Treatment delays for advanced cancer

Franco0291

hi all, my name is Dora and I currently have stage IV Breast cancer metastasized to the brain. My journey began back in February 2018 with my primary sending me over to the surgeon who delayed my treatment by at least 3 months with just back and forward of not getting anywhere. They had me do a mammogram but it was done incorrectly so they sent me over to st Francis hospital and finally they did my biopsy in may. My primary changed my surgeon and finally I felt comfortable with him since he was actually caring. By June they informed me I had grade 3 Breast cancer. Around July they did scans on my pelvis, lungs chest and thyroid but all came back negative, since I started to have Blurry vision the oncologist sent me over to have an MRI In the Brian. Results came back and my oncologist said it did not look good I have a 0.5 mass and metasizized to the brain. Now being August I’m finally going to get radiation on my brain and I am currently going trough anastrozol to slow down my cancer. They cancelled my chemo because my oncologist told me I can’t do radiation and chemo at the same time

I am wondering what should I expect for my brain radiation?

Does anastrozol really slow down my cancer?

Why did it take such a long time to get to this point since February? Is that normal

My oncologist is not always available to ask her questions and I don’t have an appointment until August 9.

Thank you for reading!

illimae

Dora, it sounds like you did wait an awfully long time, it should be weeks, not months.

Do you know how many spots you have in your brain and the type of radiation to be done?

Is there a patient portal or email for your doctor that you can send questions to between appointments?

Franco0291

I have no clue to be honest, my oncologist told me over the phone and it was just so much information to take in. I sort of wish I can see her in person instead . They never told me how many lymph nodes affected all the information has been extremely minimal

illimae

Do you have someone that will go with you and can help with questions and answers or to take notes? Perhaps you can also get info for a help/nurse line. I wish I could offer more but the response to brain radiation varies and side effects are dependent on the number, size, location of mets, as well as, which type of radiation is used.

There is a thread here called Brain Mets sisters and on page 205 (I think), is a video of the different treatments, it should help prepare you.

Bestbird

I am sorry to hear of the delay in treatment and hope you respond very well to radiation and hormonal therapy! I know several people with brain mets who have done well for years.

If you are interested, I've written a comprehensive Guide to MBC that lists treatments for brain mets and much more. To instructions on how to request a free copy, you and others are welcome to visit https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_73

Franco0291

now there is more delay, they messed up on my authorization something with the billing code being incorrect I can’t even schedule an appointment with the neuro surgeon and radiation oncologist has not even been approved after a week.I’m basically going to die from the wait.

illimae

it might be time to get bitchy or find a different hospital. I’m sorry you’re going through so much just to get proper treatment