Husband Has Voicebox Cancer

A friend just introduced me to this wonderful website. I am overwhelmed right now and sick with worry. My husband was diagnosed with voicebox cancer on April 4. He started radiation therapy on April 11 and tomorrow will be his 20th session with 13 more to go. The radiation oncologist really didn't give us many details about this process, but I remember him saying after week 5, he will have a very sore throat--like it is sunburned and the effects will last about one month after the final treatment (which is May 25). After reading many of your posts and hearing from my friend, I am frightened. It sounds as though almost everyone ends up with a feeding tube which was never discussed with my husband. I asked the nurse on my husband's first day of treament about whether he will need one and she said that she didn't think so since this area was not really "typical head and neck cancer"--the area of treament is at the bottom of his voicebox (sorry, I don't recall the precise medical term at this moment). So far, he seems to be doing fairly well--he gets quite tired and it is difficult to swallow, but he is eating soft foods (eggs, yogurt, pudding, oatmeal, soups) and drinking Ensure. He has lost 8 pounds so far. His spirits are pretty good too, although there have been moments of depression. I know that he is not aware of how bad the road ahead is, and I really don't want to tell him because "every patient is different."

I will be grateful for any advice from those who have experienced this type of cancer. We were told that it is not the "aggressive type" of cancer and will not spread to his lymph nodes and there is a 90% cure rate. Sorry if I ask stupid questions, but is the level/intensity of radiation the same for everyone? It seems as though the number of treatments is fairly consistent (6-1/2 weeks). I want to be prepared for the worst, so please be as candid as you can be comfortably. Thank you!

Comments

  • denistd
    denistd Member Posts: 597
    Voice box
    Hi rocco, I had voice box cancer (cancer of the larynx) in 2009. I had 35 radiation treatments and 3 chemo (cisplatin) treatments. You did not mention whether your husband is having the chemo and what type of cancer it is (mine was Squamus Cell carcinoma) SCC. Yes, the treatment can be brutal but it is worth it. I had a peg tube which was more in use at the end of treatment and a couple of weeks after treatment ended. It was a blessing. The outside of my neck never got burned ( I kept it well creamed and moisturized)If your husband did not have chemo then I am not much help, as my side effects were more from the Cistplatin than the radiation. I had IMRT radiation with the last 10 blasts being more tumor specific, that's when it got rough. I got my voice back and two years later am more or less my old self except for my teeth (which is another whole story). hang in, he will be fine. Denis
  • RoccoVN
    RoccoVN Member Posts: 5
    denistd said:

    Voice box
    Hi rocco, I had voice box cancer (cancer of the larynx) in 2009. I had 35 radiation treatments and 3 chemo (cisplatin) treatments. You did not mention whether your husband is having the chemo and what type of cancer it is (mine was Squamus Cell carcinoma) SCC. Yes, the treatment can be brutal but it is worth it. I had a peg tube which was more in use at the end of treatment and a couple of weeks after treatment ended. It was a blessing. The outside of my neck never got burned ( I kept it well creamed and moisturized)If your husband did not have chemo then I am not much help, as my side effects were more from the Cistplatin than the radiation. I had IMRT radiation with the last 10 blasts being more tumor specific, that's when it got rough. I got my voice back and two years later am more or less my old self except for my teeth (which is another whole story). hang in, he will be fine. Denis

    Thank You Denis
    Your quick reply is awesome--thank you! Fortunately, he is not having chemo. I will look at his biopsy report when I get home tonight to reply what type of cancer it is. I just remember seeing the word "carcinoma," but can't recall what else. This is all so new to us, and the medical terminology still so foreign. Interesting that you should mention about getting your voice back. This journey started with my husband having a hoarse voice for over a year. Went to two different ENT doctors who diagnosed it as vocal cord paralysis--a harmless, but frustrating, situation. Thank God that the third ENT doctor who he saw early this year wasn't convinced about that diagnosis and did a more in depth examination and took a biopsy of two lesions on his vocal cord which turned out to be malignant. He literally is down to a whisper now and we know that his voice will never be the same but we're ok with that. Just want to get rid of the cancer and recover!

    Thanks again,
    Sandie (Rocco's wife)
  • Hondo
    Hondo Member Posts: 6,636 Member
    RoccoVN said:

    Thank You Denis
    Your quick reply is awesome--thank you! Fortunately, he is not having chemo. I will look at his biopsy report when I get home tonight to reply what type of cancer it is. I just remember seeing the word "carcinoma," but can't recall what else. This is all so new to us, and the medical terminology still so foreign. Interesting that you should mention about getting your voice back. This journey started with my husband having a hoarse voice for over a year. Went to two different ENT doctors who diagnosed it as vocal cord paralysis--a harmless, but frustrating, situation. Thank God that the third ENT doctor who he saw early this year wasn't convinced about that diagnosis and did a more in depth examination and took a biopsy of two lesions on his vocal cord which turned out to be malignant. He literally is down to a whisper now and we know that his voice will never be the same but we're ok with that. Just want to get rid of the cancer and recover!

    Thanks again,
    Sandie (Rocco's wife)

    Hi Sandie

    I am NPC so can help with voice box cancer, but I would like to welcome you here to our Family here on CSN.

    All the best to the both of you
    Hondo
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    RoccoVN said:

    Thank You Denis
    Your quick reply is awesome--thank you! Fortunately, he is not having chemo. I will look at his biopsy report when I get home tonight to reply what type of cancer it is. I just remember seeing the word "carcinoma," but can't recall what else. This is all so new to us, and the medical terminology still so foreign. Interesting that you should mention about getting your voice back. This journey started with my husband having a hoarse voice for over a year. Went to two different ENT doctors who diagnosed it as vocal cord paralysis--a harmless, but frustrating, situation. Thank God that the third ENT doctor who he saw early this year wasn't convinced about that diagnosis and did a more in depth examination and took a biopsy of two lesions on his vocal cord which turned out to be malignant. He literally is down to a whisper now and we know that his voice will never be the same but we're ok with that. Just want to get rid of the cancer and recover!

    Thanks again,
    Sandie (Rocco's wife)

    Whisper
    Sandie,

    I did not have voice box cancer, mine was base of tongue. I had radiation only and actually, your husband is doing fairly good at this point in time. His voice is just a whisper currently and will remain that way for the next several weeks. As Denis mentioned, your husband will still feel the full effects of the radiation as the treatments accumulate and it may be 4-8 weeks after the final treatment before he starts to feel better.

    My voice was only a whisper during treatment and started to get back to normal around the 6 month mark. Friends and family finally started to mention I sounded like my old self around a year out of Treatment.

    My Best to Both of You and Everyone Here
  • Glenna M
    Glenna M Member Posts: 1,576
    Laryngeal cancer
    Hi Rocco, sorry to hear that your husband has this horrible disease but wanted to reassure you that it is treatable.

    I was diagnosed in May of '09 with NSCLC Adenocarcinoma in my left lung and then diagnosed with Squamous Cell Carcinoma Supraglottic cancer of the larynx. Supraglottic, I believe, is the upper part of the larynx. They discover this cancer after the PET scan. I was experiencing ear pain, throat pain and had almost completely lost my voice. The larynx cancer was staged at T3N0M0 which meant stage 3 with no node involvement.

    I received cisplatin and 35 radiation treatments and I think I'm one of the lucky ones because I had no pain in my throat when swallowing. After the first session of chemo and a couple of rad treatments my voice came back perfectly. I had the feeding tube before I started treatment but I think part of the reason they insisted on this is because I am a very tiny person who could not afford to lose any weight. During the entire treatment and recovery I still lost 22 pounds but have managed to regain 7 pounds. I used the tube after about 3 or 4 weeks of rads but it wasn't because I couldn't swallow it was because everything tasted so horrible that I couldn't stand to eat anything. I never had any problems with swallowing or any pain so I continued to drink water and Ensure Plus by mouth.

    We all react differently to treatment and our side effects vary greatly so please don't be too discouraged yet. Your husband may be one of the lucky ones like me. I almost feel guilty sometimes when I read about the pain others endured. I think the worst part for me was the nausea which was from the chemo not the rads, and the fatigue. I did a lot of sleeping during treatment.

    I hope this information helps you and your husband and that you will come back often to let us know how you both are doing. We can help you with advice and encouragement and answer any new questions you may have.

    Stay strong,
    Glenna
  • Glenna M
    Glenna M Member Posts: 1,576
    Laryngeal cancer...
    Sorry, double post :(
  • RoccoVN
    RoccoVN Member Posts: 5
    Glenna M said:

    Laryngeal cancer
    Hi Rocco, sorry to hear that your husband has this horrible disease but wanted to reassure you that it is treatable.

    I was diagnosed in May of '09 with NSCLC Adenocarcinoma in my left lung and then diagnosed with Squamous Cell Carcinoma Supraglottic cancer of the larynx. Supraglottic, I believe, is the upper part of the larynx. They discover this cancer after the PET scan. I was experiencing ear pain, throat pain and had almost completely lost my voice. The larynx cancer was staged at T3N0M0 which meant stage 3 with no node involvement.

    I received cisplatin and 35 radiation treatments and I think I'm one of the lucky ones because I had no pain in my throat when swallowing. After the first session of chemo and a couple of rad treatments my voice came back perfectly. I had the feeding tube before I started treatment but I think part of the reason they insisted on this is because I am a very tiny person who could not afford to lose any weight. During the entire treatment and recovery I still lost 22 pounds but have managed to regain 7 pounds. I used the tube after about 3 or 4 weeks of rads but it wasn't because I couldn't swallow it was because everything tasted so horrible that I couldn't stand to eat anything. I never had any problems with swallowing or any pain so I continued to drink water and Ensure Plus by mouth.

    We all react differently to treatment and our side effects vary greatly so please don't be too discouraged yet. Your husband may be one of the lucky ones like me. I almost feel guilty sometimes when I read about the pain others endured. I think the worst part for me was the nausea which was from the chemo not the rads, and the fatigue. I did a lot of sleeping during treatment.

    I hope this information helps you and your husband and that you will come back often to let us know how you both are doing. We can help you with advice and encouragement and answer any new questions you may have.

    Stay strong,
    Glenna

    Thank You All For Responding
    This is a very supportive network of strong and caring individuals! Thank you for your helpful information and words of encouragement. I'm looking at my husband's pathology report which indicates a "well-differentiated squamous cell carcinoma of the larynx, glottis.". Today marks day 20 of his rad treatments...13 to go! We'll take it one day at a time, and I look forward to interacting with this wonderful network of special people. Thank you and God bless you all.

    Sandie
  • denistd
    denistd Member Posts: 597
    Glenna M said:

    Laryngeal cancer...
    Sorry, double post :(

    laryngeal cancer
    Okay, SCC, thats the normal type and is very manageable. Glottis just means the are around the voice box (epiglottis area), I too was stage three, very early stage three. I would ask the onco why no chemo. Also, is there any HPV involvement? back in 1995 I had a benign tumor removed from my false vocal cord, it turned out to be a inverted papiloma, so no question my cancer was HPV related, I did also smoke and feel that was the biggest contributor. ENT said my voice would probably remain MIA but rad onc was right when he said it will come back. God bless and keep us informed. Denis
  • ToBeGolden
    ToBeGolden Member Posts: 695
    Getting Thru Voice Box Cancer
    I had a cancerous tumor on one of my vocal cords. It was treated with about 30 sessions of radiation, but no chemo. I did not need a feeding tube, and lost a negligible 3 pounds. I would try to get through the treatment without a feeding tube; but would not refuse a feeding tube if it were needed.

    MY TRICK: I ate every four hours. I used an oral short-acting narcotic, not the patch, for pain. (I am not recommending this.) After each dose of the pain medicine kicked in, I would eat / drink water for about an hour. THEN FOR THREE HOURS I WOULD NOT EVEN SWALLOW. I spit into a tissue. I found that when I did not swallow, there was almost no pain. The three-hours of being almost pain free, gave me the break so that I could stand the painful hour when I ate.

    END OF TREATMENT: The last two or three weeks of treatment, and the first two or three weeks post treatment are the worst. They are much worse than the rest of the treatment period. Sorry to say. So your husband needs all of his pain-reduction gimmicks worked out.

    In the painful part of the treatment, it took more than 30 minutes to eat just a carton of yogurt. One swallow, and I would need a minute or two to face the pain again. I ate every four hours around the clock, and set an alarm to wake me during the night.

    One hour of pain; three hours pain free. That was life for six weeks.

    POST TREATMENT: I am left with a hole in a vocal cord. The most amazing thing is that the radiation blasted the tumor away. They got the tumor and very little else. To speak, I need to take deep breaths and push out lots of air while I talk. It is the same technique used by (opera/Broadway) singers. Speaking with a poor technique (which is constricting the neck muscles to compensate for not using enough air) actually irritates the throat. I'm not very good at proper speech techniques, so I can't give real good advice. But in my simple way of thinking it is: take a deep breath every time he speaks, and speak in short phrases, and don't get too excited.

    MY VOICE TODAY: People standing 5 feet away have no trouble understanding me. But I cannot call to someone across the street. And I can't get the intensity in my voice to make my dog (the pictured Golden Retriever) to take me seriously.

    Finally, your husband's ordeal will be history before either of you know. From what my wife told me about the last trimester of a pregnancy, it will be a time that will seem like it will never end. But it does end. And the body does return to almost, but not exactly, normal.
  • RoccoVN
    RoccoVN Member Posts: 5

    Getting Thru Voice Box Cancer
    I had a cancerous tumor on one of my vocal cords. It was treated with about 30 sessions of radiation, but no chemo. I did not need a feeding tube, and lost a negligible 3 pounds. I would try to get through the treatment without a feeding tube; but would not refuse a feeding tube if it were needed.

    MY TRICK: I ate every four hours. I used an oral short-acting narcotic, not the patch, for pain. (I am not recommending this.) After each dose of the pain medicine kicked in, I would eat / drink water for about an hour. THEN FOR THREE HOURS I WOULD NOT EVEN SWALLOW. I spit into a tissue. I found that when I did not swallow, there was almost no pain. The three-hours of being almost pain free, gave me the break so that I could stand the painful hour when I ate.

    END OF TREATMENT: The last two or three weeks of treatment, and the first two or three weeks post treatment are the worst. They are much worse than the rest of the treatment period. Sorry to say. So your husband needs all of his pain-reduction gimmicks worked out.

    In the painful part of the treatment, it took more than 30 minutes to eat just a carton of yogurt. One swallow, and I would need a minute or two to face the pain again. I ate every four hours around the clock, and set an alarm to wake me during the night.

    One hour of pain; three hours pain free. That was life for six weeks.

    POST TREATMENT: I am left with a hole in a vocal cord. The most amazing thing is that the radiation blasted the tumor away. They got the tumor and very little else. To speak, I need to take deep breaths and push out lots of air while I talk. It is the same technique used by (opera/Broadway) singers. Speaking with a poor technique (which is constricting the neck muscles to compensate for not using enough air) actually irritates the throat. I'm not very good at proper speech techniques, so I can't give real good advice. But in my simple way of thinking it is: take a deep breath every time he speaks, and speak in short phrases, and don't get too excited.

    MY VOICE TODAY: People standing 5 feet away have no trouble understanding me. But I cannot call to someone across the street. And I can't get the intensity in my voice to make my dog (the pictured Golden Retriever) to take me seriously.

    Finally, your husband's ordeal will be history before either of you know. From what my wife told me about the last trimester of a pregnancy, it will be a time that will seem like it will never end. But it does end. And the body does return to almost, but not exactly, normal.

    Golden Advice
    Thank you for the incredibly helpful information! I realize that the worst is yet to come and your advice about eating during that time is good to know. If you don't mind me asking, what type of oral, short-acting narcotic did you take? Rocco has been prescribed both Hydrocodone/Bitartrate/Aceteminophen Oral Solution and Lidocaine/Diphenis/Maalox. He has been taking the first one about 30 minutes before he eats.

    Your post is encouraging, especially the last part. And, I know what you mean about your dog taking you seriously (he or she is beautiful, by the way): we have a Rhodesian Ridgeback which has selective listening at times. :-)

    Lastly, were you able to stay somewhat active during this time? By active, I really just mean normal routines like getting up, personal grooming, driving to appointments, etc. versus being bedridden? Sorry if I'm asking too many questions, but I want to be prepared..

    Thanks Again,

    Sandie
  • ToBeGolden
    ToBeGolden Member Posts: 695
    RoccoVN said:

    Golden Advice
    Thank you for the incredibly helpful information! I realize that the worst is yet to come and your advice about eating during that time is good to know. If you don't mind me asking, what type of oral, short-acting narcotic did you take? Rocco has been prescribed both Hydrocodone/Bitartrate/Aceteminophen Oral Solution and Lidocaine/Diphenis/Maalox. He has been taking the first one about 30 minutes before he eats.

    Your post is encouraging, especially the last part. And, I know what you mean about your dog taking you seriously (he or she is beautiful, by the way): we have a Rhodesian Ridgeback which has selective listening at times. :-)

    Lastly, were you able to stay somewhat active during this time? By active, I really just mean normal routines like getting up, personal grooming, driving to appointments, etc. versus being bedridden? Sorry if I'm asking too many questions, but I want to be prepared..

    Thanks Again,

    Sandie

    Staying Active?
    Sorry that it took so long to reply.

    I was not employed at the time of the radiation, and still have not found a job. The radiation actually took most of the day. The medical center is a good hour away. When we reached the hospital, I walked our dog for about 20 minutes. Being mindful of Seattle traffic, we always arrived about an hour before the scheduled treatment. I was changed and in the waiting room about a half hour early. After treatment, I sat in the waiting room and talked with other patients for maybe another twenty minutes. It actually helped me to be with other patients for a short time. But everyone is different, and I can't say whether your husband may want to get away from the hospital as fast as possible.

    Now my wife couldn't come into the radiation waiting room with me. She either stayed in the car or went to a Starbucks adjoining the hospital. One funny thing happened. President Obama was in Seattle on one of the days I was receiving radiation. A small private sea plane violated the no-fly zone and fighters were scrambled from Portland Oregon. The sonic booms sounded like explosions, and I wondered for a moment if there was an attack in the city center, about 3 miles from the hospital. Of course, the real cause was soon on the radio. Just relating this as a bit of humor.

    I believe I took Hydrocodone/Bitartrate/Aceteminophen, like your husband. I also took it 30 minutes before eating. Then I ate and drank for close to an hour. Then I did not swallow at all for almost 3 hours; I spit into a tissue. Strange: I have a type of arthritis called ankylosing spondylitis, and I am always in some minor pain. When I was taking the Hydrocodone and not swallowing, I was quite pain free for one of the few times in my life.

    On the way home, we stopped at a park where most dogs go leash-free. I walked Peanut for about 45 minutes. Like me, she is quite arthritic, and doesn't travel fast. She does a lot of rolling on the ground.

    Today, I went to a "Career Fair" at a local community college. So I was talking for about two hours in a very noisy room. THIS WAS A BAD THING TO DO. My voice is much worse tonight, than usual. I think it will recover.

    About Peanut and my voice: Yes dogs do have selective hearing. But I was always able to sound angry enough to stop her in her tracks... Like from running into a road. Now I can't depend upon my voice anymore, which means that I have to stay much more proactive and spot trouble for her. We often meet the school bus, and about five boys and girls will stop and pet her.

    Your husband may be at the stage where some of the patients he met early on and was encouraging him may have finished their treatment. And it is not close enough to the end for him to feel the finish line. I remembered how my wife sounded when she was 8 months pregnant. "This baby is never coming out." Well, I really felt that way. I did get a little emotional lift during the last week, when there were only 4 more treatments.

    I can't remember the day exactly, but it went something like this:
    6:00 Up, Meds, Eat.
    7:00 Go Back to Sleep.
    10:00 Up, Meds, Eat.
    11:00 Shower Dress
    12:00 Leave for Hospital.
    13:00 Arrive (if traffic is normal) walk dog.
    14:00 Radiation Treatment
    14:30 Meds, Eat, Leave Hospital.
    15:00 Stop at Ravina Park and walk dog again
    15:30 Head for home, pick up groceries if needed.
    14:30 Home
    18:00 Meds, Eat
    19:00 TV or Computer.
    22:00 Meds, Eat, Sleep
    02:00 Meds Eat Sleep (Yes I set an alarm)
    Then it was 6 am once again. I set an alarm for 6 and 10 am.

    I ate and drank water 8 times a day. One hour for each of the 8 times. So I ate and drank for 8 hours every day, and did not swallow at all for 16 hours. I lost a total of 3 pounds (because I started dieting near the end.) I actually gained about 7 pounds during the radiation treatment, quite unheard of. But I am one weird guy.

    I think I might be providing too much detail.
  • RoccoVN
    RoccoVN Member Posts: 5

    Staying Active?
    Sorry that it took so long to reply.

    I was not employed at the time of the radiation, and still have not found a job. The radiation actually took most of the day. The medical center is a good hour away. When we reached the hospital, I walked our dog for about 20 minutes. Being mindful of Seattle traffic, we always arrived about an hour before the scheduled treatment. I was changed and in the waiting room about a half hour early. After treatment, I sat in the waiting room and talked with other patients for maybe another twenty minutes. It actually helped me to be with other patients for a short time. But everyone is different, and I can't say whether your husband may want to get away from the hospital as fast as possible.

    Now my wife couldn't come into the radiation waiting room with me. She either stayed in the car or went to a Starbucks adjoining the hospital. One funny thing happened. President Obama was in Seattle on one of the days I was receiving radiation. A small private sea plane violated the no-fly zone and fighters were scrambled from Portland Oregon. The sonic booms sounded like explosions, and I wondered for a moment if there was an attack in the city center, about 3 miles from the hospital. Of course, the real cause was soon on the radio. Just relating this as a bit of humor.

    I believe I took Hydrocodone/Bitartrate/Aceteminophen, like your husband. I also took it 30 minutes before eating. Then I ate and drank for close to an hour. Then I did not swallow at all for almost 3 hours; I spit into a tissue. Strange: I have a type of arthritis called ankylosing spondylitis, and I am always in some minor pain. When I was taking the Hydrocodone and not swallowing, I was quite pain free for one of the few times in my life.

    On the way home, we stopped at a park where most dogs go leash-free. I walked Peanut for about 45 minutes. Like me, she is quite arthritic, and doesn't travel fast. She does a lot of rolling on the ground.

    Today, I went to a "Career Fair" at a local community college. So I was talking for about two hours in a very noisy room. THIS WAS A BAD THING TO DO. My voice is much worse tonight, than usual. I think it will recover.

    About Peanut and my voice: Yes dogs do have selective hearing. But I was always able to sound angry enough to stop her in her tracks... Like from running into a road. Now I can't depend upon my voice anymore, which means that I have to stay much more proactive and spot trouble for her. We often meet the school bus, and about five boys and girls will stop and pet her.

    Your husband may be at the stage where some of the patients he met early on and was encouraging him may have finished their treatment. And it is not close enough to the end for him to feel the finish line. I remembered how my wife sounded when she was 8 months pregnant. "This baby is never coming out." Well, I really felt that way. I did get a little emotional lift during the last week, when there were only 4 more treatments.

    I can't remember the day exactly, but it went something like this:
    6:00 Up, Meds, Eat.
    7:00 Go Back to Sleep.
    10:00 Up, Meds, Eat.
    11:00 Shower Dress
    12:00 Leave for Hospital.
    13:00 Arrive (if traffic is normal) walk dog.
    14:00 Radiation Treatment
    14:30 Meds, Eat, Leave Hospital.
    15:00 Stop at Ravina Park and walk dog again
    15:30 Head for home, pick up groceries if needed.
    14:30 Home
    18:00 Meds, Eat
    19:00 TV or Computer.
    22:00 Meds, Eat, Sleep
    02:00 Meds Eat Sleep (Yes I set an alarm)
    Then it was 6 am once again. I set an alarm for 6 and 10 am.

    I ate and drank water 8 times a day. One hour for each of the 8 times. So I ate and drank for 8 hours every day, and did not swallow at all for 16 hours. I lost a total of 3 pounds (because I started dieting near the end.) I actually gained about 7 pounds during the radiation treatment, quite unheard of. But I am one weird guy.

    I think I might be providing too much detail.

    Seven More to Go
    Thank you, Golden, for the helpful post. Not too much detail at all! Today marks rad treatment #26 with 7 more to go. Rocco is doing relatively well. I was dreading week #5 as that seems to be when most folks said they started feeling the worst. He is definitely more tired and the skin redder, but he still has an appetite and, while it is definitely difficult to swallow and to drink water, he continues to do so. We also started on Glutamine on Saturday. For those who use this supplement, how much do you use? I've read that 30 grams is the target amount for recovery.

    Thanks again for your replies...and any other advice will be most welcome, too!

    Sandie