12 Years of multiple callbacks
Twelve years ago I had spontaneous nipple discharge from my right breast. Following a mammogram, ultrasound, and biopsy, I ended up having a lumpectomy to remove an intraductal papilloma. All was good until 6 month after the surgery and the spontaneous discharge started again and continues still now, 12 years later. No source for the discharge has yet been found, but since then, over the past 12 years, every scan comes back with a Birads rating of 3 or 4. I have required follow up testing every 3-6 months for the past 12 years. It seems the more they look, the more they find. I’ve had mammograms, ultrasounds, MRIs, every kind of biopsy (fine needle, core, stereotactic) - over 12 biopsies so far. Since that first papilloma they have found fibroadenomas, cysts, calcifications, enlarged auxiliary lymph nodes with eccentric cortical thickening and hilar effacement, lesions with both hyper- and hypoechoic focuses…there are always new findings and thankfully, they have all been benign. I have heterogeneously dense breasts and feel with the architectural distortion, multiple clips, scar tissue, and constant stable and new findings, my scans must be very hard to read. I’m also very small breasted (an A-cup) so there’s a lot going on in that small space. At this point I’m emotionally exhausted from all the call backs and what ifs and waiting. Since my last biopsy, I have more frequent stabbing and sometimes a burning pain in my breast which my doctor is baffled by but not concerned about. I’m afraid to stop scanning in case something does change. While I have no immediate family history of breast cancer, I am of Ashkinazi descent. What are my options to get out of this cycle of constant scans and know I’m healthy? Am I over-reacting?
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@swim4ever - Welcome, and thank you for sharing your experience. Twelve years of ongoing scans, biopsies, and callbacks is a lot to carry, especially with so many unanswered questions along the way. You’re not overreacting in wanting clarity and a plan that feels more sustainable. Some members in similar situations have explored options like risk assessment and second opinions to help guide next steps.
We hope others with similar experiences will chime in as well. You might find this helpful for now:
Again, welcome. We’re really glad you’re here.
The Mods
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Hi @swim4ever, Your twelve year period of scans and biopsies sounds like quite an ordeal. It's good that nothing malignant has been found but I'm not surprised by your frustration with the situation.
You mentioned that you are of Ashkenazi descent. Could your doctor (or someone he refers you to) order genetic testing for BRCA mutations? Your heritage and medical record seem to be a situation where insurance would cover it (make sure to check if deemed advisable.) If you were positive for a mutation it would give you the option of having a prophylactic mastectomy, if negative it might give you some reassurance. In spite of the numerous atypical but benign findings nobody wants to ignore something on a scan that might be malignant. A second opinion from a breast specialist at an academic institution might turn up something in the past imaging that would identify a cause.
The shooting and burning pain is something I'm familiar with: nerve damage. It could be caused by your most recent biopsy or scar tissue remodeling resulting from all you have been through. I take gabapentin at night so I can sleep and put up with it during the day. Sometimes PT can help stretch muscles and tendons to eliminate the source of pain.
I hope you can get some answers to exit the cycle.
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@swim4ever your history sounds a bit like mine - I had discharge and papillomas (multiple) also and many rounds of imaging, biopsy, and 6 month follow up again and again for 15+ years. My breasts were extremely "busy" as well so were hard to read and lead to more follow-up. I was uneasy with the papillomas never being removed, but everything always came out benign. Then I had genetic testing done and found out I was CHEK2 positive, which upped the surveillance further. I decided to go to a high risk breast clinic (Dana Farber) and get an outside opinion. They read my most recent imaging and wanted another biopsy of something my local radiologist hadn't identified - which this time came back as DCIS. And everyone agreed DMX was absolutely the right choice, I had dodged a bullet for a long time and it was lucky to be Stage 0 - time to call get rid of them. It was a lot to go through but I am very relieved to be finally done with the cycle.
Maybe getting genetic testing and/or seeing a high risk specialist would be a good step for you as well.
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@Triscuit and @Maggie13 - Thank you! Apparently I’m not eligible for genetic testing because I have no first or second degree family history of BC (I’m in Ontario, Canada), and my surgeon doesn’t feel my risk level is high enough for other options. Unfortunately I cannot afford to pay privately. I’m already working with a diagnostic assessment clinic at a cancer centre which focuses on breast cancer so I’m told I’m being followed by the highest level of care, yet despite the scanxiety and nerve pain I’m told all I can do is continue with regular scans and whatever follow ups are needed. They encouraged massage to help the pain. I’ve asked for a referral to another clinic for a second opinion because where I am advocates for breast conservation, but I am so done. I just want peace of mind.
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Hi @swim4ever, It's too bad you are not eligible for genetic testing. I have lived many places (including west of you in Cambridge) so I understand how medical options differ depending on your residence. Even in the US where I am now different insurance policies have their own limitations on options so you have to live with whatever system you are enrolled in. I hope you get the referral to a practice that has a different viewpoint for a second opinion. All the best.
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