Extension tumor vs. Metastatic

Heather213

I was recently diagnosed with stage IV metastatic breast cancer. Because I had a double mastectomy 3 years ago after I was first diagnosed with stage IIa breast cancer, followed by 4 rounds of chemo therapy, clean margins and no sign of cancer in lymph nodes, I believe my chances of the cancer spreading were 2%. At my consultation with the radiation oncologist she wondered if my tumor was an extension of my original tumor rather than metastatic. The tumor is only in my sternum. My original breast cancer was at the 9 o'clock position on my left breast, very close to the sternum. It is a large tumor, indicating it has been there for a while, but I thankfully do not have cancer anywhere else in my body.

From what I've learned so far if I am lucky enough that this is an extension of my original tumor, it is a very rare scenario. Because of that I'm having a really hard time finding doctors who are familiar with this and having a hard time putting together a plan moving forward for my care. Any information anyone has would be so gratefully appreciated. This is such a scary time. I know it is for everyone. Information is helping me, so anything is welcome. Thank you!

Moderators

Hi there, Heather. We're so sorry that you find yourself here, but we hope you find this to be a place of support. You may find additional support in our stage 4 forum, where our knowledgeable members can offer their guidance and advice: https://community.breastcancer.org/forum/8

The Mods

KBeee

Hi Heather,

I am sorry you are dealing with this. I would try MD Anderson, Mayo, or some other very large University based cancer center

buttonsmachine

Hi Heather, I second what Kbeee said. I also had an unusual situation, and it wasn't until I got to a large, NCI designated cancer center that they got it under control.

https://www.cancer.gov/research/nci-role/cancer-centers/find

Call asap, it can take time to get in. You can make second opinion appointments just to get your foot in the door. I did that initially, but ended up transferring my care totally. Best decision ever - I should have gone sooner. Hope that helps and best wishes to you.