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All TopicsForum: IDC (Invasive Ductal Carcinoma) → Topic: Did anyone freak out from NOT getting recommendation for chemo?

Topic: Did anyone freak out from NOT getting recommendation for chemo?

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

Posted on: Jul 11, 2018 04:30PM

maiyen wrote:

I've seen many people worry when their MO recommends chemo for them, but I'm finding myself starting to freak out because both of the MO's that I've seen recommended that I don't do chemo. Their thoughts are that the side effects and risks would outweigh the benefits since I am highly ER/PR+ and HER2-, but I know that chemo is done to reduce distant recurrences so part of me feels afraid if I skip it? I guess when I saw the TAILORx results that showed patients with scores 16-25 and younger than 50 should do chemo...I assumed that included me in that group since my Oncotype score is 17 and I'm 43.

Dx IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH)
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Jul 11, 2018 04:33PM Runrcrb wrote:

do you have cancer in any lymph nodes? That is a factor in addition to oncotype analysis.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Jul 11, 2018 04:59PM moth wrote:

My MO told me at the beginning that she guided her chemo decisions on several factors including:

Grade of tumor

size of tumor

hormone receptor status

lymphovascular invasion

positive/neg lymph nodes

age of patient

Any of these on their own might make her recommend, or at least consider a course of chemo. I was older than you and was prepped to fight for chemo if I got an intermediate score but that turned out to be unnecessary as I got reclassified as triple neg (& Oncotype score generated was through the roof...) We didn't even do Oncotype here in my province until a couple years ago so these were the items that went into the clinical decision making.

Given your age & Oncotype score, you're absolutely right that your MO should be discussing the relative benefits & risks of chemo with you.

Dx at 50; Left, IDC/DCIS 1.7 cm, Stage I, Grade 3, 0/5 nodes, pathology ER+/PR-, HER2-; Oncotype says ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy
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Jul 11, 2018 05:53PM - edited Jul 11, 2018 05:57PM by maiyen

Runrcrb, I did not have cancer in my node, and they only took one since it was negative.

Sorry...didn't realize that I had my diagnosis set to private.

moth, final path report says lymphovascular invasion: not identified.

Dx IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH)
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Jul 11, 2018 07:53PM Runrcrb wrote:

Chemo doesn't guarantee no distant recurrence. I thought of it as attacking anything floating around my systems. I had several positive lymph nodes. My oncotype indicated low probability of recurrence and without the lymph involvement, I would have skipped chemo. I had less chemo than someone with more lymph involvement or a higher grade (i didn't have the taxol that many have).

I recommend that you talk to your MO again with a goal to get an understanding of why she doesn't think chemo is necessary. For your peace of mind, I also suggest a second opinion. If the second one matches the first, then that will likely make you more confident. If it's split, you can go for a tie breaker or go with the chemo. Chemo is not a walk in the park, although i found radiation harder, and neither guarantees no recurrence. Nothing really does that.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Jul 11, 2018 08:16PM moth wrote:

Runrcrb is right - there are no guarantees. This is a giant game of odds & you can do everything right & still end up on the wrong side, & vice versa.

But if you put in your stats into one of the calculators you can see how many people with similar dx are alive 5,10,15 years down the road & whether their death was due to cancer or other causes.... & how chemo & endocrine therapy can affect those probabilities. But bottom line is you can have a risk of less than 1% and still have something happen to you. I had extremely low risk of getting breast cancer in the first place...& yet here I am.

That said, when I looked at my cancer outcome probabilities, I knew that I wanted to shrink that probability bar to as little as possible so I'm throwing everything at it. (& also thus my constant harping about the studies showing exercise being the biggest lifestyle modification factor with one study saying risk of recurrence was reduced approx 40% )

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

http://www.predict.nhs.uk/predict_v2.1/tool


Dx at 50; Left, IDC/DCIS 1.7 cm, Stage I, Grade 3, 0/5 nodes, pathology ER+/PR-, HER2-; Oncotype says ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy
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Jul 12, 2018 12:59PM maiyen wrote:

Runrcrb, yes that's true that chemo doesn't guarantee distant recurrence. It's just hard for me mentally to see that it can help to prevent distant recurrences, but my doctors are telling me not to do it. When I met with the second MO yesterday, he said he wouldn't recommend chemo because I am luminal A and he said that endocrine therapy would be far more effective for me. But I read one article that states luminal A means Ki67 is less than 15% and mine is 30% and a different article states luminal A means ER/PR+, HER2- with no regards to Ki67 as long as the PR is positive so I'm confused on whether I'm actually luminal A or not? I do feel like it's all just a crap shoot which I hate. I hate that I can't make decisions based on black and white facts and all my stats keep falling into grey areas. I will need radiation regardless so I'm just trying to figure out this chemo part because I know that goes before rads. My first MO was leaning toward no chemo when I first saw her and she said we'll discuss it more once I get my final path report from surgery. I have my surgical follow-up appt with her next week so I'll be sure to ask her a bunch of questions, but I'm wondering if she'll stick with no chemo. As I've been researching online this past week I've seen her name pop up on a few publications and she's a pretty big advocate of not recommending chemo for luminal A patients due to recent research. Guess I need to figure out if I'm actually luminal A or B though.

moth, thanks for the links to the calculators. I just did the lifemath one and without chemo I'm at 11%, if I add 2nd gen chemo it puts me at 6.1% and 3rd gen chemo takes me down to 4.9%. Predict doesn't give me very big fluctuations. The 5 year mark doesn't change my stats at all with chemo added, at the 10 year mark it adds 1-2% and the 15 year mark adds 2-3%. I kind of feel like you where I'm willing to be more aggressive early on if it will reduce my risk of recurrence as all of this terrifies me.

Thanks to both of you for your input.

Dx IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH)
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Jul 12, 2018 01:04PM pupmom wrote:

No, I was very relieved. Oncotype DX indicated I was more likely to die from chemo than cancer.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jul 12, 2018 02:26PM gb2115 wrote:

I was worried when they said no chemo. I had a positive node and am young. But based on mammaprint results they didn't recommend it. I was relieved yes, but I do still worry that maybe we didn't do enough.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Jul 12, 2018 03:18PM TrailDweller wrote:

Thank you Moth for the links to the calculators, that was very helpful.


Dx 4/24/2018, IDC: Mucinous, Right, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 5/7/2018 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 6/20/2018 Arimidex (anastrozole) Radiation Therapy 7/17/2018 Whole-breast: Breast
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Jul 12, 2018 03:48PM Runrcrb wrote:

Maiyen you seem to be doing all the right things- tons of research and creating a list of questions for your doctors. Keep pushing until you feel good about the decisions being made. I barely understood the oncotype thing (and my printed report was in bad physical condition so it was hard to read anyway) and although i was 100% ER and PR+ and low likelihood of recurrence, the number of nodes put me into the benefit from chemo.

I struggled with the single vs double mastectomy and spent a lot of time on that research and decision. Once i made the decision i felt 100% better and at peace. This is why I think your continued conversations with MO will get you to peace with the final decision.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Jul 12, 2018 05:05PM Prairiedog wrote:

Moth, thanks for the links to the calculators. My MO recommended letrozole for me, but I am very concerned about the cognitive effects of AI. Both of my parents had Alzheimer’s and I am determined to do everything I can to avoid that fate. The MO and I discussed the risk/benefits of the hormone therapy and she said it was up to me. According to the calculators, the improvement in reoccurrence rate is not large. That helps me to make my decision.
Dx 3/1999, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+, HER2+ Dx 4/11/2018, ILC, Right, 1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 5/3/2018 Lumpectomy: Right
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Jul 12, 2018 05:20PM hapa wrote:

Keep in mind that chemo puts you at risk for other things, like heart failure and leukemia. The risks depend on your chemo regimen. So I'd research the risks of whatever chemo drugs you'd be getting, and unless chemo was going to reduce my risk of recurrence enough to offset those other risks, I wouldn't take it. Breast cancer isn't the only thing you need to worry about in the long run.

Dx 12/8/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jul 16, 2018 12:29PM maiyen wrote:

Runrcrb, I can understand your decision with positive nodes. I believe I would do the same in your situation. I think my biopsy path report put me at 98% ER and PR+, but my final surgical report is showing a little lower ER+ and even lower PR+ than before. Although I do not know what the final numbers are since I haven't had my follow-up with the MO yet. Perhaps that info with the additional questions will help me gain some new perspective. You are right, sometimes I think making the decisions about options can be just as hard as going through the actual treatments (at least for me).

hapa, that's true and I'm not trying to downplay how horrible chemo can be. One of my MO's did state at one point that she's not sure if the toxicity of chemo would outweigh the benefits so I know that's the biggest consideration. Thanks for bringing up those points.

Dx IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH)

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