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Old 01-20-2016, 04:31 PM   #12
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Re: how long is too long to wait for a trial?

We all want docs to tell us not to worry. Of course. We don't want aggressive or worse abrasive docs. We want knowledgeable sensible docs. We need multiple opinions. We just do. Even the most brilliant sees you slightly differently than another brilliant doc. We are all different, docs included.

I have a friend who had DCIS. She had a lumpectomy (so I assume she saw an onc and of course a breast surgeon). She did radiation. She's had some scares over the yrs but remains good.

This is what we all want for you V.

But listen to Juls' experience. Learn. Listen to Flori -- been around for two decades fighting.

I'm glad to hear you wanted honest, cause that's what I am. Seems like Juls and Flori -- and you -- are having an honest discussion as well.

I happen to have heard of a lot of docs that told women on this board -- don't be silly, don't worry about it, I don't even know what you're doing here.

I had a surgeon (in 2013) tell me this. He threw me out of his office with a wave of the hand, not understanding why my onc sent me to him. The next day he went to the hosp and looked at CTs and had a nurse call me back to reschedule. He had conferred with 2 radiologists at the hosp and they had a plan.

In 2015 I returned to him, at the behest of my onc, cause my new thing (mesenteric mass) was spreading. The surg said, Well you can have the surg as your onc wants -- or you can do nothing. Wow, was I tempted to do nothing. But over lunch, I discussed the situation with my husb (who was inclined for us to do nothing too). I was thinking, if a friend asked me what to do -- I'd tell them to get a 2nd opinion.

And so, w/much effort, we located a 2nd opinion an hr away. He much to offer. He was concerned. Carcinoid tumor??? Oh dear. I wound up declining another surg to look at what proved benign in 2013. I asked for a CT guided needle biopsy (cause I'd had a CT guided needle biopsy of my liver in 1998). Oncological surgeon went and conferred w/the radiologist while we waited, with his 4 fellows following him and his assistant nurse. It's really deep, but it is doable. But I'd also like you to go for an ocreotide scan which will show definitively if we are dealing with a carcinoid tumor. Well -- look at that -- 2nd opinion came up with some interesting stuff. I did both. Passed that scan (2 hrs on 2 diff days after an injection) with flying colors. Not a carcinoid tumor. Definitively. And the CT needle biopsy (though an hr and a half of maybe 100 needles) determined the mass was benign.

Pays to get addl opinions.

Listen to Juls. Listen to Flori. Don't panic just follow up. Do what you'd advise a friend to do...

Wish I could find a nice succinct way of saying what I want, but I fail in that department hugely... Sorry.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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