By Lori W.
My name is Lori, and I am currently dealing with a surreal undiagnosed cancer. For five years now, I have tried to figure out the mystery and ruled out everything but cancer. However, scans have not found the cancer although I have severe cachexia. This means that my condition involves great weight and muscle loss. Doctors do not yet know what type of cancer I have, and I pray we get answers soon, as I am terminally ill. I want to share my story because there may be others in similar situations where scans and tests miss finding a condition that is clearly there.
My concern is that there be more research on finding out what cachexia looks like, how it manifests, and how to help patients get the proper support and understanding from doctors. From my experience, many doctors do not know what various types of cachexia look like. which can lead to patients’ bodies wasting before a diagnosis is given.
It is both terrifying and surreal, like nothing anyone can understand, when you are faced with end-of-life uncertainty. You must accept that there are answers that even most doctors don’t have, as it is beyond the realm of the known. Living with a rare cancer that has no known name and manifests in severe cachexia is terrifying. It is scary to see your body that was once beautiful not functioning like it should be.
Being a medical mystery and watching your body deteriorate without explanation while being told it is somatic delusions is more than challenging. Being undiagnosed, knowing I am terminally ill, should never happen to anyone, yet it is happening to me now. I am not sure how long I have to live as my symptoms are constant. Doctors do not know how to find the cancer, let alone treat it. Transcending insurance issues to get PET scans and different types of biopsies is difficult but essential for the undiagnosed.
To have diagnostic access would be everything, as once the cancer is diagnosed, you are immediately looked at as something to be solved instead of a strange person making up strange symptoms. To have a diagnosis, even if it is terminal cancer, is better than no answer at all. It is difficult to talk about morbid things like cancer and terminal illness, yet rare diseases force us to live through and face the uncomfortable.
If you are undiagnosed and searching for answers, do not give up hope. The National Organization for Rare Disorders and our partners are here to help. Learn more.
