HER2 Support Group Forums - View Single Post - I think I just got bumped from Stage IIIC to IV

DeenaH · 01-11-2011, 03:22 PM

Not a good day for me today. I had a PET/CT on Friday at UCSF, and I got the report today. I had them fax it directly to me as well as sending it to my local onc, Dr. Slamon and my UCSF onc. I haven't talked to any of the doctors yet, but I understand enough of the report to know that I now have lung mets, returning cancer to superclavicular nodes, and new positive nodes next to my trachea (can't remember what those were called). I am actually more scared about the nodes than I am the lung mets. Obviously Herceptin is not working for me. My head is spinning because I really thought it would be good news, even though I knew I had lung spots. The doctors all seemed to think they would be nothing.

The way the report reads at the bottom is like this: Widespread pulmonary metaseses with superclavicular and the trachea node (whatever they are called) metaseses.

That may not be word for word, but it's the gist of it.

Any advice on where to go from here? One of the possibilities is to add Lapatinib to Herceptin. Another thing I want to look into is TDM-1 since I am now Stage IV. Anyone know what the requirements are for the trials that are still open? Any other new drugs I should research? I don't know if they will suggest more chemo at this point. So scary!!

01-11-2011, 03:22 PM	#1
DeenaH Senior Member Join Date: Apr 2010 Posts: 129	I think I just got bumped from Stage IIIC to IV Not a good day for me today. I had a PET/CT on Friday at UCSF, and I got the report today. I had them fax it directly to me as well as sending it to my local onc, Dr. Slamon and my UCSF onc. I haven't talked to any of the doctors yet, but I understand enough of the report to know that I now have lung mets, returning cancer to superclavicular nodes, and new positive nodes next to my trachea (can't remember what those were called). I am actually more scared about the nodes than I am the lung mets. Obviously Herceptin is not working for me. My head is spinning because I really thought it would be good news, even though I knew I had lung spots. The doctors all seemed to think they would be nothing. The way the report reads at the bottom is like this: Widespread pulmonary metaseses with superclavicular and the trachea node (whatever they are called) metaseses. That may not be word for word, but it's the gist of it. Any advice on where to go from here? One of the possibilities is to add Lapatinib to Herceptin. Another thing I want to look into is TDM-1 since I am now Stage IV. Anyone know what the requirements are for the trials that are still open? Any other new drugs I should research? I don't know if they will suggest more chemo at this point. So scary!! __________________ March 2010: Diagnosed with Stage IIIC IDC with axillary, mammary and suplaclavicular node involvement. ER/PR -, HER2+++. 7cm tumor in right breast. April 2010: Started neoadjuvent chemo. 4 DD A/C every 2 weeks, 4 DD Taxotere every 3 weeks with Herceptin weekly. August 2010: Finished chemo! August 20, 2010: PET/CT showed no cancer in any nodes, and only a little uptake to the breast. September 9, 2010: Bilateral mastectomy with immediate reconstruction with implants and Alloderm. September 16, 2010: Pathology report showed 18/51 positive axillary nodes, 3.2cm tumor. Granual sized cancer found in the fatty tissue between levels 1 and 2. October 19, 2010: CT showed several spots on lungs and 1 spot on liver. Liver spot is 2mm, lung spots range from 2mm to 4mm. We don't know if they are cancer or not. 12/15/10: Brain MRI clear 1/7/11: PET/CT 1/13/11: Recurrence in lungs. Start Tykerb 5/13/11: Progression in lungs 6/3/11: Lung surgery to get tumors for chemosensitivity testing.