CommunitiesLiving with Metastatic Breast CancerHas anyone else discovered an autoimmune disorder with their cancer?

Has anyone else discovered an autoimmune disorder with their cancer?

SL

Community Member

8 hours ago

I was a stage 0 at 44 years of age. I didn’t take it as seriously as I should have. At that time the oncologist decided to do nothing. At the appointment I was trying to be really proactive and wanted double mastectomies. But my oncologist said -you seem really healthy all you need to do is have mammograms 1-2 times a year. I walked out of there thinking great. Fast forward 8 years and I had full blown stage 3c metastatic breast cancer. Exact spot where the stage 0 was at- left breast. Now I was looking mastectomies, 5 months chemo, radiation, Zometa and hormone blocker. Another 5 years go by and I have a grapefruit size tumor in my sacrum. 10*pain in my lower back. Placed on ibrance, Zometa and Letrozole. 2 1/2 years go by and finally they find out I have an autoimmune disorder called CVID. My body does not make plasma. Plasma helps to make immunoglobulins which mark cancer cells for your t-cells to fight. Which is genetic. So way back when I had a 0 stage that was really due to my autoimmune disorder. That went undiagnosed when my oncologist thought I would be fine. The question is why did my body make a bad cell and body did not fight it off 18 years ago. I am now NED. Only on Letrozole and Xembify (plasma). But it has been a long 18 years. So really make sure you do not have something secondary going on with your immune system. My question is - is there anyone out there that found they had an underlying condition. Like an autoimmune disorder with there metastatic breast cancer?

1 comment
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CA

Community Member

3 hours ago

Thank you for sharing such an important part of your journey and bringing awareness to the connection between autoimmune conditions and cancer. Your experience highlights how crucial it is for patients to advocate for comprehensive testing when something doesn't seem right, and your question about underlying immune system conditions is really valuable for this community. Many people may not realize that autoimmune disorders can impact how the body responds to cancer, so hopefully others who have discovered similar connections will share their experiences here.

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