus and had to have further surgery.  I need to do sinus rinse daily, no longer feel like I'm drowning!  My ENT added and over the counter (Alkalol) product to the saline solution and it has been a tremendous help.  Please stay in touch.  I have a little more surgery before I can look into prosthetic for eye area.

    Thanks KT

    Thanks for the heads up on Julies hours. I understand having my days and nights convoluted. I still have problems sleeping.

    For you and for Julie, yes I'm still battling odd things. I've had an infection in my face, think I have another infection in what's left of my left sinus. My vision has gone bad, they think from the radiation, which has started a problem with a nerve in my neck that causes pain in my eye. If there is a weird thing that can happen, I think I've had it. High blood pressure, pinched nerves, migraines, teeth problems.

    Right now I'm trying to find a PCP doctor. I've been turned down by 8 doctors in the last 2 weeks. My ENT never returns phone calls, his office gals either.

    Long story short.....this cancer stuff sucks. 

    BUT...I get up every morning and thank God for another day.

     

     

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