Need Advice for Elderly Mother

accordiongirl
accordiongirl Member Posts: 63
in Head and Neck Cancer #1

Hello all.  i'm searching for information/advice/experience/thoughts as i look for ways to help my mother with her diagnosis.  She is 83 yrs old and was told 2 weeks ago that she has throat cancer.  We do not yet know if it's spread.  We do know that she is not a surgical candidate.  It has been recommended that she have radiation 5X's a week for 7 weeks.  Prior to starting radiation, the dentist is recommending that she have all of her teeth pulled (she has an upper plate, so we're talking the lower teeth, which serve her fine, but aren't in good enough shape to stay if she opts for radiation).

Mom is waiting to find out if the cancer has spread before committing to getting the teeth taken out.  She's stated that if she has cancer other places, then she probably doesn't want treatment and therefore, she wouldn't need to lose her teeth.  i know she's very concerned/scared/apprehensive about the side effects of radiation.  And with no teeth to start with, she is also concerned about her ability to eat.

Mom raises a good point in her concern about even doing treatment, but i worry that NOT doing something will be a tough road for her, too.  Currently, she cannot breathe out of her nose - and hasn't been able to since June.  It's the symptom that sent her to the doctor in the first place.  They initially treated her for a sinus infection and things went from there before they finally found the cancer.  (We did get some information on how hospice might support her in her symptoms if she chooses that route.)

i guess i'm trying to find out from folks who've "been there, done that" what mom might realistically be facing in terms of side effects.  She's been told to expect burns on her skin, a loss of salivary glands, raw and painful throat that would prevent swallowing, fatigue, and probably some i'm forgetting.  They've also said it's likely she'll need a feeding tube.

Our question is......is this all worth it for her at her age?  She's got some other health issues and to be honest, i don't know how much "fight" she has in her.  My dad died 7 yrs ago and i think mom would be quite content with the idea that she could soon be with him.  i know she's reluctant to go through the pain of treatment.  If she DID go through it, could she expect to have relief from the side effects and, at some point, be able to taste and swallow again?

i know that lots of these questions are pretty specific to her situation, so if anyone can share their own experiences, that would be helpful.  i'm especially interested in folks of mom's age and how radiation treatment has gone for them.  Maybe she WOULD be better off forgoing treatment and spending the time she has being able to eat and swallow.......

Thank you so much for any help you can provide. 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    accordiongirl,

    Welcome to the H&N forum, where we seek out what we need.

    You are asking the good, common questions, but I do not know how you Mom will fare from treatments.  I say “YES” you want her to live for many more years, you want her to be able to taste her food and enjoy life to its fullest, but there is this 5  times a week for 7 weeks for her rad treatments which may or may not throw the proverbial wrench in the best laid plans.

    To not go through any treatment has easily defined consequences once the cancer is analyzed.  Who knows, she may live a long time with this cancer.

    It is very hard to know what to do? I am back to eating anything I want and I enjoy food immensely/  I have to drink lots of fluids, but things are ok.

    I did have two PEG tube. The first was a very bad one which brought me to tears when I tried to use it.  The second one was wonderful and it worked flawlessly (why didn’t they put that one in first?).  Looking back, I always drank one of my meals each day, so technically I probably could have made it through without the PEG at all.

    83 does not sound very old, I want your Mom to shoot for her 90’s.

    You have some tough things to think about or should I say your Mom.

    Bye,

    Matt

     

  • bugsyboy
    bugsyboy Member Posts: 39
    edited September 2018 #3
    I Would Not Seek Treatment

    accordiongirl,

    If I were 83 years old, I would not seek treatment.  The teeth pulling, being bolted to a table, pain meds, Magic Mouthwash, feeding tube, skin burns, mucus, mental and physical fatigue... the list goes on.  Treatment for Head & Neck Cancer brings you to the gates of Hell.  Those of us on these Boards have made it through, but I was 54 when I went through treatment, not 83.  

    This is my opinion, not necessarily the majority's.  I'm curious what some of our members who went through treatment at an older age would say.

    If your mom decides to have the treatments, please make sure she gets the feeding tube before beginning treatment.  Keeping up her caloric intake is crucial to having strength to make it through.

    Best of luck with whatever you decide.

    Bugsy

  • accordiongirl
    accordiongirl Member Posts: 63
    #4
    Thank you for the input

    Thank you for your thoughtful responses.  i am quite confident that this brutal treatment will be more than my mom can take.  She is not in great health to begin with - she has diabetes and congestive heart failure.  She also struggles with mobility and often claims that she can't do things so that someone else will do them for her (when i know for certain that she CAN do them, she just doesn't want to.)  That speaks to the amount of "fight" she has.....which, honestly, i don't think is very much.  She SAYS she wants to start treatment if the PET scan shows no spread of cancer, but i honestly don't think she understands what "getting treatment" really means.  i certainly don't want to talk her into or out of anything, but i DO want her to have all the facts and think it through.  Tonight we tried to discuss her options with her, but she really wasn't interested in participating in the conversation, so that didn't go anywhere.  If it were ME - if i were in my mom's shoes - i would NOT do treatment.  It sounds horrific at ANY age, but especially so at age 83, and with other health issues, to boot.

    Thank you SO much for your time and your honesty.  i think anyone who endures this treatment is amazing, strong, courageous, and brave beyond brave.

    It would be interesting to hear from someone mom's age who has gone through this - at her age, not younger.  i think having those personal stories might help mom understand what she's up against.  It sure is a different ballgame between someone in their 50's vs someone in their 80's.

  • caregiver wife
    caregiver wife Member Posts: 234
    edited September 2018 #5
    Older when diagnosed

    Husband was in mid 60's when first diagnosed, after having had open heart surgery and diabetes.  They did a less aggressive treatment than they would have for a younger person.  He went into remission for about 6 years.  He was in his severnties when he had a recurrence with mets to lungs, liver, etc.  Was on a less aggressive treatment to hold cancer at bay for about 18 months before he went into remission again.  That was about 1 1/2 years ago.  He has been on a feeding tube for about 8 years now.  He tolerated treatment fairly well with very little complaint, staying active throughout.  That being said, I do not believe he could have done it without help on a daily basis.

    Every case is very different and treatment must be planned for that specific person.  

    A very dear friend of mine in her eighties has been getting aggressive treatment for advanced breast cancer for the past three years and doing very well.

    Your mother sounds like she is considering her options, pending the additional information to make a final decision.  I would expect the amount of "fight" she will have will be a factor in that final decision.  

    Whatever the decision is, there will be medical assistance to help her (and her family) through her personal journey.  

    Best wishes for the both of you,

    Crystal

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #6
    Accordiangirl Your Mom

    Needs to sit down and consider and think about this seriously and fully and try to realize what she will have to do and deal with. She shouldn't take this lightly it is a serious treatment and journey. I start with that statement because of you saying your mother did not want to participate in the discussion of treatment. She needs to realize the seriousness of the situation. Sounds like she will need her remaining teeth pulled, get a feeding tube, and they will have to make a mask formed to her head which they fasten your head to the radiation machine by attaching this mask to the radiation table so your head is in the same position for every treatment and does not move during treatment. Your head is clamped in place. I had throat when I was 58 cancer and I still remember the radiation docs nurse sitting down with us to go over treatment and one of the first things she said was I might as well face it the treatment and recovery will take a year of your life. She was about right on with that statement. Till I started treatment in 2013 January 1 and went through 35 radiation treatments and 3 chemos I was feeling really bad. Finished treatment sometime in May and it took me the rest of the year to feel pretty good again. I was lucky I think it was October I was able to get the feeding tube out since I had been eating enough for 2 weeks to sustain my weight. But take that into consideration she will probably have to depend on a feeding tube. I had to grind pills and mix with water to take them. You can get cheap little pill grinders at the Pharmacy no problem. My throat was swelled shut for 5 to 6 months and I could not swallow anything all my intake was through the tube. This treatment really beat me up I know for awhile I just wanted to mostly sit around in the chair and sleep other than getting up and getting food and meds in when I had to. One time my parotid gland got infected and I had a high fever and spent 5 days in the hospital on heavy duty antibiotics. Just to let you know other things can happen during this treatment. I had a bout of diarrhea for an evening and a bit of a fever with it. This is a tough treatment with the possibility of a few surprises or issues popping up during the process. I wouldn't want to make any decisions for you just trying to help. Wait till you have all your options. As someone said in a previous post maybe they can give her a less arduous treatment. She could also start and if it gets to be too hard on her she may have to quit the treatment. She might need a good bit of help to get through this at her age make sure to have this covered with family, visiting nurses, etc. This is tough treatment and she has to prepare herself mentally for a tough treatment. There is a lot involved here I would have a consult with her regular family physician also to get their input on the situation and any other docs she has such as heart doc etc. Good luck and God Bless whatever you decision is-I tried to help here but can't cover everything if you have any  questions please let me know sorry this is so long of a response-Russ

     

  • accordiongirl
    accordiongirl Member Posts: 63
    edited September 2018 #7
    wbcgaruss said:

    Accordiangirl Your Mom

    Needs to sit down and consider and think about this seriously and fully and try to realize what she will have to do and deal with. She shouldn't take this lightly it is a serious treatment and journey. I start with that statement because of you saying your mother did not want to participate in the discussion of treatment. She needs to realize the seriousness of the situation. Sounds like she will need her remaining teeth pulled, get a feeding tube, and they will have to make a mask formed to her head which they fasten your head to the radiation machine by attaching this mask to the radiation table so your head is in the same position for every treatment and does not move during treatment. Your head is clamped in place. I had throat when I was 58 cancer and I still remember the radiation docs nurse sitting down with us to go over treatment and one of the first things she said was I might as well face it the treatment and recovery will take a year of your life. She was about right on with that statement. Till I started treatment in 2013 January 1 and went through 35 radiation treatments and 3 chemos I was feeling really bad. Finished treatment sometime in May and it took me the rest of the year to feel pretty good again. I was lucky I think it was October I was able to get the feeding tube out since I had been eating enough for 2 weeks to sustain my weight. But take that into consideration she will probably have to depend on a feeding tube. I had to grind pills and mix with water to take them. You can get cheap little pill grinders at the Pharmacy no problem. My throat was swelled shut for 5 to 6 months and I could not swallow anything all my intake was through the tube. This treatment really beat me up I know for awhile I just wanted to mostly sit around in the chair and sleep other than getting up and getting food and meds in when I had to. One time my parotid gland got infected and I had a high fever and spent 5 days in the hospital on heavy duty antibiotics. Just to let you know other things can happen during this treatment. I had a bout of diarrhea for an evening and a bit of a fever with it. This is a tough treatment with the possibility of a few surprises or issues popping up during the process. I wouldn't want to make any decisions for you just trying to help. Wait till you have all your options. As someone said in a previous post maybe they can give her a less arduous treatment. She could also start and if it gets to be too hard on her she may have to quit the treatment. She might need a good bit of help to get through this at her age make sure to have this covered with family, visiting nurses, etc. This is tough treatment and she has to prepare herself mentally for a tough treatment. There is a lot involved here I would have a consult with her regular family physician also to get their input on the situation and any other docs she has such as heart doc etc. Good luck and God Bless whatever you decision is-I tried to help here but can't cover everything if you have any  questions please let me know sorry this is so long of a response-Russ

     

    Appreciate all your help

    Russ - thank you for taking the time to share your information with me.  These are all things that we've been trying to get mom to "absorb" and understand and we all sense that she's not fully comprehending what it all means.  i certainly don't want my mom to die, but the reality is that she's 83......it WILL happen.  What i fear more than her dying is her suffering through treatment and THEN dying, with no "reward" for the suffering.  i want her to at least explore, talk about, understand, and consider the option of not pursuing treatment.  What would that mean?  What would that give her?  What would she be able to do?  These are valid questions that she needs to explore........and i don't know how to get her to do that.  She's attended all the appointments, heard the doctors answers to my MANY questions, but still......i don't think she "gets" it.  If you were 83 when you were diagnosed - and knowing what you know about the treatment - would you go through with radiation?  If your health was already compromised, would you do it?  i KNOW she'll have complications - she always does! - and we can't go back to "before" if that happens.  So i worry that her final months/years will be filled with issues she wasn't expecting and that aren't any fun - inability to swallow, feeding tubes, no saliva, etc.  She already can't breathe out of her nose - it's totally blocked, so if she has issues with her throat and can't breathe, then what?  A breathing tube?  Doesn't sound like a fun way to spend your remaining days, i have to say.  If she UNDERSTANDS all of that and says she's up for the fight, i'm with her 100%, but i know her.........and she's NOT up to the fight.  i just want to get her to see her options and make decision from a place of knowledge, not "the doctor says".........

    Thanks again for your time and assistance.  Everyone here has been so helpful.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #8
    Tough one...

    Sorry to hear about your mom.  You sound like a great daughter and she's lucky to have your support!  It's not an easy conversation/decision to make...

    Brandon

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