Ardeth F. 25+ Year Survivor of Leiomyosarcoma
My name is Ardeth F. and I am 37 years old. My problems with this dreaded disease began back when I was only 12. At the age of 12, I had four “benign” tumors removed from my stomach. The report from the hospital’s pathology department said it was Leiomyoblastoma of the stomach. Because it was so rare, some slides from the operation were sent to Washington, D.C.. (I didn’t see this report until 1980 when I was changing doctors and hospitals.) The report said “Leiomyoblastoma”. It also said “probable Leiomyosarcoma… Please follow-up…” My parents never saw this report. In 1980, at the age of 18, I was rushed to the hospital because I was hemorrhaging. So I had the NG tube and transfusions going immediately. Tests were performed and surgery was scheduled. The results of this surgery were: leiomyosarcoma and leiomyoblastoma all throughout my stomach. There was seeding all in the stomach. The surgeon at the time took out the tumor that had ruptured and closed me back up. I then met an oncologist who talked about various treatments. I was living in Mississippi at the time. (I now live in Texas.) Well my parents had heard about MD Anderson in Houston, TX so they asked if I could be sent there for evaluation. I went there and they ran lots of tests and then gave me a suggested protocol of chemotherapy that I could have in my hometown in Mississippi.
The chemotherapy I had at that time was Adriamycin, DTIC, Cytoxin, and Vincristine. After an intense 6 months of this, the oncologist said it hadn’t helped and I would be dead in three to six months. So my parents decided to seek other options. I then tried an experimental treatment called whole-body hyperthermia where they heat your blood to a high temperature to fight the cancer. With that treatment, I had low dosages of radiation to the abdomen and pelvic area and some more chemo-BCNU and Prednisone. This procedure still isn’t commonly done, so I am not advocating one versus another. I think the combination of everything together helped me. At the time I was having the chemo, there was a tumor in my lung that was growing like crazy. It had grown from the size of a dime to that of a golfball and was getting extremely close to my heart. So in June 1981, after the chemo, radiation, and hyperthermia treatments were finished, I had lung surgery. The tumor they removed proved to be benign. It was a chondroma. All this time we assumed it was malignant, because it had been growing so much. One of my doctors thinks that it was something in the gastric juices that was causing the lung tumor to grow, but we don’t know for sure.
Now the next summer, in June 1982, I had more surgery. This time more abdominal surgery (Third stomach surgery). My surgeon who did the lung surgery and did the hyperthermia on me, Dr. Leon Parks, performed a total gastrectomy on me. With this surgery, I ended up losing my entire stomach, top and bottom stomach valves, my spleen, my appendix, and part of my liver. I had LMS mets to the liver but it was just on one side so it was cut out. The liver is capable of regenerating. Dr. Parks created a new stomach for me out of my small intestines. It is a little pouch inside of my body. It is just like a real stomach except it is intestines and some things don’t digest as well as others. It doesn’t protrude out of my body or anything. It is all internal.
To continue on with my story, everything seemed all right until 1984. That year I kept getting upper respiratory infections and bronchitis and pneumonia in the right lung that had been operated on in 1981. So I was on oral antibiotics for about 6 months and laser surgery was tried in hopes of removing the infection from the lung but it was unsuccessful. I ended up having more surgery in the summer of 1984. I lost half of my right lower and middle lobes of my right lung. The infection had gotten into the scar tissue and bronchial tubes where my former surgery was performed. So surgery was done to correct this condition.
My next major surgery was in 1990. I got married in 1987 and moved from Mississippi to Texas. My husband is a minister and works for a local hospice agency. I had been having regular CT scans and MRIs to follow-up and make sure everything was all right in the stomach and liver area. In October 1990, I flew back to Mississippi to have my surgeon, Dr. Parks, operate on me once again. My CT scans were showing something in the liver and I was having a lot of pain and indigestion. A sonogram showed that my gallbladder was full of small stones and sludge. A second look abdominal surgery was performed which resulted in the removal of my gallbladder, removal of adhesions and scar tissue in abdomen, unkinking my intestines, and the removal of several tumors. I had a benign tumor-a hepatic adenoma on my liver. In my pelvic area there was a benign tumor that appeared to be cystic in nature until it was sent to pathology. The diagnosis was a benign tumor-a paraganglioma. So thus far, for the past seven years I have been free of tumors. But something I forgot to mention is not only is the leiomyosarcoma rare in and of itself but when you pair it with the chondromas, and paragangliomas it makes up a very rare type of cancer called CARNEY’S TRIAD. I am only one of about 75 people in the WORLD who have been diagnosed with this. I was diagnosed with it in 1982. At that time I was the 22nd or 23rd patient to be diagnosed. It is named after Dr. J. A. Carney, a pathologist who is at Mayo Clinic in Rochester, Minnesota. I am even a case study in an article that he wrote in the early 1980’s.
Over the years there have been many minor surgeries, such as endoscopies, D&C;, biopsies, transfusion ports etc. One night I sat down and counted the number of times I have been under anesthesia and it is around 18. My aunt had called and we were talking, and she asked me had I ever counted them all! Of course, that also resulted in listing all the procedures done.
I am happy to be alive and on L-M-SARCOMA, the leiomyosarcoma Internet mailing list, so I can be kept up-to-date with the latest treatments be able to talk to others who have or have had this dreaded and rare disease. For many years, I felt like a needle in a haystack. No one had ever heard of this type of sarcoma. Or very little was known about it. I think cutting it out is very important. (MD Anderson in Houston, TX has a special section devoted just to the treatment of Sarcomas. I had a good physician there.) Editor’s Note: To subscribe to L-M-SARCOMA, the Leiomyoscaroma Mailing List, go to the ACOR L-M-SARCOMA subscription page
My leiomyosarcoma was slow growing and was either a stage/class one or two. I just remember it was very slow growing. For me, the longest I have ever gone between major surgeries has been 7 years. With major surgeries in 1974, 1980, 1981, 1982, 1984, 1990, and most recently on August 14, 1997.
My doctors all felt that with the removal of my stomach, which was the manufacturer of my cancer, that we had gotten rid of it for good. A person can live without their stomach so remember that if someone says it can’t be done, I am living proof it can be done. In August 1997, after being free of leiomyosarcoma for 15 years, and despite my doctor’s opinions, it reappeared. This time it was in one of my ovaries, my uterus, and behind my uterus. I ended up having surgery to remove my uterus, both ovaries, both tubes, cervix, and repair work to the colon. I also had severe endometriosis and adhesions and scar tissue from previous surgeries that was removed. The diagnosis was once again low-grade leiomyosarcoma. The oncologist/gyno here in Dallas is one of the best in the area. He removed all the tumors that he saw and looked around in my abdomen and didn’t see any others. Being low grade is good. It was also slow growing. He spoke with Dr. Carney and they all agree at this time no further chemo or radiation is necessary so we are following me with CT Scans and MRIs and Sonograms.
In April 1998 I had a liver biopsy only to discover that I now have Hepatitis C. In May 1998, I had a benign tumor/mass removed from my right breast. Currently, I am being followed closely by many doctors in the Dallas area. I just started Interferon and Ribavirin treatments for the Hep C.
A Little More About Me
I recently resigned from my position as an assistant librarian so I can focus on getting better and gaining back my strength. I was a bank teller prior to the job at the library. Before that, I was a weight loss counselor for Nutri-System where I taught people behavior modification. I have a college degree-BA in sociology with emphasis in social work and minor in psychology and an AAS degree in fashion merchandising. I was in high school and junior college during most of my treatments and surgeries. I even graduated from high school wearing a wig and was on the junior college homecoming court with a wig. My philosophy is to stay busy if possible. It helps keep your mind off of your illness. My hobbies are reading, oil painting, playing the flute, genealogy, collecting angels, helping people, writing, and doing cross stitch. Lately, my newest hobby has been spending time on the Internet. Take care everyone and thank you for allowing me to share my very long story with you. If you need me to clarify anything, I will gladly do so.
Now to tell you something else..Before I got sick in 1980, I had a dream that I feel was a forewarning from the Lord. In the dream I am lying in the hospital bed and there is an IV in my arm and my surgeon walks in. He says, “Ardeth we are going to have to operate.” Next in the dream, I am still in the hospital when he again walks into the room, only this time I have an NG tube coming out my nose. The surgeon said, “I have someone I want you to meet.” He leaves me alone with a doctor who says, “You have cancer.” At that point in the dream, the doctor leaves and I look up and see the devil who is laughing at me. He disappears and I look up and see that Jesus is standing beside me. Jesus says, “Ardeth, do not be afraid. I am going to heal you and to be with you through this time, but you must have patience.” Well, guess what?? The doctors in real life were the exact same ones in my dream. It happened almost identically to the dream with the one leaving and the other saying, “You have cancer.” I didn’t remember the dream until after the oncologist left the room. My mother and several other church friends all joined hands and began to pray. As we were praying, I heard a little voice say, “Remember your dream.” Well, the dream came back to me immediately. At that same time, my mother said that she felt someone brush against her and she had a peace. She said it felt like a person with a long-flowing robe. I have no doubt that it was Jesus because how many mothers would suddenly have a perfect peace after just learning that their daughter has cancer? I felt like it would be all right too. So with many surgeries, treatments, and prayers I am here today when some doctors felt I should have been dead years ago. The power of prayer really does work, but please follow your doctor’s recommendations and never give up hope.
I can only hope that this offers some encouragement to others who are suffering from Leiomyosarcoma. Take care and may God bless each and everyone of you. Thank you for allowing me to share my story with you.
Update: August 1999
I have just finished the 6 months of intense treatment for the Hepatitis C and it is now in remission. The doctor said the viral load was at “0” and it was undetectable in my system. I go back to see the liver specialist in 6 months for another evaluation and check-up.
Update: May 2002
In 2001, I was blessed to find a late-effects doctor in Dallas. He sees long-term survivors of childhood, adolescent, and young adult cancers. After many different tests, it was discovered that the chemo I had back when I was 18 was causing me to have some late effects. I was diagnosed with cardiomyopathy. It was also discovered that I have restrictive and diffusion problems with my lungs. I also have osteoporosis and a long list of other problems. There is an excellent online list at ACOR, The Association of Online Cancer Resources, for long-term survivors from cancers of all types. The list is called LT-SURVIVORS.
I joined that group and it has really helped me in dealing with my late effects. I am still a member of the Leiomyosarcoma list at ACOR as well as another Leiomyosarcoma list through Yahoo. As of right now, there is not any evidence of tumors in my body. I am thankful to be alive and trying to enjoy life to the fullest despite my medical problems.
If I can answer any questions or if you’d like to talk, please send me a letter!
This CancerGuide Page By Ardeth F.. © Ardeth F.
Last Updated: May 4, 2002