The doctors say the lung mets was too small to be symptomatic, but I was losing weight, feeling exhausted, feeling slightly nauseous (nothing like chemo, but noticeable) and simply feeling lousy -- VERY different from my norm. I was repeatedly denied testing. Five months later my oncologist finally agreed to a CT scan. I was told it was normal. 2.5 months later my primary care physician saw me and said I didn't look well. He ordered a second CT. Turns out the original scan had shown a lesion that was misdiagnosed as a benign granuloma ... something I was not told about at the time. The second scan showed that the "benign granuloma" had more than doubled in size. It was biopsied and was a lung met. I changed oncologists and had the lobe surgically removed. Difficult surgery, but worth it. I'm very happy with my new oncologist, whom I've had for 5 1/2 years.

METAvivor is a 501(c)(3) non-profit organization established in January 2009 to fill a critical gap that was unfilled by anyone else. Finding no place where we could donate funds specifically for metastatic breast cancer (MBC) research, we began a program to raise funds and award our own MBC research grants. Having established our own local MBC support program when no support for MBC existed in our state, we began offering advice to others as to how they could establish their own local support programs. And to accomplish these missions, we became very intent on raising awareness and advocating for increased MBC research and increased MBC support.

In 2011 METAvivor began its 30% for 30% campaign. It advocates that 30% of breast cancer research funds and 30% of breast cancer support activities be devoted to MBC for the simple reason that 30% of breast cancer patients metastasize.

METAvivor grew out of a local MBC support program established in 2007 by METAvivor co-founder, CJ (Dian) Corneliussen-James. METAvivor is 100% volunteer-run, mostly by patients with MBC.

METAvivor puts 100% of all donations into its annual MBC research grants. 100% of all grants awarded go directly to MBC research. 100% of all proceeds from fundraisers after expenses go into our MBC research grants (excepting proceeds from silent auctions and store sales which help us with basics such as supplies).

We are VERY appreciative of offers to help. We can always use assistance. Go to our website (www.metavivor.org) for ideas. Look under "volunteer opportunities". You will find a wide variety of areas where we can use assistance. If you find nothing there that works for you, then email kelly@metavivor.org and she'll work with you to find an area suited to your talents. Thanks for asking !

CATCH YOUR BREATH: Expect to be both shocked and devastated. Catch your breath. Go outside in the fresh air and breathe deeply. I know that this feels like your worst nightmare. It feels like life is over. IT IS NOT. True, you do not know how much time you have, but you DO know that you have more than today ... more than this week ... more than this month. Take one step at a time.

THIS WAS NOT YOUR FAULT: It did not happen because of something you did or did not do. It just happened ... just like it does to 10s of 1,000s of Americans every year.

MEDICAL TEAM: Give careful thought to your medical team. You need people you can trust, who listen to you and are willing to work with you AND who specialize specifically in breast cancer AND who, preferably, are located at a teaching university hospital. While you must be able to be comfortable with, and like, your oncologist, you must also realize that you now have a very serious condition. You need the best care possible and if you are within commuting distance of a university hospital, go there. If not, review the most recent listing of the best cancer hospitals in the USA (check out NIH recommendations at: http://www.cancer.gov/researchandfunding/extramural/cancercenters). Find the one closest to you and be seen there if possible. If that isn't possible, check with your local American Cancer Society for their recommendation, but also consider traveling to one of the NIH-recommended facilities for a second opinion every time you have a change in your cancer.

FIND FRIENDS WHO UNDERSTAND: Finding other people with MBC to talk to is informative, comforting and offers a sense of security. Check out the "support" section at www.metavivor.org. There is also a list of local MBC support programs under "support" at www.mbcn.org. You can also join online discussion boards and chat lines. On Facebook search on "meta" and select "The New Closed Metastatic (Advanced) Breast Cancer Support Group". Also try bcmets.org orhttp://www.inspire.com/groups/advanced-breast-cancer/. Cancercare.org also has a telephone support program. Find what works for you.

MOVE FORWARD: We cannot turn back the clock ... so we must adjust and move forward. Your life will be different, but you can still find enjoyment and happiness. Set up your medical team. Decide on treatment. Start treatment. Look for support. Soon you will get into a new routine ... be making new friends ... and things will begin to fall into place. It DOES get better. Believe that.

Faslodex has been very good to me. I have taken my shot month for 5.5 years with no side effects. Qualifier ... about a year ago, I received a sharp pain in my mouth on two separate occasions within seconds of the start of the injection. We never learned why. It has not happened since.

I receive a single dose. This was the standard protocol when I was diagnosed. The standard went to a double dose a few years later, but since I had had "no evidence of disease" the entire time, we saw no reason to increase it. We are holding that in reserve for when I recur the next time.