Brain radiation

 I saw the brain radiologist and learned that I would need one radiation surgery treatment to blast the remaining bit of the tumor that was not removed during the crainiotomy. I will go in to have a head mask made and some CT scans done that will be merged with the post-surgery MRI to target the tumor for the radiation beam. This will happen next week, after I'm done with the breast cancer radiation treatments. The actual radiation treatment will be a week later. I have just one more breast cancer radiation treatment left, tomorrow. The main side effect of the radiation has been a sunburn-like skin change in the area that is being radiated with a couple of itchy sore spots. The radiologist told me to apply hydrocortisone cream as well as the Aquaphor lotion three times a day. Honestly it could have been a lot worse, both with the skin changes and the fatigue levels. I've been a little tired but not unable to take the subway to the clinic and back. My mystery lower intestinal distress issues have slowly been resolving as well, after ten days of real pain in the butt.

It turns out that they will be using iodide contrast dye for the CT scan and I am allergic to it. So they want to dose me with prednisone and benadryl before the scan. Needless to say, this is freaking me out. I will need to take three doses of the prednisone before the test: one 13 hour before, one 7 hours before and the last one an hour before along with the benadryl. I will need to have someone accompany me home because the benadryl will make me drowsy. I am trying not to be anxious about this. They said there will be nursing care there in case they need to inject me with something. Yikes.

Tomorrow I will see a neuro-oncologist to follow up on the genetic testing for VHL. So I will have the radiation treatment at the clinic in Chelsea and then the doctor's appointment uptown. Another day of subway rides between clinics. I have been to just about every Mount Sinai clinic and hospital in Manhattan.

Brain tumor

 As part of the breast cancer diagnosis I had some genetic testing done. I had no mutations associated with breast cancer but I did have a mutation associated with tumors on the adrenal glands. It was recommended that I consult with and endocrinologist so I did and she recommended that I have my oncologist order some scans. I ended up having a PET scan and MRIs. The PET scan showed no adrenal tumors but did show two areas of concern: a spot on my pelvis and others in my brain. The MRI showed two brain tumors, one fairly large and the other rather small. I was referred to a neurosurgeon who immediately scheduled surgery to remove the larger tumor and who said it was likely a metasteses of the breast cancer. Within a week I had a craniotomy to remove the tumor. I was in the hospital for three days so they could give me three lumbar punctures-horrible--and then they sent me home with a bunch of prescriptions for steroids and anti-seizure meds. They only shaved a narrow strip for the incision up the back and on the left. The surgeon said that the baby tumor was connected to the big one but that we should treat it with radiation once I had recovered from the surgery.

The experience in the hospital was OK in spite of how hard it was to sleep with the automatic blood pressure cuff that would inflate every so often. I was hooked up to monitors and IV lines and had to ask the nurses to unhook me so I could go to the bathroom.They also took blood at midnight for some reason. My brother drove up for Maryland and my daughter's dad flew in from Spain to be there for the recovery. Once I got home they cooked for me, did all the shopping and dishes, and basically waited on me hand and foot. I was so grateful they were there to support both me and my daughter who was very brave and positive throughout the whole ordeal. I am very fortunate that I have been healing well with no head pain or incision discomfort. Just fatigue and post anaesthesia grogginess. 

I was trying to wrap my head around having stage IV metastatic cancer while waiting for the tumor pathology report to come back. After ten days I got the report and it turn out that the tumor is not breast cancer related. I have a relatively rare but benign tumor called a hemangioblastoma. It's a primary brain tumor meaning it originates in the brain and is not from cancer elsewhere in the body. It could be a stand-alone tumor or it could be due to a genetic mutation called Von Hippel-Lindau (VHL) disease. If that is the case than multiple tumors can occur and it can grow back. I have an appointment with a radiologist tomorrow so I'll have a chance to ask questions, and I see the neurosurgeon at the end of the week to have my stitches and staples removed. My oncologist talked to me on the phone about the report and said she would refer me to a neuro-oncologist since she is a breast cancer specialist and doesn't know much about brain tumors. UPDATE. Neuro-oncologist says there is no Von Hippel-Lindau as per my genetic testing panel--yay!

So I'm enormously relieved that the tumor is benign. Bone scans have also shown that the spot on my pelvis is not cancer either. So I'm not stage IV. I still have to complete the breast cancer radiation treatment (I have 7 more sessions left so a week and a half). Then we'll see how many and what kind of brain radiation I will need to have to blast the baby tumor.