Metastatic Breast Cancer: Really want and need to connect with others

Welcome, @hbbeckstead. I moved your post into a new discussion to help you connect with other members who are living with metastatic breast cancer like @nana10 @simondsa1 @zeerj @varsha08 @rigal @keepmoving2 @lorijeannichols @wandering @eku @mssewest @leeann66 @kahe and others who will chime in to share their treatment journey.

@hbbeckstead, I know the world of stage 4 sounds scary. Is this a recent diagnosis for you? What treatment plan has your team suggested for you?

I have metastatic breast cancer which is considered to be Stage 4. I was diagnosed 12 years ago and have utilized many different treatments. I am currently on Trodelvy (infusion). Some of my blood work is troublesome so my oncologist is going to look at my labs tomorrow and decide what to do next. While MBC is not considered to be "curable" but based on my experience it is "livable". When my treatments stop working I get changed over to something so living as long as possible makes different treatments possible. I am quite happy with my life and hope I can keep this going.

@wandering thank you. Hope you continue to enjoy life very positive to hear people who are going through cancer and living with it. 🙏🏽🙏🏽🙏🏽

Welcome @hbbeckstead to Mayo Connect, to @colleenyoung who helps connect us, and to a great team that no one ever wants to be on but we rock! You will hear from folks such as @wandering who has been on this journey for a while - I was diagnosed in 2019, now have 2 types of stage 4 cancer and am currently back in treatment.
I am living my best life. Really. The things I have done, the places I have been, my experiences. Amazing. I would not wish this on anyone but it is livable and frankly way better than I could have ever believed. Every day new knowledge is gained that is turning Cancer into cancer with a small “c” - a condition to live with. Importantly there is much you can do to regain control over your life, to help yourself. I decided I would be healthier, happier, kinder - I have used these years to be a better version of myself. As you get into the weeds, reach back out. No question nor thought is too silly or basic. While every body is different, many have experienced similar thoughts and experiences. Hang tough & good luck!!

So pleased to read about those who have lived so long with metastatic breast cancer. My breast cancer has metastasized to my lungs. My oncologist said 2-5 year survival, maybe 10 as new treatments develop.
Diagnosed in June 2024. Discontinued treatments for now as the side effects were severe… even with reduced dosage.
I feel good and now live each day with more intention and gratitude.

Hello, I am sorry you are going through this. I hope you will find the best treatment options for you, that you will be able to do as well as many others have.

I was diagnosed with stage 4 breast cancer 3 years ago, mine is HR+ HER2-. It had already spread well into my bones but hasn't spread into any organs. They started me on treatment pretty quickly after my diagnosis in the hospital.
My treatment is CDK4 6 inhibitor Abemaciclib (Verzenio), aromatase inhibitor Exemestane (Aromasin), GnRH agonist Leuprolide Acetate (Lupron Depot), bisphosphonate Zoledronic Acid (Zometa) along with pain meds for both regular and nerve pain and calcium with vitamin d. I also take a few supplements to try and help with some of my side effects as well. Melatonin (for sleeping), Tart Cherry (for deeper sleep), Magnesium Glycinate (for anxiety).

I don't feel very well at all since on my treatments, I have a lot of side effects but many people don't have those. Unfortunately, I have to continue my treatments indefinitely, in order to control the spread of the cancer.

Hello: I am Stage 4 pleomorphic invasive lobular carcinoma, triple negative. HER2 low. Mets to contralateral (other) breast, lungs, retroperitoneum, lymphatic system with cutaneous metastases, which are about 30 nodules on my chest and abdomen, biopsy showed same ILC breast cancer.

Dx of Stage 4 in April 2024. Currently on sacituzumab govitecan "SG" (Trodelvy) infusions. After Dx of Stage 4, started on trastuzumab deruxtecan (Enhertu) but cancer advanced. After 3 months of T Dxd my oncologist switched me to SG. The SG is the only chemo that helped slow the cancer growth.

Original cancer dx was April 2022, stage 3B, despite regular mammos. ILC is often not visible on imaging including PET-CT using the standard FDG (glucose-based) tracer. Had usual neoadjuvant chemo, single mastectomy, 6.5 weeks of radiation. Then Capecitebine up until I was dx stage 4. All treatments were per standard NCCN and ASCO guidelines. However, all were worthless. Waste of time, money and energy. Cancer had already spread, invisible to imaging.

In August 2025 I participated in a clinical trial at UCLA and had a PET-CT using a FAPI tracer. The FAPI tracer "sticks" to the ILC cancer cells where the FDG does not. FAPI is used for other types of difficult-to-image cancers too, although not yet FDA approved. FAPI = Fibroblast Activation Protein Inhibitor. The FAPI PET-CT showed cancer that the standard FDG PET-CT had never revealed.

How do I feel? Tired, very fatigued. Can't live a normal life. Lung tumors inhibit breathing. Pain in lower abdomen, back and flanks. SG chemo causes anemia. Plus the usual unpleasant and gross chemo side effects.

ECOG status = 1.

If I knew at the beginning what I know now, I would have begged for SG as neoadjuvant chemo. The FDA has not approve SG for neo-adjuvant use yet. With SG, I might have had a chance.

Sorry that this is a bit of a downer message. But I hope that this info helps you or others. Let me know if I can provide any other info. Wishing you the best!