Friday, January 23, 2009

this is the story of one SURVIVOR

choriocarcinoma presented differently in K so we wanted to assure that as many people as possible see her suggestions in her story... I had bloating in the abdomen, terribly painful and heavyperiods, and swelling in my legs and feet. I had an ultrasoundwhich showed an ovarian cyst AND a fibroid tumor, hence the reason for my bloating and enlarged uterus. My gynecologist told me that women go to their graves with fibroids and it was nothing to worry about. WELL, I decided to have a hysterectomy since I wasn't planning on having any more children (my last one was 10 years old). I did all of the preliminary blood tests prior to surgery, and guess what? My pregnancy test was positive, even though I had my tubes tied. I knew I wasn't pregnant, so my doctor informed me that I had some form of Cancer, and that I needed a CT scan of my chest. It came back positive for spots in my lungs. In the meantime, I go have my hysterectomy. A PET scan followed which determined that I had a lesion on one of my lungs. I was sent to a well-knownhospital near where I live in the mid-west, and was told I had some kind of Cancer in my lung. They suspected Choriocarcinoma, but wanted to do a biopsy to be sure it wasn't lung cancer. Some lung cancers also give off a high HCG level, believe it or not. My HCG level was not that high, even though it was rising. The highest it got was around 298. It dropped a bit after the hysterectomy, AND the pathologist SAID he did not find any Cancer cells in my uterus or tubes, NOR did they find a fibroid tumor!!!!! Then what the heck was it??? OK, so if I am going to have a biopsy, I WILL CHOOSE WHODOES IT. I chose a different hospital, and to make a long storyshort, the surgeon took the tumor out, along with healthy tissuearound it so it wouldn't bleed, and that was that. My HCG level dropped to normal 2 days later! It wasn't fun, but neither is Chemo, and I feel very blessed to have the end result that I had-NO CHEMO. My HCG level has been below normal for 2 years now. If the first Cancer doctor had had her way, she would have given me chemo after the surgery anyway. I needed a break as I had just had 2 major surgeries in 2 months time, and my HCG level was going back to normal. I consulted with a retired specialist from the New Englandarea who said that since my HCG level was normal, what would thechemo be treating? I almost went to see John Lurain (sp?) fromNorthwestern University Hospital in Chicago. He is supposed to be very knowledgeable. If the Choriocarcinoma ever comes back,that is where I plan to get a consultation, especially since NO ONEKNOWS WHERE IT CAME FROM before going into my lung. My hopes and prayers for anyone who has to deal with thisso-called rare cancer is please get 2nd and 3rd opinions if you can.The only reason I didn't do what my first doctor said is because Ibecame my own advocate and did research online over and over until I got smart about what I was facing. That doctor said she did not have the time to go over any of the information I was printing out, so I found another doctor. Knowledge is power, and when you don't have a lot of options in your city, and all of the doctors are saying different things about what to do with you, you have got to step back and figure it out. With God's help, I was led in the rightdirection. Our doctors need to take a more active role in diagnosing this so-called rare cancer, instead of passing it off as a normal gynecological problem, and then letting the Cancer spread. How many more lives will be lost? Lance Armstrong had Choriocarcinoma cells in his tumor, and it spread to his brain as well. How many aneurysms are caused by this nasty cancer, and get written off as a stroke? Catching it early is the key if we cannot find out how it is developed. To catch it early, more doctors need to get training on this cancer, NOT just the oncologists! If you can, please press the issue locally with your physician network. We need to find a way to get something done! Healing blessings to all who have been touched by this disease! Sincerely, “Music in my soul”