A shocker was DCIS then went to the bloodstream stage 4

[Sandra in GA]

Margie,
Your story is a very scary one. Your response saved your life. I am sure. Thank goodness you had the kidney stone and they did that cat scan.

I found my lump 10 and 1/2 months after my last mamo. When they did the breast MRI at Mayo, they found another suspicious mass (turned out to be a 5 cm DCIS) under the 3 cm tumor. Later when I was trying to learn more about HER2 I found some research that stated that although DCIS is not invasive, sometimes a HER2 tumor will form on top of it. I suspect that this is what happened in my case. I have no idea now where I found this info. When I found my lump and was trying to get another mamo set up locally, my drs office told me at first "It is had not been a year so your insurance will not pay for another mamo." They followed this by adding, "Oh, you had a 'thickening,' we can order a diagnostic." Later that day, I made a call to Mayo and I consider that a life saving call. All of my treatments have been done there including the initial sonograms and biopysies. Even though it is a three hour drive from where I live in south GA, I would do it again in a nonosecond.

Of course, my story differs from yours there. I had 21/21 positive lymph nodes and so far no spread to other organs. I have been treated very aggressively and am very happy with that. I have been in a study at Mayo in Jacksonville, FL where I have received Tykerb along with the Herceptin and all the reg chemo including radiation. I will have my last Herceptin Nov. 11th and then take one more week of Tykerb and finish everything Nov. 18th!! My onc is very happy with my progress. He told me recently "You've come a long way!"

For me, being informed and proactive is the only way to deal with this very aggressive form of breast cancer. It waits for no one, as you well know!

Sandra