IMRT for 82 yr. old Mom

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JanANem
JanANem Member Posts: 12
in Head and Neck Cancer #1

My Mom has been diagnosed with scc oral cancer (after finding some red sores in the back of her mouth where her back teeth use to be) biopsy and ct scan determined it was Stage 0.  Surgeon wants to do the fibular flap surgery, Rad oncologist wants her to get 30 treatments of IMRT.  He feels certain this will get rid of the cancer and no surgery will be needed.  She is 82 years old, has flatly refused the surgery or chemo (surgery 10-12 hrs., may need to reconstruct her jawbone) She doesn't want to go through the surgery at her age and I am supporting her in this decision. 

She is considering the IMRT.  The radiologist is insisting there will be minimal side effects. no need for a feeding tube and the salivery glands will have minimal damage.  Piece of cake, huh?

I understand that a surgeon will recommend surgery, a Rad doctor will go for the radiation, an MO the chemo etc etc.  What I don't understand is how can these doctors emphasize such minor side effects, especially for an 82 year old, who is underweight from Celiacs disease and a light smoker?  She is otherwise in good health...Heart, BP, Lungs, Bloodwork etc. all came back good when she had her pre testing for surgery.  Even using IMRT, which, as I have read, does offer less side effects...I wish they would be more forthcoming and stop sugarcosting everything.  She has an important decision to make and I would like them to be more upfront concerning her future quality of life should she have the 30 treatments.

Anyone out there who has had the IMRT and older, or know someone...I sure would be thankful for any advice.  I don't know what to do or say to her regarding this decision.  She is having trouble deciding, going back and forth and is getting depressed and anxious over the whole thing.  It is getting harder to get her to her appointments.  Whatever she decides, to get the IMRT or do nothing, I will support her.  Has anyone heard of cancer advancing slower in the elderly?  Thanks so much for any feedback. 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
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    i'm very sorry your mom is

    i'm very sorry your mom is going thru this.  i had 35 rad tx 8/09 for larynx cancer, i was 53. my neck got pretty burned and i was tired.  i also lost a lot of hair.  i still have swallowing problems to this day.  my throat has been stretched several times and there will be more in the future.  i have to cut all pills in half no matter how small they are or they get stuck.  i have to chew each bite of food until it is complete mush or it won't go down.  other than that i am fine.  those side effects are definitely managable.  i pray God will bless your mother and help her make her decision.  praying for you also.  i'm sure it will be hard on you whatever she decides.

    God bless,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
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    which way to go?

    Jan,

    They just do not know for sure which side effects she will get.

    My worst side effect was neck burn, it was easily the worst pain of my treatment, but I also had silver sulfadiazine cream and all was well.  Many H&N patients do not get neck burn.

    Tough decisions ahead, I wish you well.

    Matt

  • JanANem
    JanANem Member Posts: 12
    #4
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    debbiejeanne said:

    i'm very sorry your mom is

    i'm very sorry your mom is going thru this.  i had 35 rad tx 8/09 for larynx cancer, i was 53. my neck got pretty burned and i was tired.  i also lost a lot of hair.  i still have swallowing problems to this day.  my throat has been stretched several times and there will be more in the future.  i have to cut all pills in half no matter how small they are or they get stuck.  i have to chew each bite of food until it is complete mush or it won't go down.  other than that i am fine.  those side effects are definitely managable.  i pray God will bless your mother and help her make her decision.  praying for you also.  i'm sure it will be hard on you whatever she decides.

    God bless,

    dj

    Ty...

    Thanks for responding to my post.  I hope you continue to mend and get rid of all the side effects for good!  Can I ask...was that IMRT you had or the traditional radiation treatment?  I just keep hearing the IMRT has less side effects but am doubtful that is true.  I wonder if I am being negative or realistic...I suppose it really is different with everyone.

  • JanANem
    JanANem Member Posts: 12
    #5
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    CivilMatt said:

    which way to go?

    Jan,

    They just do not know for sure which side effects she will get.

    My worst side effect was neck burn, it was easily the worst pain of my treatment, but I also had silver sulfadiazine cream and all was well.  Many H&N patients do not get neck burn.

    Tough decisions ahead, I wish you well.

    Matt

    Matt...

    Thanks...Yes, I think you are correct.  They really don't know.  Just would actually be better to hear that instead of making it seem like a walk in the park.  Nice to know your own side effects were limited...How many treatments did you get?  Best of luck to you...Sounds like you are doing good.

  • corleone
    corleone Member Posts: 312 Member
    #6
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    It depends on the radiation dosage

    I had 70Gy (35 days over 7 weeks) for my Nasopharyngeal Carcinoma. I guess that in her case, the dose might be lower, hence less side effects. Maybe ~60, which would make a huge difference. But if the total dose will be around 70, there is no picnic.

  • JanANem
    JanANem Member Posts: 12
    #7
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    corleone said:

    It depends on the radiation dosage

    I had 70Gy (35 days over 7 weeks) for my Nasopharyngeal Carcinoma. I guess that in her case, the dose might be lower, hence less side effects. Maybe ~60, which would make a huge difference. But if the total dose will be around 70, there is no picnic.

    Dosage

    Yes, that makes sense.  I am not sure of the dosage but thanks for letting me know this.  I will add it to the growing list of questions I have for the radiologist.  Best regards....

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #8
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    Radiation

    My husband was 73 when he underwent his first round of radiation for laryngeal cancer.  Radiation closed off the back of his throat, something no one knew until he underwent surgery for removal of his larynx and thus they had to reconstruct his throat due to the radiation.  Our doctors insisted on a feeding tube before radiation started saying that if not needed it was easy to remove and better to have one before rather than during.  Second round of radiation at age 75 in basically the same spot.  Once again closed off the back of his throat but specialist was able to open it without any problem.  When the second primary reoccurred and spread my husband declined all further treatment that was January 2013 preferring quality over quantity.  He is doing fair, but still here, something none of us expected as his second primary is rare.

    The best thing is to allow your mother to do what she wants to do.  Each person is different in how they react to treatment.  Our doctors were surprised at how well my husband did with the radiation and even the surgery.  But radiation on the head and neck we were told going in was very hard on the individual, in fact, we were told it was the hardest of any of the cancers for radiation.

    Chemo is hard and surgery too and harder on an individual the older we get.

    Wishing you and your mother the best -- Sharon

  • JanANem
    JanANem Member Posts: 12
    #9
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    Ladylacy said:

    Radiation

    My husband was 73 when he underwent his first round of radiation for laryngeal cancer.  Radiation closed off the back of his throat, something no one knew until he underwent surgery for removal of his larynx and thus they had to reconstruct his throat due to the radiation.  Our doctors insisted on a feeding tube before radiation started saying that if not needed it was easy to remove and better to have one before rather than during.  Second round of radiation at age 75 in basically the same spot.  Once again closed off the back of his throat but specialist was able to open it without any problem.  When the second primary reoccurred and spread my husband declined all further treatment that was January 2013 preferring quality over quantity.  He is doing fair, but still here, something none of us expected as his second primary is rare.

    The best thing is to allow your mother to do what she wants to do.  Each person is different in how they react to treatment.  Our doctors were surprised at how well my husband did with the radiation and even the surgery.  But radiation on the head and neck we were told going in was very hard on the individual, in fact, we were told it was the hardest of any of the cancers for radiation.

    Chemo is hard and surgery too and harder on an individual the older we get.

    Wishing you and your mother the best -- Sharon

    Thanks Sharon...

    For sharing your story.  I definitely think my mom is thinking quality of life over quantity.  And I hope to give her all the support I can during this time.   My only trouble is that it is so hard seeing how difficult this is for her to make the decision.  But it is hers to make...

    All the best to you and your husband.

     

  • PJ47
    PJ47 Member Posts: 376
    #10
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    JanANem said:

    Thanks Sharon...

    For sharing your story.  I definitely think my mom is thinking quality of life over quantity.  And I hope to give her all the support I can during this time.   My only trouble is that it is so hard seeing how difficult this is for her to make the decision.  But it is hers to make...

    All the best to you and your husband.

     

    Hi Sharon

    In your Mother's case, I would expect the biggest concern with radiation treatment would be dehydration and nutrition.  If she is underweight to begin with that would be a worry.  It is not a walk in the park.  I had 60 GYs (lowered due to prior surgery), and still had no appetite.  I could swallow but eating and drinking was a real chore and I had to force myself to meet my calorie goal of 2000.  I did loose weight but I had some reserve.  I had awful painful mouth sores, mucous, and neck burns the last week and for 2 weeks after.  I still am trying to gain weight 5 mos. later and it is not happening.  

    So sorry you are having to watch your mother struggle with this decision.  Enjoy your time with her doing as many things that you two enjoy while you can and have celebrate her on Mother's Day,

    PJ

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #11
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    Observation

    over the years i have observed a huge difference in 30 treatments vs the 35-38-40, seems like the worst of the worst heppens after the 30 and well into the 2-3 weeks post radiation. so the good thought is it would only be 30. 

    if your only doing radition it sure seems to be somewhat easier than the additon of chemo with radiation. 

    IMRT is wonderful compared to the pervious just broad radiation that i had. IMRT will pinpoint the cancer and area and finds a way thru CT mapping to lesson the damage to some of the import things like vocal cords for only one example. 

    Non of the options are good options and when they are combined they get magnified. 

    from my view and learned experience over the years IMRT radiation of 30 treatments, would be the direction i would pick with what little i know of  your mothers cancer. 

    what ever route you and or she picks, ask for a regiment of IV fliuds jut to keep you hydration up. if you ask for it they can give it to you before your radition, take you to treatment and then unhook the fluids. i would suggest getting them on monday, wednesdays and fridays. the weekends are considered recovery days so she would be good until monday. 

    i hope this helps, happy mothers day to your mom and so sad she and the family must go thru this. 

    john 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #12
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    JanANem said:

    Ty...

    Thanks for responding to my post.  I hope you continue to mend and get rid of all the side effects for good!  Can I ask...was that IMRT you had or the traditional radiation treatment?  I just keep hearing the IMRT has less side effects but am doubtful that is true.  I wonder if I am being negative or realistic...I suppose it really is different with everyone.

    i had IMRT, 200 cGy per

    i had IMRT, 200 cGy per fraction.  i don't understand that but that is what is written on the rad order.  I hope this helps you.  I definitely do NOT think you are being negative trying to find out all you can, I think you're being PROactive!  I'd want to be that way for my mom too!  keep up the good work.

    dj

  • JanANem
    JanANem Member Posts: 12
    #13
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    fisrpotpe said:

    Observation

    over the years i have observed a huge difference in 30 treatments vs the 35-38-40, seems like the worst of the worst heppens after the 30 and well into the 2-3 weeks post radiation. so the good thought is it would only be 30. 

    if your only doing radition it sure seems to be somewhat easier than the additon of chemo with radiation. 

    IMRT is wonderful compared to the pervious just broad radiation that i had. IMRT will pinpoint the cancer and area and finds a way thru CT mapping to lesson the damage to some of the import things like vocal cords for only one example. 

    Non of the options are good options and when they are combined they get magnified. 

    from my view and learned experience over the years IMRT radiation of 30 treatments, would be the direction i would pick with what little i know of  your mothers cancer. 

    what ever route you and or she picks, ask for a regiment of IV fliuds jut to keep you hydration up. if you ask for it they can give it to you before your radition, take you to treatment and then unhook the fluids. i would suggest getting them on monday, wednesdays and fridays. the weekends are considered recovery days so she would be good until monday. 

    i hope this helps, happy mothers day to your mom and so sad she and the family must go thru this. 

    john 

    No Go...

    My Mom is refusing all treatment options.  I wanted to thank everyone for there advice and sharing their experiences.  I got some very useful information and was so hoping my Mom would go ahead with the IMRT.  I was going to discuss the IV options with the rad doctor...I thought that was a great suggestion...as well as other things.  But I guess I just need to honor her wishes, support her decision and be there for her ..

    I really am not sure what to do at this point other then try to get a referral for a palliative care doctor when the time comes. 

    Thank you all again...I wish everyone the very best. 

     

      Jan

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #14
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    JanANem said:

    No Go...

    My Mom is refusing all treatment options.  I wanted to thank everyone for there advice and sharing their experiences.  I got some very useful information and was so hoping my Mom would go ahead with the IMRT.  I was going to discuss the IV options with the rad doctor...I thought that was a great suggestion...as well as other things.  But I guess I just need to honor her wishes, support her decision and be there for her ..

    I really am not sure what to do at this point other then try to get a referral for a palliative care doctor when the time comes. 

    Thank you all again...I wish everyone the very best. 

     

      Jan

    Jan, all you can do at this

    Jan, all you can do at this point is love your mom and be there with her.  i hope your mother is able to enjoy all the time she has time and that you both will make many precious memories.  God bless you both.

    dj

  • JanANem
    JanANem Member Posts: 12
    #15
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    debbiejeanne said:

    Jan, all you can do at this

    Jan, all you can do at this point is love your mom and be there with her.  i hope your mother is able to enjoy all the time she has time and that you both will make many precious memories.  God bless you both.

    dj

    TY

    Thank you dj...I hope I can do that but am afraid.   I don't want her to have any regrets for declining treatment.  She doesn't seem to want to talk about it anymore and it is becoming an issue now if I bring it up so I guess I need to stop mentioning it and concentrate on making her time as enjoyable as I can.

    Take care and may God bless you also. 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #16
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    JanANem said:

    TY

    Thank you dj...I hope I can do that but am afraid.   I don't want her to have any regrets for declining treatment.  She doesn't seem to want to talk about it anymore and it is becoming an issue now if I bring it up so I guess I need to stop mentioning it and concentrate on making her time as enjoyable as I can.

    Take care and may God bless you also. 

    jan, please feel free to come

    jan, please feel free to come here any time you want to talk or just need to express what you are feeling.  we will be here for you.

    God bless you,

    dj

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