how long is too long to wait for a trial?

Andrea Barnett Budin · 01-20-2016, 04:31 PM

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.

VDC · 01-20-2016, 08:28 PM

THANKS to all of you! I spent today lining up new mammograms and possibly MRI. Mammo for sure is set. My oncologist from Mayo said it should show any progression since my "variety of cancer" has a ton of calcification that show up under mammo conditions. Hopefully more calc's would indicate the rate of growth. At least my onc thought so. It is a place to start. Depending on the outcome of this, will determine which scan to do next. At least I have some action going! Finally. I should hear about the clinical trial by the end of January and it will probably take that long for all the new tests and scans. So they should coincide and at least I'll have some idea of what I am facing NOW. (instead of what I was facing in November) Thanks guys! Any other suggestions? I don't mind bluntness at all. I'm a pretty blunt gal myself. ;-) Any tests or scans that you would recommend? I am new to this and don't mind more information. I'm also a scientist by trade so I don't scare easily....and I research much!

Andrea Barnett Budin · 01-20-2016, 08:44 PM

When you say surgery -- do you mean surgical biopsy?

How do they know DCIS? From looking at calcifications? On CT? On mammo?

VDC · 01-20-2016, 08:50 PM

Andrea,
No I had two stereotactic biopsies. The first was local and diagnosed my calcifications as DCIS ER-, PR-, Grade 3 with necrosis.

After a "run in" with the local facility I flew to Rochester Minnesota Mayo Clinic and requested a second biopsy to confirm and run further tests. This stereotactic biopsy also said DCIS ER-, PR-, Grade 3 with necrosis, BUT it also added Her2 3+ and KI-67 20% Nice.....more "good"news.

The surgery I refer to is lumpectomy to be followed by radiation. Not a excisional biopsy. Of course the difference between the two is negligible. Mayo does a great job during their lumpectomies and the removed tissue is tested by the pathologist while you are still under anesthesia so that if the margins aren't clean they can remove more before closing you up! Sounded like a good plan to me.