Living with Endometrial Cancer

As I read these stories I want to scream and cry at the same time! I am a Registered Nurse with tons of education and experience….but was never educated on young women getting this cancer! I had been through a very tough year prior to being diagnosed. I had some legal issues which after 9 months I won but was very run down. During that time I had an unusual discharge that was clear and goopy during the middle of my cycle similar to what you have when you ovulate but in large amounts. My hair was more oily and I broke out with acne but I put if off as stress related. My periods were always regular but on the light side. I have one child that I gave birth to at age 32.

I started to have periods that were a little heavier for a couple of months and I finally made an appointment when I started bleeding and it was seemed particular heavy. I went to the GYN and told him my concern. I was brushed off and put on birth control pills. But he did do a blood draw which was within normal limits. He also stated I could get an ultrasound and could set it up when I wanted. This was on a Monday. That night I kept going to the bathroom with tennis ball size clots about every 15-20 minutes. I was exhausted and frustrated and scared. I had a 5 year old and was running a business from my home. I called the doctors office and the nurse told me the GYN stated to double the BC pills. So now I was nauseated and continued to bleed. By that afternoon I called again and the nurse was rude and stated the doctor was very busy and he had deliveries to go to but I could go to the ER if I wanted to. Being an RN with ER experience I knew that most ER doc would put me off and that I needed to see a GYN.

The next morning I made an appointment for an ultrasound and drove myself. I was weak and very pale. I had to ask when the results would be done and they stated about 2pm. I had to ask them when the GYN would get them. They stated I could call and tell them. The nurse treated me rudely for even calling. At 2:10 that afternoon I received a call from the GYN asking if I could be at the hospital for surgery at 4pm. When I got to the hospital and had my blood drawn I had lost a third of my blood volume in two days!

After the D&C the GYN stated that I had a fibroid with a polyp on it and everything looked benign.

The next Monday i was asked to come into his office and was told I had Grade 2 Endometrial adenocarcinoma. I had none of historical factors that would make me a candidate for this Cancer. My GYN didn’t even know anything about young women getting this cancer. I was sent home alone (I’m a single mom with no father involved) with no information. I did get to go to the hospital to get 2 units of RBC transfused because I had lost so much blood.

I went home and searched the internet for anything I could find on this cancer. I found very little but did find out you could try to reverse it with Megace and save your fertility. I deeply wanted another child. I felt as though my heart had been ripped from my body when the GYN said the treatment was a hysterectomy I made an appointment with an GYN Oncologist and demanded a second opinion on my pathology. She stated it would be one chance in a million. The results were the one chance in a million. The GYN oncologist pathologist stated the pathology was hyperplasia questionable adenocarcinoma grade one. I had a D&C with a hysteroscopy. The results were completely negative. I was started on Megace 160mg a day.

Megace is a horrible drug but I was determined. I lost hair, had night sweats, insomnia, irritable, moody, weak, and ravenous. I would sleepwalk and eat. I had an enormous amount of pain throughout my body. After 2 months I had another d&c and I was clear of cancer. But this oncologist wanted me to continue Megace for 4 more months which I did. I gained 50 pounds just as she had predicted. I found an endocrinologist that would get me pregnant…artificial insemination. I was ovulating and had picked out a donor. Then my mother convinced me to wait………….and see if I would find a husband. I was torn so I waited and started to date. Very hard to date when you have cancer.

I started to lose weight and then started having gallbladder like attacks. My liver enzymes went into the 200’s…..no one involved in my care knew that this is a side effect of Megace! I had an over zealous family doc who told me that I was going to die. I was being bullied in every direction to have a hysterectomy Plus the onocologist I was going to only did OPEN hysterectomies. None Laproscopic. Finally they ordered a CT scan and decided I had cancer again. I changed Oncologist to the very best 300miles away. He again allowed me to go on Megace and I had multiple hysteroscopies but I was very sick and my family and friends were not supportive..only a few were. I felt forced and terribly sick after 6months and scheduled a hysterectomy I had a LAVH with BSO and lymph node sampling. It was confined to my uterus lining at a grade one. I had shut down my business and was so sick. I could barely function going into surgical menopause They allowed me to have Viville dot 0.0375mg patches.

After 9 months I had a NP double my Estrogen and I started feeling better. My genitals were like tissue paper and had atrophied. I have no sex drive. I am back to work fulltime but I have constant pain in my groins and body aches.

The only positive thing I want to say to the young women who want children is it can be done. They do it in Europe. Make your own decsion it’s your body. I will always wonder if I had listened to my heart I could have had my sibling for my child. Do your research…and hopefully you will have some one to be there for you.

I was a very unpopular patient and I am appalled at the medical profession. The way I felt during this time was like the doctor in the movie “The Doctor”. I just hope I I have helped someone out there get some information on alternatives to the cutting and burning that the docs want to immediately do! If it was a man would they want to be castrated! I am now a castrated woman. For those of you that are layman that is the real word for having your ovaries out…female castration.
Good luck to you all.