I'm looking for advice re: my lumpectomy on Monday next week
I'll try to keep the background as short as possible—unfortunately, it is a bit of a twisted tale.
I had a screening breast MRI in Sept. last year. It came back BI-RADS 5 (greater than 95% likely cancer). The targeted US showed a rather benign-looking nodule that was presumed to be the one seen on the MRI. An US-guided biopsy was finally done in late Nov. and it came back benign (fibroepithelial, likely fibroadenoma).
The pathology requisition noted as clinical context: "a benign-appearing 1.3 cm lesion". This information is supposed to inform the radiologist of the reason for the pathology. In hindsight, I wonder if this may have affected how thorough the pathology was conducted since the US didn't show anything suspicious. The pathology requistion failed to note the BI-RADS 5 MRI, my high risk family history of breast and ovarian cancer, or my extremely dense breasts which increases my risk of cancer. A follow-up MRI was done to check the clip placement 6 months later and the clip was adjacent to the nodule. It was not within the MRI identified nodule. The radiologist interpreting the second MRI failed to mention the spiculation noted in the first MRI and only said the lesion was unchanged. He went on to say the MRI result would be compatible with a fibroadenoma. He didn't provide a BI-RADS designation or explain the apparent downgrading of the lesion.
My GP is happy with the benign diagnosis. I'm not quite ready to settle for a fibroadenoma diagnosis just yet. I believe there have been missed steps. A radiology-pathology correlation (rad-path) was never done to reconcile the discordant benign pathology with the BI-RADS 5 MRI. The clip wasn't placed within the lesion so adequate targeting and sampling can't be confirmed. My GP declined to order a radiology-pathology correlation but did refer me to an oncology surgeon for a second opinion.
The oncology surgeon was satisfied with the fibroadenoma diagnosis yet understood how I might be worried due the BI-RADS 5 result and my high risk family history. She agreed to do a lumpectomy to reassure me. It was supposed to be sometime in September. I wanted to ask my surgeon whether the pathology would be 'standard' or more attuned with what would be done for a patient with a BI-RADS 5, high risk family and missing rad-path. Well, I got the call late last week that the surgery will be next Monday, and my surgeon is currently out of the country and won't be back to meet with prior to Monday's surgery. I checked with the MOA and she said the consult confirms the lumpectomy will be done for 'reassurance' and not to resolve the significant risk of upgrade to malignancy. I'm a retired RN with 28 years in acute care hospital. I've done the research and I know my concerns are well founded. Standard care for a MRI BI-RADS 5 with a discordant benign pathology is excision. Unfortunately, I feel like my concerns are being brushed off as an "anxious woman".
If the surgery is elective and for reassurance only, then the pathology that will be done will be routine and consist of a few slices and not a thorough histopathological assessment of the whole nodule. The MOA told me I can speak with the surgeon right before the surgery or I can cancel and reschedule. I don't want to reschedule—it's been 11 months that I've been dealing with this and waiting for resolution. I want to speak with the surgeon and make it clear I need a full histopathological assessment and assurance that my high risk family hx, extremely dense breasts and MRI BI-RADS information be listed on the pathology requisition. I want to ask for a radiology-pathology correlation. I asked my sister who is an RN too but works in the community, about this and she feels that I probably won't get the result I'm looking for. That it might negatively impact my relationship with the surgeon. She thinks I should just let my surgeon 'do her thing'—that surgeon knows what she's doing.
I'm sorry for the length of this. Apologies to those who have stuck along this far. For context: I live in British Columbia, Canada, in a mid-size city in the interior of BC and not Vancouver. Second opinions are pretty much non-existent and patients are limited in their say regarding their care. So, do I let the surgeon know how I feel and what I need to feel confident in the final diagnosis or should I just assume my surgeon knows what she's doing and drop it???
Opinions, please and thank-you. ☺️
Barbara
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Hello, @obsolete , Thank you for your kind words. The surgeon discussed doing an excisional biopsy with me in the consultation. It is listed as lumpectomy on the OR slate. I believe they are considered the same. The nodule is in the axillary tail so I'm not sure if a wide-margin excision would be an option for what is currently considered a benign lesion due to the close proximity of the axillary lymph nodes. Please know your virtual hug is deeply appreciated. ❤️
Hello again, I just saw your link to the article. Thank you for including that. A diagnosis of fibroepithelial tissue could be a fibroadenoma or less likely, a phyllodes tumor. Phyllodes tumors can be benign, intermediate or malignant. Phyllodes tumors are pretty uncommon though. Even if it is confirmed it is a fibroadenoma, I would like to feel confident that there wasn't any malignant cells hanging out within it. Fibroadenomas are uncommon in women my age (68) and rarely spiculated which makes the diagnosis tricky, as noted in your article.
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Differentiating between a spiculated fibroadenoma and a malignant tumor can be challenging, often requiring histopathological confirmation through biopsy. Despite their benign nature, fibroadenomas can cause significant anxiety for patients due to their appearance.
Hello Barbara, above linked article is in agreement. It's indeed a blessing you're a nurse from a nursing family.
If a biopsy of the lesion with the clip is a possibility, would you consider a wide-margin excisional biopsy for Monday's schedule? It's more than the desired radiology-pathology correlation, which is warranted, but it may buy you some extra time to plan your next steps without committing to any definitive surgical choices on Monday. Good luck.
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Hello Barbara, your twisted tale is quite the understatement! So sorry you find yourself in this lengthy predicament. Of course, spiculated border & Bi-Rads-5 would be top concerns for any nurse-patient. You're issues are valid, and it's bothersome there's such diminishment of your more than valid concerns.
With that being the case, politics aside, please push for a full histopathological confirmation and confirmation of the clipped lesion, as you had listed as a concern, if you go along with your lumpectomy for Monday. Best wishes. Hugs 💚💜
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Just curious—waa there an explanation by the radiologist as to what factors in the initial MRI image last year led them to classify the lesion as BIRADS-5? (Mine was BIRADS-4 and turned out to be malignant). "95%" is not 100%, and you might be one of that rare 5% whose tumor is benign. If there's anything I've learned in the 10 years since I had my lumpectomy and the 5 years since my dx of ocular melanoma and radiation therapy, "rare," "unlikely" and "uncommon" don't necessarily mean "impossible." (For instance, ocular melanoma occurs in 4 out 1,000,000 people and the location of my tumor was even more uncommon—yet here I am). Perhaps you are the fortuitous "flip side" as the lucky exception.
Hugs. I'm not conversant with Canada's national health system's standards and procedures, so any advice to "get a second opinion" would be applicable to the US fee-for-service system. I know you're in central BC, but is there any way to submit copies of your imaging & charts to another major university cancer center, even out-of-province (like perhaps Princess Margaret in Toronto, or Segal Cancer Centre in Montreal)? Are you being treated by part of the BC Cancer Agency (may I assume they have branches outside Vancouver & Victoria)?
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Hi @chisandy thank you for replying and sharing your experience. I hope you are doing well since your latest diagnosis. Sending hugs back to you! ❤️
To answer your question about assigning BI-RADS 5—it is a combination of characteristics that when taken together lead to which BI-RAD category is assigned. My report wasn't comprehensive and only reported a few details. Spiculation is highly indicative of malignancy and it was also noted my lesion was homogeneously enhancing which isn't as strong an indicator. I expect the spiculation was the main driver for assigning mine BI-RADS 5. A BI-RADS 4 designation encompasses a range of risk: BI-RADS 4a has a low suspicion (greater than 2% to ≤10% risk), BI-RADS 4b has a moderate suspicion (>10% to ≤50% risk), and BI-RADS 4c has a high suspicion (>50% to <95% risk). Do you know which level yours was?
The BC Cancer Agency gets involved in your care once you've received a cancer diagnosis. There is a cancer clinic here in my town. I'm hoping I'm one of the lucky ones who falls into the 5% benign group. It's just very unfortunate and frustrating that the benign pathology's discordance wasn't resolved with a radiology-pathology correlation after the core needle biopsy. If if had been done—whether the finding had been concordant benign (which would mean the MRI was a false positive) or true discordant (the pathology doesn't explain the MRI findings and was a false negative)—it would've helped determine the remaining risk of malignancy and follow-up.
It's my understanding that standard procedure/best practice would still require a rad-path if the lumpectomy pathology is benign. It's important that the critical clinical context (MRI BI-RADS 5, high risk family Hx and dense breasts) is recorded on my pathology requisition to guide the appropriate level of histopathologic assessment.
I'll have to worry about the 'what's next' part after the biopsy comes back. Again, I do hope for the best possible result from the excision, but I'm also prepared to deal with a diagnosis of malignancy or high risk lesion, too.
Thanks again!
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Mine was BIRADS-4B
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