Radiotherapy experiences after neck dissection - please share

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Hi my name is Don and on July 9th I had a direct laryngoscopy and biopsy with frozen section and a left neck dissection with tonsillectomy to remove a mass in my neck and search for a primary. I now have an important decision to make about continuing treatment with radiation. I would like to hear from anyone who has undergone the procedure I recently experienced, followed by 6 weeks of IMRT Radiation treatments, and no chemotherapy.

The modified left neck dissection entailed removing 11 lymph nodes 2 of which contained encapsulated malignancies (One large Level II/III (4.5cm), one Level III). Tonsils and submandibular gland were removed and biopsies were taken from the other high risk areas in the throat & neck in search of a primary. All biopsies were negative and the lymph nodes had clear margins with no extra capsular spread.

I am a 60 year old male, in otherwise good health, who has smoked and drank alcohol his entire adult life. I have reduced my alcohol consumption from 8-12 drinks per day over the last several years to about 5-6 drinks daily. I stopped smoking for two weeks following the surgery and currently I have reduced the number of cigarettes I smoke daily from 15-20 to less than 10.

The doctors are advising me to begin a 6 week radiation treatment plan. 90 seconds/dose 5 days per week. I’ve been told by the doctors that the side effects and recovery (4-6 weeks after treatments end) won’t be as bad as what I went through after my surgery on July 9th.

I asked the doctors what the chances of recurrence would be if I opted to not have the radiation therapy. Their estimates averaged to a 40% chance of recurrence if I opt to do nothing, and a 10% chance if I have the radiation over a six week period in the near future. They have also informed me that statistically 85% of recurrences happen within two years after treatment has been administered. I am not sure if continued smoking and drinking is figured into their statistics.

Please... I would like to hear from anyone who has been in the same general situation I’ve described including the description of myself. Who decided to undergo the radiation treatment as I’ve described it. My decision to proceed with radiation or not must be made soon.

Anyone who is willing to share how the overall experience and in particular the radiation treatment affected them would be most helpful.

Thank you in advance,

Don

Comments

  • ratface
    ratface Member Posts: 1,337 Member
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    I'm glad you are asking questions
    You write well and seem to be well informed having a grasp of procedures and statistics. You are also brutally honest about your drinking and smoking. I therefore must be honest in my perception of your situation as you would expect no less. You need go no further than this very page of forum threads to realize that this disease kills people with regularity. You have had advanced disease. Your tumor size was quite large. You had disease start making it's way down your lymphatic system. The primary hasn't been found yet? I'm going to say that again, "The primary hasn't been found yet" Let me say it one more time, "The primary hasn't been found yet".

    What are you afraid of with the radiation? Without it you will probably die. It's a life preserver that is being thrown at you. You don't have the luxury of waiting for another lifeline. Radiation will make you stop smoking and drinking. You have serious addictions to both behaviors. It's a certainty that it will eradicate those behaviors. You could not tailor make a better rehab program for yourself. You kill the cancer, and stop smoking and drinking. You need to assess what the real fear is that makes you ask these questions? I don't think it's fear of radiation. Radiation saved my life and is the answer you are looking for. Grab on to the rope Don and we will start pulling you in.
  • ljoy
    ljoy Member Posts: 94
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    Radiation Therapy
    You did not mention where you are being treated. I was 61 when diagnosed with tonsil cancer seven years ago. Had 39 radiation treatments, three rounds of Cisplatin and tonsil surgery. It is my understanding that the chemo makes the cancer more acceptable to the radiation. Thus the combination of the two make the treatment very successful. You difinitely need to continue with the treatment.

    The long term side effects are minimal compared to running the risk of your cancer returning.

    I had my original surgery and diagnosis at M.D. Anderson Cancer Center in Houston.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hi Don.....sorry you are about to join this club
    that nobody wants to join....but am glad you found this forum, as it has wonderful people who are full of knowledge...practical and medical...to help you get thru this and on to recovery.

    As Ratface said....radiation is a life preserver being tossed you way...and maybe in your case, in more than one way....it will stop cancer....but you will not want to drink or smoke during treatment, your throat and mouth won't be able to take it....way too painful.
    The way I see it, pain is a conduit to change....and this will make it easier for you. I haven't drank for many years, but when I did...it was all day, everyday....and it hasn't been that long (3 years)since I quit smoking, and to this day there are times when I'd LOVE a ciggie....

    Everybody's experience is the same, but subtlely different....Radiation starts out easy enough...you lose your taste buds usually pretty quickly, and the pain comes on slowly (this my case)....I never did get a sore throat, but my mouth was sore. My neck eventually became very burned on the outside, as well as the inside. I managed to eat all my food during rads, tho. Didn't need to use my feeding tube until rads were over, and I've been on this new chemo.

    You've come this far in treatment, in my mind rads for 30 treatments is very doable (I had 35, some folks had 37)...don't be afraid of what you're missing (cigs and booze)....you can always go back once you're done with treatment...at least the choice to do so will be there.

    p
  • hwt
    hwt Member Posts: 2,328 Member
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    Hi Don.....sorry you are about to join this club
    that nobody wants to join....but am glad you found this forum, as it has wonderful people who are full of knowledge...practical and medical...to help you get thru this and on to recovery.

    As Ratface said....radiation is a life preserver being tossed you way...and maybe in your case, in more than one way....it will stop cancer....but you will not want to drink or smoke during treatment, your throat and mouth won't be able to take it....way too painful.
    The way I see it, pain is a conduit to change....and this will make it easier for you. I haven't drank for many years, but when I did...it was all day, everyday....and it hasn't been that long (3 years)since I quit smoking, and to this day there are times when I'd LOVE a ciggie....

    Everybody's experience is the same, but subtlely different....Radiation starts out easy enough...you lose your taste buds usually pretty quickly, and the pain comes on slowly (this my case)....I never did get a sore throat, but my mouth was sore. My neck eventually became very burned on the outside, as well as the inside. I managed to eat all my food during rads, tho. Didn't need to use my feeding tube until rads were over, and I've been on this new chemo.

    You've come this far in treatment, in my mind rads for 30 treatments is very doable (I had 35, some folks had 37)...don't be afraid of what you're missing (cigs and booze)....you can always go back once you're done with treatment...at least the choice to do so will be there.

    p

    Why play the numbers game?
    Would not be honest if I said rads/chemo were a walk in the park. In fact, it was so bad that the last thing I thought about was having a cigarette. Now that I have been through it and came out the other side with "no evidence of disease", I don't have a single regret. Grab that life line while you have a chance. Six weeks is worth a chance at another 30 years.
    God Bless!
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    The Statistics
    Forgive me for saying: But you seem to be fixated on the numbers. I hate to say this, but in my experience oncologists are wildly optimistic. We've all heard "You'll feel a little pressure"; and knew that it would hurt like hell. Well:

    My oncologist told me that after treatment there would be a 10% chance for recurrence. When I looked up the statistics, here, at the American Cancer Society, the chance was 26%. However, in my particular case, the chance of recurrence turned out to be 100%. The tumor came back and eventually obstructed my airway. I had an urgent tracheostomy (reversible procedure) followed by a total laryngectomy (permanent), my vocal cords were removed. Even after this radical surgery, the tumor was not gone. I had radiation and chemo. Now I don't ask about the rate of recurrence; and my doctors don't tell me. I have not had a PET Scan (yet) since the end of chemo, and don't know if the tumor remains.

    So for me, the question is only what can I do to improve my chances for survival. And not only survival; but also how can I squeeze in the greatest number of good days.

    I am a sober alcoholic. Sober means that I've not had a drink in over twenty years. Alcohol ruined my first marriage, and it was on the way of ruining my second. So I stopped long before my cancer showed up. (And my marriage survives.) I never smoked; but I was raised in an environment polluted with second hand smoke.

    So you must ask yourself, what is a good day? Everybody has a different definition of a good day. If you need a drink to have a good day, then you know the route you must take. For me, however, any day that I would have had a drink would not have been a good day.

    If you were not facing literally a life and death decision, I would not be so brutal. Forgive me for my bluntness. Rick.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Hey Don
    No one here is trying to beat you up. Rather, above is an honest attempt to answer your questions. We all wish a long, event-free life for you. Having said that, I can answer one of your musings. The survival percentages you were given are wildly optimistic if you continue to smoke and drink. Particularly smoke. The smoking confers a second primary rate of about 5percent PER YEAR.

    i had my first squamous cancer in 1998., treated with radiation and a radical neck disection. Stopped smoking on the spot, never to smoke another cigarette again. I also havent had alcohol since then. Got my second primary in 2010' and a recurrance after radical surgery less than a year after that. Finished my chemotherapy and second radiation in the spring.

    I agree with the posters above that your chances are extremely high you will die without radiation. I dont think your chances of cure with just what has been done to this point are very good at all. Many who drink excessively and smoke do not quit when they are confronted with the reality of a cancer like ours. In those people, even if they kid themselves onto thinking they resume these behaviors by choice, the addiction simply overpowers them.

    We all know, deep down, that we cant just cut back.

    Wishing you the best.


    Pat
  • bjw1955
    bjw1955 Member Posts: 67
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    Don you have come to the

    Don you have come to the right place for answers about cancer.I to was a smoker and had quite before I found out that I had Laryngeal cancer in other words my ENT dr found a golf ball size tumor on my voice box in 1-11. I had 38 rads and 6 chemo on 2-2-11 I collapsed at home and couldn't breath, I was rushed to the er the tumor was blocking my airway and the ent dr had to put a trach in so I could breath and I still have it and still cancer free, and thankful to be alive. I'm a little confused with what your wanting to know.do you still want to drink and smoke or do you want to live, when you start rads you won't want to drink or smoke because your mouth and neck will be to raw . I wish you the best.bjw1955
  • CajunEagle
    CajunEagle Member Posts: 408
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    bjw1955 said:

    Don you have come to the

    Don you have come to the right place for answers about cancer.I to was a smoker and had quite before I found out that I had Laryngeal cancer in other words my ENT dr found a golf ball size tumor on my voice box in 1-11. I had 38 rads and 6 chemo on 2-2-11 I collapsed at home and couldn't breath, I was rushed to the er the tumor was blocking my airway and the ent dr had to put a trach in so I could breath and I still have it and still cancer free, and thankful to be alive. I'm a little confused with what your wanting to know.do you still want to drink and smoke or do you want to live, when you start rads you won't want to drink or smoke because your mouth and neck will be to raw . I wish you the best.bjw1955

    Exactly
    I see the choices as being fairly clear. Go through treatment and let them throw the kitchen sink at you, or continue without treatment and no changes in behavior to keep oneself alive. I was 61 when I started my treatment for stage IV SCC (35 rads..6 rounds of Cisplatin) three years ago, and I should be the last person on Earth to tell anyone to refrain from smoking and drinking. Seems that everytime I get the urge, I totally remember the sounds of the mask being snapped down, my face in the red bucket by the bed or commode 6-7 times a day for months, and the gunk on my neck around the pain patches, and I concur what bjw said above "do you want to drink and smoke or do you want to live?".

    Larry
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    radiation vs alcohol vs cigs vs surgery only
    Hi donfh,

    Sounds like the doctors were pretty successful with your surgery and you are fairly successful with the reduction of alcohol and cigarette consumption and the reality of the cancer and the radiation are screwing with you current lifestyle. Well welcome to the club and bend over because we all got s_ _ _ _ _ in this chapter of our life’s. I chose the path which hopefully leads to life now and hospice much later. It isn’t an easy path, but I am playing the odds in my favor. There is a nice group of people (here) reading and responding to every question cancer can throw at you. If you ask, they will gladly help you traverse this maze.

    Best,

    Matt
  • Vikeman10
    Vikeman10 Member Posts: 62
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    CivilMatt said:

    radiation vs alcohol vs cigs vs surgery only
    Hi donfh,

    Sounds like the doctors were pretty successful with your surgery and you are fairly successful with the reduction of alcohol and cigarette consumption and the reality of the cancer and the radiation are screwing with you current lifestyle. Well welcome to the club and bend over because we all got s_ _ _ _ _ in this chapter of our life’s. I chose the path which hopefully leads to life now and hospice much later. It isn’t an easy path, but I am playing the odds in my favor. There is a nice group of people (here) reading and responding to every question cancer can throw at you. If you ask, they will gladly help you traverse this maze.

    Best,

    Matt

    Don glad the surgery was
    Don glad the surgery was successful and hope you make the right choice. I have been through surgery, rad and chemo back in 1978. I just had laser debulking followed by 35 rads and 8 weeks Erbitux. I know it is tough to go through, but worth not playing against the percents.

    Randy
  • amy_h414
    amy_h414 Member Posts: 98
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    rads
    I can't comment on the neck dissection part of the question because my husband did not have surgery. He did have 35 rads and 6 chemos (cisplatin). He did ok until the 7th week of treatment when the effects hit him pretty hard. But he made it through and you will too if you choose to do it. After radiation ended he started to feel better about 10 days out and is doing amazing now at 5 weeks out. He's eating regular food full time now and gets the PEG out tomorrow. Taste is not great yet, but it's improving.

    Of course everyone is different and is affected differently, but I don't think you should let a fear of effects stop you from doing the radiation. Yes some people have a terrible time with radiation, we've got quite a few here on this board, but there are also people like my husband who do not have such hard time with it. Is it hard? Yes! No question! But it's also doable. Radiation offers you a better chance at long term survival.
  • hwt
    hwt Member Posts: 2,328 Member
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    amy_h414 said:

    rads
    I can't comment on the neck dissection part of the question because my husband did not have surgery. He did have 35 rads and 6 chemos (cisplatin). He did ok until the 7th week of treatment when the effects hit him pretty hard. But he made it through and you will too if you choose to do it. After radiation ended he started to feel better about 10 days out and is doing amazing now at 5 weeks out. He's eating regular food full time now and gets the PEG out tomorrow. Taste is not great yet, but it's improving.

    Of course everyone is different and is affected differently, but I don't think you should let a fear of effects stop you from doing the radiation. Yes some people have a terrible time with radiation, we've got quite a few here on this board, but there are also people like my husband who do not have such hard time with it. Is it hard? Yes! No question! But it's also doable. Radiation offers you a better chance at long term survival.

    To answer your question
    To answer your question about how rads are, I can only speak for myself. I am a 61 year old female. They affect each of us differently, you will get some side effects but not likely all. Personally, the worst for me was sores on my lips, really bad ones. They are very generous with medications. If you opt for radiation stay ahead of pain with the meds. I never got nauseated. Had no energy. During the worst of it, I pretty much relied on pain pills and slept soundly day & night. Got the energy back 6 weeks after tx. During tx I questioned, more than once, if I had made the right choice with rads. If I had chosen quality I could have been in Nassau on the beach. Now that it is behind me, I hope to have the opportunity to make many trips. It is a difficult choice and I am sorry you have to make it. I do agree with P51, once free of the beast you can always make the choice to smoke and drink. I was so miserable during tx I did not think much about smoking.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    hwt said:

    To answer your question
    To answer your question about how rads are, I can only speak for myself. I am a 61 year old female. They affect each of us differently, you will get some side effects but not likely all. Personally, the worst for me was sores on my lips, really bad ones. They are very generous with medications. If you opt for radiation stay ahead of pain with the meds. I never got nauseated. Had no energy. During the worst of it, I pretty much relied on pain pills and slept soundly day & night. Got the energy back 6 weeks after tx. During tx I questioned, more than once, if I had made the right choice with rads. If I had chosen quality I could have been in Nassau on the beach. Now that it is behind me, I hope to have the opportunity to make many trips. It is a difficult choice and I am sorry you have to make it. I do agree with P51, once free of the beast you can always make the choice to smoke and drink. I was so miserable during tx I did not think much about smoking.

    Hi Don ...
    Sounds to me like you want to hear how those of us who had radiation did with it, what it did to us and such ...so that you can decide if you want to make that choice. Is that correct? If so, I share my story.

    I was stage III base of tongue / diagnosed October 21, 2011, biopsy November 11, 2011 and began radiation treatments November 21, 2011. Rads were to be for 36 session Mon-Friday. I also recieved a drug called Erbitux (I did not have the traditonal platinum drugs or surugery) for 6 sessions, but only made 5.

    If you look at the picture of my neck under expressions you can see what my neck looked liek towards the end of treatments. It was terribly painful. If I could show you picture of my Erbitux reaction to my skin...it looked pretty bad too.

    Towards the end of rads we had to stop and go a couple of times due to my neck being so bad...so 7 weeks turned into 9 weeks, but I got them all in.

    The worst part came after rads. The pain the mucous the inability to taste or swallow (and remember, any of this I share may not be you bc we all respond differently)...but you continue to cook, as they say, for weeks after your last rad. I had two brutal months after rads..then suddenly things started to get better.

    I started off with a feeding tube placed in my stomach before I even began rads....so glad I did as I lot 70lbs in treatments (and I am a guy who loves food). Now I am a total of 85lbs less 6 months out from my last radiation.

    So now you konw it may be the same for you, could also be worse or much better. There are plenty of us on here who swing in all directions on that.

    I admire you stance to weigh your options. Either you are very brave of life or very afraid of rads:)

    I had no choice but to take the rads and I am glad I did. I am now 6 months out and I have a few side affects (constricted throat, but I can eat, jut have to take smaller bites and chew really well) ..off all pain meds, no spasms, I do have pains that come and go in my uvula region...but all my scopes by the ENT and Oncologist keep coming back "good" they say

    The reason I say I had no choice is I had five of the most beautiful faces (my five kids) looking at me around the dinner table the night we told them "dad" had stage III cancer. They had just last year lost Uncle Dennis (my brother) and Pa (my dad) to a brain tumor and Leukemia ....and when my sons Raylan 2, Jace 5, West 8, Kohle 11 and daughter Georgia 13, asked me with fear and trembling voices would I die too like Uncle Dennis and Pa ...I told them "just watch" ..."just watch me fight" ..."and if I die I will die a father who is proud of the best children a dad can have and I will die a husband who never had a better wife, your mother. But our fight will include prayer to the Lord asking for His help, and our fight will mean we all pull togehter to make this happen and help take care of mom while I am off fighting" Then we all took our first shot and I said a prayer with my family!!

    So though you did not ask for advice, just informatoin ...but if I may (since you are now part of the family even you don't want to be) ...I say fight too. Fight to get the best treatments and take them. Fight to give up smoking and drinking to give yourslef the best chance of wining. I can't imagine there is not someone in your life that would not want to see you around for some time to come ...and healthier.

    The one thing about the treatments as someone said above...they "can" be the best rehab around. Worst case scenario you end up on this board years from now talking on and on and on about your experience (that was meant to be a joke).

    Whispered a prayer for you Don that you make the best decision for you. May sound "hoakie" but now you are a fellow warrior and family member and we'd like to see you stick around. :)

    Best,

    Tim
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    Tim6003 said:

    Hi Don ...
    Sounds to me like you want to hear how those of us who had radiation did with it, what it did to us and such ...so that you can decide if you want to make that choice. Is that correct? If so, I share my story.

    I was stage III base of tongue / diagnosed October 21, 2011, biopsy November 11, 2011 and began radiation treatments November 21, 2011. Rads were to be for 36 session Mon-Friday. I also recieved a drug called Erbitux (I did not have the traditonal platinum drugs or surugery) for 6 sessions, but only made 5.

    If you look at the picture of my neck under expressions you can see what my neck looked liek towards the end of treatments. It was terribly painful. If I could show you picture of my Erbitux reaction to my skin...it looked pretty bad too.

    Towards the end of rads we had to stop and go a couple of times due to my neck being so bad...so 7 weeks turned into 9 weeks, but I got them all in.

    The worst part came after rads. The pain the mucous the inability to taste or swallow (and remember, any of this I share may not be you bc we all respond differently)...but you continue to cook, as they say, for weeks after your last rad. I had two brutal months after rads..then suddenly things started to get better.

    I started off with a feeding tube placed in my stomach before I even began rads....so glad I did as I lot 70lbs in treatments (and I am a guy who loves food). Now I am a total of 85lbs less 6 months out from my last radiation.

    So now you konw it may be the same for you, could also be worse or much better. There are plenty of us on here who swing in all directions on that.

    I admire you stance to weigh your options. Either you are very brave of life or very afraid of rads:)

    I had no choice but to take the rads and I am glad I did. I am now 6 months out and I have a few side affects (constricted throat, but I can eat, jut have to take smaller bites and chew really well) ..off all pain meds, no spasms, I do have pains that come and go in my uvula region...but all my scopes by the ENT and Oncologist keep coming back "good" they say

    The reason I say I had no choice is I had five of the most beautiful faces (my five kids) looking at me around the dinner table the night we told them "dad" had stage III cancer. They had just last year lost Uncle Dennis (my brother) and Pa (my dad) to a brain tumor and Leukemia ....and when my sons Raylan 2, Jace 5, West 8, Kohle 11 and daughter Georgia 13, asked me with fear and trembling voices would I die too like Uncle Dennis and Pa ...I told them "just watch" ..."just watch me fight" ..."and if I die I will die a father who is proud of the best children a dad can have and I will die a husband who never had a better wife, your mother. But our fight will include prayer to the Lord asking for His help, and our fight will mean we all pull togehter to make this happen and help take care of mom while I am off fighting" Then we all took our first shot and I said a prayer with my family!!

    So though you did not ask for advice, just informatoin ...but if I may (since you are now part of the family even you don't want to be) ...I say fight too. Fight to get the best treatments and take them. Fight to give up smoking and drinking to give yourslef the best chance of wining. I can't imagine there is not someone in your life that would not want to see you around for some time to come ...and healthier.

    The one thing about the treatments as someone said above...they "can" be the best rehab around. Worst case scenario you end up on this board years from now talking on and on and on about your experience (that was meant to be a joke).

    Whispered a prayer for you Don that you make the best decision for you. May sound "hoakie" but now you are a fellow warrior and family member and we'd like to see you stick around. :)

    Best,

    Tim

    Don
    Most likely that your Drs are advising based on your best chances to get the C gone for good, or as long as possible. Concurrent rads and chemo is the worst of it, though getting only rads will still be no walk in the park.

    My Drs were like most- attack the C as aggressively as the patient can tolerate with the regiment and specific C plan customized for the singular case. That = overkill of the C. I was also unknown Primary, and they put me thru a more intense regiment than anyone else I'm aware of, though shorter in duration, and with ultimately less chemo drugs than many get now over the total treatment. So, yes, they did a C overkill thing on me, and I'm now 3 1/4+-years out and clean. I did not have a dissection Op.

    One thing you may want to factor into this is the reality that the body tissue, nerves, etc., can take just so much of the rads before damage becomes a factor that prohibits more rads to those areas. You might wanna wait awhile to let your body heal a little more from the surgery- maybe. Standard, Don, is to go with what the Drs advise, as they are the Drs, and know the specifics of your C better than I, or anyone else on this board.

    Hope and Pray for the best for you,

    kcass