I had just recovered from my mastectomies and was pulling myself back together when my husband started having odd symptoms (fainting spells, tremors, etc). We spent two years trying to discover the cause. He was pretty much spending his days sleeping and unable to live his life. Oddly, it was during a routine lung scan for his COPD when we discovered he had a tumor in his lung. During a biopsy to determine if the tumor was cancer or benign, my husband had one of his fainting spells and they diagnosed a heart condition. He has had heart surgery now and his symptoms have resolved greatly. However, they have no idea what type of cancer my husband has. It has been a full year and we've gotten every diagnosis from Stage 1 lung to Stage Four terminal cancer of unknown primary. We are settled now on Stage Four Unknown Primary. The doctors (3 different oncology groups and much testing) and they don't know. They've offered and taken off the table every treatment option (except medical marijuana, which we are using). They won't do radiation to the tumor and lymph node because they don't want to eliminate that possibility down the line (?), they won't do surgery and they are hesitant to do chemo (as are we) because they could use multiple drugs, most of which could be wrong and not have any positive effect. So we wait and do PET scans every 3 months. The only positive we've had in the past 12 months is that the tumor and lymph node activity goes down each 3 months and we can only attribute that to two possibilities....either the marijuana is holding it off or reducing the cancer or it might have been a cancer that would either recede on it's own or is just waiting to explode at some point. It's been the most frustrating experience of our lives. We've been told he has a cancer that is at the worst possible stage but there is no treatment, just waiting to see when and how bad it will become. We can't plan, we can't fight, we just have to wait........the doctors are truly baffled. We had one doctor walk out on us and have had to find new doctors and fight an oncology system that is not prepared to treat cancer when they can't identify it and follow a protocol. From the Mayo Support site I have found several cancer survivors and caregivers where there are misdiagnosis and similar paths in some ways but a cancer where the primary site of origin isn't detected is fairly rare, so on we trudge.
It's hard to have cancer but if you know what your options may be and can make decisions on a path and your future, at least you have a 'path'.....we don't even have that so we live day to day, not knowing what will happen and it's emotionally exhausting. We were told my husband had months to live, maybe but we are celebrating another holiday season together and hoping we can find and identify the cancer source or perhaps it will continue to recede (wouldn't that be nice) and move on cautiously with our lives.