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My husband passed away in November 2005 at the age of 34 [...]

Posted by Alisa @alisa4, Sep 13, 2016

My husband passed away in November 2005 at the age of 34 from squamous cell carcinoma, he had tongue cancer. What annoyed me more than anything is that his dentist excused a tumor (it looked like an ulcer) on his tongue, not one time but twice. We then heard from a local ENT that he also had a patient with tongue cancer and she got it cut out and is leading a mostly, normal life. When the ENT went in for surgery, he couldnt continue and said it had spread and was beyond his expertise and sent us to U of P, with supposedly the best surgeon there. That was the year from hell. It started with a huge reconstructive surgery where they cut out almost half of Greg's tongue and reconstructed it with an artery from his leg. He had over 30 lymph nodes taken from his neck which never healed properly and the smell from it being infected was worse than anything I ever remember. Post surgery took forever to heal and he had to do radiation and chemo after he healed. He also had a trach put in for a month or so after surgery and a feeding tube in his stomach because it would be hard to eat for a while...or basically for the rest of his short life. He lived 9 months after his surgery. There are times I kick myself hard for allowing the doctors to cut him to pieces. A few other I have heard of, opted not to have surgery and they did radiation which seemed to shrink the tumor. Although, they might have discomfort and some difficulty swallowing, they are still alive today. Please know all your options. Ask around and see what others have done before you. I needed to tell my story and vent. I know people are scared and I'll say a prayer for all of you. God bless.

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I am sorry I had that to with surgery I know the pain he went through.He had to be strong to deal with the pain.Now I have a tumor behind my tongue they can't find. You must be a very strong women and am praying for you to heal. I had to boys die at 18 and 24 I questioned why for years and there is no answer.I stopped questioning my cancers too.I just try to be positive not stress and take care of myself. I want you remember that you will never get over it but with time you can heal as long as you talk about him he was here.talk about good memeries.You will find people don't want hear it thinks it hurts you but he was in your live and always will be.don't cry just laugh at all the crazy things you did together.It really works I still talk about my boys with pride.Never forget he wants you happy and misses you too and you had his love and not many people have someone to be there for you.he was blessed. I am single at age 67 and no family they have passed on.I hope this helped if not sorry I put my 2 cents in.

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Hi @alisa4, thank you so much for sharing your experience. I am so sorry that you had to go through that. Great advice and so important to get second opinions and understand the risks and benefits of all of the treatment options. Thinking of you!

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@pati

I am sorry I had that to with surgery I know the pain he went through.He had to be strong to deal with the pain.Now I have a tumor behind my tongue they can't find. You must be a very strong women and am praying for you to heal. I had to boys die at 18 and 24 I questioned why for years and there is no answer.I stopped questioning my cancers too.I just try to be positive not stress and take care of myself. I want you remember that you will never get over it but with time you can heal as long as you talk about him he was here.talk about good memeries.You will find people don't want hear it thinks it hurts you but he was in your live and always will be.don't cry just laugh at all the crazy things you did together.It really works I still talk about my boys with pride.Never forget he wants you happy and misses you too and you had his love and not many people have someone to be there for you.he was blessed. I am single at age 67 and no family they have passed on.I hope this helped if not sorry I put my 2 cents in.

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Thanks for sharing @pati! Are you in treatment now for the tumor behind your tongue?

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I went though 29 radiation and chemo on the last cancer the one they couldn't find .Good so far .I went to N.C Duke cancer center.Ilive in VA 4 hours away for both they are great.I had tongue cancer before this last one.I tell you I have never had pain like that they cut out a piece of my tongue and reconstructed it.Killed all my nerves and taste buds.Every 4 months the pain comes back and hurts just as much as when they cut it out.I deal with itbut there is so much pain I try anything to help it but I am alive and happy for every day I have.The tumor they can't find the said they could not have any more radition they gave me the strongest they had.They could give me chemo if it comes back.I decided that I will not do chemo.I would rather pass away than let them put that poison in me and still die.

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@pati

I went though 29 radiation and chemo on the last cancer the one they couldn't find .Good so far .I went to N.C Duke cancer center.Ilive in VA 4 hours away for both they are great.I had tongue cancer before this last one.I tell you I have never had pain like that they cut out a piece of my tongue and reconstructed it.Killed all my nerves and taste buds.Every 4 months the pain comes back and hurts just as much as when they cut it out.I deal with itbut there is so much pain I try anything to help it but I am alive and happy for every day I have.The tumor they can't find the said they could not have any more radition they gave me the strongest they had.They could give me chemo if it comes back.I decided that I will not do chemo.I would rather pass away than let them put that poison in me and still die.

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Thank you for your post and I'm sorry you had to go through that many radiations and that surgery is brutal. You almost open my eyes and make me realize that my husband would have been suffering...I guess I always thought if we took a different course of action, he would be alive and things would be normal again... But they wouldn't be. You tell me how you are in constant pain all the time and I really feel for you. I'll pray you start to feel some kind of relief. Cancer sucks...it really does. Take care of yourself.

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@megm

Hi @alisa4, thank you so much for sharing your experience. I am so sorry that you had to go through that. Great advice and so important to get second opinions and understand the risks and benefits of all of the treatment options. Thinking of you!

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Thank you so much. I think the scare tactics of surgeons and thinking of dying, makes anyone go through surgery, whether it's the right thing or not.

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Same thing for me my sweety wanted to try berry thing he was a fighter. I couldn't tell him no even though I felt it was a waste of time and the suffering was horrible

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@pati

I am sorry I had that to with surgery I know the pain he went through.He had to be strong to deal with the pain.Now I have a tumor behind my tongue they can't find. You must be a very strong women and am praying for you to heal. I had to boys die at 18 and 24 I questioned why for years and there is no answer.I stopped questioning my cancers too.I just try to be positive not stress and take care of myself. I want you remember that you will never get over it but with time you can heal as long as you talk about him he was here.talk about good memeries.You will find people don't want hear it thinks it hurts you but he was in your live and always will be.don't cry just laugh at all the crazy things you did together.It really works I still talk about my boys with pride.Never forget he wants you happy and misses you too and you had his love and not many people have someone to be there for you.he was blessed. I am single at age 67 and no family they have passed on.I hope this helped if not sorry I put my 2 cents in.

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Pati, I have to start by saying I'm am so sorry
To hear of your children's passing, let alone what you've had to endure. Did they die of cancer as well? That scares me because they said my husbands cancer was a freak thing since he didn't drink or smoke, so o am holding out hope it's not genetic and passed on to my kids. Thank you for writing me because your kind words made me cry a little bit I found it so nice that your words were uplifting when you are going through a bad time with your cancer. Try to find a support group since you said you don't have much family, just so you have people in common to lift you up. You're in my prayers and thanks for writing.

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@widow2soon

Same thing for me my sweety wanted to try berry thing he was a fighter. I couldn't tell him no even though I felt it was a waste of time and the suffering was horrible

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Awww Im so sorry. It's been ten years for me now but lately, I just break out crying like something overwhelms me. Why now? They said it never gets easier but I thought the coping part is supposed to.

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You will find that crying is a good thing at times because you miss him that's normal. I still cry and miss my boys on there birthdays and holidays not every year because I try to stay busy on those days.I try to plan ahead of time.My best friend lost her son too.We will always have that heart ache.It has been 30 years for me.My first son died in a plan crash.I had no closer because I never got a body and for 10 years I had no closer he was 18 for two weeks and just finished high school and I will never know what he would grow what he would do or have grandkids.My 24 year old at least I had to see what he what he was an adult.He was stabbed in the heart in Dallas TX..Your heart will feel it always but you must find happiness because he is your angel now and is watching over you and will always will be.He wants you to be happy don't disappoint him be strong an go on with your life live it to the fullest .He will always be with you mine are and I talk to them. Once I got a message from him and said to him Jim do you still break out when you shave he told me" no mom I am prefect now" and the Bible say's they are.I never knew the Bible said that but a friend told me that.You should find a book on grief .I did and it was great.there are stages you go though is true first you hate God ( I never did nt do that) but I hated him for leaving me alone and there or other things but best of all I Knew he loved me and I was blessed to know that and made me stronger. They both loved me so much .I was a lucky person to have there love.He was put on this world to teach us things God puts us here to teach and he was Gods child and they are loaned to us and takes them back because of many reasons Maybe his work was done. They are only loaned to us to us.,
We all die at some point and you are here for a reason and he want's you to live your life.Try to find a book. I found one called the bergiefed parent and parent and it made so understand so much..You should never try to ask why .There is no answer. I feel for you very much and hope you get better.

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