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Andrea Barnett Budin · 09-15-2013, 10:49 AM

YES, Becky!

Telling me I have dense breasts, and NOT telling me what they write down behind the scenes, should be criminal!

Certainly NOT IN THE BEST INTERESTS OF THE PATIENT!

I have learned through these many yrs (since my '98 recurrence, which "I" FOUND studying and comparing my blood results and hearing the onc say 3x over 6 mnths WHEN PRODDED for more info -- Well, your liver enzymes are "slightly" -- but very very slight -- I asked for a liver sono, which meant an abdominal sonogram).

I NOW GET A COPY OF EVERY REPORT WRITTEN RE TESTS AND PATHOLOGY REPORTS AND SURGICAL PROCEDURES.

But I never realized there was a hidden report re mammos!! We get the short perfunctory letter -- that's it!

Of course, the insurance companies will balk at the added $$$$ expense of MRIs, which are perhaps only necessary for those with "dense" breasts. Lots of politics will enter the equation. But Becky, you are so right on. There ought to be a law!

Patient's rights are listed all over the place at doc offices and facilities but those reports, which you should have every right to, can help you discuss matters with your doc (who should be discussing matters with you anyway!). Those reports can help you determine a plan of action. Alert you.

Thanks for that, Becky!

(One onc used to dictate his report after an exam seated at the counter, talking into the phone, his back to you as you dressed.

I heard him say, The patient presents as being lobular and HER2+ which is highly unlikely! He gave a brief synopsis of my history and said, IT IS REMARKABLE THAT THE PATIENT HAS SURVIVED THESE MANY YEARS...)

I WAS IN THE ROOM! I don't go to that onc anymore...

I did attend an early morning lecture of his with my husband. Granted he is brilliant and is into bc research. He was talking about one patient who... He was talking about me, in a kinder, gentler, inspirational manner...

Andi

09-15-2013, 10:49 AM	#18
Andrea Barnett Budin Senior Member 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: Let me be your voice YES, Becky! Telling me I have dense breasts, and NOT telling me what they write down behind the scenes, should be criminal! Certainly NOT IN THE BEST INTERESTS OF THE PATIENT! I have learned through these many yrs (since my '98 recurrence, which "I" FOUND studying and comparing my blood results and hearing the onc say 3x over 6 mnths WHEN PRODDED for more info -- Well, your liver enzymes are "slightly" -- but very very slight -- I asked for a liver sono, which meant an abdominal sonogram). I NOW GET A COPY OF EVERY REPORT WRITTEN RE TESTS AND PATHOLOGY REPORTS AND SURGICAL PROCEDURES. But I never realized there was a hidden report re mammos!! We get the short perfunctory letter -- that's it! Of course, the insurance companies will balk at the added $$$$ expense of MRIs, which are perhaps only necessary for those with "dense" breasts. Lots of politics will enter the equation. But Becky, you are so right on. There ought to be a law! Patient's rights are listed all over the place at doc offices and facilities but those reports, which you should have every right to, can help you discuss matters with your doc (who should be discussing matters with you anyway!). Those reports can help you determine a plan of action. Alert you. Thanks for that, Becky! (One onc used to dictate his report after an exam seated at the counter, talking into the phone, his back to you as you dressed. I heard him say, The patient presents as being lobular and HER2+ which is highly unlikely! He gave a brief synopsis of my history and said, IT IS REMARKABLE THAT THE PATIENT HAS SURVIVED THESE MANY YEARS...) I WAS IN THE ROOM! I don't go to that onc anymore... I did attend an early morning lecture of his with my husband. Granted he is brilliant and is into bc research. He was talking about one patient who... He was talking about me, in a kinder, gentler, inspirational manner... Andi __________________ 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...