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Old 05-04-2011, 07:29 AM   #1
DianaT
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PET scan results good, Brain MRI - ??? Radiation Necrosis???

I hope someone can offer advice. I was originally diagnosed with IIIC breast cancer, only Her2+, ER-/PR- in Jan 08. Then diagnosed with a solitary 8mm brain met in Feb 09. Everything had been clear since then and I was on herceptin/tykerb/avastin. Thanks to the FDA I was not able to have the avastin after Dec 10. My brain MRI on Monday said initially that I had another solitary met. My med onc and rad onc disagree because it is in the EXACT same spot as my original met and is smaller then that. My rad onc said it is not even shaped like a met normally is and really does believe it is radiation necrosis. The rad onc had me do another scan this time to check for blood flow to the site but warned me that those tests are not always accurate either. She is presenting my situation to a tumor board this morning to get the opinion of other experts as well. I am waiting on pins and needles.

I have read that avastin helps shrink radiation necrosis in the brain so I am thinking that maybe that is why I didn't have any RN before because I was on the avastin. I am going slightly insane because I truly felt great. I have also read about boswellia extract for swelling of the brain but I don't think I have any of that. Any advice/similar scenarios out there?
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Old 05-04-2011, 06:57 PM   #2
Joan M
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Re: PET scan results good, Brain MRI - ??? Radiation Necrosis???

Diana,

You should still be able to get Avastin despite the FDA's decision.

Is the blood flow scan another type of MRI?

I had a 2.6 cm brain tumor removed via a craniotomy followed by five shots of targeted radiation (IMRT). The first couple of MRI follow-up scans every three months looked good, but then started to get more enhanced on successive scans. My neuro-oncologist followed up with a different type of MRI and then three months later, a brain PET. The PET showed no activity. As a result, he felt that the enhancement was necrosis of the tumor bed. The area has now gone back to looking normal.

I'm due for another brain MRI in a week or so, and getting nervous, as I'm always worried about other mets popping up.

Joan
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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!!
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Old 05-06-2011, 07:32 PM   #3
DianaT
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Re: PET scan results good, Brain MRI - ??? Radiation Necrosis???

Thank you Joan! I had my treatment of herceptin along with avastin yesterday. Praying this works!
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