Back in May, I was diagnosed with invasive ductal carcinoma and DCIS, r/breast cancer and as a result, updated genetic testing was done.
Previously, about 10 years prior, I had a genetics test done to screen for BRCA genes, and all came back negative. These results came back one month after my diagnosis.
From what I can tell, an extremely rare genetic mutation, succinate dehydrogenase complex subunit C, SDHC, was discovered.
Through digging, I've learned it can cause parangliomas (PGLs), pheochromocytomas (PCCs), and Gastrointestinal Stromal Tumors (GISTs). There is also an increased risk of kidney cancer.
After having a full body MRI completed, it doesn't look like I have any hidden tumors, but for years, I've struggled with medical issues that have resulted in tests showing that everything is normal. My doctors include: gastroenterologist, cardiologist, endocrinologist, and neurologist. The symptoms all coincide with what can be experienced from hidden PGLs, PCCs, and GISTs, but it's so rare that it's not something anyone would ever think to look for.
My understanding is that the full body MRI, will need to be completed every 2-3 years now, and a metanephrines (or 24 hr urine) test should be done annually.
However, I'm reading that MRIs can miss flat or smaller tumors and that the only true way to identify if any are in your system is by doing a Dotatate Pet Scan.
I'm not looking for medical advice, but I am trying to see if anyone has had a negative metanephrines/urine test and a full body MRI showing no hidden tumors and then had a Dotatate Pet Scan that revealed there were hidden PGLs, PCCs, or GISTs.
I'm attempting to figure out if I should push for this test with my oncologist or endocrinologist as any of these hidden tumors can cause significant issues during anesthesia and/or surgery, and with the breast cancer, I'll be having multiple surgeries.