Discordant finding - sent to tumor board
So frustrated and stuck in limbo.
Just turned 41 and long story short, I’ve been having a rollercoaster of mammos, dx mammos, US, biopsies, MRI, and more biopsies since April. Side note: also found out then that I’m highly allergic to MRI contrast.
Last pre-biopsy meeting, I find out that one area of architectural distortion is highly suspicious of malignancy. He strongly recommends surgery regardless of biopsy result due to how it’s presenting in the MRI images/contrast uptake. He also will do his best to get the best sample, but without the MRI contrast he can’t guarantee he hit the optimal area.
Fast forward, biopsy shows sclerosing adenosis, columnar cell change, usual ductal hyperplasia, and a bunch of other things but no confirmed malignancy in the sample. Radiologist addendum finds results discordant with imaging and recommends surgical excision.
Met with surgical oncologist yesterday and she’s like - you don’t need surgery. I told her what the radiologist told me about needing surgery regardless of biopsy result because the imaging presented as highly suspicious of malignancy. She said he never wrote that in the report and she can only go by what is on there. She said she finds the imaging concordant.
So now, my case is being sent to the tumor board for further review and recommendation since they don’t agree and she doesn’t want me to have an unnecessary surgery, especially since there is no mass - just a large measurement of tissue they’re telling her to remove, using only markers as a guide.
Spoke with radiologist office and explained what happened and they sounded frustrated - Radiologist is writing another addendum to report defending his recommendation. When they heard the surgeon’s name, they’re like - oh you drew the one surgeon that won’t cut unless all the details are spelled out. Every other surgeon they work with has deferred to the radiologists’ recommendation.
So now I have to wait another 3 weeks to find out - at that point this is a 6 month saga. Plot twist - apparently my radiologist is on that tumor board.
Ugh I just want to know the next steps, good or bad. 5 months of back and forth saying I’m clear, then not clear, then clear, then not clear, and lots of miscommunication is driving me nuts.
Comments
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Hello @pollen83, and welcome! We are so sorry you’re going through this. Having so much conflicting information must be incredibly frustrating and exhausting. Anyway, it's good to hear that your case is being reviewed by the tumor board, and hopefully that will lead to good results. Until then, please try to focus on things that may distract you, like going for walks, getting some exercise, or spending time with friends. Hopefully, this will make the three-week waiting period a little easier.
Good luck! We're thinking of you!
The Mods
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@pollen83 Sorry you have been waiting all this time and still no clear answers! Glad it is being reviewed by going to the board that is the best thing to get various opinions. It’s OK, that the same radiologist is on the board. Let him plead his case to the rest of the panel and see where it goes. Sending good vibes and strength your way.
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