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when your loved one refuses chemotherapy

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Anijet
Anijet Member Posts: 30
edited February 2020 in Triple-Negative Breast Cancer

my mother (71years) was diagnosed with tnbc, she refuses chemotherapy, surgery was done on 18 july (mastectomy)of the left breast, histology result after surgery is T2N1M0, I don't know what to do:(

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  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited August 2019
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    Is she afraid of suffering the side effects? I did not find chemo all that bad, truthfully. Exhausting mostly but I let myself sleep it off. I was scared of having horrible effects but it turned out nowhere near as bad as I was imagining.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    Thank you for your answer!

    Yes, she is scared and she is very emotional, she also has some health problems, internal cranial pressure, varicose veins,and she is very allergic,etc,,I wonder if here are patients who refused chemo treatment, and is there any other option without chemo?

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited August 2019
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    You can have radiation without chemo.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    Is radiation therapy is easier than chemo?and can it be done after radical mastectomy?


    Thamk you Santanarbaria

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited August 2019
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    It can be done after MX (to lymph nodes, etc.-- and it is a lot easier than chemo for most people.

  • DiagnosisDisruption
    DiagnosisDisruption Member Posts: 20
    edited August 2019
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    Chemo is not what it was ten years ago. I worked at an elementary school through chemo. Yes, I was fatigued and "off", but I never once threw up. They had me so dialed in with the meds that, a year out, the only side effect is my stamina isn't as good. I also went through a pretty drastic year so I'm going to stick with that for a reason.


  • elainetherese
    elainetherese Member Posts: 1,625
    edited August 2019
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    Well, your Mom had the surgery, which is good. In fact, in some cases, surgery is enough. Now, your Mom was triple negative, and yes, chemo is advised. What regimens have her doctors proposed? Some are harsher than others. For example, Taxol was easier for me than Adriamycin + Cytoxan. Would your Mom agree to a relatively gentle chemo?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited August 2019
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    Anijet, how involved are you with your mother's treatment? Are you going with her to her appointments? Is she asking you for advice and your recommendations? Or is she handling this herself? Other than breast cancer, does she make all her own decisions and manage her own affairs? All this makes a difference in what you should do and how involved you should be because ultimately, this is her decision.

    The most important pieces of information your mother needs to make this decision are 1) what is her risk of mets without chemo? and 2) how much will chemo reduce this risk? Then she gets to decide if the risks and side effects from chemo are worth it to her, based on the level of risk she faces without chemo and the amount of risk reduction benefit she will get from chemo. This is information that her Medical Oncologist should provide. Do you know if your mother has this information?

    There are a couple of models available on-line that provide an estimate of these figures:

    https://breast.predict.nhs.uk/tool

    http://www.lifemath.net/cancer/breastcancer/therapy/index.php

    Hope that helps!

    And a suggestion... you should update/revise the diagnosis line in your profile. I am assuming this represents your mother's diagnosis. With an invasive tumor, your mother's diagnosis is not Stage 0 DCIS. She might have some DCIS along with the invasive cancer (that's very common), but other than surgical removal, the DCIS is pretty much irrelevant because it is the less serious condition. Your mother's diagnosis is IDC (invasive ductal carcinoma) and based on being T2N1M0 is probably Stage IIB, or using the new staging criteria, is possibly Stage IIIA because of being TN.



  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    Dear Beesie,

    I am very involved in my mom's treatment, as I said that she is a very emotional person, she saw many women in the hospital, of course, without hair, with damaged nails and pain after or during chemotherapy, so she is very scared (just like me) I do not want to torment her and want to spend the best time with her, during her last period of life, we hope that he will be able to hold out for at least one year with her 3 grade of course, I am looking for her smooth treatment, but as I read and heard, most chemotherapy has side effects . she even suffers from a runny nose and becomes hysterical because of any pain or problem, so I am sure that she will not suffer chemistry, I agree to go with her to the end in her treatment if she wants, but she refused. We have an appointment with chemo Dr. on 12 of August. I used predictive tools and it says that she had 79% survival rate with surgery only and 82% 83% with chemo at her age

    I will fix info in my profile.

    Thank you very much for all your comments

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    Dear Elaine,

    We will have an appointment with Dr. on 12 August, and will see..,

    Thank you

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited August 2019
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    Anijet, your mother is 71. You mention she has internal cranial pressure - this is a very serious health condition. Is your mother's condition chronic, and how is it being treated? I have no idea about this, but I would wonder if chemo is contraindicated for someone who has this as a chronic condition. Is it expected that this condition is going to shorten her life, or has this been managed and is she fine now?

    Most 71 year olds have many years ahead of them - my mother was diagnosed with breast cancer at the age of 80, and she's 95 now. You are writing as though your mother has only a short time left, so is she in otherwise poor health? If that's the case, then I can understand why she wouldn't want to put herself through chemo.

    Looking only at this breast cancer diagnosis, the information you say you got from the predictive tools suggests that, other health issues aside, your mother has an almost 80% chance of surviving this cancer - with surgery alone. So your comment "we hope that she will be able to hold out for at least one year with her 3 grade of course" seems out of place and is inconsistent with the information you got from the predictive model. From what you say those predictive tools told you, chemo might provide only an additional 3% - 4% survival benefit. For someone older who has other health conditions, it's certainly valid to question whether to go ahead with chemo for such a relatively small benefit.

    If your mother has not even talked to the Medical Oncologist yet, this discussion is premature. The MO should recommend chemo, or not recommend chemo, based on your mother's overall health, with consideration to any other health conditions that she has, and with consideration to the benefit that she will receive from the treatment vs. the health risks she will expose herself to from the treatment. With a diagnosis similar to your mother's, most patients who are younger and healthy would certainly get a strong recommendation to have chemo. But given your mother's age and other health conditions, it's premature to assume what the MO will recommend chemo or how strongly he/she will recommend chemo.

    Let us know how it goes at that appointment.


  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    The surgeon and attending therapist recommended chemotherapy, but due to the fact that she refuses chemo and she is sure that she will suffer it hard, they do not insist, we have an appointment with MO next week.For example, today on her body appeared 3/4 small pimple / blister, and she was already in hysterics, I do not even want to imagine what will happen to her when her hair begins to fall, etc

    She wants to live, but does not want to have any pain.I know her very well, and I am kinda sure that she will not survive the treatment, because, as I was told, she will need the most aggressive chemo, ( because of TNBC grade 3)she will have to undergo treatment from 7 months to a year, and no one can guarantee that she will live another 15 year.

    if she does not agree to aggressive treatment, and the MO will not be able to offer her something easy, I will do everything for her to spend her years in joy, we will travel and relax ...,

    the surgeon mentioned medication xeloda,( which is easier than other drugs) but and when she read about the side effects, she refused immediately.


    How can I read conclusion, This is stage 2?

    2 malignant nodules were found and removed, 2,5x2x2cm and 1,9x1,5x1,5cm

    Ductal in Situ

    pTNM - pT2multi pN1mi pMx pro pLV1 (AJCC cancer staging 8th edition)

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited August 2019
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    I had a less-frequently-prescribed TNBC chemo. Carboplatin & taxotere. Carboplatin is very good against basal-like TNBC. (Basal or basal-like TNBC is generally high grade). You do not generally lose hair taking carboplatin alone. Taxotere will make hair fall out but icing scalp can mitigate this. Treatment is more brief (6 doses, given every 21 days = 4 mos).

    For me, I had some GI issues, solved by fasting. I had some fatigue and anemia, which I bounced back from for 2 out of the 3 weeks between chemos, until the last two, when I did not bounce back all the way any more but stayed lowish. So I slept, napped binged TV etc during the low part. But kept up a routine of pilates and walking and hiking through the first 4 treatments and picked back up abut 3 weeks after the last one. so about 8 super low energy weeks in 4 months is a decent ratio.

    I do not know if the underlying conditions your mm has might be incompatible w chemo though, and of course it IS her choice no matter what..... but it's about 6 months of treatment, against maybe another 10-15 likely years. Maybe her chronic conditions make life less fun and less to be clung to.

    I too reserve the right to refuse any treatment when the risk to benefit analysis does not cut it for me personally and your Mom has this right as well I would say your role is to be loving and encouraging but not browbeating. You can help see that she receives accurate info and emotional or psychological support, and can make a well informed choice. They can usually give ativan which is an anti anxiety drug and she may benefit from this. Or from a therapist.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    your info is very helpful, i will make an update asap,tomorrow i will take Mom to take off lymph and ask Dr about her pimpels/blisters

    I wish you long and happy life santabarbarian!


  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    Dear Wrenn, you are an angel! you made me so happy!

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    i really appreciate your help

  • Shelligirl
    Shelligirl Member Posts: 61
    edited August 2019
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    wrenn, you are an inspiration. Thank you

  • cowgirl13
    cowgirl13 Member Posts: 774
    edited August 2019
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    I'm 73 and 10 years out. I can't imagine being treated this way.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    happy for you! But 10 years ago you were 63

  • mountainmia
    mountainmia Member Posts: 857
    edited August 2019
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    Cowgirl, treated what way? I'm not at all clear what you mean. Anijet's mom wants to be the one to decide, and Anijet seems to want that for her.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    Hi Ladies,any advise?is it necessary to do a BRCA1 test if a close relative has triple negative cancer at 70 or after 70 y?

  • edj3
    edj3 Member Posts: 1,579
    edited August 2019
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    Age at time of dx has nothing to do with whether or not she's got the genetic mutation for breast cancer.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    I read that if you there is a mutation gene, breast cancer will be up a 60 years maximum, mostly at an earlier age, but not in 70th or more

  • godisone
    godisone Member Posts: 30
    edited August 2019
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    It was me! When after the stressful surgery i refused to undergo chemotherapy. My husband was shocked as all he could understand was this was an essential part of the treatment plan and there is no alternative to it. He is very protective about me and wont take no for an answer if my well being is concerned. When i declared to him about my decision to not undergo chemotherapy he just kept looking at me for a prolonged time , he couldn't say much out of disbelief. We did not speak for next 48 hours and then when i confronted him, he was again speechless and just said that treatment or no treatment he cant even think about losing me and his eyes fill up with tears. it took me no time to change my decision. though he himself spoke to the doctor during our next appointment if chemotherapy was necessary and if i could stop with the treatment if it doesnt suit me well. since that day he has been doing all the research on chemotherapy. he has also joined certain cancer community forums such as mycancersupportcommunity.org, https://www.voiceofcancerpatients.com/,https://www.cancersupportcommunity.org/ etc to talk to the patients like me and is very active on the communities. I am not sure he might be here https://community.breastcancer.org/ as well. I know you love me and i love you too honey.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    how are doing now godisone?

  • godisone
    godisone Member Posts: 30
    edited August 2019
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    Anijet , I was to start my first session in July but due to some family emergency i couldn't see the doctor and my next appointment is on 18th August now. i guess i will start soon after that. i am happy that i got more time to relax and spend time with my family.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    good luck to you and your family! Stay strong Dear

  • edj3
    edj3 Member Posts: 1,579
    edited August 2019
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    Anijet the reason for her to get tested isn't just her. It's you. If she's got that mutation, you have a higher chance of having it yourself. If you have it, any children you have also have a higher risk.

  • Anijet
    Anijet Member Posts: 30
    edited August 2019
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    even if she got a cancer after her 70? I need to make a test

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited August 2019
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    "Age at time of dx has nothing to do with whether or not she's got the genetic mutation for breast cancer"

    Not true.

    Breast cancer develops when our genes that control breast cells fail, eliminating the normal ability of our cells to protect against cancerous invaders. We are born with two of each gene. If one fails, the other can still protect us. Genes fail or become damaged for a myriad of reasons, including aging. This is why breast cancer is more common among older women - it's more likely as we get older that both copies of the gene will have become damaged. But for someone with a genetic mutation, they just need their one healthy copy of the gene to go bad in order to develop breast cancer. This can happen at any age. And this is why those who have a genetic mutation are more likely develop early onset breast cancer.

    Of course, not everyone who has a genetic mutation develops breast cancer, and some who do don't develop it until they are older. But for the older population, aging itself is much more likely to be the cause of breast cancer development than a genetic mutation.

    See the data in this study:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC33343...

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