OMG! Worst day of my life!
I met with Dr. Cass at Cedars Cancer Center recommended by Fred Kass. Amazing doctor. After waiting 2 weeks for my pathology slides to come back from the mayo clinic she says, “Yes, you have CANCER!“
This is a cancer of Mullerian Origin and is very rare. There is no staging to this cancer. Basically, cancer of the girl parts she said. The trouble is it's a secondary carcinoma. They don't know the origin of where the cancer came from. It could be from the cancer I had as a young kid at the age of 4 called Rhabdomyosarcoma or a new cancer. She said with this cancer we have to GO BIG or go home. Basically, after 2 hours in her office going through scans, reports and exams she said the only way to get rid of this animal is to basically mutilate me. All my parts are coming out. First, they will remove my bladder, then the rectum, colon, ovaries, fallopian tubes and vagina (yes the entire vagina).
Then they create a new bladder by using part of my appendix and colon. If I’m lucky they will make an incontinent bag where I have to use a straw to drain my urine. I have to empty it every hour or so. Or more unappealing I would have a urine bag, which she said she would try very hard not to do. Dr. Cass said she won’t know until she goes in.
The Colon, Plastic and Urologist Surgeons will all be performing surgery at the same time to do repairs. Once I’m opened up they will pull my abdominal muscles through the space where my uterus and bladder and etc. were to try to create a vagina. This is if there is enough time, no bleeding and I'm stable. The vagina comes last she said. Priorities are peeing and pooping she said. She is estimating this surgery to take 15 hours.
Then I would start chemo. Radiation most likely won't be good for me since I already had lots of radiation when I was a child, this has made the tissue thin. Radiation is like a nuclear bomb. It destroys your body.
I will probably be in the hospital for 10 days. Then I will need a second surgery to redo the colostomy bag. That is 8 weeks after the first surgery.
There is a one time shot at this. The Doctor said, you only get one chance at this surgery.
This is major. I guess I'm not in denial anymore.
I have cancer.
OMG I can't believe this!
It's worst than I thought.
I am in the process of getting two more opinions from Stanford and USC. I need the best of the best.
I have had many people ask me how I found out I had cancer and where the cancer is. This is how it all began….
About 6 months ago I decided to make a doctors appointment with a gastroenterologist specialist. I had been having symptoms of bloating, constipation and sometimes blood in my stool. I went to the doctor 2 years before with the same symptoms but they said I was fine. Just take some more fiber or miralax on a daily basis. Miralax is a stool softener. I was about to cancel the doctors appointment because my life had turned upside down. I was now going through a divorce and was under a lot of stress. I just forgot about my symptoms. I began to lose about 10 pounds which I just assumed was from the stress. Ten pounds on me is a lot. I am weighing 108 now. On October 20th I went to see Dr. Petrini to ask for a blood test to see if maybe I was gluten intolerant. It’s a big topic right now so I thought maybe I get so bloated and painfully bloated because my body can’t tolerate gluten.
We talked about my history and my age. I told him I had a cancer called Rhabdomyosarcoma at the age of 4 years old. He said. “ Wow”. Thats a rare cancer and not too many kids live from that. I have heard that all my life from doctors. I had an orange sized tumor in my pelvic area, in the muscle and connective tissue at the age of 4. Dr. Petrini took the extra time to examine me. Felt my belly and pelvic area and then said “ I think you need a colonoscopy”. I was a little surprised only being 38 but trusted him. He said I’m sure it will be fine but I would just feel better if you had this test.
The night before my colonoscopy: November 6th
The night of the prep for the colonoscopy you know is not going to be fun. I drank that nasty stuff and waited and waited until I would start running to the bathroom. Everybody kept saying, OMG be close to the toilet because it just comes out of you like water. After my stomach began to look like it had a watermelon in it, I really started to worry. I asked myself, why haven’t I gone to the bathroom yet? It’s now 4 am and I still haven’t gone yet. My test is in 2 hours and the directions say stool must look like clear water. I started to worry more. I called the office first thing in the morning and the nurses told me to come in right away. They needed to give me more prep. When they told me that, I held back the tears because I was already so bloated and about to vomit.
The nurse brought me back to a special room that had a small toilet and a small table that you can sit on. She asked me which flavor drink I wanted and I chose lime. It was a gallon of more of this nasty crap. I took one swallow and burt into tears. I felt so alone and so isolated in this room. I felt like I was in a prison cell by myself. Everyone kept saying it’s not that bad. What everyone doesn’t know is that I started having flash backs to my childhood when I would have to drink barium and all kinds of nasty flavored drinks before radiation, chemotherapy and scans. I turned into “little Emilee”. The very scared and lonely Emilee. I always try to put on a face that I’m ok, but I will be honest, I was terrified. I sat in that room for an hour alone and just cried. I tried to drink the stuff but I would vomit in the toilet. Then I would have diarrhea. Now, I’m barfing and going diarrhea at the same time and I feel so humiliated. The nurse told me to go in the hall and walk around a little bit to help the stomach pains. Nothing helped. I looked at her and burst into tears and said I want to go home now. I can’t do this anymore. Another nurse came over and saw me crying and pulled me aside. First of all, I was the youngest person in there and they all kept saying your too young to be having a colonoscopy. That did not help my anxiety. This lovely nurse said, there are other ways to get around this. It is more difficult but we can suction (any extra stool) as the doctor goes in with the camera. Dr Petrini comes in and was a lovely doctor. I could actually watch the screen as he was going into my intestines. He found 3 polyps but nothing that seemed to concern him. It was after when he gave me a rectal exam that he said he felt a mass up in my rectum. My heart stopped. You tell somebody that had a large mass in the same area as a 4 year old and my thought was instantly, holy shit I have a tumor. I knew. I just knew. The doctor said I’m sure its nothing but you need to get a CAT scan.
November 11th: visit with the PA OB/GYN department for a routine gynecological examination
Follow up- come back in a year
The nurse did not seem too concerned but said she felt a mass in my vagina but it was probably just scar tissue. (I however, thought differently).
CAT Scan: November 12th
On November 12th I had a CAT scan of my abdomen pelvis with contrast. The finding was 2 cysts. Dr said not to worry. (but the truth, I was very worried)
I saw the Urology department thinking maybe they could give me answers.
The doctor was very nice. She gave me a bladder scan and also did a physical exam with her finger. She said, I feel the mass. I would get another opinion and listen to your gut feeling.
I called my good friend who is a radiologist and told him the situation. He is always very calm and said, Emilee, let me call my friend Dr. Raphael who is the best at gynecological problems. He will be the guy for you. He was very hard to get into. About 2 months. I just knew in my heart that I couldn’t wait 2 months. My mind was going crazy and I wanted to find out what this mass was everyone kept feeling.
I got into see Dr. Raphael quickly through the help of my friend.
Jan 9th: Appointment with Dr. Raphael OB/GYN
Today I was excited to see Dr. Raphael. How excited can you be to go the the OB/GYN. At this point, I had complete trust in this man because my friend said he will tell you the truth. Just meaning, if he thinks there is something, he will know. I started off the appointment very nervous. When I get nervous I start to laugh and pretend like I’m not scared. I was trembling inside my body. I put my legs up in the stir ups and he said I’m really sorry to do this. He had to do a rectal exam and vaginal exam at the same time. He said, “ I feel it”. This is not normal. I’m not sure what this is but it’s not normal. He then got out the vaginal ultrasound probe and inserted into me. I saw for my own eyes on ultrasound these 2 things. Masses, cysts, whatever you wanted to call them, they were there. The doctor said its in a weird place. They are trapped between your posterior vaginal wall and your rectum. I’m not sure if I should send you to the colorectal oncologist or the OB/GYN oncologist. I only heard the word ONCOLOGIST! My heart sank. I was all alone and wanted to cry. I held myself together and walked out of his office. I immediately called my friend the radiologist. I told him who I was referred to see. Dr. Hogan. A oncologist who specializes in cancer in the vaginal area.
Today the MRI report says I’m being seen for RHABDOMYOSARCOMA of pelvis. (this is the cancer I had as a child and I think they want to rule out any sarcoma)
Before I went to see Dr. Hogan I needed to get an MRI. Today one of my Pilates clients drove me to my appointment. I was getting an MRI GYN Pelvis with and without contrast. The appointment lasted about an hour. When you have MRI with contrast they insert an IV in and give you medicine that makes you feel like you are wetting your pants. It doesn’t last long though. I sat in the MRI machine, feeling scared and claustrophobic. I lied there doing my yoga breathing trying to calm myself.
I left the MRI and went for lunch with my friends. My 2 clients were so sweet. They were so worried about me and didn’t want me to be alone. I waited all day to find out the results. It was a long day!
About 3:30pm one of the oncologist calls and says can you come meet me at my office. I called in two friends to go with me.
The Dr. sits me down and shows me the screen. I see it for my own eyes. Two round bright lit up things that look like masses. Well the good news he says is that this one isn’t all the way lit up so it’s probably just cystic fluid. The other one we are more worried about. We need to get you in for surgery asap for a biopsy.
I walked out, tried to absorb the information and I can’t even remember if I cried I was so numb. My friends seemed more worried than I did. I just kinda shut off and wanted to pretend that none of this was happening.
Meet with Oncologist-
When I met wit the oncologist, he also did a physical exam and we went over my CAT scan and MRI. All I remember him saying was that it feels like a carcinoma. I said WHAT? he didn’t say too much. He just said cancer has a certain feel to it but it was hard to tell with my history. I have had multiple operations and the tissue feels different than most woman he said. He said, we need to get you on the operating table and have a biopsy in the hospital under sedation.
Feb 6th: The Biopsy
Friday the 6th I went into surgery. I had a dear client/ friend of mine take me to surgery. I really hate asking people for help. I have no family here, and my clients have become my family for me. I am so grateful for all of them.
We arrive at Cottage hospital at 10:30 am. I was starving from not eating all night and morning. When we got to the surgery waiting room the nurse came right out and said” come back Emilee”. My friend had to wait outside for awhile while they had me all prepped and then she could come back and be with me until I went into surgery. Before my friend came back the nurse was asking me questions. She said you are too young for all the procedures the doctor is about to do. I said, I thought I was just having a biopsy. She looked at her notes again and said they are doing more than that. They will be going in with cameras up your rectum, vagina, doing an exploratory examination and taking biopsy. Thank God I would be under anesthesia for this. After the surgery he told us that it looked ok. Not to be worried. Looks like scar tissue we think.
Waiting for biopsy results:
I spent the next 2 and half weeks nervous to find out my results. You can’t help but think about if the doctor is going to call you today with the news. When the doctor did call I wasn’t that nervous anymore. When he started to tell me that I’m so sorry this has been a roller coaster for you. First we thought it was nothing and then we did and on and on. I have been through 4-5 months of doctor tests to hear I’m SORRY Emilee, it’s CANCER. I just didn’t believe it. There was no way. I had cancer at 4 years old and there is no way I should have this again. He said your results are rare and they can’t come up with a name or stage. The staining of the slide doesn’t fit into any category. They said we had to sent your results to the Mayo clinic for determination.
I now have waited 2 and half to 3 weeks only knowing I have a secondary carcinoma. A cancer that they think might be related to all the radiation I had as a kid. When I was at Cedars Cancer Center last week the doctor just said, you have a VERY RARE cancer called carcinoma of the Mullerian Origin.
Basically cancer of all your girly parts. There are 3 tumors that were found in the Pet Scan, one is lesser in size, not as bright with contrast. My lungs show multiple cysts which may be related to my previous radiation. The cysts caused my lungs to collapse eleven years ago. The pathology report ten years ago said that my lungs looked stringy and diseased but no cancer.
The tumors are not in my colon and not in my vagina. That is why colonoscopy didn’t find it and pap smear didn’t find it. It was all found by internal touch. The doctor said it looks like it has been here for awhile. This cancer we can’t stage. People keep asking me what is the name and stage. She said, just tell them it’s cancer of your girly parts and there is no stage. Anything that is near the tumors or cancer comes out. All those parts down there are very closely touching. That is why she said they all come out. That’s my best explanation of how this all started!
- Carine Moffett
- Lyndal Woodham
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