New to site vocal cord cancer and partial laryngectomy Help

rks814
rks814 Member Posts: 2
in Head and Neck Cancer #1




My husband was diagnosed 8 yrs ago with left vocal cord cancer he had 8 weeks of Radiation and 6 weeks of Chemo. He faithfully followe up with his ENT all of those years and was considered cured. About a year ago his voice start going out on him we thought it might be his job he's constantly talking on the radio in a loud voice due to noise. He went back to his ENT who did a scope and couldnt find anything and reffered him to gastro for testing to see if his reflux was causing the problem that test came back clear and the Dr. noted radiation burns on his left vocal cord and some swelling by this time he had almost absolutely no voice so there was no possibility for him to work backto his ENT e went who became frustrated scoped again didn't see anything and took him off work for a week. He advised speech therapy. Didn't work back to ENT to get another note for work and see our options he refused the note was a total **** and finally referered us to a Head and Neck Surgeon at UCI who scoped then biopsied and found the tumor had come back. Imediately scheduled for surgery to remove tumor we were adamant no larengectomy etc. What was supposed to be a 2 hour surgery turned into a 5 hour surgery and the Dr. ended up doing a partil laregectomy. They admitted my husband for a 24 hr post op hold which turned into a nightmare. The Dr. wasn't availble because he had left for vacation. My poor husband had the worst post-op care to numerous to mention. We went back for follow up and his comment was that he tried to get it all but would now have to do a total larengectomy and told us partial details about it we had already read about it and my husband had decided he did not absolutely want it done. Well the Dr. proceds to tell us about getting schduled. We said no we were going for a 2nd opinion. Unfortunately he gave us the name of a Dr. at City of Hope that he knew who again said he had no options. We asked what grade it was and her comment was what does it matter it needs to be taken out. We said NO again and now I am at a loss as to how to reseach ideas for conservative or follow up treatment without my husband having the larengectomy. Reading the op report and path report my gut tells me theres another choice. Any ideas or suggestions out there? Please. Sorry this is so long.




Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Your husband

    There is another site that deals mainly with laryngeal cancer and that is webwhispers.org.  Not many on this site have been thru this type of cancer.  My husband fought it for 5 years but lost his battle.  He went thru radiation and chemo first and we were told he was NED but he wasn't.  Swelling from the radiation covered up the tumor and only when he started having major trouble with breathing did they do a second biopsy and a trach.  He was then referred to a head and neck specialist who was great.  He then underwent a complete laryngectomy.  He did great and was going to have a TEP inserted a year later when they found a second primary at the cervical of his esophagus which is a rare spot.  Surgery was ruled out, tumor was small, so he underwent a second round of radiation in basically the same spot as the first and chemo.  This only kept him NED for about 6 months when the cancer was back and spread to his lungs.  He then said no more he had been thru enough and really nothing was offered but chemo.  Surgery was ruled out due to several factors,  spread to his lungs and the fact that he had had radiation in basically the same spot twice.  The tumor was very large this time and the ones in his lungs were small but many.   We were also told that the chemo would only buy him time and possibly hasten his death.

    I would get another opinion.  Your husband can learn to talk again there are several ways and if given the choice I would go for the surgery but only with a highly recommended hospital and head and neck specialist.  My husband's surgeon is at Winship Cancer Center in Atlanta, GA.  I have never met a more caring surgeon and the hospital staff at Emory were great.  He was in the hospital for 5 days after his surgery. 

    Wishing you peace and comfort

  • georgiasurfer
    georgiasurfer Member Posts: 63 Member
    #3
    Ladylacy said:

    Your husband

    There is another site that deals mainly with laryngeal cancer and that is webwhispers.org.  Not many on this site have been thru this type of cancer.  My husband fought it for 5 years but lost his battle.  He went thru radiation and chemo first and we were told he was NED but he wasn't.  Swelling from the radiation covered up the tumor and only when he started having major trouble with breathing did they do a second biopsy and a trach.  He was then referred to a head and neck specialist who was great.  He then underwent a complete laryngectomy.  He did great and was going to have a TEP inserted a year later when they found a second primary at the cervical of his esophagus which is a rare spot.  Surgery was ruled out, tumor was small, so he underwent a second round of radiation in basically the same spot as the first and chemo.  This only kept him NED for about 6 months when the cancer was back and spread to his lungs.  He then said no more he had been thru enough and really nothing was offered but chemo.  Surgery was ruled out due to several factors,  spread to his lungs and the fact that he had had radiation in basically the same spot twice.  The tumor was very large this time and the ones in his lungs were small but many.   We were also told that the chemo would only buy him time and possibly hasten his death.

    I would get another opinion.  Your husband can learn to talk again there are several ways and if given the choice I would go for the surgery but only with a highly recommended hospital and head and neck specialist.  My husband's surgeon is at Winship Cancer Center in Atlanta, GA.  I have never met a more caring surgeon and the hospital staff at Emory were great.  He was in the hospital for 5 days after his surgery. 

    Wishing you peace and comfort

    Who does your husband see at Emory?

    who does your husband see at Emory?  Mine saw Dr Wadsworth who was outstandin. Unfortunately he has recently left. We are searching for another surgeon to follow up with.  Thanks!

  • lornal
    lornal Member Posts: 428
    #4
    WebWhispers

    As Ladylacy said - visit the WebWhispers.org website.  Valuable information.  And very supportive folks. 

    There is life after a larnygectomy.  I had one almost 3 years ago.   The first surgeon I saw said he would make me comfortable. THe 2nd, said he could get it.

    I am loving life. 

    There is a gentleman whose name is Richard Crum who has been a laryngectomee for a couple decades or more.  He is an auctioneer.  He learned to speak esophageal speech - but now has a prothesis.  I have had the opportunity to hear him speek a couple of time - and hear is auctioneer voice.

    Lorna 2007 (tonsil) & 2014 (hypopharnx)

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #5
    georgiasurfer said:

    Who does your husband see at Emory?

    who does your husband see at Emory?  Mine saw Dr Wadsworth who was outstandin. Unfortunately he has recently left. We are searching for another surgeon to follow up with.  Thanks!

    Doctor at Emory

    Dr. Wadsworth was my husband's head and neck specialist.  One of the most best is all I can say about him.  I didn't know he left because my husband passed in late 2015.  But he saw Dr. Wadsworth until my husband decided he was not going to do any more treatments.  Dr. Wadsworth agreed with my husband and didn't try to talk him out of it. 

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #6
    Larygectomy

    One of my friends, her husband has been a larygectomee for over 45 years and has lived a good life.  Just wished mine could have lived that long but back when Jack was diagnosed I don't think they were doing much in the way of radiation and chemo. 

  • georgiasurfer
    georgiasurfer Member Posts: 63 Member
    #7
    Ladylacy said:

    Your husband

    There is another site that deals mainly with laryngeal cancer and that is webwhispers.org.  Not many on this site have been thru this type of cancer.  My husband fought it for 5 years but lost his battle.  He went thru radiation and chemo first and we were told he was NED but he wasn't.  Swelling from the radiation covered up the tumor and only when he started having major trouble with breathing did they do a second biopsy and a trach.  He was then referred to a head and neck specialist who was great.  He then underwent a complete laryngectomy.  He did great and was going to have a TEP inserted a year later when they found a second primary at the cervical of his esophagus which is a rare spot.  Surgery was ruled out, tumor was small, so he underwent a second round of radiation in basically the same spot as the first and chemo.  This only kept him NED for about 6 months when the cancer was back and spread to his lungs.  He then said no more he had been thru enough and really nothing was offered but chemo.  Surgery was ruled out due to several factors,  spread to his lungs and the fact that he had had radiation in basically the same spot twice.  The tumor was very large this time and the ones in his lungs were small but many.   We were also told that the chemo would only buy him time and possibly hasten his death.

    I would get another opinion.  Your husband can learn to talk again there are several ways and if given the choice I would go for the surgery but only with a highly recommended hospital and head and neck specialist.  My husband's surgeon is at Winship Cancer Center in Atlanta, GA.  I have never met a more caring surgeon and the hospital staff at Emory were great.  He was in the hospital for 5 days after his surgery. 

    Wishing you peace and comfort

    I'm so sorry

    Please forgive me. I read your post initially and then got side tracked before typing my question.  

    Dr. Wadsworth was and is excellent. We've been seeing him for a couple years due to recurrent displaysia. One of the life altering moments was when Doc came out of surgery and told me it was not expected displaysia but stage 4a. I've been scared everyday since.  Doc told us he was leaving at our post op visit. My heart sank.   I don't think I could survive without this site and warriors on here  

    I'm sorry you lost your husband.  Bless you!

  • wmc
    wmc Member Posts: 1,804
    #8
    Having the Laryngectomy saved my life.

    Your husband has gone through the Radiation and might have been given what is a full dose. There is only so much a body will take. Now I'm no doctor, but I was only given one choice to live. My lungs have severe Bullous emphysema and chronic bronchitis. Stage 3 COPD. I was told this was my only hope. I had the surgery Oct. 2013 and have been cancer free ever since. Having a full laryngectomy is a major change in life, but it is something you can live with. Much of what you might read is incorrect in that "they" say you can't do this and can't do that. I was told so many things that I can't do because I am a "Neck Breather". Ony one problem, I can do just about anything I want. So much so my doctor and SLP [Speech, Language, Pathologist] asked if I would make videos on YouTube so they could share them with new patients.

    AS Lornal said, you might want to look at WebWhispers.org  I put a link for you. I do recommend joining, but you can look through the library without joining. I understand his reluctance to having the surgery as it is for life. The key word here is Life. Yes, I have lost being able to really smell, but I still can detect many smells, and there is a way you can draw in air with your cheeks to smell. Me, I made a crazy device that lets me smell and blow my nose which they say you can't do. I can even blow my nose without any device. I also can whistle which I am told I can't do. You should have seen their faces when I blew up a Balloon, thought she was going to fall over. That was right after I was told it can't be done.  WebWhispers has their website and a forum as well [all free] I host the Forum and an Admin for the Facebook Group. We support worldwide throat cancer, Laryngectomee's and caregivers too. I will include a video for you, which is me talking [I have no vocal cords and removed my layrnx] and blowing up a balloon. We even have one member who had to also have all of his tongue removed and can not speak at all. He still works as a Cashier at Lowes.  Take a look at the website as we have over 1600 in our email list and 600 on the Facebook Group. IF you are interested in the facebook Group it is a Secret Group and it was done so you can be free to say what you need to and only members can see it. No one can even see who is a member. If it's something you might be interested in you can reach me on Facebook. Type in   william.cross.752  Send a friend request and also message saying you would like to join and I can take care of that. I don't get on this one like I use to. I keep so busy with the other so much with the Forum and their Facebook Group.  For me, having the laryngectomy has been a gift of life.
    I hope this will help answer some questions as to why they are recommending it.  Have him record his voice now. He may want it later to listen to, I do mine. 

    Bill  Oct 2013

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