Marymac5522's Story

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Ah

"I have been diagnosed as triple negative invasive found in the ducts. It has been a comedy of errors but a lesson in getting good diagnosis of your biopsy results.

"Let me first start with the fact that there is significant familial breast cancer (I'm the 9th occurence in 6 people on my dad's side)...and no one is BRCA positive (including me).

"Here's the story:

"Feb: Something seen on mammogram, resulting in another mammo and then ultrasound, recommending needle biopsy.

"Mar: Local breast surgeon at regional cancer center says, 'It's tiny, probably nothing.'

"Apr: Needle biopsy done by regional cancer center breast surgeon, lab read as hyperplasia in the duct (pre-cancer pre-DCIS)

"June: (Because there is no urgency, late June appointment) for excisional biopsy aka lumpectomy. Because hyperplasia was expected, there was no node testing. Same local lab read the results as Stage 0 DCIS, high grade, ER+ 7%, PR-; suggested I should see oncologist and radiologist here at regional cancer center and do genetic study. Those regional center docs said radiation plus hormone therapy.

"July: Talked to cousins, aunts gathering data for genetic testing and they convinced me to see their doctor who is in another state in a very large city at a famous breast cancer center (not sure if I should say where). That doctor saw me two days later. I brought her the slides from the pathology lab here (didn't even know I could do that). She said she was concerned about the 'high grade,' the very low ER+, and my family history. The path lab at the 'famous' hospital subsequently read the slides differently. The found a tiny amount of invasive (.2 cm) along with a small amount of DCIS (.4 cm). Also the DCIS had low ER+, PR-, but the invasive was triple-negative. They said anyone without the family history would do the radiation but that only chemo would work with triple negative. And if I chose to keep the breast, they would do the hormone therapy to protect the other breast...but it wouldn't help the triple-negative invasive. They also said that they would at least recommend node testing (so some surgery), and they really felt I should consider the double mastectomy (given the family history). They said that the amount of invasive was too small to need chemo so that once I did the mastectomy (assuming the nodes were clear), I was good to go. They did NOT feel CT/bone scan was necessary. ([I] should also state that some of my relatives chose radiation versus mastectomy and those that did, had recurrence at a later date.)

"July: Local doc orders MRI after lumpectomy...all looks fine.

"Late July: local doctors are concerned about the invasive not being found, are somewhat defensive and feel the bilateral mastectomy surgery is too drastic. They order CT scan and bone scan as alternative to node testing surgery. They don't recommend chemo as the amount of invasive is 'so small' (at least they agree on that much).

"Aug 1: The CT scan from local radiology lab comes back with a 'nodule' on the opposite lung. The bone scan comes up all lit up on the ribs just beneath the lumpectomy. I panic. Famous cancer center feels that this makes no sense given the lumpectomy results and the MRI said it was contained and small. Also my chest X-ray for the lumpectomy didn't see anything. They feel the CT scan and bone scan are some kind of weird uptake of the radiation/contrast medicine. I suspect they look down their noses at this regional cancer center. I also suspect the radiologists are doing a CYA in their reading of the results, predicting the worst to cover themselves. Except those ribs and spot on the lung look pretty obvious even to me! That was just today (less than a week before surgery). I'm sure I'll learn more as they investigate.

"Aug 7 is my bi-lateral mastectomy and they will then test the nodes and other breast. Then I [will] know if chemo is required and I'll begin reconstruction.

"So, the lesson is if you have any history of breast cancer in the family don't mess with a needle biopsy, go straight to excisional (lumpectomy). I cannot understand why the needle is effective at all if they ultimately now decide to do excisional (since very often the needle is a misdiagnosis from what I've learned). Also, at this point, I will always get a second opinion on any biopsy (and suggest this for family members) because it is an 'art' not just 'science.' And it also appears that radiology is also a bit of an art. As inconvenient as it is, I do think there is value to seeing a doctor out of town...no cronyism.

"I was very, very lucky that this was caught early. I was even more lucky to have knowledgeable family members who convinced me to pursue. Hopefully, I'll be lucky with the node testing and all the rest. I'll update this after more is known. Maybe I should post this under some sort of diagnostic testing horror story versus 'just' triple negative as a topic?"

-- Marymac5522, diagnosed triple negative in July 2017

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