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Topic: Hurry up and wait

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: May 5, 2021 02:44PM

Grandma-unicorn wrote:

I was diagnosed just before Christmas and at the time things seemed to move so quickly. But then my February 18 surgery was approaching and got moved back a month, which of course increased my anxiety and emotional roller coaster.

After my March 19 surgery all of the presurgery plans changed dramatically because despite the MRI and everything what was removed was quite a bit larger than I was originally told. Originally size was listed as 16mm final pathology put it at 52mm.

Was supposed to go in for radiation mapping on April 26, its been changed twice.

Is this normal?

Six years ago my mother got her diagnosis and was having surgery about 3 weeks later.


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May 6, 2021 11:51AM wallycat wrote:

I don't know if anything is "normal" with the covid pandemic. I will say that when I was going through this journey, I ended up having to wait several months to get my MRI because they wanted it to cycle with my (then) periods to prevent getting any false positives. Then another month for the biopsy, then another month for the lumpectomy, then another month for the bmx (that I elected to have done). All my info was also incorrect; my mri showed a 7mm mass but it was actually 1.8cm. My biopsy showed grade 1 but the lumpectomy showed a grade 2.

Covid is messing with a lot of stuff. Not sure how many options you have for other places to reschedule some of these things. Cancer rarely grows fast and most docs say we've had it for 5-9 years once dx. Did they give you your pathology? Maybe it shows slow growth. I hope you can get your schedules set up and confirmed. Yeah, it is frustrating and waiting is the WORST.

Best to you.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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