Venting....and has it happened to anyone else?

accordiongirl · October 2018

Hey all - so some of you know that my 83 yr old mother has been diagnosed with throat cancer and her treatment option was radiation. She thought about it, even had an appointment to get her teeth pulled, but we explored surgery (not an option, it turns out) and through the course of that time, mom decided she didn't want to go through with radiation treatment. She still had a PET scan to see if the cancer had spread. So yesterday we saw the radiation oncologist to get the results of that. No cancer other places, which is great. Then he started talking about setting up radiation and she told him she had decided not to do it. That was his cue to have a conversation with her, ask her what her thoughts were and how she came to that decision, etc. Instead, he acted like a desperate used car salesman scrambling to fulfil his monthly quota. He told her how much she's going to suffer if she doesn't get radiation and when she quipped back that radiation would be filled with suffering, he downplayed any and all side effects. She told him she didn't want to lose her teeth and he said, "Oh, maybe they don't have to be pulled." Then we told him that the oral surgeon recommended having them all pulled. So he looks in her mouth (only her lower teeth are hers - she has a plate for the uppers) and says, "Yes, they should all be pulled." And THEN he proceeds to tell her, "If you don't want to get your teeth pulled, I'll treat you anyway." SERIOUSLY?!! So, he'd be willing to put my mother's JAW at risk by giving her radiation even though she has bad bottom teeth, risking osteonecrosis. i'm very angry with him as he caused her to second guess a decision she spent plenty of time thinking about and had found peace with, and instead put thoughts of awful pain and suffering in her head (when hospice has told us that they would be able to manage her pain and discomfort). i didn't feel like this doctor was acting in the best interest of his patient at all. i fully understand that he might have wanted to discuss the pros and cons of her options with her, but his methods were totally unacceptable. i was going to ask him, "If this was YOUR mother, what would you advise her to do?" but i realized that i already knew the answer. He was clearly a "radiation at all cost" kind of doctor, and to me, those are the most dangerous kinds of all. i am grateful that my mother has opted to stick to her original decision - can't imagine having to take her to him 5X's a week for 7 weeks.

Thanks for letting me vent. Has anyone else been pressured or felt pressured to agree to a certain type of treatment? And if so, what did you do?

~ accordiongirl

Klingels · October 2018

radiation

We did not get the same treatment, however we were advised that letting this cancer go its course is very painful and there are unpleasant consequences for eating and breathing. Radiation maybe a preferable suffering.

accordiongirl · October 2018

Klingels said:
radiation
We did not get the same treatment, however we were advised that letting this cancer go its course is very painful and there are unpleasant consequences for eating and breathing. Radiation maybe a preferable suffering.

No doubt!

Glad you didn't get the same treatment. Yes, there's clearly suffering no matter which way you go on this, but at 83, mom just doesn't see the value in suffering through radiation. Hospice care has indicated that they would be able to give her whatever meds necessary to keep her relatively comfortable. That was a phone consult, however, and we do have to meet with them this week to talk actual details. But at least mom has this time now to do what she wants, spend time with family and friends, and enjoy.....if she were embarking on radiation, she would be toothless and isolated in her apartment, on top of all the other "joys" that come with this. Add to that equation her age and other health issues, and i don't think she would survive treatment (i know my mom's level of tolerance for stuff and radiation would FAR exceed that), so we'd lose her anyway. This way, we have time.

i'm confident she has made the right choice for HER situation. i'm hoping that she can hold onto the peace she had with that decision prior to talking to the doctor. One of the things she clings to is the belief that she will be with my dad again. i hold onto that belief for her, too. i'm not looking forward to losing her, but the idea that she'd have to suffer so much with treatment and ultimately die anyway is too much to bear.

We do have ONE more thing to explore and that's keytruda immunotherapy. i know NOTHING about it - not even sure i understand what it is, but it was suggested by someone that we look into it, so we have an appointment with a medical oncologist to get some information on that - i figure we have nothing to lose. If that would give her some relief and time, it's a win win. We'll see what happens.

SuzJ · October 2018

accordiongirl said:
No doubt!
Glad you didn't get the same treatment. Yes, there's clearly suffering no matter which way you go on this, but at 83, mom just doesn't see the value in suffering through radiation. Hospice care has indicated that they would be able to give her whatever meds necessary to keep her relatively comfortable. That was a phone consult, however, and we do have to meet with them this week to talk actual details. But at least mom has this time now to do what she wants, spend time with family and friends, and enjoy.....if she were embarking on radiation, she would be toothless and isolated in her apartment, on top of all the other "joys" that come with this. Add to that equation her age and other health issues, and i don't think she would survive treatment (i know my mom's level of tolerance for stuff and radiation would FAR exceed that), so we'd lose her anyway. This way, we have time.

i'm confident she has made the right choice for HER situation. i'm hoping that she can hold onto the peace she had with that decision prior to talking to the doctor. One of the things she clings to is the belief that she will be with my dad again. i hold onto that belief for her, too. i'm not looking forward to losing her, but the idea that she'd have to suffer so much with treatment and ultimately die anyway is too much to bear.

We do have ONE more thing to explore and that's keytruda immunotherapy. i know NOTHING about it - not even sure i understand what it is, but it was suggested by someone that we look into it, so we have an appointment with a medical oncologist to get some information on that - i figure we have nothing to lose. If that would give her some relief and time, it's a win win. We'll see what happens.

where..

are you? what hospital? I know my Rad Onc wouldn't have done that. He gave it to me straight.

Losing your lower teeth isn't that big a deal in the big picture, I can attest to that, even tho I hate these damn dentures, I am learning to live with them

Basically I guess I am saying, with 7 weeks of radiation, and only one place, no other involvement, I'd do it. I'd do it to keep my Mum.

I didn't have that option, Lung Cancer is brutal, and fast.

accordiongirl · October 2018

SuzJ said:
where..
are you? what hospital? I know my Rad Onc wouldn't have done that. He gave it to me straight.

Losing your lower teeth isn't that big a deal in the big picture, I can attest to that, even tho I hate these damn dentures, I am learning to live with them

Basically I guess I am saying, with 7 weeks of radiation, and only one place, no other involvement, I'd do it. I'd do it to keep my Mum.

I didn't have that option, Lung Cancer is brutal, and fast.

Mom's decision

Mom has weighed the options and she doesn't want to do it. She doesn't want the feeding tube, the no teeth (bringing with it the isolation, as she would not go ANYWHERE without her teeth - except treatment, of course), the extreme sore throat, the loss of saliva, the fatigue, the skin burns, the very good chance that she wouldn't survive treatment and, if she did, the chance that she might never be able to get dentures to fit or get rid of the feeding tube or be able to talk easily (espeically without teeth), etc. The quality vs quantity for HER has been considered and with her other health issues, she doesn't feel that treatment is worth the cost. i'm not looking forward to losing my mom, but i respect her decision and am grateful that we have the time now to spend together and do things. Can't blame an 83 yr old in only fair health if they don't want to endure the horrors of radiation.

bugsyboy · October 2018

Medication

Your mom's RadOnc sounds like a jerk. I wonder how much experience he has dealing with oral cancer patients? It may give you satisfaction sending your mom's insurance carrier a letter sharing your experience. Or at least writing it and not sending it. That's up to you.

I was an in-patient for my last week of treatments due to my own stubbornness and can attest that with today's pharmaceuticals, your mom will feel no pain. At 83, I believe she's making the right decision.

Best of luck.

Bugsy

accordiongirl · October 2018

bugsyboy said:
Medication
Your mom's RadOnc sounds like a jerk. I wonder how much experience he has dealing with oral cancer patients? It may give you satisfaction sending your mom's insurance carrier a letter sharing your experience. Or at least writing it and not sending it. That's up to you.

I was an in-patient for my last week of treatments due to my own stubbornness and can attest that with today's pharmaceuticals, your mom will feel no pain. At 83, I believe she's making the right decision.

Best of luck.

Bugsy

Thanks for your support

Bugsy - thank you for your comments. i agree, he is a jerk. He's been at this clinic for quite awhile - he was actually my dad's doc when he had radiation on his hip 7 yrs ago. i would assume he would have the experience, but he clearly doesn't have the common sense and/or compassion. i did find it interesting when talking to his nurse on the phone after mom's initial consult appt with him when i was telling her that we were trying to find alternatives to radiation (i was actually looking into the TORS procedure). She said, "There's another option you should consider - not saying you have to do it, but you should at least look at it, and that is hospice care." i appreciated her so much for saying that to me because HE had never given the idea that NOT treating it was an option. She gave me options, advice, and ultimately said, "Your mom has two really bad choices. My heart goes out to you." It was the kindest, most helpful thing she could have said. She's right - both options suck. To me, though, one option will cause immeasurable suffering before she dies, and one will likely cause pain, but will be managed by whatever levels of meds are needed, even if that means she's sleeping or unaware most of the time. When that time comes, she'll be ready to go see dad. i won't be ready, but there's no timeframe when that will be true anyway.

i like your idea of writing a letter. Not sure who i'd write it to......would like to warn other potential patients that they DO have choices and to not let him pressure or bully them into what HE wants. Guess it might just have to be written and then set free. Or at least set ME free.

Thanks for your note. Best to you in your fight - you say you're stubborn, so you've got this!

~ accordiongirl

Chicklette · October 2018

Natural Remedies for Pallative Care

Hello,

I just want to give you a virtual hug as I can only imagine how hard it was to come to a decision like this. I’m glad you respect your mom’s decision and I’m sorry you had to deal with such a jerk of a doctor. Have you looked into natural remedies? I don’t believe they will cure her cancer, but maybe there are things out there that will relieve some pain or slow things down a bit. Where my husband was only 52 when diagnosed and in otherwise good health, we went with the full treatment. However, I do remember reading about some natural remedies as well (again, not for a cure, but palliative). I wish you and your mom peace and comfort in this difficult time.

~Chicklette~

SuzJ · October 2018

accordiongirl said:
Mom's decision
Mom has weighed the options and she doesn't want to do it. She doesn't want the feeding tube, the no teeth (bringing with it the isolation, as she would not go ANYWHERE without her teeth - except treatment, of course), the extreme sore throat, the loss of saliva, the fatigue, the skin burns, the very good chance that she wouldn't survive treatment and, if she did, the chance that she might never be able to get dentures to fit or get rid of the feeding tube or be able to talk easily (espeically without teeth), etc. The quality vs quantity for HER has been considered and with her other health issues, she doesn't feel that treatment is worth the cost. i'm not looking forward to losing my mom, but i respect her decision and am grateful that we have the time now to spend together and do things. Can't blame an 83 yr old in only fair health if they don't want to endure the horrors of radiation.

Item by item..

First off, I have to say, I admire you for doing this.

I didn't have a feeding tube - you don't HAVE to have one, I just inhaled Boost all the time - along with suggestions made on this board of additions that helped.

Teeth - do yoiu realize how little you actually see your bottom teeth? they are just there to eat with really.. Upper teeth are the vanity thing - I know about the vanity thing, because the first things I actually thought were, "My teeth!" followed by "My hair!" But neither were a biggie in the end.

extreme sore throat wasn't really untill the end, (after treatment) and there are lots of mouthwashes to help. whats 3 weeks of hell in the big picture?

Skin burns healed in 2 weeks. Looked as good as new. - Radiation nurse showed how to clean and dress it, with a cream called Mederma.

I'm sorry - it just seems from your posts that you have ONLY been told the really negative stuff.

accordiongirl · October 2018

SuzJ said:
Item by item..
First off, I have to say, I admire you for doing this.

I didn't have a feeding tube - you don't HAVE to have one, I just inhaled Boost all the time - along with suggestions made on this board of additions that helped.

Teeth - do yoiu realize how little you actually see your bottom teeth? they are just there to eat with really.. Upper teeth are the vanity thing - I know about the vanity thing, because the first things I actually thought were, "My teeth!" followed by "My hair!" But neither were a biggie in the end.

extreme sore throat wasn't really untill the end, (after treatment) and there are lots of mouthwashes to help. whats 3 weeks of hell in the big picture?

Skin burns healed in 2 weeks. Looked as good as new. - Radiation nurse showed how to clean and dress it, with a cream called Mederma.

I'm sorry - it just seems from your posts that you have ONLY been told the really negative stuff.

No, she's heard it all

Well, yes, we've heard a LOT of negative things about radiation because there ARE a lot of them. We also know that it's possible she might not have them all, but we know the realities of an 83 yr old with heart issues and diabetes and mobility issues who lives alone.......the ability for mom to care for herself, remain engaged in her life and activies, be able to speak to us - or anyone - without any teeth, have any desire to be in public with a sunken face, and endure the issues that come with radiation is quite questionable. We would absolutely have had a feeding tube placed prior to treatment because we've been advised by so many others who have gone through it that it's so much more difficult to have to have it placed during treatment than before. But we were also advised by dozens of people - both here and on other sites - that treatment was hell and that treatment at 83 would be beyond hell. Mom doesn't want to endure that and likely die in the midst of it anyway. i don't blame her. She's not afriad of dying, she's just not interested in not being able to LIVE while still alive. i know her choice isn't right for everyone, but it's right for HER. And knowing what i know about my mom and her "fight" or lack thereof, i believe she's making the right choice.

accordiongirl · October 2018

Chicklette said:
Natural Remedies for Pallative Care
Hello,

I just want to give you a virtual hug as I can only imagine how hard it was to come to a decision like this. I’m glad you respect your mom’s decision and I’m sorry you had to deal with such a jerk of a doctor. Have you looked into natural remedies? I don’t believe they will cure her cancer, but maybe there are things out there that will relieve some pain or slow things down a bit. Where my husband was only 52 when diagnosed and in otherwise good health, we went with the full treatment. However, I do remember reading about some natural remedies as well (again, not for a cure, but palliative). I wish you and your mom peace and comfort in this difficult time.

~Chicklette~

Thank you!

Chicklette,

Thank you for your kind note. We will certainly be partnering with palliative or hospice care - it's one of the calls i'll be making this week....just to find out what they can tell us about the process, how they can support her, what kinds of meds they'd use, etc. Thankfully, mom has no pain as of yet. She can't breathe through her nose, but that is her only symptom so far. We're aware that pain will most likey come at some point down the road, though we don't know when. We're also thinking that it's possible that she could be spared all of that if the tumor does something with/to her carotid artery......would be such a blessing to have it just take her swiftly without the need for hospice care. i think they are marvelous, but if she could hop the bullet train instead of going by pony express, why not?! Again, i hate that i even have to consider losing my mom, but i just don't get a say in the matter, so i'd better deal with the reality as best i can.

i will explore every possibility for her and her comfort. i appreciate your suggestions - thank you!

~ accordiongirl

caregiver wife · October 2018

Palliative Radiation

Yes, radiation was discussed with my husband as possible treatment as palliative care (pain management) when his cancer returned. We did not have to go that route as the palliative chemo actually put him back in remission.

A dear friend of mine is now having chemo and radiation as palliative care for late stage cancer when pain medication was no longer sufficient. So, yes, radiation is an accepted line of treatment as a stand alone when surgery and chemo are not an option. And also as palliative care.

I am sorry your family is having to go through this and these decisions.

Curlyn · October 2018

Hello, at 83 yo your mom

Hello, at 83 yo your mom would certainly know her mind and capabilities. It is absolutely her decision. I don't mean to be indelicate but consider that tumors can eat into major blood vessels, take up breathing space (or occupy space in the throat as they grow), cause excessive pain. It's hard for others to deal with this reality. Just be sure to have a good palliative support program (now as opposed to later) so that your dear mom will have the end of life care that she needs and deserves- you seem to be on top of that!. As for her decision, she is in a difficult situation due to age no matter what her choice. I think radiation would be very hard on her and if it were my mom I'd support her fully as you are. God bless.

accordiongirl · October 2018

Curlyn said:
Hello, at 83 yo your mom
Hello, at 83 yo your mom would certainly know her mind and capabilities. It is absolutely her decision. I don't mean to be indelicate but consider that tumors can eat into major blood vessels, take up breathing space (or occupy space in the throat as they grow), cause excessive pain. It's hard for others to deal with this reality. Just be sure to have a good palliative support program (now as opposed to later) so that your dear mom will have the end of life care that she needs and deserves- you seem to be on top of that!. As for her decision, she is in a difficult situation due to age no matter what her choice. I think radiation would be very hard on her and if it were my mom I'd support her fully as you are. God bless.

Thank you

Yes, you are so right......mom is totally capable of making up her mind and no matter what she would choose, i would support her. The nurse at the radiation clinic told me once, 'Your mom has two bad choices. My heart goes out to you." And that's it in a nutshell - neither choice is great, in fact, both suck. So she made the choice that gives her the most "quality" time possibly. Mom's a smart lady, as far as i'm concerned. Hoping to meet with palliative care and hospice this week so we can ask the (million) questions we have and start to gain an understanding of what this journey might look like for her. And yes, i am kind of crossing my fingers that the tumor blows out mom's carotid artery and she's gone in an instant. i think that's far better than the prospect of it slowly choking off her air supply. The nurse was right......there are no good choices.

Curlyn · October 2018

accordiongirl said:
Thank you
Yes, you are so right......mom is totally capable of making up her mind and no matter what she would choose, i would support her. The nurse at the radiation clinic told me once, 'Your mom has two bad choices. My heart goes out to you." And that's it in a nutshell - neither choice is great, in fact, both suck. So she made the choice that gives her the most "quality" time possibly. Mom's a smart lady, as far as i'm concerned. Hoping to meet with palliative care and hospice this week so we can ask the (million) questions we have and start to gain an understanding of what this journey might look like for her. And yes, i am kind of crossing my fingers that the tumor blows out mom's carotid artery and she's gone in an instant. i think that's far better than the prospect of it slowly choking off her air supply. The nurse was right......there are no good choices.

Palliation has come so far

Palliation has come so far now. It's my opinion that medications can make a big difference and planning what to do when the worst begins to happen (ie. increase all those meds even if it means that she sleeps a lot) so everyone is prepared and knows what to do. It's possible that your mother might even change her mind as a treatment option at that point? It takes so much courage to do it her way and she is lucky to have family support. Please keep us updated.

Drivingdaisy · February 2019

Venting

vent all you need, this is a horrible situation. I am venting 3 yrs later,, I am so mad. Was pressured into making & doing treatment ASAP with no time to reasearch, educate or get 2 nd opinion. Yes I am A 3 year Survivor//warrior but been paying for the last 3 yrs with all the side effects from Treatment. I have NO quality of life, miserable & sucidal. Yes, I have a family & 2 adult kids. They don’t get it, they don’t live in chronic misery. Wish I would Never have taken treatment. Had to deal with 2 or of the 3 downhills without treatment. Personally would have tried to continue living LIFE before the Cancer Truely got hold. End of life care made My Mom so comfortable with drugs.....would have worked for me. All I am now is a bitter 61 yr off with so many issues from Rads & Chemo, I even hate being around myself. If your Mother is at pease with her decision, respect it. She has to live it & the pain ( treatment hurts) NOT you. I know hard for you but your Mother will be the one suffering. My opinion.

accordiongirl · February 2019

Drivingdaisy said:
Venting
vent all you need, this is a horrible situation. I am venting 3 yrs later,, I am so mad. Was pressured into making & doing treatment ASAP with no time to reasearch, educate or get 2 nd opinion. Yes I am A 3 year Survivor//warrior but been paying for the last 3 yrs with all the side effects from Treatment. I have NO quality of life, miserable & sucidal. Yes, I have a family & 2 adult kids. They don’t get it, they don’t live in chronic misery. Wish I would Never have taken treatment. Had to deal with 2 or of the 3 downhills without treatment. Personally would have tried to continue living LIFE before the Cancer Truely got hold. End of life care made My Mom so comfortable with drugs.....would have worked for me. All I am now is a bitter 61 yr off with so many issues from Rads & Chemo, I even hate being around myself. If your Mother is at pease with her decision, respect it. She has to live it & the pain ( treatment hurts) NOT you. I know hard for you but your Mother will be the one suffering. My opinion.

Thank you.....and i'm sorry

Drivingdaisy - i appreciate the time you took to respond to my post from last fall. i am deeply sorry to hear about all you have endured as a result of your cancer/treatment - it is a brutal disease, for sure, and NO ONE should be pressured into making such major health decisions without the chance to research some things (with the possible exception of an active heart attack, stroke, or bleeding out). It's disheartening to hear that you survived your treatment and yet you suffer so. i know i am helpless to do anything for you, but please know i heard you and i am so sorry you are dealing with such a painful aftermath - that has got to be so hard for you. i have had wonderful help from therapists when i've encountered challenges that i didn't know how to deal with.....and they LISTEN, which i needed so much during that time. i would encourage you to find a resource like that for yourself - you deserve to have someone listen, hear you, support you, and walk with you through these hard times. If your family is unable to do so (for whatever reason), then gift yourself with a skilled therapist who you are comfortable with and see if they can help you ease your angst - you deserve to have relief (and NOT in the form of suicide......please fight that urge with all you have).

My mom is totally at peace with her decision to not seek treatment and i support her 100% in that decision, even though we're entering tougher times and it's hard to see her struggle......i still know that she made the right choice for HER. It's not the right one for everyone, to be sure, but for mom it's absolutely the right one. And her hospice team has been amazing - and we're still in the "easy" part of all of this.....i have confidence that they will continue to be amazing even in the darkest of times that await us. It's a unique honor to walk by my mom as we face the last months of her life - KNOWING that it is indeed her final months. My responsibility to mom is to do whatever SHE needs in order to be comfortable, safe, and happy. If she wants pain meds, she can have them. If she wants to stay in her jammies all day, so be it. If dinner is yogurt and a malt, fine by me. If she wants to get out of her apartment and go for a ride, the car is ready. i spend a good share of my private time struggling with the realities of it all - and yes, i feel sorry for myself that i'm watching my mom die - but i refuse to let her see any of that. i refuse to make her take on my pain. i will not allow myself to make it about me when i'm with her. i hope that what i'm doing and how i'm helping her IS helpful to her and comforting, too. That is my goal - to make mom as comfortable, happy, and pain-free as i possibly can. She's my mom...and she deserves that.

Take care of yourself, Drivingdaisy, and PLEASE consider talking to a counselor or a therapist of some sort. i think you'll find relief in being able to talk through all of things you have going on, especially with someone who CAN be there for you. You deserve it. You deserve peace.

~ accordiongirl

Venting....and has it happened to anyone else?

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