AdvancedBC.org is dedicated solely to the needs of people living with metastatic breast cancer. Here you will find links to online resources, information about research and treatments, and the perspectives of Musa Mayer, long-time advocate and author.
What to do when you're newly diagnosed with metastatic breast cancer
Finding out that breast cancer has recurred or spread beyond the breast is always a terrible blow. Almost all breast cancer patients know already that this means their prognosis, which may have been good, is no longer nearly as hopeful. They've been told that while it is treatable, their cancer is no longer curable. Unless they've known others with metastatic breast cancer, they may even assume that a recurrence signifies imminent death. It takes time, accurate information and support to work through these early reactions.. (From The Shock of Recurrence)
Most people find they want and need three things above all as they struggle to process the bad news:
Information: They want good information that will lead to the best possible medical care.
Support: They need emotional support from those they love, and to share with others who are living with the disease, and to hear what it's been like for them.
Hope: They want to learn about research and new treatments that hold the promise for extending the lives of women with metastatic breast cancer. They also need to learn that it is possible to live with the disease, and live well, for whatever time they will have.
A good place to start is First Clicks
Check out the AdvancedBC.org Facebook Page for the latest MBC research news and events.
Download the results of a new survey of 585 women with metastatic breast cancer reporting on their symptoms and side effects and how well their treatment team controls them, given as a presentation at the ABC2 Consensus Conference. Slide Presentation
October, 2013 Read the PRESS RELEASE for the newly formed
Metastatic Breast Cancer Alliance.
- A Message of Hope from Cindi
- posted to the BCMETS mailing list, December, 2008:
- I wanted to pass along my encouraging story and give others a bit of hope for the holiday season.
- I've been in treatment for NINE YEARS now for metastatic breast cancer. Several times along the way my doctors have been honest with me about my situation and I prepared for the worst. I have bone mets in 98 percent of my body and even broke a small bone in my foot last year without even knowing it. I always say "Ask me where I DON'T have cancer, it's much easier". I don't worry about it though and keep on doing my physical volunteer work. I'm a zoo keeper and have to lift 50 lb bags of feed, move wheel barrows full of dirt and poop and crawl up ladders to work on the top of the animal enclosures. I rake, shovel and have to stay alert to all the animal care procedures that are always changing. It exhausts me and at times I think I can't do it anymore. I'll be 55 years old this month and most people I work with are under 25 and healthy, LOL. I love my job though and I feel it's been the reason for my continued survival. It's almost a mile from parking the car to the area I work it and just getting there is a major feat in inself. There were times when I counted each step, telling myself that I WOULD make my legs keep working and I WOULD find the strength to walk all that way. I was so stubborn, LOL, that I always managed.
- Two years ago, the cancer moved in to my bone marrow and I progressively got weaker and weaker. I needed blood (red and platelet) transfusions, sometimes as frequently as every 2 weeks. My skin was yellowish looking, my stomach always bloated and pain seemed to be constant and unrelenting. I began to have migraines that kept me in bed for days too.
- Last year the cancer moved to my lungs and liver and my oncologist was very grim in his prognosis. Being a realist, I totally agreed with him and again made preparations for the worst. After a year on Abraxane and Avastin, my tumor markers gradually came down and things seemed to stabilize. Last month I realized that it's been months since I've needed a transfusion. My doctors and nurses just shake their heads and said they've never seen such a turn around with bone marrow disease. I can breathe better now and don't even know I have liver mets.
- Just had a bone scan and again, my oncologist shook his head and said he'd never seen a report like mine. It showed that all cancer tumors are dormant and no evidence of activity anywhere. Unbelievable.... I've never had a report like that as the cancer has always progressed, year by year. He also can't believe I haven't had any bones break. I drive him crazy telling him about the things I do in my zoo keeper job. He thinks I should quit doing it. I've told him when **** freezes over and that's that.
- Of course I realize that this may be temporary but the trick to successfully living with cancer and not letting it take over is to not let it take over. I choose not to spend my time worrying about when things will change for the worse again but instead use the time productively to enjoy every single thing about living. That's not me preaching to anyone but instead, just my way of dealing with it.
- I'm no cheerleader, believe me, but I do think that we all need to hear encouraging stories. I remember my darkest days and how grim everything looked. I remember how much I needed to hear that someone else had survived what I was living through.
- Sorry this is so long but I wanted to pass along my thoughts and share my story with all of you who are trying to survive another day. I know how you feel.....it's so hard and such a struggle. I hope it helps to hear from someone who has lived with mets for 9 years and managed to have a good quality of life.
- Sending prayers (for those of you who will accept them), positive thoughts, gentle hugs and special admiration for all my cancer sisters. You are such brave, inspirational people.....never forget it.
- Love and Happy Holidays, Cindi