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Topic: Is Chemo necessary?

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Mar 4, 2021 04:58PM

TNMK wrote:

My mother (50 yrs) was diagnosed with IDC (right breast, 3 cm) in January and had a mastectomy in February. Presurgery, her MRI test results came back clear with no node involvement but unfortunately during SLNB, cancer cells were found in her lymph nodes and 9/15 nodes came back positive. Her genetic test was negative and PET scan was clear with no metastasis. She is also hormone positive.

Her medical oncologist suggests the combination of Chemo + Radiation and then hormone therapy for 10 years but she is adamant about avoiding chemo.

Has anyone with a similar diagnosis refused Chemo? What type of treatments did you follow?



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Mar 4, 2021 05:15PM ShetlandPony wrote:

To TNMK's Mom: At only fifty years old, you have a lot of life ahead of you, and you want to live it without stage iv cancer, right? Many people are really nervous about chemo, but are surprised to find out how actually do-able it is. They have good meds to help with side effects these days. Please discuss your concerns with your oncologist, tell him/her what scares you about it. Also ask him/her about your risk of stage iv mets (the kind of breast cancer that kills) both with and without the chemo, so you can evaluate your risk vs. benefit and make a decision with no regrets.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Mar 4, 2021 05:19PM moth wrote:

Plenty of people refuse chemo & ulitmately everyone needs to make their own informed choice. But the things I would communicate to her is

a) chemo is *nothing* like what's on TV. There are literally people who work essentially full time through chemo treatments. It can fatigue you, some people have side effects (but they almost always can be managed well) and it's not fun, but it's not this awful thing that is portrayed on tv. I had chemo first when I was 51. I was still finishing radiation when I went back to school a full time very intensive program. Chemo didn't slow me down much. Now as a stage 4 I've been on permanent continuous chemo for a year. I am active, fit, doing stuff. I might need a nap occasionally & I don't have hair but it's not debilitating.

b) She's still very young & she needs to know her risk of recurrence because here's the thing: metastatic recurrence in not curable. I threw *everything* I could at it when it was early stage because you only get one kick at the can. Chemo and hormone therapy are all to try to reduce the risk of it it coming back. It doesn't always work (didn't for me) but statistically it helps many women.

You can enter her stats into a calculator like Predict https://breast.predict.nhs.uk/tool

& LifeMath http://www.lifemath.net/cancer/breastcancer/therap...

& you will see what the effect of surgery only is and what the additional lives saved are by chemo & hormone therapy. The excess mortality on those calculators is due to metastatic breast cancer recurrence. The oncologist should also be able to discuss these numbers.

At the end of the day, I know I did everything I could to prevent a recurrence. I think that's one way to think about it... if she doesn't choose to do the prescribed evidence based treatment and worse comes to worst & it comes back as metastatic, will she still be ok with her decision or will she regret it? I've seen people choose both ways so it's deeply personal.

best wishes to you & your mom

I take weekends off

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: https://nevertellmetheodds2017.tumblr.com/

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Mar 4, 2021 05:21PM - edited Mar 4, 2021 05:23PM by exbrnxgrl

Hello,

I am no expert on chemo but my stats are not terribly different from your moms save I only had 1/15 nodes test positive and my tumor was 1 cm larger. I was headed for chemo when a bone met was discovered so my tx plan changed completely however had I been stage IIB as originally thought, I would not have hesitated to do chemo. Your mom has quite a few positive nodes which means teeny, tiny as yet undetectable bc cells may be circulating through her body, ready to pounce at the time of their choosing.

Perhaps it might be better to understand your mother's stance if you knew what, specifically, is worrying her about chemo. Sometimes havingthe correct, current facts can allay fears.

Barring that, I personally do not know of alternatives to chemo if that is what her mo recommends. Has she asked her mo if he has ideas about other possible treatments? There are also many purported alternative clinics, regimens, protocols, natural cures, etc., but little scientific evidence to support their claims, though there are volumes of personal anecdotes. However, this doesn't bother some and those are therapies that are in the alternative medicine realm. Ultimately, your mom is the decision maker and if she is armed with facts then she will make the decision that she is most comfortable with.

I wish you both the best

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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Mar 4, 2021 05:47PM ElaineTherese wrote:

What grade is your Mom's cancer? Chemo works best on Grade 2 and Grade 3 cancer because it kills quickly dividing cells. Mine was Grade 3, and it was completely wiped out by the 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 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Mar 4, 2021 06:07PM Beesie wrote:

What is your mother's HER2 status? HER2- or HER2+?

The PET scan showing no metastasis is good, but that has no bearing on whether or not she is high risk to develop a metastatic recurrence. Because here's the thing with metastatic cancer. By the time it is large enough to find on any imaging scan (bone scan, MRI, CT scan, PET scan), it is a Stage IV metastatic cancer. At that point, chemo is no longer given to reduce the risk of mets, because the scan shows that mets have already developed. For Stage IV patients, chemo is given as a treatment to extend life. With early stage patients, chemo is given to stop a metastatic cancer from ever developing. This means that chemo is given to patients who show no evidence of mets, but who nevertheless face a not insignificant risk of mets. Most cancers have been in the breast for 3-5 years, or maybe even longer, before they become large enough to be found. During that time, a few cells might break away from the main tumor and move into the body, either through the bloodstream or through the lymphatic system. If it's just a few cells, they will be completely undetectable, and they might sit somewhere in the body for years before they start to grow and develop into a metastatic recurrence. The role of chemo is to track down these rogue cells and kill them off. This is why chemo is regularly given to patients who have clear scans, and this is how chemo saves lives, by stopping a metastatic recurrence before it can happen.

In your mother's case, with 9/15 nodes being positive, the chance that some breast cancer cells are sitting somewhere in her body, biding their time until they start to grow, is likely quite high. Run the PREDICT and LifeMath models that moth provided so that you, and your mother, understand her level of risk, and how much this risk can be reduced by chemo.

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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Mar 5, 2021 04:58AM Moderators wrote:

TNMK - Sorry you had to be here for you mother's diagnosis but we're so happy to see that you decided to join. As you can already tell, this is a wonderfully supportive community.

If you want to learn more on your mom's type of cancer and treatment options you may like to read up on our main site content about Treatment for IDC and Lymph Node Involvement.

Wishing you and your mom well, and looking forward to hearing more from you soon.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 9, 2021 08:46AM SandiBeach57 wrote:

If I had to relive my past decisions, I would. I regret not doing everything to prevent metastatic breast cancer. I just didn't think that cureable DCIS was a big deal.

My biopsy in 2006 showed close margins on the chest wall. The rad onc recommended chest wall radiation even after a bilateral mastectomy. I had just finished the immediate reconstruction process with expanders in place. There was no way I was going to take them out so soon for radiation as recommended.

Then the recurrence happened in 2007, again close margins. My MO suspected there were IDC cells that spread via chest wall, but no clinical proof. All silicone implants were removed, 6 weeks of chest wall radiation. 5 years of Tamoxifen.

Then came 2016 metastatic breast cancer..widespread to liver.

I can't go back. Maybe I could have prevented this or maybe not.

Please do everything to prevent recurrence, then you can live with your decisions if the cancer returns.

2016 Mutations: FGFR1 amplification, ATM-inversion-Exon55 Dx 7/2006, DCIS, Left, 4cm, Stage 0, Grade 3, 0/4 nodes, ER+/PR+ Dx 7/2007, DCIS, Left, 2cm, Stage 0, Grade 3, ER+/PR+ Dx 10/11/2016, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2- (IHC) Chemotherapy 10/11/2016 AC Targeted Therapy 1/6/2017 Ibrance (palbociclib) Hormonal Therapy 1/6/2017 Femara (letrozole) Dx 3/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2- (IHC) Dx 6/2021, IDC, Stage IV, metastasized to liver Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Chest wall Chemotherapy Xeloda (capecitabine) Radiation Therapy Liver Surgery Mastectomy: Left, Right
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Mar 9, 2021 09:17AM Elderberry wrote:

TNMK: I had zero indications of what was hiding in my breast. I had a clear mammogram one year before the tumor seemed to balloon in my breast. I was Stage IV right out of the gate. Chemo knocked back my mets in 6 treatments. I am doing H&P every three weeks now and have a decent QOL. Yes, I went bald and that was awful because I had nice hair and I then looked like a hard boiled egg. My eyelashes and eyebrows disappeared. So did the "short and curlies" :-)

As moth wrote, chemo helps many, many women in early stages. They go on with no recurrence and live full, normal lives. Don't let fear get in the way of a life saving option.

De Novo - this isn't a "brave battle" - it is a "furious struggle" Dx 3/6/2019, IDC, Left, 5cm, Stage IV, metastasized to liver, HER2+ Targeted Therapy Herceptin (trastuzumab) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab)
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Mar 9, 2021 09:22AM Beesie wrote:

TNMK, we haven't heard from you since your first post. Any questions about what we've said in our responses?

Any news about your mother's situation?


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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Mar 9, 2021 12:05PM SandiBeach57 wrote:

TNMK, i hope my comments didn't scare you off. Please accept my apologies.

Maybe I can help your mom by telling you that

1. I had no problem taking Tamoxifin for the 5 years.

2. I healed nicely from chest wall radiation..I was even able to have expanders on the radiated side for new implants.

3. Re Chemo, I had Adriamycin and Cytoxan for 3 months, it was a little rough..but recovered quickly. There are other chemos that her MO might suggest. Sounds like her MO wants to give RX to kill cancer quickly, then a maintenance with an antihormonal.

Again, I apologize and I sincerely hope your mom decides what is best for her. These decisions are not easy and she is a fortunate mom to have you by her side.

2016 Mutations: FGFR1 amplification, ATM-inversion-Exon55 Dx 7/2006, DCIS, Left, 4cm, Stage 0, Grade 3, 0/4 nodes, ER+/PR+ Dx 7/2007, DCIS, Left, 2cm, Stage 0, Grade 3, ER+/PR+ Dx 10/11/2016, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2- (IHC) Chemotherapy 10/11/2016 AC Targeted Therapy 1/6/2017 Ibrance (palbociclib) Hormonal Therapy 1/6/2017 Femara (letrozole) Dx 3/2020, IDC, Stage IV, metastasized to liver, Grade 3, ER+/PR+, HER2- (IHC) Dx 6/2021, IDC, Stage IV, metastasized to liver Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Chest wall Chemotherapy Xeloda (capecitabine) Radiation Therapy Liver Surgery Mastectomy: Left, Right
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Jun 4, 2021 05:54PM msphil wrote:

hello sweetie ultimately is each person decision I went thru chemo hesitant but yrs later cancer free I m glad I made that choice..was planning our 2nd marriages at diagnosis no family history devastated but here I am today inspiring others. IDC stage2 0/3 nodes 3mo chemo before and after L mast got married then 7 wks rads 5yrs on tamoxifen this yr Praise God 27 yr Survivor. Also our 27th yr Anniversary. My family friends Fiance at time and lots Hope n Positivity. Hang in there. msphil

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