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Topic: What would you do?

Forum: Young With Breast Cancer —

Connect with those under 40 who have been diagnosed.

Posted on: Oct 17, 2019 11:26PM

butterfly620 wrote:

I don't post often, but I feel I'm in need of input from people who may understand. I trust all of my doctors, but I always seem to fall in a gray area. It's a good thing because I have not received a one-size-fits-all treatment plan, but at the same time, it's gotten frustrating because I'm kind of at an impasse.

First of all, I'm 36 years old, and I was diagnosed 8/5 with IDC ER/PR+ HER2-. There was a lot of back and forth between my surgeon and oncologist regarding neoadjuvant chemo--We knew I was node-positive from the beginning as one of my biopsies was on an enlarged node. My oncologist ordered the Oncotype test which came back with a low score🙌🏻.
Fast forward to my BMX on 9/27 where the pathology yielded 3/16 positive nodes, and I was also positive for lymphovascular space invasion as well as focal perineural invasion. I had my appointment today with my oncologist, and now he is nervous for me to not receive chemotherapy, knowing there are 3 positive nodes as well as the LVI and PNI. He ordered a Mammaprint test today to get some more information, so I'll get that back in the next couple of weeks.

I feel like I have all the facts, but my "new school" oncologist is now nervous about not giving me chemo, simply because there's not as much long term data to support the node-positive disease genomic tests (plus the LVI and PNI situation).

I honestly feel right down the middle in terms of what to do. Do I risk potentially being over-treated and cause irreparable damage to my body? Do I risk potentially being under-treated and take a chance on the cancer returning...even though recurrence is a chance for all of us, no matter what, would I feel like if it did return, I didn't do everything possible to prevent it?

I'd love feedback. All of our situations are so incredibly different, but we all have one thing in common-cancer. What would you do?

36 years old, no family history of any type of cancer, found the lump myself, glad I listened to my gut! Dx 8/5/2019, IDC, Right, 2cm, Stage IIB, Grade 2, 3/16 nodes, ER+/PR+, HER2- Surgery 9/27/2019 Mastectomy: Left, Right Chemotherapy 11/8/2019 AC + T (Taxol)
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Oct 18, 2019 12:06AM hapa wrote:

I think Oncotype dx is considered valid if you have up to 3 positive lymph nodes. Take anti-hormonals. If chemo isn't helpful it isn't helpful. It has real risks, one of which is leukemia which my MO told me was a 1% risk. There's the possibility that you will have a terrible allergic reaction to the chemo, or get an infection due to immunosuppression, both of which are things that can kill you. So if your benefit from chemo is low you might be putting yourself at more risk doing chemo than not doing it.

You could also get radiation if you are worried about the positive lymph nodes, but that also can cause more cancer among other things.

Here is a link with some info on node positive patients and oncotype dx:

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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Oct 18, 2019 09:33AM gb2115 wrote:

Maybe see what the Mammaprint says. If you have a low Oncotype, plus a low risk Mammaprint result, then throwing chemo at it may not be that useful, since those test results mean the tumor cells would be less responsive to the chemo.

Are they discussing radiating the nodes? I had one positive node and the radiation oncologist radiated the axillary nodes, as well as the other lymph node areas just in case. Zapping anything that may have been left behind. I was grateful for that even though radiation wasn't super fun.

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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Oct 18, 2019 02:07PM - edited Oct 18, 2019 02:17PM by Cpeachymom

butterfly- I agree with hapa. You're Oncotype report should actually break down mortality with and without chemo. My mortality was higher With chemo, so I was more likely to die from chemo than benefit from it. Also, do you know your Er/pr percentages? I was 100/95, so hormone blockers should be very effective for me. That's the route I chose.

Edited to add- I also had LVI, and that does sit in the back of my mind.

39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/18/2017 Lymph nodes, Chest wall Surgery 10/10/2018 Reconstruction (right): Tissue expander placement Surgery 3/24/2019 Reconstruction (right): Saline implant Hormonal Therapy Zoladex (goserelin)

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