About metastatic breast cancer patients being the forgotten ones, I'm afraid it's worse than that. The woman who started the Metastatic Breast Cancer Network did so because when she tried to join a traditional support group, they told her she wasn't welcome, her "situation" was too frightening to everyone else. As though everyone else's disease is curable, but hers isn't. And that seems to be the overarching response of the breast cancer community to women - and men, with mets. They don't want us around.

Personally, I never jointed a support group, I had a circle of friends who gave me all the support I needed. But if what happened to that woman had happened to me, I would have said, as nicely as possible, "Look, if you think you are EVER cured once you have cancer, you are delusional. The same cancer you have, even if it's stage 1, can come back 9, 15, 25 years down the line. There are no guarantees. And there...is...no...cure."

All my life, my friends have commented on my anger. But anger can serve a purpose, if you channel it properly. Being angry at cancer has served me well. I highly recommend it, especially for those of us who ARE angry, but who've been told that it's counter-productive.

Dear Jane,
I have stage IV breast cancer as well. I was initially diagnosed w/bc in 2003 and in 2007 they found a tumor in my lung. Had it removed and almost a yr later they found a spot in my chest which moved on to my lungs. Needless to say I went to Hopkins and had been taking chemo (Avastin and Taxol) for the last couple of months and the last CT scan they did the spots were gone. Allelujiah!!! I think that was the happiest day of my life besides when my Daughter was born. Anyway, for the most part I'm doing pretty good and living life. I have my down days every now and again but get back on the horse pretty quickly! I just keep reminding myself that there are a lot of treatments out there now for us w/this stage of disease and that seems to help me keep a positive attitude! Plus my daughter is 9 yrs. old and I want to see her grow up!!! So I know how you feel! The good thing is you're right, there are many women living w/this now as a chronic disease and the new treatments seem to be doing a good job. I wish you all the best and love your positive attitude! Keep it up!

God Bless!
Dawn

Hi Jane,
What a fantastic attitude you have!! I feel the same way. I take one treatment at a time and when that one quits working, we'll start another. Most people don't understand what it is to be stage IV. I have so many people ask me when will I be finished with my treatment. They are usually dumb founded to hear that I will always be in some kind of treatment. I am just so thankful every day that I feel as good as I do. And that there are so many treatments out there. I am sure that the cancer has made me more aware of all the important things in life and to let the small stuff go. And I have met so many wonderful people along the way.

Hi Lynn,
I was diagnosed as Stage I, 25 negative nodes, ER positive, had a mastectomy & no other treatment in Feb. 1987 when my youngest daughter was 8 weeks old. One year later I was diagnosed with liver mets...I started chemotherapy (CAF) for 5 months , had 1 month off and then enrolled in a clinical trial involving an autologous bone marrow transplant, 10X standard dose Cytoxin on Days 1&2 and 1 treatment of total body radiation on Day 3 of the protocol...the bone marrow harvest was done prior to Day 1 and I received my marrow back on the evening of Day 3. I was 36 when diagnosed in 1987 and in June I was 59...my baby daughter graduated from college in May...I have 5 grandchildren and still work 20 hrs a week in NICU @ a large university medical center. I have been very blessed...4 years after treatment I had a new lesion on my liver CT scan and went on Tamoxifen for 13 years ...since March 2005, I have been on Arimidex and my recent liver MRI shows only the same lesions, no change in size...that is always cause for giving thanks & celebration.
How old are you Lynn? What treatment are you having & are you @ a large center? If i can answer any other qustions, please let me know.

Peace, June

My first DX was in Feb. 1993. Had modified masc.,and lymph nodes were clear (8). Had 6 mos. chemo with cytoxin then 18 mos. of Tamoxifen. Cancer showed up again in Sept. of 2010. My ovaries are softball-sized and it is in most all lymph nodes. BUT--my bone scan was clear. :)) I have been taking Femara for i month and will do any and all that it takes to keep living. Fear is not an option. Please let me hear from anyone that has had it go to lymph nodes (we have so many of them!), as I haven't found any info on this anywhere yet. Live well,jill