HER2 Support Group Forums - View Single Post

Joan M · 06-17-2008, 01:18 PM

Hi Vicki,

Have you had other sites of fat necrosis that have lit up on a PET study ("...additional sites of fat necrosis"). If you've had them before it could very well mean that you have more.

Whether or not you've had others, perhaps your onc can order a CT scan of the chest which would get a better look at the two spots. How small is "small." The PET/CT report will tell you exactly how big they are. If they lit up, or otherwise showed hyperactivity, they would probably be at least 7 mm. If they're closer to 1 cm, a CT with contrast would get a good look at them and could help make a determination.

Ask your onc what he thinks you should do to follow-up. I wouldn't wait until August to speak with him, not because it's a panic but because there's something that's questionable.

Many oncs take a wait-and-see approach, but others are move proactive. But it's really what you feel comfortable with.

Best, Joan

06-17-2008, 01:18 PM	#3
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Hi Vicki, Have you had other sites of fat necrosis that have lit up on a PET study ("...additional sites of fat necrosis"). If you've had them before it could very well mean that you have more. Whether or not you've had others, perhaps your onc can order a CT scan of the chest which would get a better look at the two spots. How small is "small." The PET/CT report will tell you exactly how big they are. If they lit up, or otherwise showed hyperactivity, they would probably be at least 7 mm. If they're closer to 1 cm, a CT with contrast would get a good look at them and could help make a determination. Ask your onc what he thinks you should do to follow-up. I wouldn't wait until August to speak with him, not because it's a panic but because there's something that's questionable. Many oncs take a wait-and-see approach, but others are move proactive. But it's really what you feel comfortable with. Best, Joan __________________ 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!!