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Old 07-28-2009, 04:28 PM   #1
Kimberly Lewis
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Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
Exclamation I didn't go through my Oncologist to be tested...

I contacted a genetic counselor directly and once I was assured that I would be covered by my insurance went ahead and did the test. The counselor thought I had a 15 - 20% chance of being positive. I was positive for BRCA 2 and so was my daughter. My oncologist was shocked, and surprised when he received the results of the test. He never would have reccomended it and my daughter wouldn't be getting the advanced screening that she gets now without my getting that test done. Thats my 2 cents on the issue!
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Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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Old 07-28-2009, 04:54 PM   #2
Chelee
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Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
Hi Kimberly, You must have a PPO...since I have a HMO I have to go through either my primary or onc too get a authorization to see a genetic counselor. I can't see any specialist without one...I just played heck seeing a dietician. I finally got my primary to ok that. (Frustrating.)

I could pay out of my own pocket if I had too...but I wish my onc would just at least put a request in for one and see if my insurance ok's it or not?

I can only imagine how shocked your onc was when it came back positive. Its a good thing you took it upon yourself and got tested because now your daughter can stay on top of things. Its a shame we have to be so pro-active all the time...but whatever works.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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