What do I do when the person I love no longer wants treatment?

Sbfairy

Hi everyone,

I'm new to these boards. I have a mother with breast cancer. She was diagnosed with stage III A invasive ductal carcinoma. She's had surgery and has been in chemo since July. She has recently decided that she wants to stop all treament. When she told me I didn't think she was serious but she has recently told her doctors and refused chemo. She has one more chemo treatment to go plus radiation. I'm in total shock. I'm not sure what to say or do. She refuses to talk to me about her motivation for doing this. I want to support her and honor her decision but I just can't. I'm afraid I'm going to lose her. I have 3 younger sisters, the youngest is 16 (I'm 37). Anyone have any experience with this? What can I do? Should I keep pushing her to go back to treatment? Prepare for her eventual death? Since she won't discuss this with me I feel like I have no place to turn. Thanks for any advice anyone can give.

Marcia527

I was diagnosed as stage 3a
I was diagnosed as stage 3a in Aug. 2003.

If you can't support your mother's decision then continue to talk to her. You can give her encouragement without being pushy. Have conversations with her and try to draw her out. You know her temperament. A lot of what you say depends on your relationship with her and her mood. Try not to do anything that you will regret later. It sounds like she is almost finished with treatment (the chemo part was the hardest on me). It would be a shame not to finish but in the end it is her decision. The important thing is to retain a good relationship with her and know that you tried. I'm sorry you are having this problem. I hope this helps.

zahalene

This is a tough one.
This is a tough one. (Unfortunately, there aren't many easy ones here).
You and your sisters may not be the ones who can best counsel your mother on this issue. There is just no way to keep the emotional and personal factors from over-riding any other-wise rational conversation you may have with your mother.
Professional and/or medical counseling might help open your mother's mind to a re-consideration of her options. If she has been brought low by the chemo she has been undergoing (as most of us are), depression may very well be playing a part in her decision to stop treatment. I know I was close to stopping my treatments but can see now what a mistake that would have been for my particular situation. But at the time I couldn't see that.
If your mother has religious counsel in her life that she trusts, those people might be able to bolster her courage and help her find the strength to continue.
I admire your desire to honor your mother and support her decision. But it is also honor to help her connect with every positive source of influence you possibly can when the stakes are this high.
God bless. Please continue to keep us aware of how things progress and give us opportunity to help and uphold you in any way we can.

Sbfairy

zahalene said:

This is a tough one.
This is a tough one. (Unfortunately, there aren't many easy ones here).
You and your sisters may not be the ones who can best counsel your mother on this issue. There is just no way to keep the emotional and personal factors from over-riding any other-wise rational conversation you may have with your mother.
Professional and/or medical counseling might help open your mother's mind to a re-consideration of her options. If she has been brought low by the chemo she has been undergoing (as most of us are), depression may very well be playing a part in her decision to stop treatment. I know I was close to stopping my treatments but can see now what a mistake that would have been for my particular situation. But at the time I couldn't see that.
If your mother has religious counsel in her life that she trusts, those people might be able to bolster her courage and help her find the strength to continue.
I admire your desire to honor your mother and support her decision. But it is also honor to help her connect with every positive source of influence you possibly can when the stakes are this high.
God bless. Please continue to keep us aware of how things progress and give us opportunity to help and uphold you in any way we can.

Thanks for your responses.
Thanks for your responses. My mother has been extemely sick from the taxotere she is taking. Her first four rounds of chemo she was on cytoxan and doxyrubicin and the side effects were manageable, but the longer she is on taxotere the worse she becomes. Her wbc is low, she's tired, she can't taste her food and she has a bad case of chemo brain. She is defintely depressed and just isn't herself. I suspect that is what is behind this decision. That she just wants to feel better. She told me that she thought if she had to go through another taxotere treatment she would die. The worst part for me is that I live in Ca and my mom lives in Indiana. So I cannot be with her as much as I'd like. Zahalene's post makes a lot of sense in that perhaps she needs to discuss her options and decisions with her oncologist or a therapist. I think my next step is to encourage her to do this. So far she's only left a message with her doctor and cancelled her latest chemo. She won't talk to anyone, I think because she thinks we will try to change her mind. I just want her to make informed decisions. I do appreciate your responses as my anxiety level is through the roof these days.

cabbott

Sbfairy said:

Thanks for your responses.
Thanks for your responses. My mother has been extemely sick from the taxotere she is taking. Her first four rounds of chemo she was on cytoxan and doxyrubicin and the side effects were manageable, but the longer she is on taxotere the worse she becomes. Her wbc is low, she's tired, she can't taste her food and she has a bad case of chemo brain. She is defintely depressed and just isn't herself. I suspect that is what is behind this decision. That she just wants to feel better. She told me that she thought if she had to go through another taxotere treatment she would die. The worst part for me is that I live in Ca and my mom lives in Indiana. So I cannot be with her as much as I'd like. Zahalene's post makes a lot of sense in that perhaps she needs to discuss her options and decisions with her oncologist or a therapist. I think my next step is to encourage her to do this. So far she's only left a message with her doctor and cancelled her latest chemo. She won't talk to anyone, I think because she thinks we will try to change her mind. I just want her to make informed decisions. I do appreciate your responses as my anxiety level is through the roof these days.

Fighting Cancer
I agree that it would be good for her to talk with her oncologist and perhaps the hospital medical social worker or other therapist about her decision. My oncologist referred me to their hospital social worker once and she was terrific. She got me in touch with a support group in my hometown. The group was about 100 miles from the hospital where I was going for treatment but only about 4 miles from my house. I was impressed. Also I needed the help at the time and she understood where I was coming from. Fighting cancer is a tough battle and it helps to have support of fellow survivors and therapists who understand. It doesn't take long to read on this discussion board about all the problems fighting cancer can bring. The cool things about support groups and discussion boards like the ones here are all the neat ideas folks share about how to cope. But sometimes you need actual medical help and advice from a specialist. Maybe there is something the oncologist or one of his buddies can do to make the side effects less taxing. Depression, chemo brain, and low wbc can all be treated. Also, they can help her make an informed decision on what dropping the last chemo might do to the success of her treatment. It is not like she hasn't had any treatment. Each treatment does some good at killing off the enemy. The treatments have to be spaced out to limit the harmful effects to the patient. They space the treatments out the way they do in order to catch the cancer cells when they are likely to be the most vulnerable based on the way they usually divide and grow. They determine how many of these treatments are necessary by what seemed to work best on groups of other patients. It has a lot to do with probability and statistics and mathematical models that researchers have checked out. The doctors make their recommendations based on these models so that their patients have the greatest probability of success. But the reality is that many people are unable to complete the entire course of chemotherapy because of side effects. It may lower their chances of beating cancer as a group but group statistics do not describe the individual. I'd never recommend quitting treatment early if there was any other possibility. I know I personally want to do all I can to "beat the beast", so to speak. But sometimes the side effects are more than the patient can tolerate. The oncologist would be the most capable person of evaluating exactly what the risks would likely be for her kind of cancer if she stops chemotherapy now. He or she would also be the best one to suggest what other treatment might be used to maximize her continued success if she stops chemo. Chemo is not the only kind of cancer treatment, even though it is the probably the most effective treatment out there after surgery, especially for more aggressive forms of cancer. I hope she will consider talking to her oncologist and a therapist so that she can make an informed decision. It will make her feel better about what she is doing rather than just feeling like she is giving up, no matter what she decides. Good luck!

TammyLouBob

cabbott said:

Fighting Cancer
I agree that it would be good for her to talk with her oncologist and perhaps the hospital medical social worker or other therapist about her decision. My oncologist referred me to their hospital social worker once and she was terrific. She got me in touch with a support group in my hometown. The group was about 100 miles from the hospital where I was going for treatment but only about 4 miles from my house. I was impressed. Also I needed the help at the time and she understood where I was coming from. Fighting cancer is a tough battle and it helps to have support of fellow survivors and therapists who understand. It doesn't take long to read on this discussion board about all the problems fighting cancer can bring. The cool things about support groups and discussion boards like the ones here are all the neat ideas folks share about how to cope. But sometimes you need actual medical help and advice from a specialist. Maybe there is something the oncologist or one of his buddies can do to make the side effects less taxing. Depression, chemo brain, and low wbc can all be treated. Also, they can help her make an informed decision on what dropping the last chemo might do to the success of her treatment. It is not like she hasn't had any treatment. Each treatment does some good at killing off the enemy. The treatments have to be spaced out to limit the harmful effects to the patient. They space the treatments out the way they do in order to catch the cancer cells when they are likely to be the most vulnerable based on the way they usually divide and grow. They determine how many of these treatments are necessary by what seemed to work best on groups of other patients. It has a lot to do with probability and statistics and mathematical models that researchers have checked out. The doctors make their recommendations based on these models so that their patients have the greatest probability of success. But the reality is that many people are unable to complete the entire course of chemotherapy because of side effects. It may lower their chances of beating cancer as a group but group statistics do not describe the individual. I'd never recommend quitting treatment early if there was any other possibility. I know I personally want to do all I can to "beat the beast", so to speak. But sometimes the side effects are more than the patient can tolerate. The oncologist would be the most capable person of evaluating exactly what the risks would likely be for her kind of cancer if she stops chemotherapy now. He or she would also be the best one to suggest what other treatment might be used to maximize her continued success if she stops chemo. Chemo is not the only kind of cancer treatment, even though it is the probably the most effective treatment out there after surgery, especially for more aggressive forms of cancer. I hope she will consider talking to her oncologist and a therapist so that she can make an informed decision. It will make her feel better about what she is doing rather than just feeling like she is giving up, no matter what she decides. Good luck!

Negotiate for change.
I have no medical training.

It sounds like your mother is at the end of her rope. Depressed. Sick. (Thinks she's gonna' die anyway).

Been there.

Sometimes, it's time to call it a day.

Maybe what she really needs is to skip that last chemo.

And, get to feeling better.

Right now, she may feel that she has no quality of life.

It's a long story, but I did start thinking along the lines of, "If you do save my life, what do I have?" The misery of treatment, I understood. The pain and misery of my recovery was shocking and unexpected and prolonged. It just went on and on and on and it was day after day, month after month and year after year where things just didn't seem to get better.

So, I think I get it.

I think you need to make a new proposition, "Mom, I can see that this chemo (Taxotere) is making you miserable, and I agree...we need to stop."

But, radiation, although not pleasant (y'a gotta' get naked and it's humiliating, etc.) should not be so hard on your mother.

Her cancer is Stage III, she probably needs the rads.

The chemo has demoralized her...she has given up.

I think if you can find a way to support part of her decision (stopping the Taxotere), she will understand that you hear her.

It always the patients' right to refuse treatment. Any, all, part, or some.

Since it's the chemo that has got her...then, that needs to be the culprit.

Radiation and possibly hormonals can go a long way toward extending your mother's life.

Hopefully, when she (physically) feels better...she will feel better emotionally.

Nobody wants to be the cancer patient.

Tammy Lou

base61ball

TammyLouBob said:

Negotiate for change.
I have no medical training.

It sounds like your mother is at the end of her rope. Depressed. Sick. (Thinks she's gonna' die anyway).

Been there.

Sometimes, it's time to call it a day.

Maybe what she really needs is to skip that last chemo.

And, get to feeling better.

Right now, she may feel that she has no quality of life.

It's a long story, but I did start thinking along the lines of, "If you do save my life, what do I have?" The misery of treatment, I understood. The pain and misery of my recovery was shocking and unexpected and prolonged. It just went on and on and on and it was day after day, month after month and year after year where things just didn't seem to get better.

So, I think I get it.

I think you need to make a new proposition, "Mom, I can see that this chemo (Taxotere) is making you miserable, and I agree...we need to stop."

But, radiation, although not pleasant (y'a gotta' get naked and it's humiliating, etc.) should not be so hard on your mother.

Her cancer is Stage III, she probably needs the rads.

The chemo has demoralized her...she has given up.

I think if you can find a way to support part of her decision (stopping the Taxotere), she will understand that you hear her.

It always the patients' right to refuse treatment. Any, all, part, or some.

Since it's the chemo that has got her...then, that needs to be the culprit.

Radiation and possibly hormonals can go a long way toward extending your mother's life.

Hopefully, when she (physically) feels better...she will feel better emotionally.

Nobody wants to be the cancer patient.

Tammy Lou

Taxotere is evil
I can relate whole heartedly to your mother's problem with taxotere. I stopped the taxotere after one treatment due to the severity of the reaction. I was taking two strong pain pills every four hours and it didn't touch the pain from it. My oncologist said I was her first patient to have a reaction so severe. I did however, continue with the radiation and finished recently. It took 16 days before I could walk after the taxotere - still losing toenails and not sure about the fingernails - in addition toes are still numb from time to time. Let her know that the radiation is manageable - you get tired but not like the taxotere. There is time between when chemo stops and the radiation starts to recover somewhat. I'll be praying for her

Marcia527

TammyLouBob said:

Negotiate for change.
I have no medical training.

It sounds like your mother is at the end of her rope. Depressed. Sick. (Thinks she's gonna' die anyway).

Been there.

Sometimes, it's time to call it a day.

Maybe what she really needs is to skip that last chemo.

And, get to feeling better.

Right now, she may feel that she has no quality of life.

It's a long story, but I did start thinking along the lines of, "If you do save my life, what do I have?" The misery of treatment, I understood. The pain and misery of my recovery was shocking and unexpected and prolonged. It just went on and on and on and it was day after day, month after month and year after year where things just didn't seem to get better.

So, I think I get it.

I think you need to make a new proposition, "Mom, I can see that this chemo (Taxotere) is making you miserable, and I agree...we need to stop."

But, radiation, although not pleasant (y'a gotta' get naked and it's humiliating, etc.) should not be so hard on your mother.

Her cancer is Stage III, she probably needs the rads.

The chemo has demoralized her...she has given up.

I think if you can find a way to support part of her decision (stopping the Taxotere), she will understand that you hear her.

It always the patients' right to refuse treatment. Any, all, part, or some.

Since it's the chemo that has got her...then, that needs to be the culprit.

Radiation and possibly hormonals can go a long way toward extending your mother's life.

Hopefully, when she (physically) feels better...she will feel better emotionally.

Nobody wants to be the cancer patient.

Tammy Lou

Excellent idea Tammy Lou
If you can get her to at least get radiation treatment. My doc said chemo doesn't get the cancer cells at the surgery site because there isn't a lot of blood flow there. That is why we get radiation also. It gets any stray cancer cells that surgery may have missed.

Joycelouise

Maybe your mother would
Maybe your mother would benefit from reading some of the posts on this site. There was a nice series about radiation and how, for many, it was not so bad. Also, following the posts of women as they moan through the ills but then celebrate the milestones can be very uplifting. It was for me. I hope this helps your mother. I wish you both well. love, Joyce

seof

I agree with all the above,
I agree with all the above, especially Joycelouise. I think it might be very encouraging to your mother if she could access this website and read some of the posts on here. Sometimes just knowing you are not alone, and others have made it through what you are experiencing can help. You are living far away from her, but does she have anyone who could help get her in touch with a support group? Maybe she could get in touch with ACS in her area. They can help her get in touch with a support group, folks to drive her to treatments, and other types of support.

Keep on keeping on, stay in touch with her. Let her know you are there and you love her whatever she decides. If cancer treatment is not a subject you can talk about, find another. Maybe send her a copy of a book you have read and see if she will read it, then you could discuss that, or talk about gardening, or whatever you can find that might be a shared interest.

Best wishes, seof

wow

"I want to support her and honor her decision but I just can't."

In all honesty, you have to. It's her decision. Chemo is so hard. It's the hardest thing I ever had to do and there were at least two times if not three (out of the four chemos I had to have) that I said I wasn't doing it anymore. My mom and husband encouraged me to, and by the time it was time for my next chemo I had my gloves back on ready to fight the cancer with the deadly cocktail, but it was very important for me to be able to say NO MORE, and to at least think, for a week, that I was not gonna do it anymore, no way no how.

I can't say your mom will be "okay" if she skips her last treatment, but I can't say she won't be okay either. There's nothing garanteeing that it will work for her and if she does that last treatment she will never have cancer again, and that it won't come back or metastastisize. What is important is her quality of life. If she's too sick to do this and she calling it quits on the chemo then try your best to support her. But I would, like Tammy L Bob said, try to get her to commit to trying radiation.
Chemo sucked donkey balls for me. Radiation, however, was a breeze. Okay, besides it being a pain in the butt to go there every day. Other than that, it was sooo much easier than the chemo. And (for me) it was a plus cause I lost some weight.

I also think that if she's open to it that it would be good for her to read some of these posts or some information about radiation.

Again, just try to support her. You haven't walked in her shoes and hopefully you will never have to as far as cancer is concerned. What's she's dealing with is super tough. Please acknowledge that. She needs to know that you understand she's going through hell, and not having her feelings belittled. Please understand I'm not saying you are belittling her feelings, or doing anything of the sort intentionally. It's just that sometimes it can feel that way when everyone around you is saying "you can do it...don't stop the treatment". Caregivers and family need to know when to encourage, and when to step back a little and let the patient have some control.

Finally, just because your mom has stage 3 cancer does not mean you are going to lose her. There are a lot of great treatments out there that she may respond to very well. She may never have another cancer issue again. Try to stay optimistic. She does need to be smart and aggressive in her treatment, but 3A isn't a death sentence.

Stormy8281

I went through the same thoughts
Sbfairy,

I'm so sorry you are going through this trying time with your mother.

While I was going through the first session of chemo, I felt so sick, I told my family I wanted to stop the treatments. All I could think of is that it was my decision, but every member of my family told me I was making a terrible decision. While I was going through treatment, I felt I didn't have any control, but did have control as to whether or not to stop my treatment. I didn't like people telling my how foolish I was or, again, trying to tell me how I should handle this decision, how to live the rest of my life. There again, people were trying to make decisions for me. After having a lot of quiet time (because I used to hide in my bedroom if I didn't want to deal with people,....and by the way, that's normal) I realized I had to go on with my treatments.

This is a horrible time for your family, but it's a different kind of horrible for your mom. My mother and husband never thought they were doing enough for me, and I always worried about their feelings.

The only advice I can give to you is to hold your mom's hand and listen to her. Let her tell you how she's feeling. Don't push her into making a decision you want to hear. Just tell her you love her, and will be there for her no matter what choice she makes. This may take the pressure off of you and your mother, when she realizes she can make a decision for herself, and like I did, make the right decision by going on with her treatments.

By the way. Next Thursday, I have my last radiation treatment. I never thought I'd ever see that day.

Prayers and Hugs for you and your mom.

tasha_111

base61ball said:

Taxotere is evil
I can relate whole heartedly to your mother's problem with taxotere. I stopped the taxotere after one treatment due to the severity of the reaction. I was taking two strong pain pills every four hours and it didn't touch the pain from it. My oncologist said I was her first patient to have a reaction so severe. I did however, continue with the radiation and finished recently. It took 16 days before I could walk after the taxotere - still losing toenails and not sure about the fingernails - in addition toes are still numb from time to time. Let her know that the radiation is manageable - you get tired but not like the taxotere. There is time between when chemo stops and the radiation starts to recover somewhat. I'll be praying for her

base61ball Taxotere is evil
You are right there. Total body hair loss, chemo brain, dizzy spells, fingernails and toenails falling out and dead feet and fingertips. I wonder if it is these side effects that have me to the point of wondering if I want to live, or if it is just another side effect? To the lady who originally posted this thread, I am so sorry for your dilemma, you sound like a very caring daughter, Your Mum has been through the worst of this, radiation is a BREEZE next to chemo...I actually enjoyed it (somewhat) Maybe if she tried it for a while it would not have such magnitude, But I can understand her giving up on taxotere, I am 47 and I had a very hard job coping with it without becoming totally despondent. Wish her well.

NBoehmer

Hi I am 38 years old and
Hi I am 38 years old and just been diagonsed with invasive ductal carconima also. Just be there for your mom its a personal decission she has made if she only has 1 more treatment she should just go for it she has made it that far.Hopefully she will come through maybe with having the other treatments the doctor has told her they got all the cancer undercontrol now. who knows just sit down with her and talk thats so important to let her know how you feel.

artizan

When death seems easier than the cure...........
I recall moments of hopelessness thinking that dying would be easier than the treatment. I was depressed and anxious about everything. We were in the middle of restoring an old home while living in a house that was on the market. I had 3 teenage children. It was a very tough time. Your mom certainly needs to talk to her oncologist about her feelings. I know I was put on an antidepressant. It was not a wonder drug but it seemed to help take the edge off.

I am so thankful that I didn't give in to those negative thoughts and feelings. I agree that it may be helpful for your mom to join a support group or join us here. I never went to a support group but I do find some kindred spirits here.