Just dignosed
Hi my name is Deanna and I am 48 I recently went to the ER for a lump that is really hurting. So I got an biopsy and a CT scan done , and went a couple of weeks ago to the surgical oncologist for the results. He went over the results with me and my family explaining different tests like the Hormone receptors and said that ER,PR and HER2 were all negative and he was putting in a STAT referral to a medical oncologist. I am a researcher and went home and looked up my records and started researching my results. Oh he also put in for me to get a PET scan and a mammogram with the referring Dr. Back to my findings of the triple negative receptors is TNBC and it is aggressive . I am a little upset that he didn't tell me about TNBC. But he wrote in his notes that he is worrisome about TNBC. I also see a diagnosis of C50.919 - Infiltrating ductular carcinoma on my referral . My STAT referral is not STAT due to insurance issues I was having and had to keep calling both doctor's and my insurance company for the past 2 weeks trying to get the referral to go through…. it went through finally this past Friday and can't be seen till 11/19. I am so scared because the cancer spreading because it is aggressive and it will be over 30 days that I am just sitting here with no plan . I just hope that all my appointments aren't scheduled so far apart like this. I guess I am just really scared.😧
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Hi Deanna 💕
Thank you for sharing what you’re going through. It’s completely understandable to feel scared and frustrated while waiting for appointments and answers. You’ve done a great job staying on top of your care and advocating for yourself.
Triple-negative breast cancer can sound frightening, but your doctors are taking the right steps to get a full picture before deciding on treatment. The waiting is so hard, but you’re not alone — many here understand exactly how you feel and are here to support you through it. 💗
Sending care and strength. We're all here for you!
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First of all, so sorry you've joined the sorority that nobody wants to pledge. I will tell you that most breast cancer is "infiltrating ductular carcinoma" (more commonly known as "invasive ductal carcinoma" or "IDC"). Two things in your favor: first, it's ductal rather than lobular—which is more aggressive (or inflammatory, more aggressive still). Second, at 48 you are either menopausal or at least perimenopausal, which is better than having been diagnosed before 40. The younger the patient at diagnosis, the more aggressive the tumor tends to be.
You didn't say what grade the tumor cells are—1, 2, or 3 (staging, which is different, can't be definitively done till surgery). Did the surgical oncologist (or the radiologist who did the imaging & biopsy) give you a guesstimate of the size? Where is the tumor located? Staging depends on size, lymph node involvement and size & clarity of margins (the surrounding ring of non-cancerous tissue removed, which can't be ascertained till surgery) if lumpectomy is done (margins don't apply if mastectomy is chosen over lumpectomy).
Nov. 19 sounds like a long way off, but it's actually par for the course these days. For instance, my ultrasound wasn't done till a week after my mammogram finding; my biopsy wasn't done till 2 weeks after that; my surgical consult took another week and my surgery 2 weeks after that (and I had to pull strings to get that accelerated a timetable)!
Has genetic counseling & testing been discussed with you? The counseling would evaluate whether you're a candidate for testing for genetic mutations (especially for certain ethnic groups &/or family history). The results could inform the decision as to the type of surgery.
And though TNBC is a scary diagnosis, you are not alone. Treatment has come a long way in the past decade. There are numerous threads here on BCO to help guide you and communicate with others similarly situated. After successful treatment, TNBC has a lower recurrence rate than other types considered "milder."
Take a deep breath and know you have a vast sisterhood here. And as we say, "we're in your pocket" (tagging along virtually for support) for any tests, visits or procedures. You took the most important first step—"you got this" and we're with you.
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