HER2 Support Group Forums - View Single Post - Brain Necrosis - No Add'l Treatment

Joan M · 06-14-2011, 09:42 PM

Kris,

I recommend a second opinion with a neuro-oncologist, preferably in a place that sees a lot of patients with brain cancer or mets.

In October 2008, I had a craniotomy followed by five dosages of targeted radiation. After the treatment, the area looked normal, but after about six months, each 3-month MRI follow-up scan began to look more and more enhanced, and the radiologist's impression in each of these reports said they couldn't rule out regrowth.

Finally, the neuro-oncologist (who I have been seeing since a few months after the surgery), ordered in January 2010 a brain PET which turned out to be normal. That is, the scan did did not show any difference in metabolic activity in the treated area than in the rest of my brain. He said that with cancer it's hard to say 100 percent, but that he was 95 percent sure it was scar tissue (that is, necrosis), and not regrowth. The neuro-oncologist also said that scar tissue can sometimes cause a brain PET to light up and if that had happened, it would have been hard to tell the difference between regrowth and necrosis, and then surgery might be necessary.

I believe that is what happened in Steph's case. She had targeted radiation initially but eventually the doctors decided to do a craniotomy to rule out regrowth. They found only necrosis. But as Chris mentioned, Steph can give you the specifics.

Why was your brain PET inconclusive? Did it light up? What was the radiologist's impression in the report.

Joan

06-14-2011, 09:42 PM	#13
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Re: Brain Necrosis - No Add'l Treatment - Your thoughts Kris, I recommend a second opinion with a neuro-oncologist, preferably in a place that sees a lot of patients with brain cancer or mets. In October 2008, I had a craniotomy followed by five dosages of targeted radiation. After the treatment, the area looked normal, but after about six months, each 3-month MRI follow-up scan began to look more and more enhanced, and the radiologist's impression in each of these reports said they couldn't rule out regrowth. Finally, the neuro-oncologist (who I have been seeing since a few months after the surgery), ordered in January 2010 a brain PET which turned out to be normal. That is, the scan did did not show any difference in metabolic activity in the treated area than in the rest of my brain. He said that with cancer it's hard to say 100 percent, but that he was 95 percent sure it was scar tissue (that is, necrosis), and not regrowth. The neuro-oncologist also said that scar tissue can sometimes cause a brain PET to light up and if that had happened, it would have been hard to tell the difference between regrowth and necrosis, and then surgery might be necessary. I believe that is what happened in Steph's case. She had targeted radiation initially but eventually the doctors decided to do a craniotomy to rule out regrowth. They found only necrosis. But as Chris mentioned, Steph can give you the specifics. Why was your brain PET inconclusive? Did it light up? What was the radiologist's impression in the report. 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!!