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Topic: when your loved one refuses chemotherapy

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Aug 3, 2019 03:35PM

Anijet wrote:

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:(

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 3, 2019 03:39PM santabarbarian wrote:

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.

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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Aug 3, 2019 03:52PM Anijet wrote:

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?

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 3, 2019 04:03PM santabarbarian wrote:

You can have radiation without chemo.

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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Aug 3, 2019 04:22PM Anijet wrote:

Is radiation therapy is easier than chemo?and can it be done after radical mastectomy?


Thamk you Santanarbaria

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 3, 2019 04:36PM santabarbarian wrote:

It can be done after MX (to lymph nodes, etc.-- and it is a lot easier than chemo for most people.

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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Aug 3, 2019 05:44PM DiagnosisDisruption wrote:

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.


Dx 12/8/2017, IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Targeted Therapy 1/22/2018 Herceptin (trastuzumab) Chemotherapy 1/22/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 1/23/2018 Perjeta (pertuzumab) Surgery 5/22/2018 Lumpectomy: Left Surgery 6/12/2018 Lumpectomy: Left Radiation Therapy 7/18/2018 Whole-breast: Breast Hormonal Therapy 10/9/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 3, 2019 06:07PM ElaineTherese wrote:

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?

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Aug 3, 2019 09:05PM Beesie wrote:

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.



Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Aug 4, 2019 12:58AM - edited Aug 4, 2019 01:09AM by Anijet

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

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 4, 2019 01:10AM Anijet wrote:

Dear Elaine,

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

Thank you

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 4, 2019 07:02AM Beesie wrote:

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.


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Aug 4, 2019 08:07AM - edited Aug 4, 2019 08:21AM by Anijet

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)

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 4, 2019 08:23AM santabarbarian wrote:

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.

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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Aug 4, 2019 08:46AM Anijet wrote:

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!


Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 4, 2019 08:56AM wrenn wrote:

i am still here at age 72 six years after double mastectomy and expect to die of heart disease. I didn’t have chemo (health issues) and have triple negative grade 3 with subtype metaplastic which is more aggressive.

I would let your mother decide what she can and can’t tolerate. Maybe see someone tosupport you through this since it is very scary in the beginning.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Aug 4, 2019 09:28AM Anijet wrote:

Dear Wrenn, you are an angel! you made me so happy!

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 4, 2019 09:42AM - edited Aug 4, 2019 10:10AM by wrenn

My daughter didn't want me to have chemo and reading side effects some have I feel like I dodged a bullet but it would be hard for me to recommend someone not have chemo. I am glad my M.O. made the decision easier. He just said about chemo "I don't want to kill you".

The hardest part of this disease for me has been psychological so any support you can get (including coming to this site) will help

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Aug 4, 2019 10:03AM - edited Aug 4, 2019 11:39AM by Anijet

i really appreciate your help

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 4, 2019 11:03AM Shelligirl wrote:

wrenn, you are an inspiration. Thank you

Dx 6/18/2019, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2+ (FISH)
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Aug 4, 2019 02:59PM Cowgirl13 wrote:

I'm 73 and 10 years out. I can't imagine being treated this way.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/16/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Aug 4, 2019 03:05PM Anijet wrote:

happy for you! But 10 years ago you were 63

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 4, 2019 04:59PM MountainMia wrote:

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.

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Aug 5, 2019 12:27AM Anijet wrote:

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?

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 5, 2019 02:09AM edj3 wrote:

Age at time of dx has nothing to do with whether or not she's got the genetic mutation for breast cancer.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 5, 2019 03:01AM Anijet wrote:

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

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 5, 2019 04:20AM godisone wrote:

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.

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Aug 5, 2019 04:30AM Anijet wrote:

how are doing now godisone?

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 5, 2019 04:35AM godisone wrote:

@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.

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Aug 5, 2019 04:44AM Anijet wrote:

good luck to you and your family! Stay strong Dear

Dx 6/10/2019, IDC, Left, 2cm, Stage IIB, Grade 3, 1/9 nodes, ER-/PR-, HER2- (IHC)
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Aug 5, 2019 05:25AM edj3 wrote:

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.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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