Hi @janar
Sorry for all you’re going through and at such a young age. Everyone in my birth family has had significant conditions misdiagnosed. My brother had to go to 4 different doctors over a year for a correct diagnosis and the 4th doctor saw something on the very first xray he had a year earlier that 3 doctors missed. It was mets from lung cancer, not a back injury they were treating with PT. He never had lung symptoms, never smoked and was 45.

I agree with others not only on getting a second opinion with a cancer specialist but since you have something rare you need to go somewhere like Mayo or the nearest teaching hospital because they see all the unusual stuff, have multidisciplinary teams and will take the necessary time to review your case. Take action and be your own advocate. No one has more time to spend on your case than you do. Reputable doctors will not be offended by or discourage second opinions.

Most importantly, do not give up hope. They are coming up with new treatments all the time. Sometimes surgery alone resolves cancer. I know several people that had cancer long ago, even decades, and have never had another issue. Maybe this is even something benign. Your nodule is fairly slow growing which is good. I have 50+ carcinoid tumors 1 cm+ scattered across both lungs first seen 16 years ago. They destroyed one 2.6 cm tumor with microwave ablation. Obviously we can’t remove 50. In 2008, they thought it was either mets or residual from some unknown viral infection I never had. It was neither. It’s neuroendocrine cancer and another rare lung condition with only 300 documented cases. Monthly injections have significantly improved my respiratory symptoms so it’s better than it was for 30 years prior. The med also slows tumor growth on my already slow growing tumors. I’ve also had recurrent breast cancer for 4 years and still take meds for that. I first had it 11 years ago. Side effects from treatment can be challenging, but I’m still here enjoying life.

I’m telling you all this to give you realistic hope. Maybe none of us has your rare condition but tons of us have other rare cancers and conditions and that’s just our new normal as we continue to live our lives making room for medical stuff. You are not alone. We’ve all been scared by the unknown at times.

Exciting that you are getting married! Please keep us posted. Blessings to you. Zebra