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Topic: When do I tell my mother that treatments are not working anymore

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Sep 23, 2020 01:09PM

handeadiguzel wrote:

Hello everyone,

I know that this is a difficult topic to talk about. My mother (age 57) has stage 4 breast cancer spread to her liver. She has been through many different chemotherapy treatments. She had a radiofrequency ablation (RFA) operation to destroy the inoperable tumors and metastases in the liver. And then a laparoscopic liver resection surgery to remove the part of her liver that contained the tumors. She had chemo before and after her surgeries.

No mater what her doctors tried her cancer keeps coming back. Recently we learned that her cancer has progressed and the doctors do not recommend any more treatment at this point. She still can do her everyday tasks, she feels good and happy. However, neither my mother nor my father knows about her progression. And I am very anxious about when to tell them that she's getting close to the end.

If I was in her shoes, I would definitely want to know. I think every person has the right to know. Sometimes I think it's better to tell her while she still has energy to do things but then I don't want to make her depressed cause she's happy now. I'm also afraid that if she learns at later stages I would take away her ability to do the things she would want to do one last time otherwise.

I was wondering if anyone was in a similar position and could give me some advice. Is it possible for a person to accept their situation and enjoy their last days peacefully?

And I am so sorry if my post was upsetting to anyone.

Thank you 🙏

I am a caregiver. Diagnosis belongs to my mother. Dx 4/2018, Right, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2- Chemotherapy Adriamycin (doxorubicin), Carboplatin (Paraplatin), Gemzar (gemcitabine), Halaven (eribulin), Navelbine (vinorelbine), Taxol (paclitaxel) Surgery Mastectomy: Right
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Sep 23, 2020 01:13PM santabarbarian wrote:

How is it possible you know, and she does not?

She has a right to know her own condition. Something seems off here.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Sep 23, 2020 01:17PM exbrnxgrl wrote:

I asked that same question on the other thread the op started

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Sep 23, 2020 01:32PM LillyIsHere wrote:

In many cultures, doctors don't tell their patients when they are dying. They believe the hope is powerful and keeps patients happy longer than waiting to die. However, family members are notified and they choose to tell or not their loved one who is dying.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Sep 23, 2020 01:57PM handeadiguzel wrote:

My mother's primary caregiver is her older sister. And she loves my mother like her child. So far, she did not want my mother to know the sad truth. She kindly asked her doctors to give all the information to us and leave my mother out of the loop. So far I trusted my aunt's life experience (I'm 30 and she's 60) and respected her will to protect my mother.

Of course my mother will figure it out once she starts feeling her symptopms. But right now she feels happy and healthy. That is why I posted the question cause it is a very difficult decision to make and it's giving me anxiety.

There is nothing off here. I don't know if this is a cultural difference but like @LillyWasHere said, our doctors are just respecting our decision to protect my mother and to keep her hopeful and happy.

I am a caregiver. Diagnosis belongs to my mother. Dx 4/2018, Right, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2- Chemotherapy Adriamycin (doxorubicin), Carboplatin (Paraplatin), Gemzar (gemcitabine), Halaven (eribulin), Navelbine (vinorelbine), Taxol (paclitaxel) Surgery Mastectomy: Right
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Sep 23, 2020 02:32PM - edited Sep 23, 2020 02:37PM by handeadiguzel

I don't know if I made a mistake by asking this question. I believe that concepts like end of life or death needs to be more normalized cause all humans are going to experience it. I am an only child and have no other people to talk to or ask for advice. So I joined this forum and thought that people might be going through similar experiences and I might find some support here. That is not how I feel right now.

I always feel sad when people ask where we live or mention cultural differences cause they automatically assume things are better in western countries and we probably live somewhere where things are off and the doctors are keeping secrets from their patients. Does it really matter where we're from ? We're all human and going through the same thing. The doctors in your countries might be more concerned about legal issues such as being sued by a patient if they don't tell the truth. Here they don't I guess, I don't know. And I don't care if something is off about the healthcare system here. I just wanted advice and support.

My intentions were never bad when I posted this question and I still feel terrible for posting it on the wrong forum initially. And I apologize if I made anyone feel less hopeful about their recovery.

I decided not to post anymore cause it's making me more upset. Thank you for your advice and good wishes.

I am a caregiver. Diagnosis belongs to my mother. Dx 4/2018, Right, 6cm+, Stage IV, metastasized to liver, ER-/PR-, HER2- Chemotherapy Adriamycin (doxorubicin), Carboplatin (Paraplatin), Gemzar (gemcitabine), Halaven (eribulin), Navelbine (vinorelbine), Taxol (paclitaxel) Surgery Mastectomy: Right
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Sep 23, 2020 03:10PM santabarbarian wrote:

It is a valid question, don't apologize!, but just shocking to American ears, and especially the women who are on this site where they *get information about their condition*!

I am very sorry for the situation you are in. One lie begets another and you got stuck through your Aunt's initial decision. If you decide to back out of the lie you can always simply ask the doc to issue the update on progression.

Make sure she has had the treatments that exist. A ton is in clinical trial and she might qualify...

I'd think about the level of honesty that you want for your relationship with your Mom over the next months or years. Do not feel obligated to keep your Mom in the dark just because your Aunt thinks it's better. The closest people are you and your Dad and your Aunt is making you lie and keeping your Dad in the dark. She sounds controlling. (She may be both loving and controlling).

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Sep 23, 2020 03:24PM ctmbsikia wrote:

Having cared for a stage IV terminal person (my husband) there was never a time that he wasn't the one making the decisions.

What is the plan when she does start failing health wise? Will your Aunt tell her then? What will she do if she needs to go to a hospital? How do you keep all those people treating her from telling her? Would you and your Aunt want her to find out from a stranger?

Lots of questions. I'm not saying it is wrong of you not letting her know right now, especially if she if well. I would though most definitely have a conversation with your Aunt on choosing to tell her. Sooner rather than later. Later it's going to be much harder. Just my opinion. No judgement.

Very sorry to hear.


Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/30/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/10/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Sep 23, 2020 03:36PM LillyIsHere wrote:

These are called "while lies" and not meant to hurt the person who is sick. I wished I wouldn't have known about my cancer and live happy during the time I feel OK. I would just get doctor's treatments and move on with my life. Now, I am scared of any pain or unusual change in my body. Now I feel like a prisoner who is waiting the death sentence. However, everybody is different.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Sep 23, 2020 03:44PM MinusTwo wrote:

Hand - no need to back out. We will try to support you. But did you change your "name"? Like ex-brn - I too remember reading some long involved discussions on a different thread - but they don't show up under this name. '

I don't know that the differences have to be cultural or ethnic - although there are societies where women are more sheltered. I do think there are generational issues. I remember hearing my Mother and her Sister in the 1950s whispering about their Mother. They wanted to protect her from worrying about an aunt's health issue. I was told to forget I ever heard that & not tell Grandma.

Most of us are older than you. And I'm old enough to be your grandmother. I expect many of us fought hard to have the right to have credit cards in our own name, learn our own medical history, and yes - even to vote our own choices. Sometimes we tend to be extremely outspoken about what we have the right to know, and would be horrified if any doctor betrayed our personal trust and went behind our backs to tell someone else about our own bodies and lives.

If it was you posting on the other thread, I hope you will think about all those answers. Some were very good. And think about what Santa Barbara said above. You need to determine the level of honesty you want to have with your Mother for whatever time she has left.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 23, 2020 05:31PM - edited Sep 23, 2020 05:32PM by exbrnxgrl

handeadiguzel,

I think you have misinterpreted comments regarding cultural differences. People only mentioned differences, no one mentioned that western culture is better at all! I am not sure if your own perceptions put that interpretation on it but I think you need to understand that different simply means not the same.

Yes, there are many legal rights that patients have in some countries that may not exist in others and that certainly drives who is told what. In the US, even if the doctor is a family member the patient has the right to be told about their medical condition so they can fully participate in all medical decisions.

In terms of telling your mother about her condition, unless she is very mentally fragile, my personal opinion is to be honest as soon as possible but you know your mother best. I am not sure how you will avail yourself of services such as palliative and hospice care without her knowing the truth. Most of us never face this situation since our laws require that we, as patients, be fully informed

Lastly, you are always welcome here but understand that if you ask for opinions you may get some that you disagree with. No one is judging you nor is anyone saying western ways are better but you asked for opinions and they have honestly been given. It is true that many of us live in countries with strong laws governing patients rights so our opinions spring from our own experiences. So please understand that the idea of not telling a patient about their own medical condition seems more than unusual, it's illegal in many of the countries we come from. Take care.


Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

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