Stage 1a to Stage 4 in 6 years. 39 yo. Mets to liver & bone. Chek2+
Hi everyone, my first dx was in 2018 (age 32) after self discovery. I had a Bi-lat mastectomy and had been on tamoxifen. Oncotype 11 so no chemo recommended. ER+/PR+. Chek2 positive. Feeling great with no symptoms, I did a Galleri test this October 2024, which came back with positive breast signal. CT scan w contrast showed 2 liver lesions & several bone lesions. Liver biopsy confirmed metastatic adenocarcinoma. Nothing in my blood work was off. Awaiting Guardant test results and subsequent MO appt to discuss treatment. Hoping to meet other young-ish ladies dealing with this. Love to you all.
Comments
-
@aimeeeee we are sorry to hear you are back at this, but we're all here to support you.
Other than our discussion forums, we offer professionally moderated free Zoom Support Groups. This week we have our Young with MBC group on Thursday at 1pmET if you think that could be helpful (https://breastcancer-org.zoom.us/meeting/register/tZcqc-qvrj0oE9WdOqdK0-w_M7DB3bsUHKc2#/registration). Also, there are 3 other MBC groups, also with some younger women.Are you HER2-neg or positive?
We send you gentle hugs, and are here for you!
0 -
Thank you! Hope to make the zoom soon, although I cannot make it this week. I am Her2 negative.
1 -
We will see you when you can. Thanks for letting us know your HER2 status. One day at a time ❤️
0 -
hi! Your post caught my eye because I have chek2. I am so sorry to hear of your recent diagnosis. Big hugs!
0 -
Hi! Thanks so much for the message! Will get through this! I’m telling everyone about the Galleri blood test because I never would have found this otherwise. MSK had me in survivorship, and all my labs are normal. Sending love!
1 -
Hugs to you @aimeeeee ! Glad you are at MSK (Memorial Sloane Kettering). You're in good hands there.
0 -
Hi, just an update on my treatment - faslodex, lupron, and xgeva infections monthly and Ibrance and Inavolisib pills daily (ibrance 3 weeks on, 1 week off). I started the injections 4 days ago and have had no SE so far. Awaiting the pills. Will update as I continue this journey.
1 -
hi @smn - thank you for your msg! I first heard of Galleri through FunctionHealth.com, where I get comprehensive lab panels. It’s an add-on test for about $900. You need a script to get it, but my doctors at MSK would not have likely have ordered it for me (more on that below). The test detects circulating tumor dna (ctDNA) in your blood, so it’s a simple blood draw. It is not Standard of Care (SOC) to test your blood this way or scan your body with imaging after you’ve had bi-lateral mastectomy and are on treatment (in my case I was supposed to be on tamoxifen for 10 years). They figure you're “cured”, as my breast surgeon told me, even though you could still have potential microscopic cancer cells lingering around. The issue with this kind of test is if you do it, and it comes back positive, and then subsequent imaging (in my case CT scan w contrast) comes back clear, there’s no SOC for how to proceed. The doctors can’t prescribe treatment because there’s nothing on the scan to confirm anything is actually wrong. So you would basically be waiting for something to manifest either physical symptoms or abnormal labs. You could elect to pay out of pocket for additional imaging down the road, but we know how $$ that can be. In my case, the Galleri came back with a positive signal for breast cancer, and the imaging/biopsy confirmed the metastases. Galleri is marketed as early detection, but it’s really better for finding Stage 3/4. Without this test I would be walking around, ignorance is bliss, thinking everything was perfect, going to my yearly nurse oncologist/survivorship appointments, telling them I feel fabulous until one day, who knows when something would finally be off. If you can deal with the mental fuckery, I would suggest getting tested every so often, but that’s me; I like info. For reference, I was first dx 2018 Stage 1a, IDC w 1.6cm tumor left breast, ER/PR+, Her2-. The metastases are also ER/PR+, Her2-. I hope this is helpful. Please msg back with any more questions. xx
0 -
@aimeeeee thank u for sharing! Helpful to know about these options...at the very least I can discuss it with my MO. For me, not sure if I could sleep at night if blood test was abnormal but nothing turned up on scan and no treatment. ..but I can see how helpful it was in your case!
0 -
@aimeeeee, Thanks for the info. I have an indeterminate lesion in my acetabulum which looks like a met on MRI. An ortho onc advised against biopsy since it would likely irreparably break my hip. I had a FES PET looking for something else to biopsy but only the fibrosis in my lungs (also ER+) lit up. I have a MRI in about a week to check for growth. Statistically there’s about a 5% chance it is benign. This test looks like it might be helpful in my situation. I’ll discuss it with my MO when I see her.
0 -
@maggie15 hope this is helpful. There’s also the Guardant360 blood biopsy. I’m still awaiting results so not entirely sure what that will tell us. My friend had a lung biopsy done and said it was not fun because you have to be awake to breathe on cue. Keep me posted; I’ll be thinking of you. xx
0
