Ten year ago in June I had a very large non cancerous cyst removed from my abdomen along with a total hysterectomy. In May what I thought had been scar tissue was in fact another very large cyst. Due to the size my doctor had a drain placed (approximately 4.5 liters of fluid drained). Two weeks later he wanted a specialized x rays done which showed the drain had become clogged and the cyst had grew again to about 35 liters (in two weeks). A week later he did surgery to remove the cyst. Prior to this I had spoken with three general surgeons and a GYN Surgeon who all said I had no cancer markers (I was positive). I felt amazing after surgery and saw my doctor two weeks later for post op. He told me the cyst was filled with cancerous fluid however they could not determine what kind of cancer it was so he has sent out for genetic testing. I saw an oncologist three weeks later. He advised that the genetic testing was not definitive and in fact caused more questions. I had blood work done to look for cancer markers and was scheduled for a PET scan (too soon after surgery but was told it could not wait). I saw my oncologist a second time and was told the blood work was inconclusive as to what kind of cancer I have and the Pet Scan showed 2 small spots on my intestines. He believes it is Peritoneal Cancer. I see an GYN Oncologist Surgeon on Wednesday to see whether I need surgery before chemo. If I don't need surgery I will start chemo immediately.
No Markers for Cancer ... to You have Cancer but we don't know what kind ... and we need to treat it aggressive......... I want to be strong but...
Hey Kilroy, sorry to hear about the confusion with your diagnosis, it must be really stressful. I’ve had similar conversations in that I had no markers, no symptoms, cysts were benign, it was only after a Lletz procedure where they checked my uterus they found the cancer. Even now, I’m a prelim diagnosis of stage 2 endometrial cancer but not formally staged. My CT scan shows a lesion on my spine and lymph node in pelvis affected, and formal staging won’t come until 2 weeks after surgery. It’s confusing, stressful, frustrating, but mostly scary. The only advice I have is to call your specialist and say ‘ I’m scared, I need some clarity so I can make plans and mentally prepare’. I get the feeling these specialists do this stuff all the time and sometimes forget that we mere humans don’t have the background medical knowledge to know what warrants concern or not, and so we understandly get worried. We’re all here if you need to chat, it’s a beautifully supportive community xx wishing you clarity and strength on your journey, Claire
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