Apr 27, 2009 - 10:02 pm
Hello everyone. I have had a very hard time finding someone who understands what I am going through...maybe I can find someone here (I have tried cervical cancer forums and only got answers to the cervical portion).
I'm 32 years old. I originally went in to doc presenting with pelvic pain that worsened with menstruation, sciatic pain down to ankles, extremely heavy bleeding, and fatigue. The heavy bleeding has been going on for 3 years (what I thought was a result from tubes being tied), the pain for over a year. I had an endometrial biopsy done, ultrasounds, bloodwork, pap-all came back clear, no hpv-no cancer. I told doc I wanted to rule out endometriosis, so he decided to do 4 procedures (laparascopy, hysterescopy, D & C, and thermal ablation)to treat and rule out endo. Doc said I "had a lot going on in there" after the surgery, that I had numerous adhesions & there was no endo, and that he wanted to see me in a week. He went on vacation after that. The fill in gave me my pathology results. The D & C curettings showed squamous epithelium of the cervix & endometrium, both with severe dysplasia, with endocervical gland involvement. They told me I had pre-cancer and needed a cone biopsy done to see if it had invaded the deeper tissue. I went home and cried. Fast forward a week, and I still dont have the cone booked. I call them, and the nurse practicioner takes out the pathology report. I ask her if the gland involvement means its in the mucous producing glands, or in the deeper tissue, she says both. I ask her how they will test to see if its in the myometrium like they are deeper in the cervix. She then says she thinks I should skip the cone, and go straight for hysterectomy, and is going to in fact PUSH for it.
I still dont know what "a lot going on in there means" because my doc is now out on family emergency leave for another 2 weeks. I have been researching and did not know that some of the advanced staged disease symptoms were some I have been displaying: hair falling out, 15 lbs lost in a month and a half without trying, shortness of breath upon energy exertion(which I thought was anemia, but I'm not anemic per bloodwork), all coupled with the pain & heavy bleeding has me already accepting the fact that I'm going to hear "You have cancer". The doc doesnt even know about the other symptoms because I didnt know they were related. That and the fact it is ALL over my uterus has me convinced the outcome is not going to be good. That and I waited so long to address the issues.
I dont know if it started in my uterus, or if it started in my cervix (no hpv). I read that you are supposed to have columnar glandular cells on your endometrium, and I have squamous epithelium in there. That seems like a complete cell change to me if I'm understanding it correctly. I cant find anything on the net about dysplasia of the endometrium(I have a copy of the pathology report).Does anyone know anything about this? What I also want to know is has anyone heard something similar before being told they have uterine cancer? I dont doubt for one second they are going to tell me its bad, so please be frank with me. No one will give me an answer to this and the silence when I ask is deafening. I feel so alone. This is my 3rd attempt in uterine forums, with not a single reply. I need to know how hard to push these doctors in treating me. I also am curious what kind of cancer it could be with these findings.
In closing, I have an appt. on May 8th with my gyn and another one on the 14th with a gyn/onc (by my choice). I could really use some insight from people with a story like mine. I am a single mother of 3 children, 10, 7, & a 4 year old with autism, and no help but from my mother. Any replies will be appreciated with a magnitude that cannot be put into words. Thank you.