Treatment up in the air after misdiagnosis

schlip

I just need to get this out because this has been such a frustrating (that doesn't even begin to describe it) experience. I just got home from my mapping appointment that didn't happen. My surgery was at the end of June, so now I'm 12 weeks out and I can't even start radiation. I was diagnosed with a tiny (2mm), ER+/PR+, intermediate grade DCIS. Biopsy said DCIS, lumpectomy final pathology said DCIS. But I opened a can of worms by asking for a Prelude DCISionRT test and they found microinvasion in the original biopsy.

So I show up to my appointment and the RO asks if I've talked to my surgeon. I said yes, but I hadn't heard anything since right before Labor Day. Silly me for thinking they were communicating with each other. But radiology wont map me until they know whether I need another surgery for a SLNB, because I didn't get one with the lumpectomy. Surgeon wont decide until pathology gets the biopsy slides to review. Pathology doesn't have my slides because the biopsy was done somewhere else.

I should be halfway done with radiation by now, and I don't even know when I will start or if I need more surgery. If I don't need a SLNB (which frankly, I don't want even with the microinvasion retroactive upgrade), I'll always wonder if there was one stray cell that got away and will put me at risk. If I do have a SLNB and it's negative, I'll be pissed I had to have another surgery (I know I sound ungrateful, but I'm being honest) and will always wonder if this delay in radiation has put me at risk. And if I do get a SLNB that comes back positive, well, I don't even want to go there.

I'm way too young to be dealing with this. This is BS. I mentally prepared, got the all clear, and then moved on. And now this F-ing April biopsy is dragging me back. Want to shout all the expletives but will keep it civil here. Can't promise I wont go into my closet and scream, though.

schlip

Well, just wanted to come back to this and close the loop - for myself and anyone reading. After another 2-3 week delay, my team finally got the slides and reviewed them. They did not agree with microinvasion. There were 3 small detached fragments of DCIS that lacked myoepithelial stains, but it was because the epithelium had been displaced (those fragments were not within the stroma).

I'm relieved because I didn't think it would go this way, honestly, though having an almost two month delay for no reason is hard to swallow. I never did get my report so I don't know my estimated risk of recurrence is or how likely I'd be to benefit from radiotherapy. But the experience spooked me, so I'm going ahead with the radiation, even though it's now been 16+ weeks since surgery. Trying not to think about that study on recurrence rates for those who delay treatment more than 12 weeks, as recurrence seems almost on par with those who don't do radiation at all, which is what I really wanted in the first place. But, I had to do it my way, and as a result things got weird, so I'm just doing what the doctors say now.

Here's hoping for smooth sailing from here on out!

Jelson

Smooth sailing for you Schlip!!

LivinLife

Wishing you well with rads! That was a whole lot you just went through!