2nd try - brain mets from the start

[v-ness]

since i attempted this post the other day i've had more news on my niece. at first i got a message that my husband's niece had surgery on a tumor on her pituitary gland that had invaded her sinus cavity and the doctors, in the physical exam, discovered a mass. a needle biopsy showed it is breast cancer. her parents told me the brain tumor is "related to" the breast cancer, so i thought it was mets. i could not understand why in the world they would do Gamma Knife and anti-estrogen therapy to shrink the tumor in her breast and no chemo. it made no sense if she was stage 4. however, today i got a bit more info and talked to my doc as well. he told me that a pituitary gland tumor is usually benign, but can wreak havoc on your hormones. perhaps that is partly why her apparent ER+ BC developed. they couldn't get the whole tumor, hence the Gamma Knife for the future. in fact, she still doesn't even know what stage she is, she's had no sentinel node biopsy nor a lumpectomy, though a PET is in the works.

so when i tried to write this post the other day i was extremely upset. i just lost a triple negative friend to brain mets in february, then this loss of courtney a week ago.... so when my niece was diagnosed and had this brain tumor i kind of lost it for a day or two. you know when things are just too much? she is only 38, young like courtney and my friend kim. what the hell is going ON????

i feel a little better today hearing (albeit 3rd hand) that her pituitary tumor was benign. i pray it is not in her sentinel node nor anywhere else. this kid has had it rough. diabetes since age 5, almost died several times, terrible car accident 2 yrs ago that left her in traction for 3 months, MRSA, now these two things in tandem.

i offered to be of any help possible if they need help understanding all the breast cancer lingo or guidance to good sites on the net. she and her husband haven't contacted me, but at least the offer is there. i know how much it means to connect with someone who's *been there*.

anyway, that is the story for now. my original fear of stage 4 brain mets right at diagnosis seems to be wrong - thank god. i would give anything for her to get some break and have stage one. thanks for listening.

v

[Pray]

Gods blessings to you an your niece. Please know I will be praying for you and your family.

Peace,

Nancy

[v-ness]

well, as it turns out, my niece is stage 4 from the get-go anyway. the tumor in her head was indeed a benign pituitary tumor, but still so big that they couldn't get it all via normal surgery. scans have shown that the cancer is in her spine, high up by her neck. there are several spots, apparently, but this one concerns the doctors. they gave her a shot to induce menopause and so far i haven't heard anything about chemo, which baffles me no end. however, i did hear that she is saying she's going to "beat this" and given the fact that she's outlived doctor's predictions already by almost 30 yrs, maybe she can. a great attitude goes a long way, but nothing can compete with the crap shoot that is cancer.

[Rich66]

Can't find the initial post. Do they have biopsy confirmation of BC? Any chance PET uptake in spine is from the accident/degeneration?

[v-ness]

i've wondered the same thing. she broke her back in the car accident 2 yrs ago. she hasn't even had a sentinel node biopsy! according to my brother in law, they are using anti-estrogen pills to "shrink the breast tumor". now that i am back from my sister's wedding, i am going to ask him for more explicit information. i really wish i could talk to her myself, but i don't want to invade her space during a traumatic time. it's hard to know what to do. i really wish she'd get a second opinion, after all MA is the land of hospitals galore and i'd bring something so complicated to dana farber myself.

[Rich66]

Sounds like they must have at least a needle biopsy to warrant the attempt to shrink the tumor with endocrine therapy. might not pursue node biopsy until lump/mastectomy.
But..the differential diagnosis scanwise between mets and spine trauma is a bit challenging from what I've seen. My elderly mom had a spot on spine/neck that had various types of scans trying to make sense out of it...and I don't think they really know 100% w/o bone biopsy. If I remember, MRI might be the best scan for it. Worth delving into if it's the difference between stages. But...might be beneficial to leave it murky if it only means addition of zometa...potentially worthwhile either way.
(giving you a little nudge to politely butt in)

[Jackie07]

Valerie,

Any update on your husband's niece?

[v-ness]

thank you for asking, Jackie. i just wrote her dad an hour ago. her breast cancer has mets to the spine and her doctors are concerned about the one highest on her spine. they have given her a drug to put her into immediate menopause to shrink the breast tumor and were doing some radiation on what is left of the pituitary tumor. last i knew, the local oncologist had referred her to Dana Farber to see if they had something more to help her. it is frustrating because her parents pass info on to me and they only know bits and pieces and don't know the lingo we all learn during BC. i hope to hear more today and will share. i do know a HER2+ woman treated at DF who has had it in her liver and bones and is in her 7th year now. but unfortunately my niece is not HER2+.