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

a month 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?

4 comments
Comment
CA

Community Member

a month 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.

NB

Community Member

20 days ago

That is what I'm fighting now. They are not listening.

SL

Community Member

3 days ago

Unfortunately most oncologists are focused on cancer and any other issues you may need to investigate with your GP or other specialists. I just felt that to have any chance on keeping my cancer in check. I needed to make sure my immune system was in good condition. My husband came upon an article that Dr Tran wrote from Portland Province Hospital in Portland Oregon. He was big on making sure your immune system was strong. That’s when we started to investigate on immunoglobulins and my T-cells. That is how we meant an immunologist and testing my immunoglobulins and T-cells were so very low. Then did genetic testing and sure enough I have CVID /PID. Sad part my oncologist kept saying my symptoms was from the Letrozole. Some Oncologist just stay inside there box. So don’t ever give up. I tell everyone I meet -really focus on your immune system not just the cancer. 💕

SL

Community Member

3 days ago

I feel the big question is what iwas wrong with your immune system for cancer cells to take hold and grow into a tumor. Especially if your cancer is not genetic. Obviously after your done with treatment. Doctors don’t address that key issue. Anyone who has had cancer should always do a deep dive into their immune system. It just seems like common sense.

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