New to this forum, worried

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Hi all,

Never posted here before but have been reading a lot of helpful posts and encouraging thoughts on this board and hoped I might get some answers and support.

My 75-year-old Mom was just diagnosed by an ENT with what he terms stage IV tongue cancer that has invaded her epiglottis and larynx and at least one lymph node (based on the MRI). She has a biopsy scheduled for next Thursday the 14th and will receive a trach tube then to protect her airway. The doctor worries that the tumor may swell (especially if she receives chemo and radiation later)and obstruct her trachea, hence the trach tube.

I guess I am most concerned with the possible treatment. The doctor said he didn't think surgical removal was a good idea because the procedure to remove the tumor (about 4CM and growing into her other tissues) would be very disfiguring and she'd likely lose her voicebox, too, and her tongue and would ever eat or drink again. He thought chemo and radiation would be the better option. But from what I've read those treatments can be very difficult to endure. Mom only weighs 90 lbs and I'm very worried that she'll lose even more weight from the treatments, then what? She has numerous dental issues - failing dental implants, improperly fitting lower partial, etc. Don't know what will happen to her remaining teeth. She lost a kidney 40 years ago and also suffers severe hypertension.

Her heart is otherwise healthy and lungs looked clear on the xray, but she may need a PET scan to make sure there are no distant metastases.

This is all so new to us it's pretty hard to comprehend, much less manage. I'm an only child and her only living relative. To make matters worse, she has some untreated mental health issues (OCD, compulsive hoarding and a few other issues) that really complicate her situation.

Do any of you have any knowledge of what treatment is usually suggested for someone of her age and fragility? Or any idea of survivability? Is treatment even suggested? Should she get a PET scan before beginning chemo or radiation?

She'll be referred to oncologists after the biopsy, but that visit is probably weeks away and we're both scared and anxious.

Thank you so much in advance for any info you can provide.

Comments

  • katenorwood
    katenorwood Member Posts: 1,912
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    Been there..
    I am so sorry to hear about your Mom...first of all get the biopsy done. Find out for sure what kind of cancer this is. ENT's are very good, but you need the exact diagnois from the biopsy. Head and neck cancers are tricky...I have adenoid cystic carcinoma. Then look up as much information as you can on this type of cancer...treatment options, side effects ect. Be armed ahead of time for questions for oncologist. Being an only child, this has to be insane for you. If you have someone that can help you with searches on net, pull them in. Also, pull someone in for appointments for you and Mom...and write everything down. Again, I am so sorry...lost my Mom 2 yrs. ago to ovarian cancer. All my prayers are sent for your Mother and you ! Katie
  • Pam M
    Pam M Member Posts: 2,196
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    Frightening
    It can all be very overwhelming. I do know we've had a couple of caregivers to older parents post here - names are escaping me - sorry.

    Wow - I would think that with OCD and hoarding issues, the loss of control during treatment will be extra hard for her.

    Wish I had some info to share with you - all I can offer is my sincere hope for the best.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome
    Sorry for the situation that has brought you here, but it's a good place to be considering the circumstances...awesome people here and tons of experience.

    I was STGIII SCC Tonsils, but several here dealt with tongue cancer, and I'm sure will chime in soon.

    Also, like mentioned, several with experience caring for the elderly.



    I'm sure prolonged survivorbility is achieveable, a lot depends or her will to battle and her bodies ability.

    Usually they'll do a PET scan before starting treatment to identify any distant areas of concern and to better identifiy the main area of concern.

    Thoughts and Prayers,
    John
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hi....I'm sorry you find yourself here...but am SO
    glad you found us. This forum is so full of knowledge, support, and caring....you are in wonderful hands!!

    I don't have tongue cancer...I have NPC....but I can address the weight problem. I started out at 93 lbs...so chose to have a feeding tube installed before I ever got started in treatment...safety insurance sort of thing. I have lost only 3 1/2 lbs since I started treatment...and I'm only a week from finsishing. So weight can be maintained..I just make myself eat when I can, and tube it on days when I don't feel so good, but know I've got to have fuel in me.

    I'm sure they'll find a way around the hypertension, and take extra care of her remaining kidney...as chemo can be hard on those.

    I'm putting your mom on my prayer list...as others here will do, I'm sure.

    This is a great place for support and knowledge...the best place I could have every found.

    p
  • jim and i
    jim and i Member Posts: 1,788 Member
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    So sorry for your struggles
    My husband had stage 4 tongue cancer with mets to 2 lymph nodes. He was diagnosed at age 76. He was under weight when starting treatment but maintained his weight through tube feeding. I worry about your mom's kidney. The Cisplatin was hard on his kidneys so the stopped the chemo and put him on Erbatox. I agree with the others, search out all the info you can, ask a lot of questions. I kept a notebook with all information in it and questions to ask the doctor. It was like my Bible. I also bought a hand carried file to keep all bills, bloodwork and insurance papers in as well.

    I am praying for you both.

    Debbie
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    new to forum
    malloyproducer,

    Your story is heart wrenching, my prayers go out to you.

    I was diagnosed with STIII SCC HPV+ Lower tongue, one lymph node. Had surgery, radiation and chemo and I am in mending stages now.

    It is not unusual to conduct radiation and/or chemo with hopes of shrinking or eliminating cancer areas prior too surgery. It is far less invasive and can have good results. Whether your mom goes through surgery, radiation or chemo, each will be custom tailored to fit her condition. The doctors will look at her complete medical history and arrive at a best choice.

    Stay strong and bless you for helping your Mom.

    Peace,

    Matt
  • Sam999
    Sam999 Member Posts: 319 Member
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    Hi....I'm sorry you find yourself here...but am SO
    glad you found us. This forum is so full of knowledge, support, and caring....you are in wonderful hands!!

    I don't have tongue cancer...I have NPC....but I can address the weight problem. I started out at 93 lbs...so chose to have a feeding tube installed before I ever got started in treatment...safety insurance sort of thing. I have lost only 3 1/2 lbs since I started treatment...and I'm only a week from finsishing. So weight can be maintained..I just make myself eat when I can, and tube it on days when I don't feel so good, but know I've got to have fuel in me.

    I'm sure they'll find a way around the hypertension, and take extra care of her remaining kidney...as chemo can be hard on those.

    I'm putting your mom on my prayer list...as others here will do, I'm sure.

    This is a great place for support and knowledge...the best place I could have every found.

    p

    Hi,
    I have toungue cancer

    Hi,

    I have toungue cancer and it is one of the most agressive type of cancer i.e. Spreads quickly, however with newer treatments prognosis seems better and better every day.

    I do not know much on radiation but there seems to be lot of new ways which has less side affecfs. Aks the doc if she can be a candiate for less invasive newere procedures.

    Welcome to this board and as others have said, we ae sorry anyone has to join here but this is the best place to get a ton of info.

    I agree with Pharannie on the weight part, with proper nutriton it can be managed. I have seen much older patients going thru treatment so i am sure docs have ways to take care of problems that comes with older age.

    Tongue cancer is one of the hardest cancer to have. My best wishes and prayers for your mom.

    I did my surgery and in 4th week of radiation.


    Sam
  • malloyproducer
    malloyproducer Member Posts: 6
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    CivilMatt said:

    new to forum
    malloyproducer,

    Your story is heart wrenching, my prayers go out to you.

    I was diagnosed with STIII SCC HPV+ Lower tongue, one lymph node. Had surgery, radiation and chemo and I am in mending stages now.

    It is not unusual to conduct radiation and/or chemo with hopes of shrinking or eliminating cancer areas prior too surgery. It is far less invasive and can have good results. Whether your mom goes through surgery, radiation or chemo, each will be custom tailored to fit her condition. The doctors will look at her complete medical history and arrive at a best choice.

    Stay strong and bless you for helping your Mom.

    Peace,

    Matt

    Thank you so much for your kind words!
    I truly appreciate all of your for your responses and kind sentiments. i also value your advice and will make sure I have a notebook with me at all time - very good advice.

    I've written a list of questions for the oncologist, depending on the type of cancer cells they find in Mom's biopsy next Thursday, and hope we'll have some solid treatment plan moving forward. The not knowing is terrible, as I am sure you all know all too well.

    Her hoarding is a separate, but now related, awful problem. I do not see how she can return to her home as it is with a trach tube and going through some kind of treatment, but she is unwilling - at least at this point - to consider going anyplace else. She has almost as much anxiety about leaving her home for the biopsy/trach surgery as she does about the diagnosis itself. Next week she says she will sign a durable power of attorney over her affairs so that I can pay her bills and I'm going to find out if that would also give me the legal ability to clean up her home.

    I'm trying to remain positive and upbeat and not worry too much about these things over which I have no control, but her living conditions have been a serious problem for years, and now may actually threaten her health and recovery. I hope to speak with the hospital social worker or patient advocate or somebody about managing her care given the inhospitable condition of her home. I hope Mom might listen to a 3rd party and not feel like I've betrayed her trust in speaking about her home, which she has forbidden me to do.

    Sorry to dump all this here, I just don't really have anybody to talk to about all this. I will try to stick to just the medical stuff from now on. It all is just overlapping and coming to a head all at once, it seems. Overwhelming.

    Thank you all again so very much for your thoughts, prayers, well wishes and advice. I sincerely hope you and your loved ones are doing well and on the road to remission!

    Peace and love,
    Kathy
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Thank you so much for your kind words!
    I truly appreciate all of your for your responses and kind sentiments. i also value your advice and will make sure I have a notebook with me at all time - very good advice.

    I've written a list of questions for the oncologist, depending on the type of cancer cells they find in Mom's biopsy next Thursday, and hope we'll have some solid treatment plan moving forward. The not knowing is terrible, as I am sure you all know all too well.

    Her hoarding is a separate, but now related, awful problem. I do not see how she can return to her home as it is with a trach tube and going through some kind of treatment, but she is unwilling - at least at this point - to consider going anyplace else. She has almost as much anxiety about leaving her home for the biopsy/trach surgery as she does about the diagnosis itself. Next week she says she will sign a durable power of attorney over her affairs so that I can pay her bills and I'm going to find out if that would also give me the legal ability to clean up her home.

    I'm trying to remain positive and upbeat and not worry too much about these things over which I have no control, but her living conditions have been a serious problem for years, and now may actually threaten her health and recovery. I hope to speak with the hospital social worker or patient advocate or somebody about managing her care given the inhospitable condition of her home. I hope Mom might listen to a 3rd party and not feel like I've betrayed her trust in speaking about her home, which she has forbidden me to do.

    Sorry to dump all this here, I just don't really have anybody to talk to about all this. I will try to stick to just the medical stuff from now on. It all is just overlapping and coming to a head all at once, it seems. Overwhelming.

    Thank you all again so very much for your thoughts, prayers, well wishes and advice. I sincerely hope you and your loved ones are doing well and on the road to remission!

    Peace and love,
    Kathy

    Kathy....don't even think of just sticking to the medical stuff
    our worries, our fears, our inner thoughts are all part of this...all parts that need to be addressed and soothed....there is a ton of medical knowledge here......and another ton of practical knowledge (the kind that gets us thru the day by day things)...but there is also a ton of emotional support to be used here.

    Don't hesatate to use all....

    p
  • Pam M
    Pam M Member Posts: 2,196
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    Thank you so much for your kind words!
    I truly appreciate all of your for your responses and kind sentiments. i also value your advice and will make sure I have a notebook with me at all time - very good advice.

    I've written a list of questions for the oncologist, depending on the type of cancer cells they find in Mom's biopsy next Thursday, and hope we'll have some solid treatment plan moving forward. The not knowing is terrible, as I am sure you all know all too well.

    Her hoarding is a separate, but now related, awful problem. I do not see how she can return to her home as it is with a trach tube and going through some kind of treatment, but she is unwilling - at least at this point - to consider going anyplace else. She has almost as much anxiety about leaving her home for the biopsy/trach surgery as she does about the diagnosis itself. Next week she says she will sign a durable power of attorney over her affairs so that I can pay her bills and I'm going to find out if that would also give me the legal ability to clean up her home.

    I'm trying to remain positive and upbeat and not worry too much about these things over which I have no control, but her living conditions have been a serious problem for years, and now may actually threaten her health and recovery. I hope to speak with the hospital social worker or patient advocate or somebody about managing her care given the inhospitable condition of her home. I hope Mom might listen to a 3rd party and not feel like I've betrayed her trust in speaking about her home, which she has forbidden me to do.

    Sorry to dump all this here, I just don't really have anybody to talk to about all this. I will try to stick to just the medical stuff from now on. It all is just overlapping and coming to a head all at once, it seems. Overwhelming.

    Thank you all again so very much for your thoughts, prayers, well wishes and advice. I sincerely hope you and your loved ones are doing well and on the road to remission!

    Peace and love,
    Kathy

    I'm With Phrannie
    No need to apologize for "dumping" here. That's what the site is for. Many things that aren't cancer can, and should, be brought up here. Each thing is another straw on the camel's back.

    Hope a social worker or other med professional can help with your mom. I've seen the show "Hoarders", and it's heartbreaking how some folks feel attacked and/or betrayed by the people who are desperately trying to help them. Maybe once she gets over the mortification that an outsider knows about her home, she can start to heal on more than one front. I hope that's the case.

    And again - don't feel embarrassed to ask how to find help and/or support for yourself. I wouldn't be surprised to learn there are support groups out there for hoarders' families, just like there are for cancer survivors' loved ones.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Kathy....don't even think of just sticking to the medical stuff
    our worries, our fears, our inner thoughts are all part of this...all parts that need to be addressed and soothed....there is a ton of medical knowledge here......and another ton of practical knowledge (the kind that gets us thru the day by day things)...but there is also a ton of emotional support to be used here.

    Don't hesatate to use all....

    p

    Hi Kathy ...
    Sorry you find yourself here ...

    I agree with Debbie on this one. I am 49 and did not get the platinum chemo drugs but just had Erbitux and radiation. I was stage III base of tongue with one lympn node and my first post PET/CT scan came back very good.

    But, I am no doctor and I'm sure you will have a great team.

    I will be happy to put your mom on my nightly prayer list ....

    Best,

    Tim
  • katenorwood
    katenorwood Member Posts: 1,912
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    Thank you so much for your kind words!
    I truly appreciate all of your for your responses and kind sentiments. i also value your advice and will make sure I have a notebook with me at all time - very good advice.

    I've written a list of questions for the oncologist, depending on the type of cancer cells they find in Mom's biopsy next Thursday, and hope we'll have some solid treatment plan moving forward. The not knowing is terrible, as I am sure you all know all too well.

    Her hoarding is a separate, but now related, awful problem. I do not see how she can return to her home as it is with a trach tube and going through some kind of treatment, but she is unwilling - at least at this point - to consider going anyplace else. She has almost as much anxiety about leaving her home for the biopsy/trach surgery as she does about the diagnosis itself. Next week she says she will sign a durable power of attorney over her affairs so that I can pay her bills and I'm going to find out if that would also give me the legal ability to clean up her home.

    I'm trying to remain positive and upbeat and not worry too much about these things over which I have no control, but her living conditions have been a serious problem for years, and now may actually threaten her health and recovery. I hope to speak with the hospital social worker or patient advocate or somebody about managing her care given the inhospitable condition of her home. I hope Mom might listen to a 3rd party and not feel like I've betrayed her trust in speaking about her home, which she has forbidden me to do.

    Sorry to dump all this here, I just don't really have anybody to talk to about all this. I will try to stick to just the medical stuff from now on. It all is just overlapping and coming to a head all at once, it seems. Overwhelming.

    Thank you all again so very much for your thoughts, prayers, well wishes and advice. I sincerely hope you and your loved ones are doing well and on the road to remission!

    Peace and love,
    Kathy

    Give this to a higher power
    Kathy,
    Oh my dear girl....so much for one person, anyone else to help ? Social workers are wonderful sources of help and a wealth of knowledge. But I was once a care giver and I personally know how darn stubborn parents can be. Take care of yourself too, and vent as much as possible, we are here to listen. One step at a time, sometimes one moment at a time. I feel for your Mother...can't imagine the turmoil. Any time you need us, call upon the group ! Much love and prayers are sent your and your Mothers way. Katie
  • Jahnsart
    Jahnsart Member Posts: 41
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    it is a personal decision
    Thanks for posting Kathy. Ultimately all of the treatment options are your mothers. It is so frustrating to want to help someone out of the mess that they are in, and be thwarted at every turn. All anyone can really do is provide emotional support and be a shoulder to lean on. My mother too had a lot of the same issues and she died way too young despite all our good intentions. You might want to collect all the facts and options. And let her decide what she wants to do.
  • bjw1955
    bjw1955 Member Posts: 67
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    Cancer

    Sorry to hear that about your mother. I'm 56 yrs old and had a golf ball size tumor on my voice box, that was 1-11 and a survivior. this is my experience 1} get a dentist apt. because the dr has to ok it before your treatment starts. Once you start radiation you have to go the cource, if at any point you stop then you have to start all over again, once you start your treatment your mouth and throat will be real sore. If your mother is that skinny her dr will put a feeding tube in at some point. I still have my trach because I didn't have to have surgery. Mine was stage 3 Laryngeal {voicebox} The sooner she has a biopsy and pet scan the sooner treatment will start. I ended up with a trach because my tumor was blocking my airway. I have a speaking valve hooked up to my trach with oxygen. Always stay postive and surround your mother with caring family and friends. I wish the best for your mother. God Bless
  • bjw1955
    bjw1955 Member Posts: 67
    Options
    Cancer

    Sorry to hear that about your mother. I'm 56 yrs old and had a golf ball size tumor on my voice box, that was 1-11 and a survivior. this is my experience 1} get a dentist apt. because the dr has to ok it before your treatment starts. Once you start radiation you have to go the cource, if at any point you stop then you have to start all over again, once you start your treatment your mouth and throat will be real sore. If your mother is that skinny her dr will put a feeding tube in at some point. I still have my trach because I didn't have to have surgery. Mine was stage 3 Laryngeal {voicebox} The sooner she has a biopsy and pet scan the sooner treatment will start. I ended up with a trach because my tumor was blocking my airway. I have a speaking valve hooked up to my trach with oxygen. Always stay postive and surround your mother with caring family and friends. I wish the best for your mother. God Bless
  • Grandmax4
    Grandmax4 Member Posts: 723
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    sorrry to read this~~
    I am 66 years old, always been really healthy ( prior to this devil disease ) I had only been in the hospital twice and that was to have my babies.
    I was diagnosed in October 2011 with cancer of the epiglottis, my ENT wanted me to have the newest treatment possible and recommended a Professer/Surgeon at The James Center in Columbus Ohio.
    The second I met my Dr, I felt so safe, like everything would be okay..he gave me the choice of radiation and chemo or surgery using the De Vinci robot..I opted for the surgery, I knew going in that it may have spread to my nodes,and radiation would be necessary. Long story short, I had the 8 hour surgery, nodes came back clean, all scopes in the 7 months since are NED...I'm happy and lucky.
    No epiglottis meant I had to learn to swallow , speech therepy has helped me to the point of soft food diet and drinking very well. I'm praying as time passes other foods will be added, if not, I'm alive and very thankful and grateful.
    I realize your Mom is facing a lot more but there is hope and so many new techniques and treatments...are you near a large training school/hospital? Maybe a second opinion from a onololgist would be a good idea. You should not have to wonder what treatment and tests she needs, you Dr should be setting all of that up.I'm not seeing the reasoning for a couple different things the ETN is saying.....

    I'm sure she should have a PET scan
    I was at a total loss on what to do too, I didn't even know what an epiglottis was and what it did, I truly believe with all that's wrong with your Momma a second opinion is needed, and a better explaination to you about what they are recommending



    if I'm wrong, SOMEONE please correct me, but I don't understand putting in a trach before treatment is settled on....
    I went into surgery with the knowledge that I may have to have a trach, Thank You God, I had enough airway that one wasn't needed.

    You and your Mom are in my thoughts...peace and take care of yourself too,
  • alaskanjan
    alaskanjan Member Posts: 42
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    Grandmax4 said:

    sorrry to read this~~
    I am 66 years old, always been really healthy ( prior to this devil disease ) I had only been in the hospital twice and that was to have my babies.
    I was diagnosed in October 2011 with cancer of the epiglottis, my ENT wanted me to have the newest treatment possible and recommended a Professer/Surgeon at The James Center in Columbus Ohio.
    The second I met my Dr, I felt so safe, like everything would be okay..he gave me the choice of radiation and chemo or surgery using the De Vinci robot..I opted for the surgery, I knew going in that it may have spread to my nodes,and radiation would be necessary. Long story short, I had the 8 hour surgery, nodes came back clean, all scopes in the 7 months since are NED...I'm happy and lucky.
    No epiglottis meant I had to learn to swallow , speech therepy has helped me to the point of soft food diet and drinking very well. I'm praying as time passes other foods will be added, if not, I'm alive and very thankful and grateful.
    I realize your Mom is facing a lot more but there is hope and so many new techniques and treatments...are you near a large training school/hospital? Maybe a second opinion from a onololgist would be a good idea. You should not have to wonder what treatment and tests she needs, you Dr should be setting all of that up.I'm not seeing the reasoning for a couple different things the ETN is saying.....

    I'm sure she should have a PET scan
    I was at a total loss on what to do too, I didn't even know what an epiglottis was and what it did, I truly believe with all that's wrong with your Momma a second opinion is needed, and a better explaination to you about what they are recommending



    if I'm wrong, SOMEONE please correct me, but I don't understand putting in a trach before treatment is settled on....
    I went into surgery with the knowledge that I may have to have a trach, Thank You God, I had enough airway that one wasn't needed.

    You and your Mom are in my thoughts...peace and take care of yourself too,

    Second Opinion
    I am always in favor of a second opinion and think once the biopsy is done that would be the next thing to do. The other thing that I would do, is, as others are suggested, keep a good journal...there is so much information coming your way that is easily forgotten if it is not put in writing. My husband was diagnosed with Base of Tongue cancer last Sept. and the first thing on my mind was getting treatment at the place that has the most experience with this particular cancer. I did not want him going to someone that does one a week or one a month. Find out who treats this cancer many times a day. Doing the trach prior to surgery does make sense to me given the area that the cancer has invaded. It is all scary stuff and please remember that your friends and family that want to help are truly there for you, and you will need the help and emotional support. I see that I have posted this reply under another one but I am sure you will see it. You and your mother are in my thoughts and prayers.
  • nick770
    nick770 Member Posts: 195
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    My heart
    Goes out to you and your mother , this board is a great place for you to be in this chapter of your life .