Hello.. I am very nervous typing this... I do not talk about my cancer very often. I had a radicial neck dissection for soft tissue cancer of the right side of my neck (fibro sarcoma) when I was about 11 years old. Previous to that I had had 10 other surgeries for the same thing, but the radical neck resulted in the majority of my neck deformity. This is the first time in my life I have talked to anyone who had similar surgery done, I have never even seen someone else after this kind of surgery.

I'm 43 now, married 21 years and have 3 children. I am very grateful for all the good things I have in my life. But the appearance of my neck bothers me a great deal... I am also about 70 pounds overweight. Not sure why I am writing all of this... guess I just need to talk. I think I am having a mid-life crisis or something, but my neck disfigurement is so upsetting to me and then I feel vain or something when it bothers me because I should be happy that I am alive! But it does bother me and I don't know where to turn.

I have consulted several plastic surgeons and they have said the only thing would be some sort of flap to correct the sunken appearance. I also still have my artery on the right side and it sticks out a lot (almost like a huge scar). The flap sounds very frightening and I don't want a big scar on yet another part of my body.

I'm not really looking for any answers, just felt the need to talk. Thanks for listening...

~Susan

Hi Susan,

You can be sure your in good company here! There is a whole bunch with the same kind of surgical work. Congratulations on so many years of life after cancer. I too wondered why I never saw anyone else with the same scar.

You certainly are a beautiful wife and mother!

There may be someone here that can offer some comments on how they worked out the appearance thing. Personally I think you look fine I sometimes wonder about how people see me and I also know that many times they don't even notice.

I try to think of it as a life achievment badge. Something to be worn with pride. The fact that they can see it means you are a winner!

Feel free to vent here if you need to

Susan, this is a good place to vent, cry, or just muse out loud sometimes. We all understand and have been there.

Just had my second radical neck dissection, and I'd like to send the surgeon back to the class where they teach you to close incisions without leaving strange scars.

But then, after this heals more, probably no one will really notice unless I tell them.

I've found that our most harshest critics are usually ourslelves. Flaws that we think are big and noticeable most of the time other folks either don't see or don't care, mostly because they are too worried about how THEY look.

Sounds like you've had a successful life. And,.. the fact (if my math is correct) that you've been 32 years cancer free is an inspiration to us all.

Best Wishes
Bob

WOW... you guys are great. I wish I'd had you to talk to years and years ago. I never cease to be amazed at the rudeness of people (usually strangers) who will come up and mention my scars out of the blue... sometimes even like "ewww what happend to your neck?" Make me feel like saying "thank you for pointing out my imperfections to me, may I point out yours?" These are people I do not even know!!

Sometimes I do get wrapped up my my self-consciousness and forget that I have been cancer free for 32 years (yes your math was correct ) Maybe I just need a reality check sometimes.

Nobody has ever referred to me as an inspiration before... thank you... I never thought of it that way before.

Susan

Hi Susan:

Welcome to a place where beauty truly isn't skin deep and the folks here, especially the survivors, live that motto every day.

Recently, I had the incredible good fortune to meet one of our members, Packer 66 (AKA Frank) up close and personal. Funny, he has lots of scars and as he jokingly relates, lost one side of his face there briefly, but what I noticed most was the warmth in his eyes and his incredible humor.

Funny you should bring this topic up. Dave is 7 months post-surgery and I honestly (and I would tell the truth even if not pretty) don't notice his neck scar unless I am looking at it on the pillow next to mine. In fact, I am more overwhelmed on a daily basis by his strength of character...and the way he seems taller than before he lost a few lymph nodes and a tonsil.

Of course, if you ask Dave he'll tell you he looked at a picture of himself from last year and said-"hey, what a good looking guy-he must have all of his lymph nodes". Cancer doesn't change some things and British guys with cynical senses of humor are definitely not affected by major surgery (and I wouldn't have it any other way).

So, cheers, and pass the mirror,

Kim

Hi Susan,
And welcome to the group. Those aren't scars - they're character marks!

Congratulations on 32 years.

Gary
---------------------------
stage III, SCC, right tonsil

I just got home from work and I am reading my emails and the message board and have tears running down my face. Never have I felt so much understanding and compassion from people.

Thank you all so much... you're wonderful :p

Hugs,
Susan
(ok here's my signature) 32 years cancer free, 11 surgeries for Fibro-sarcoma of right neck including radical neck dissection in 1971 (at age 11). Lots of radiation but no chemo and I'm still alive and kickin' with 3 teenagers!

Hi Susan! It's nice to hear from someone who has been cancer free for 32 years! That is awesome and so inspiring. Be grateful every day for this wonderful gift of health .....and for the love and support of family and friends. As far as the "disfigurement" - apparently your wonderful husband and kids have looked past that - and see you as the fine person you are. If I were you - just knowing I am alive and have my loved ones around me would be enough, and I wouldn't care what the rest of the world thinks! They don't know what you (and everyone else who has had this surgery) has been through. It can be a cold, cruel world if you let insensitive people get to you....but as I said, just knowing you have beaten cancer for these many years should make you proud to show off your "battle scars" and live life to it's fullest. God bless you and take care always!

Wow it's been a year and a half since I last posted to this forum. Quite a long time but my feelings are always close to the surface. Today at a restaurant, this waitress felt the need to question me about my neck and to point out that her sister had the same "chunk taken out of her neck" recently. And then she was asking me all these questions that I found highly intrusive. I was having lunch with my coworkers who know about my cancer, but I was embarrassed nonetheless. I do not know what to say to people who say things like this... I have even had people reach up to tip up my head so they could LOOK at my neck closer!!! Makes me feel like a frickin' freak show...

Please help with what to say to these rude people... I know they don't mean to be rude, but it hurts my feelings and I don't necessarily like to discuss my situation with strangers. I don't see my scars as a badge of courage or character marks, but I would like to. Just not sure how to accomplish that. You would think since I have been cancer-free for so long that I would have learned to deal with my appearance. That is true somewhat... but every now and then I encounter people like this waitress. Also my boss at work says extremely insensitive things like "Oh good thing you wear your hair long to cover up *gestures to neck*" I am sick of this... I am a person... intelligent... accomplished... and yet I cannot deal with this stuff. Why not say "Susan don't you look nice today" instead of "good thing you wear your hair long" SHEESHHHHHHHHHHHH. Dang I am sorry... I'm rambling and rambling

Susan... insecure, self-conscious...etc.

Oh My Gosh!!! I know what you are experiencing Susan, I have the neck scar too. I have felt like saying have you ever watched "Bambi"? In the words of Thumper, "If you don't have anything nice to say, don't say anything at all"!!!Congrats on your 32 years of survivorship!! Awesome!!! Carol