Necrosis - what fresh hell is this?

waywest
waywest Member Posts: 44
in Head and Neck Cancer #1
I have been reading these boards for months and found so much useful information and at times my only source of inspiration. My husband was SCC stg 4 and he is 4 months post treatment and dealing well with the usual nasty side effects of RAD+chemo. We were so hopeful that each month would be an improvement over the last. Today the ENT found a rather large hole where the original tumor was positioned and all the tissue surrounding it was necrotic (dead & dying).
He has scheduled him for surgery to have it scraped and biopsied but seems concerned that it may have necrotized down to the bone. What does this mean in terms of treatment or prognosis? He just kept saying "We'll cross that bridge when we get to it". I couldn't get any answers out of him at all and my husband just looks so tragic and ready to give up. Another setback and my heart is breaking. Has anyone experienced this?

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome
    So sorry for the fear,anxiety and situation....

    Welcome to the forum, awesome people and tons of experience.....

    While I can't offer any information to your questions, hopefully someone on the forum can give you some good personal experience...

    I can however give you my assurance, you are in my Thoughts and Prayers,
    John
  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
    So sorry to hear about the
    So sorry to hear about the setback. I haven't any experience in what you are going through but wanted to let you know that I am praying for you both.

    Debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Waywest
    I have the same problem with necrosis where my NPC was. Every now and then it will bleed and sometime takes months for it to stop and re-heal it’s self. My doctor at MD Anderson said it was better to live with it rather than to remove it and have just the bone there all by its self to get infected or for the bone to start dying that is because they can’t get to it to cover it with skin. If you like you might want to get another opinion.

    Wishing you well
    Hondo
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #5
    a challenge
    i was told after almost 13 years post treatmen i had necrosis on my pharynx. Treated with iv antibiotics and hbo treatments over 7-8 months. a year later had to have two teeth removed that were infected. removed by oral surgeon who has experience with radiated survivors. included was antibiotics for 30 days. he did follow ups every week for a month, then two weeks for a couple months. now two years later i was told do not come back unless there is a problem.
    i did not have any experience you are going thru so here is all i know. you do not want infection to get into any bone. the only fix if it gets to bone is removal of the bone and then tough time to get that area healed.

    Never, Never, Never give up! there is always some that have it worse than we do and he is a fighter with experience... since he made it to this point in his fight to kick cancer's **** necrosis is a unfilled pot hole on his road to recovery.

    John
  • waywest
    waywest Member Posts: 44
    #6
    fisrpotpe said:

    a challenge
    i was told after almost 13 years post treatmen i had necrosis on my pharynx. Treated with iv antibiotics and hbo treatments over 7-8 months. a year later had to have two teeth removed that were infected. removed by oral surgeon who has experience with radiated survivors. included was antibiotics for 30 days. he did follow ups every week for a month, then two weeks for a couple months. now two years later i was told do not come back unless there is a problem.
    i did not have any experience you are going thru so here is all i know. you do not want infection to get into any bone. the only fix if it gets to bone is removal of the bone and then tough time to get that area healed.

    Never, Never, Never give up! there is always some that have it worse than we do and he is a fighter with experience... since he made it to this point in his fight to kick cancer's **** necrosis is a unfilled pot hole on his road to recovery.

    John

    necrosis
    Thank you all so much for your support. It is helpful to know that some of you have experienced
    similar problems. The ENT was concerned that it may have gone into the bone. I hope not. Then we would be looking at neck dissection and that's a scary thought. I am not going to worry anymore until we have solid answers. I am going to go out, tend my roses and hug my husband.
    I wish I could also hug all of you as well.

    Way
  • DrMary
    DrMary Member Posts: 531 Member
    #7
    waywest said:

    necrosis
    Thank you all so much for your support. It is helpful to know that some of you have experienced
    similar problems. The ENT was concerned that it may have gone into the bone. I hope not. Then we would be looking at neck dissection and that's a scary thought. I am not going to worry anymore until we have solid answers. I am going to go out, tend my roses and hug my husband.
    I wish I could also hug all of you as well.

    Way

    Not as bad as cancer
    but what is? Necrosis is, to some extent, your body's way of dealing with dead/dying/infected tissue - kill off the tissue around it and hope it falls off or is otherwise decomposed. If you've ever had the pleasure of having a sliver under your nail, you have witnessed this process.

    On a small scale, the tissue grows back. If it goes too far, regrowth might be limited. I suspect the concern is less that the bone is damaged (still a real concern) and more that the damage could allow any live cancer cells around to invade the bone. This may be why the doctors are concerned but not in panic mode yet. They worry about worst case scenarios all the time - fortunately, many don't come true. I hope that is the case with your husband and he starts to heal up.

    Hugging the husband sounds very productive - and I envy you your roses. I have never had much luck with them, but found a lovely little yellow one in my (overgrown) garden the other day - probably put in by the previous owners and never had a chance before. Maybe I should neglect my garden more. . . it was a lovely surprise.
  • Pam M
    Pam M Member Posts: 2,196
    #8
    waywest said:

    necrosis
    Thank you all so much for your support. It is helpful to know that some of you have experienced
    similar problems. The ENT was concerned that it may have gone into the bone. I hope not. Then we would be looking at neck dissection and that's a scary thought. I am not going to worry anymore until we have solid answers. I am going to go out, tend my roses and hug my husband.
    I wish I could also hug all of you as well.

    Way

    Sorry, no useful info to offer
    But going out, tending roses, and hugging hubby and others? You sound like a woman with a good game plan.
  • waywest
    waywest Member Posts: 44
    #9
    DrMary said:

    Not as bad as cancer
    but what is? Necrosis is, to some extent, your body's way of dealing with dead/dying/infected tissue - kill off the tissue around it and hope it falls off or is otherwise decomposed. If you've ever had the pleasure of having a sliver under your nail, you have witnessed this process.

    On a small scale, the tissue grows back. If it goes too far, regrowth might be limited. I suspect the concern is less that the bone is damaged (still a real concern) and more that the damage could allow any live cancer cells around to invade the bone. This may be why the doctors are concerned but not in panic mode yet. They worry about worst case scenarios all the time - fortunately, many don't come true. I hope that is the case with your husband and he starts to heal up.

    Hugging the husband sounds very productive - and I envy you your roses. I have never had much luck with them, but found a lovely little yellow one in my (overgrown) garden the other day - probably put in by the previous owners and never had a chance before. Maybe I should neglect my garden more. . . it was a lovely surprise.

    Tending the garden
    Thank you DrMary,
    Very useful information. My hub was very fit and strong as an ox going into this and I expect him to pull through with flying colors ( even though he is just a rickety boney old thing at the moment:-].Went to the health food store and bought Cumurin along with a cartload of other supplements that our doctors would frown on since most of them are quite traditional. I figure it can't hurt.I hope they can just scrape all the dead tissue away and the hole will heal over since right now it just functions as an unwelcome food storage unit. The hardest part is trying to keep him focused on what he CAN do as opposed to what he CAN't do.I have friends who have battled cancer and all of them seem to agree that the treatment and side effects for HNC
    are absolutely horrific.
    We are in the Pacific NW and I have a banana tree growing right through the middle of my compost. The survivors on this board are kind of like your yellow rose and my banana tree I think.I honestly think that if it happened to me, I would just stretch across the railway tracks and be done with it. I would never have the kind of strength
    and courage that I see on these boards.Hooray for everyone here. Forget Batman, you are the true heroes!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    waywest said:

    Tending the garden
    Thank you DrMary,
    Very useful information. My hub was very fit and strong as an ox going into this and I expect him to pull through with flying colors ( even though he is just a rickety boney old thing at the moment:-].Went to the health food store and bought Cumurin along with a cartload of other supplements that our doctors would frown on since most of them are quite traditional. I figure it can't hurt.I hope they can just scrape all the dead tissue away and the hole will heal over since right now it just functions as an unwelcome food storage unit. The hardest part is trying to keep him focused on what he CAN do as opposed to what he CAN't do.I have friends who have battled cancer and all of them seem to agree that the treatment and side effects for HNC
    are absolutely horrific.
    We are in the Pacific NW and I have a banana tree growing right through the middle of my compost. The survivors on this board are kind of like your yellow rose and my banana tree I think.I honestly think that if it happened to me, I would just stretch across the railway tracks and be done with it. I would never have the kind of strength
    and courage that I see on these boards.Hooray for everyone here. Forget Batman, you are the true heroes!

    Banana Tree
    Did you ever get any bananas from your tree; I have banana and Avocado growing in my yards. The winter gives them hell every year but I just love having them around as they remind me of home.

    Wishing you the best
    Hondo
  • waywest
    waywest Member Posts: 44
    #11
    Hondo said:

    Banana Tree
    Did you ever get any bananas from your tree; I have banana and Avocado growing in my yards. The winter gives them hell every year but I just love having them around as they remind me of home.

    Wishing you the best
    Hondo

    bananas
    Hi Hondo,
    Well the day I see a banana on that tree I'll know that global warming is real!
    thinking that by the time you and I grow bananas they will have a cure for cancer:-)
    Hope springs eternal!

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