What would you do?
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?
Comments
-
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:
https://www.genomichealth.com/en-US/Advocacy/New_Node_Positive_Data
-
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.
-
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.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team