Re-excision misery

so sorry you are having all this trouble; exactly what you do not need at this time.  I have no idea how NY hospitals work.  I think at this point, though, it would be a lot more complicated to change BS.  I think when they do a re-excision, the surgeon works from the way s/he handled and marked the pathology, etc. in the first lumpectomy.  I would think at this point, you want the person who started and who knows what she did first time. 

I always found Sylvia to be overworked and rushing, but for the most part she did what she said she was going to do.  I did find her (and everyone) fairly difficult to reach, they often didn't return calls until after 5pm, but they usually did get back to me the same day.

I agree that Nancy the Navigator can be quite useless, but if the most pressing issue is that you can't get a re-excision date out of them, well, I'd be calling every single one of those people repeatedly until I got my damned date.  And I'd stop by if I had to.  I mean, it's been weeks!  What's the f***ing problem?

Karen and Cynthia weren't perfect, but I found them very helpful.  Have you spoken to them?  They can bug Sylvia for you.  They did for me.

I was pissed once because Cynthia put things in motion which ended up with me having an emergency MRI biopsy app't, which I didn't feel was necessary and was ridiculously inconvenient for me.  I would have been just as happy to wait another few days - but no, for some reason they made me an emergency app't at 7am, which threw the radiology dep't into an uproar and caused all kinds of unnecessary nonsense.

Also, once in the beginning, Cynthia seemed to be giving me some BS crap about .... well, the bottom line seemed to be that your negative or positive thoughts could cause or prevent cancer.  I told her we'd have to agree to disagree.

And after my MRI biopsy I was bleeding like a stuck pig, the anesthetic was wearing off, and all those bee-yatches were giving me shit about giving me a Tylenol.  It might be a federal regulation or something that they can't just hand you a Tylenol, at least I hope so - because as far as I was concerned there was no excuse.  I can't remember if someone slipped me one in the end, out of their purse.

But anyway, you had a mammo today and left without getting a re-excision date?  Did you stop in to see them while you were there?  What was their excuse?

I don't think I was ever in a recovery room there, and Cynthia is a BC survivor. 

Keep calling Sylvia and Karen, and bug Nancy too if necessary.  As I said, they can take a while to get back to you, but they do get back to you. BUT they are on the same floor, and however overworked Sylvia may be, if you annoy enough people enough times, they'll want your annoying-ness to stop and they'll push Sylvia to schedule you already!

PS - I just threw up.  Lovely.  Not BC related, I don't think.

Yeah, I have a cold I can't shake and spent the day with Momster.  Couldn't stop coughing, amd STILL coughing right now!  When I finally got home last night around 10:30pm, I had some hummus and pita bread for dinner - I wonder if the hummus was bad?  Made it to my bathroom sink, which is now all clogged.  I hope Liquid Plumbr works on this!

But back to BC, call them again about the Xanax.  Or call Cynthia, she's a Nurse Practitioner and I think she can write you a prescription herself.  I'm not sure if Karen is.  Which, now that I think of it, is making me even more pissed off about the post MRI biopsy "We can't give you a Tylenol incident."  Bug them for Xanax!

I can give you Cynthia's number if you don't have it, or you could probably ask Nancy the Navigator for it, and whether Cynthia (or anyone else other than your Dr.) can give you a prescription for Xanax.  I'm almost positive that Cynthia did it for me, I only got one or two, enough for the procedure, so it wasn't like they were assisting me in becoming addicted.

What do you mean they were looking for more DCIS but didn't find it?  I thought they biopsied the second area in the first sugery, and it WAS more DCIS - so are they just after a wider margin for the whole thing?  Now I'm confused. 

At least you've got a date now!!

Get a copy of your path and mammo reports, Karen can fax them to you.  Call now and leave a message so she'll get it early - when she comes in. 

As helpful as I found the nurses to be, reading my reports was more helpful.  Sometimes it seemed like the nurses were only skimming them, or intentionally wanting to hide the details, or dumb, or something - I didn't find this only at Columbia, I found this pretty much across the board.  If the situation at Beth Israel hadn't been such a complete mess to begin with, and I hadn't been set immediately on the "I need to take control of this myself" path, I don't know if I'd realized half the things I did - and I'm probably clueless to the other half.

(Or maybe it's because I'm a complete weirdo.  From what I understand most women really aren't interested in learning about their disease, they just want to do what they are told and not have to think about it, so that's why the nurses (and sometimes Drs) don't really get into what's in the various test reports with the patients.   Ex: a very good friend of mine was recently diagnosed with lymphoma.  She's basically delegated her treatment decisionmaking to her brother, who is a Dr. of internal medicine.  She just doesn't want to deal with cancer to the extent she doesn't absolutely have to.  She has zero interest in looking at and understanding her path reports, that's her brother's job.)

At a certain point, I found myself far more educated on DCIS, or at least MY DCIS than the nurses, and only my conversations with the Drs were worthwhile.  But I'd never have had those conversations with my Drs if I hadn't already read my path reports.

Before surgery, I had like an hour long, in person, convo with the nurse at NYU whose job is to counsel patients pre-operatively.  She admitted that she'd been a breast oncology nurse for 20 years, and couldn't answer most of my questions.  She also stirred the pot and unnecessarily brought up issues I thought I'd already gotten comfortable about through discussion with my Dr.  Net result, another bazillion panicked emails to my surgeon which resulted in a face to face app't.  The surgeon answered all the questions in 10 mins or less and all was good (or as good as it was gonna get) again.

I still think Feldman is the best in that regard.  He's so much more straightforward than the others I've dealt with, too bad he wanted to do a surgery I wasn't comfortable with.  I still think about going back to him for follow-up...

Do you want to get a copy of the mammo report, or do you want to let it slide?  I ask because you seemed not to know why they were doing it, so you might be interested in what the report says.  If you don't want to go there, so be it.

Kitchenwitch wrote:

"but maybe it's best to let her do this second procedure?"

I had the same situation and I did switch doctors and let another doctor go in for the re-excision. It wasn't a problem and it didn't seem to matter.

I started out with a general surgeon and then switched to a breast surgeon for the re-excision.