HER2 Support Group Forums - View Single Post - PET/CT follow-up of lung RFA

Joan M · 02-02-2009, 05:56 PM

It does seem a mystery that even though there are areas in the lung that are lighting up with SUVs higher than I've ever had before, that a determination cannot be made.

Chris, I take Herceptin (When I re-wrote my signature I inadvertently left that out).

I initially took Herceptin off label for 52 weeks when I was diagnosed in Sept. 2003 with Stage IIb, and then started it again after the 1 cm lung nodule was discovered in April 2007. I haven't added chemo yet because I've been NED after each procedure (after the lung wedge resection, after the radiofrequency ablation for the lung recurrence, and then again after the brain surgery in October that removed the 3 cm nodule from my left frontal lobe). I went off Herceptin for three months in late 2007 because my muga score dropped from 70 to 57, and my onc said that a 10 percentage point or greater drop is the guideline for stopping Herceptin. After three months my muga came back up and I started taking it again. Now my onc wants to add Tykerb.

Ceesun, my onc was concerned about the lymph node more than the two new spots that lite up because no nodules could be seen on the CT portion of the scan where the spots are. That is, the PET part measured a signal for metabolic activity, but the CT didn't actually physically see tumors. Also, she'd be concerned if it were in my lymph node.

I've been thinking that I might not want to wait until April for the next scan. It does seem like a long wait.

Your thoughts and prayers are great comfort to me. I often wonder how I would have ever gotten through the brain surgery if it hadn't been for all the support and care I received here. I can't explain it other than to say that when I got into the operating room it felt somehow like I had been there already, and in some way that really helped me deal with the fear.

02-02-2009, 05:56 PM	#8
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	It does seem a mystery that even though there are areas in the lung that are lighting up with SUVs higher than I've ever had before, that a determination cannot be made. Chris, I take Herceptin (When I re-wrote my signature I inadvertently left that out). I initially took Herceptin off label for 52 weeks when I was diagnosed in Sept. 2003 with Stage IIb, and then started it again after the 1 cm lung nodule was discovered in April 2007. I haven't added chemo yet because I've been NED after each procedure (after the lung wedge resection, after the radiofrequency ablation for the lung recurrence, and then again after the brain surgery in October that removed the 3 cm nodule from my left frontal lobe). I went off Herceptin for three months in late 2007 because my muga score dropped from 70 to 57, and my onc said that a 10 percentage point or greater drop is the guideline for stopping Herceptin. After three months my muga came back up and I started taking it again. Now my onc wants to add Tykerb. Ceesun, my onc was concerned about the lymph node more than the two new spots that lite up because no nodules could be seen on the CT portion of the scan where the spots are. That is, the PET part measured a signal for metabolic activity, but the CT didn't actually physically see tumors. Also, she'd be concerned if it were in my lymph node. I've been thinking that I might not want to wait until April for the next scan. It does seem like a long wait. Your thoughts and prayers are great comfort to me. I often wonder how I would have ever gotten through the brain surgery if it hadn't been for all the support and care I received here. I can't explain it other than to say that when I got into the operating room it felt somehow like I had been there already, and in some way that really helped me deal with the fear. __________________ Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!