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caroline96 · 09-05-2011, 01:23 PM

Hi Tricia,
This is the first time I post something here though I've been lurking here for months. Your story is very similar with mine in regards to normal bone scan. I hope my story will give you some directions for your next move.

My annual chest X-ray came back fuzzy in the left lung last year. So was my follow-up chest CT. Then, I had PET scan done in November 2010 and it showed a mass, multiple nodules in my left lung, and suspicious area in my sacrum. I took the bone scan and it came back normal (no bone involvements)! Then I took the biopsy of the mass in the lung and it confirmed my stage 4 status with mets to the lung (and bone?). The lung met was confirmed but the bone met landed on the gray area. Surprisingly, my onc was sure enough to rule out the bone met due to the normal bone scan. I was given only Xeloda. He also turned down my request to retest my HER2 status. I never looked back and moved on to MD Anderson.

My new oncologist retested my HER2 and redid all the diagnostic tests. The PET/CT (full body scan of combined PET and CT) showed a mass in the left lung, a dozen nodules, bone mets in sternum, rib, L1, and sacrum !!!!!!!!). HER2 retesting also confirmed that the tumor now is HER2+. My course of treatments has since changed dramatically with the addition of Herceptin and Zometa. My scan last June showed that the bones are clear! (although the tumor in the lung increased in size).

I can't help sharing what I have experienced with you in the hope that my story might help you reach a decision.

Love and blessings,
Caroline

09-05-2011, 01:23 PM	#18
caroline96 Member Join Date: Jan 2011 Location: Houston, TX Posts: 9	Re: What would you do? Hi Tricia, This is the first time I post something here though I've been lurking here for months. Your story is very similar with mine in regards to normal bone scan. I hope my story will give you some directions for your next move. My annual chest X-ray came back fuzzy in the left lung last year. So was my follow-up chest CT. Then, I had PET scan done in November 2010 and it showed a mass, multiple nodules in my left lung, and suspicious area in my sacrum. I took the bone scan and it came back normal (no bone involvements)! Then I took the biopsy of the mass in the lung and it confirmed my stage 4 status with mets to the lung (and bone?). The lung met was confirmed but the bone met landed on the gray area. Surprisingly, my onc was sure enough to rule out the bone met due to the normal bone scan. I was given only Xeloda. He also turned down my request to retest my HER2 status. I never looked back and moved on to MD Anderson. My new oncologist retested my HER2 and redid all the diagnostic tests. The PET/CT (full body scan of combined PET and CT) showed a mass in the left lung, a dozen nodules, bone mets in sternum, rib, L1, and sacrum !!!!!!!!). HER2 retesting also confirmed that the tumor now is HER2+. My course of treatments has since changed dramatically with the addition of Herceptin and Zometa. My scan last June showed that the bones are clear! (although the tumor in the lung increased in size). I can't help sharing what I have experienced with you in the hope that my story might help you reach a decision. Love and blessings, Caroline __________________ Diagnosed 05/2003 as stage 1 IDC and stage 0 DCIS (2 tumors) through exicisional biopsy of right breast. Tumor biology: ER +, PR +, HER2 --, grade 2. Ki67: 35% (high) Lymph nodes involvement: 0/18 lymph nodes. Treatments: Lumpectomy, 4 cycles of Adriamycin and Cytoxan, followed by 33x radiation. Tamoxifen for 5 years. 7 years NED. Recurrence: diagnosed on 12/2/2010 as stage 4 BC. No breast involvement. Mets: lung (one tumor and 12 intrapulmonary nodes), bones. Tumor biology: ER+, PR ?, HER2 + through FISH ratio. Treatments: 12/2010: Xeloda. 12/2010: Changed Dr (he refused to retest for HER2) 01/2011: Added Zometa, crashed @ ER due to severe reactions to Zometa but continue on Zometa. Informed of HER2+ status when in hospital. 02/2011: Added Herceptin. 06/2011: Bones clear! But progression in lung....Changed tx to Taxol. Now on Taxol, Herceptin, Zometa combo. 02/2012: Stopped Taxol due to lymphedema. 06/2012: Oopherectomy, started Femara. 02/2013: NED.