Aug 5, 2020 12:49PM mara51506 wrote:
Cinloo, at times we are fairly active depending on what is going on for people.
I have been dealing with brain stuff since 2015 according to my MO. It was only cells back then so did not show up on any scans. Had my chemo first, then Herceptin and Perjeta. My body has no evidence of disease from the neck down which is fortunate. My brain met became evident in 2016. I had a 10 cm tumor and was having seizures and nausea due to brain swelling. I was given a lot of steroids, had a craniotomy and whole brain radiation. RO said the whole brain radiation was due to having inflammatory breast cancer and trying to prevent a whole bunch of mets from showing up. 4 years on, I only have had to treat the original sugery site with follow up radiation though this was not unexpected as the original tumour had partially wrapped around a vein.
I am feeling fairly strong, walk multiple times most days, enjoy eating a lot. I am dealing with things mostly by myself but I feel OK. Scans on body and brain are now six months apart since I am lucky enough to have enjoyed stability.
In the beginning I too was terrified. You can't help but be terrified when you have so much information flying at you. It will take time for your brain to adjust (not meaning about the mets) to your new normal. Social workers, staying active physically and meditations I listen to at night help a lot. But as I said, it will take time to process things. I hope you have good people surrounding you to help you deal with this. I am sorry you are here but glad you posted. PM if there are any other questions. Also, when you have time, it may be helpful to fill out the info on your diagnosis eg ER/PR + or negative, HER 2+ or -. That way it would give us an idea about medications that are available for you.