CommunitiesTriple-negative Breast CancerTriple Negative Breast Cancer Journey: Seeking Advice

Triple Negative Breast Cancer Journey: Seeking Advice

IR

Community Member

a year ago

I was diagnosed with a triple negative breast cancer to right breast in January 2023, and I am BRCA 2 positive. I was offered preventative mastectomies but refused this 9 years, but had aggressive monitoring. The tumor was deep and very small and spotted on my annual breast MRI with clean nodes. I decided on double mastectomies with saline implants at same time, because the tumor had a KI score of 75 to 95% aggressive rate. At the time of surgery, March 2023, a second tumor was found but lymph nodes x2 were benign. My Oncologist F/U included tumor markers CA 27 29, tested every 3 months as positive 55 to 87, but CTs negative. A PET scan in January of 2024 was positive in one axillary lymph node that was necrotic, and I began immediate chemo therapy, continuing a year to this date. I had aggressive doses of Carbo/taxol weekly for 3 months, followed by Adriamycin/Cytoxan every 2 weeks for 3 months, surgery to remove the remaining tissue of the nodal area Sept 2024 and all was benign at that time. I went back on preventative chemo October, now as oral aggressive doses of Xeloda, that I completed December 2024, and planned in 2 weeks to begin oral PARP, Oliparib but a low beginning dose to hopefully prevent leukemia. I overall am doing well, thankful to my Oncologist and team. My concern is that tumor markers remain 50 to 60, but Dr feels this may be false, or due to chemo agents. I had many symptoms and side effects managed by meds and proper diet, but have kept very active and walk around 10 miles most days… I am a retired ICU RN manager. I lost my hair but it is beginning to grow back, my toe nails gone, finger and foot blisters manageable by podiatrist, lip blisters, neuropathy, joint pains, some fatigue, low WBCs, mild anemia… but overall grateful that my repeat PET scan October was negative. Any further suggestions? My Oncologist and cancer team very supportive. Thanks, Irene

2
3 comments
Comment
accepted answer

Accepted Answer

Thank you for sharing such a detailed account of your treatment journey and for asking about next steps. It sounds like you've been incredibly proactive throughout this process, maintaining an active lifestyle and working closely with your oncology team. Many community members find it helpful to hear how others have navigated similar treatment paths, especially when it comes to managing side effects while staying active. Have others in the community found specific strategies that helped with elevated tumor markers during treatment, or ways to prepare for starting new oral therapies?

3+ patients found this helpful

IR

Community Member

6 months ago

Added comment: I have 5 autoimmune disorders (pernicious anemia, autoimmune neutropenia, psoriasis, autoimmune gastritis, and Sjogren’s) and therefore cannot receive immunotherapy such as Keytruda.

1
JE

Community Member

6 months ago

Join the TNBC healing naturally group (fb)

1
CA

Community Member

2 months ago

Thank you for sharing such a detailed account of your treatment journey and for asking about next steps. It sounds like you've been incredibly proactive throughout this process, maintaining an active lifestyle and working closely with your oncology team. Many community members find it helpful to hear how others have navigated similar treatment paths, especially when it comes to managing side effects while staying active. Have others in the community found specific strategies that helped with elevated tumor markers during treatment, or ways to prepare for starting new oral therapies?

Outcomes4Me

© 2025 Outcomes4Me Inc. All rights reserved.