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6 months agoHello Ladies, I have looked high and low, but I am struggling to find anyone with quite the same dilemma. Please find my onco score paperwork attached. I am 38 and had invasive ductal carcinoma. The initial biopsy showed the sentinel node was positive, but after my double masectomy, when they took a total of 8 lymph nodes to be sure it hadn't spread, the initially biopsies' node was negative with only a large collection of hystiocytes present. Fast forward to my onco score returning: - The tumor was grade 3 -The grading came back 1c with no other evidence of cancer in the lymph nodes or margins -Radiation was determined to not be needed because of this outcome. -6 rounds of cytoxan and taxotere chemo were recommended by one oncologist because of my age -A more experienced oncologist who also consults with Duke University oncology acknowledged that I was literally on the most grey area of decision making for chemo or no, as they are currently doing studies for moderate risk, under age 50 women, and I would need to weigh everything. Other considerations: I have 4 little kids under the age of 12 -I believe sugar and previous poor decisions with food and alcohol contributed to my diagnosis -I have radically changed my diet and have been on infusions for iron because I was radically anemic -I believe my heart has been strained before due to stimulant ADD meds in conjunction with alcohol -I feel my liver may be compromised beyond what is initially visible, especially because having 2 beers (after an entire calendar year of zero alcohol) my enzymes were elevated the following day for blood work. -I have changed my level of activity to return to daily cardio and strength training -I started taking zeolite and iodine to supplement my morning greens. -I have long down my back mermaid hair that took a lifetime to grow (this is only a surface drawback, with no real bearing on my decision for vanity purposes) I am not a "natural medicine" person; I follow science. Really looking at where I am on the scale for my situation, I am 1 point over the "no chemo" line whichever way you cut it. I plan to have an immediate oophorectomy as soon as the surgeon can schedule it. I had ER+, HER 2 negative cancer, and will also be starting on hormone therapy. Studies are showing that for where I am on scales, it may just be the efficacy of the hormone blockers that are causing survival and not the addition of chemo. Chemo will be an enormous burden on my children and family, my mental health, my ability to be physical and vibrant, for an indeterminate amount of time during the prime of my life (which may be shortened by chemo; quality lessened). Dying because I refused a treatment that no one is sure will help more than 1.6% statistically would be terrible, but is 1.6% worth all of the above? This is a rock and a hard place. Advice or thoughts? I am leaning toward no chemo. Thanks!
Accepted Answer
This decision sounds incredibly overwhelming, especially with so many factors to weigh while caring for four young children. Many people in similar borderline situations have faced this same difficult choice between accepting the potential side effects of chemotherapy versus the uncertainty of forgoing it. The medical team's acknowledgment that this falls in the "grey area" highlights just how complex these decisions can be when the statistical benefits are small but the personal stakes feel enormous. Consider seeking input from other community members who may have navigated similar borderline recommendations, and remember that whatever choice feels right for your specific situation and values is valid - there's no universally "correct" answer when the medical evidence itself is uncertain.
3+ patients found this helpful
Community Member
6 months agoIt won't let me attach my onco paperwork here, but I describes the results and can answer questions.
Community Member
6 months agoWhat was your score? These decisions are hard to make. The chemo requirements are different for pre vs post menopausal based on the score. Keep in mind it never hurts to get another opinion. What % was your recurrence? That is something to also help guide you. Have you plugged you information into the Predict breast cancer tool? That might help as well.
Community Member
6 months agoHi, Sarah, was your oncotype score between 16-20, which would have the 1.6% benefit from chemo that you mentioned? I was 37 when I made my decision for no chemo since the 1.6% benefit is so low. I opted for ovarian suppression and hormone therapy. Did your oncologist recommend an oophorectomy or is that your choice? I asked my oncologist about an oophorectomy vs the ovarian suppression and she suggested to try the ovarian suppression first (injection every 3 months).
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6 months agoNina, my number was 21! I am pre-menopausal, but am immediately getting my ovaries taken out and then starting Tamoxifen. Technically, my "chance" from 20 to 21 makes my recurrence rate go up by 5%, but my score was so close to the edge I tend to think it is more ambiguous than that. What I do know is that I've made dramatic lifestyle changes, and since then my body took care of the cancer cells initially found in the biopsied lymph node. I also know that I took ADD meds for many years (heart and vascular considerations), probably drank too much (liver), and have a history of kidney disease in my family. This means I have an at worst 7% recurrence score, with less than 1.5% in all subgroups, and I'm about to effectively go into menopause. I'm just not willing to gamble the next foreseeable future managing chemo side effects that will drain me, effects on my kids, and my immune system for such a low grade improvement in treatment efficacy. I plan on monitoring the heck out of it and making it my job to stay healthy, active, and frequently screened. I wish I could find my future written on stone, but I had to pick, with some of the best oncologists telling me it was a coin flip. *sighhhh* Best to all of you in this group and thanks for reading!
Community Member
6 months agoHi Sarah.. my onco score was 19. I opted for 4 chemo sessions in 2020. Unfortunately I has recurrence in 2024. I had developed resistance to tamoxifen and at time of diagnosis I was 46. Now there is targeted therapy that I am on. I hear it is also used for early stage breast cancer. I am not sure how reliable oncotype score is (at least in my case wasnt) and perhaps ongoing ctDNA can help if u can go on targeted therapy sooner. Best wishes.
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6 months ago🙏
Community Member
6 months agoNazn how did you cope with Tamoxifin? Please tell me as I am kicking and screaming and resisting it with all my might. I had a lumpectomy for stage 0HER positive two months ago and have nearly completed 20 rounds of radiology.
Community Member
2 months agoThis decision sounds incredibly overwhelming, especially with so many factors to weigh while caring for four young children. Many people in similar borderline situations have faced this same difficult choice between accepting the potential side effects of chemotherapy versus the uncertainty of forgoing it. The medical team's acknowledgment that this falls in the "grey area" highlights just how complex these decisions can be when the statistical benefits are small but the personal stakes feel enormous. Consider seeking input from other community members who may have navigated similar borderline recommendations, and remember that whatever choice feels right for your specific situation and values is valid - there's no universally "correct" answer when the medical evidence itself is uncertain.
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