Jan 8, 2021 07:39PM moth wrote:
Hi cushmape, I'm sorry you find yourself here. The thing is, your doctor is right. We just cant tell how long we have - though as disease progresses, you usually get notice that you're running out of treatments. I was diagnosed less than a year ago and one helpful thing someone said to me is yeah, you're dying, but not today and not tomorrow either. No need to panic but some plans might need changing.
Individuals can have wildly differing responses to treatment. Median survival for all MBC is reported as 3 yrs but the data is very shaky because of huge holes in how it's collected. Some hormone profiles do better than others. From what I've read, Bone only HER2+ seems to have best outcomes, triple negative visceral mets (that's me!) has worst. Statistically everyone else is somewhere in between but again, each individual will respond differently to treatment & some achieve stability ( or even no evidence of disease) for years.
Were you diagnosed de novo stage 4? ie were you ever diagnosed with a breast cancer at a lower stage or straight to stage 4? That does seem to affect survival as well.
I will pm traveltext and ask him to pop in & direct you to the men with breast ca resources as you have some unique challenges.
I will also suggest you check out the bone mets thread: https://community.breastcancer.org/forum/8/topics/... There are tons of people on that thread with your hormone profile. I'd suggest not reading back more than about 2 years but if you start somewhere in 2019 and just scroll through you'll learn an amazing amount in a few hours. If you look in the signature lines, that's where most people put their diagnosis and hormone marker etc so you can see how their dx compares to yours. Consider adding your dx to your sig line (in profile, and then go to settings to make it public)
Pts experiences with treatments, medicines, side effects, radiation, mobility etc - it will all start lodging in your brain & you will have a way better understanding of how it *might* play out, and I think you'll start seeing the variation in people's responses too.
Pls continue to ask questions. We're a great resource & there's tons of support and information here. From clinical trials, to new theapies, to dealing with side effects, to just hanging out and commiserating, it's all here.
Hang in there. The beginning is the worst but after a few months, it does get better. You can't imagine it ever will, and yet it does.
Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the OddsDx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone