DES, Cancer and Me

What was said to be a harmless drug that would help with Nausea during pregnancy, near killed me.

I was not pregnant but my mother was. The year was 1958 and a popular drug at the time was called DES. Diethylstilbestrol (DES) is a synthetic hormone also known as Stilboestrol. This drug was given to prevent miscarriages in women. My mother was told that it would help with the nausea she was experiencing with me. And it was prescribed like candy all over the world. Women were given it if they had blood pressure issues during pregnancy. Women were told it would help prevent Cervical Cancer. Teenage girls were sometimes prescribed DES to prevent them from getting too tall to fast. How absurd and unfortunate that a lot of these girls were double exposed to it, if their mother also took the drug.

It was prescribed to approximately 6,000,000, that’s right, 6 Million women worldwide. Hard to say how many children those women had.

How it almost killed me.

At a tender young age of 10, I was a happy normal child growing up in the second largest city in Illinois, Peoria. I was tall for my age, but thankfully there was another girl my age that had me beat. I was an active and healthy child until one day I started spotting blood. My mother took me to her gynecologist, who had prescribed DES 10 years earlier. He was not too concerned, did no testing, and sent us on our merry way stating that I was just more advanced than other girls my age and would have probably have my period early.

So we went back to life as we knew it. As the weeks went by I noticed that my stomach was harder than usual. And I mean it was hard. I was sort of a tomboy, and I could hit it with my fist and it felt like there was a large rock in there. I told my mom about it and she told me I ate too much. I had no pain so at 10 years old you don’t worry about things like tumors or cancers, if Mom said you ate too much you believed her.

Then one day, 5 days before school was to get out for the summer, while coming down the stairs, I collapsed. The next memory I have was waking up in the hospital bed with an incision that started just below my sternum (of course back then I didn’t know it was called a sternum) to just above the pubic bone. I had 5 large retention sutures that had big black thread and white plastic tubes wrapping the thread. Then I had over 30 smaller stitches all the way down the incision. I’m sure I was in pain, but was kept quite comfortable and slept a lot.

My parents had been given the bad news. I had 2 ovarian cancerous tumors removed. One was the size of a football in my upper abdomen and another softball sized one on my ovary, which they removed during surgery. They were told that the tumors would probably return and I had approximately 3 months to live. My parents were instructed to take me to a Children’s Hospital in Memphis, TN that was aggressively treating childhood cancers.

They did not hesitate to plan the trip. They bought an old VW van. The engine was in the back, so they made a feather bed above the motor and they made arrangements for family to take care of my 3 sisters.

When I came home from the hospital in Peoria, get-well cards from people I didn’t even know graciously adorned me. My school had thrown a carnival and rose what seemed like a huge amount of money to me, for me. I didn’t understand anything more than I had surgery and we were going to take a trip to go to a different hospital in another state. No one told me I could die, or that I almost died. All I knew was I wanted to get better so I could go run around with my friends that summer.

I will never forget the day they placed me in the back of that van. My whole family was there to see us off. Grandparents, aunts, uncles, cousins, sisters, friends and even neighbors were there to wave us goodbye. I was truly surrounded by love.

My parents knew nothing about St Jude Hospital other than their name and that they were located in Memphis. They were told to stop at the first gas station once they arrived in Memphis and someone could tell us where they were located. (Mind you this was before the age of computers, cell phones or GPS.) So with a map in hand, sick child in the back and all of my medical records we hit the road for a long, life-changing journey.

We found St. Jude and I remember seeing a large statue of St. Jude out in the parking lot. It was a much smaller hospital than the one I had just left, but the staff was so friendly. They had a southern accent that made me laugh since I had never heard it before. They couldn’t say Peoria; they called it PeeRoy, Illinois. This made me laugh too; looking back I think they did it on purpose, just to get me to smile. I cried a lot, but mainly out of fear. The memories of pain faded with time. Miracle.

We were introduced to a team of doctors that were willing to try experimental treatments, combining radiation and chemotherapy. My parents were told that no one at my age had ever been diagnosed with Ovarian Cancer and survived. I would basically be a guinea pig and my treatment would be closely monitored and changed as we went along. Treatment would last 3 months and we would have to remain in Memphis during that time.

St Jude was at the time the only children’s hospital that was free of charge in the Midwest. Miracle. What insurance did not cover would be covered by donations. We were offered an efficiency apartment and meal tickets at the hospital. They did not believe in keeping the children in the hospital overnight unless their condition warranted it. This information was of great relief to my parents, since money was tight those days.

So we moved into our high-rise apartment, that’s what I called it. I was excited because it had a pool even though I would not be able to swim until my incision healed completely, and this was going to take some time.

Treatment started immediately. They painted large purple boxes on my stomach and back and gave me radiation first. Once the radiation treatments were completed then I was to receive the chemotherapy. I remember they drew blood a lot, weighed me often, and took pictures of me in my underwear from the front and side too often for my liking. It was embarrassing, but they always had women taking the pictures to put me at ease. They tried to explain why this documentation was needed for future girls needing treatment like me.

My father could not stay for the entire summer. He had to get back to go to work and take care of my sisters. He left by bus one day, after giving my mother a letter, kissing us good-bye and promising to come back real soon. Later we read his letter that expressed how much he loved us both and spoke of some of his fears. I believe my mother still hangs on to that letter to this day. My father was a gentle man of few words.

Mom and I stayed behind. She always tried to make the best of the situation and she taught me how to take one day at a time. She refused to let me lie down and die. She took me everywhere she could, on what money we had. It didn’t matter if I was having a nauseous day or not, we would go; I think I puked in more/different garbage cans than
anyone else in Memphis’ history. Her theory was “if you keep going, you can’t dwell on the bad.” When I got too weak, we used a wheel chair.

A few weeks later, my aunt, uncle and cousins brought down my dad and sisters. It was good to have people around that you knew. My sister got to stay for the rest of the summer but Dad still had to go back. After that we would get visitors about every other weekend from different family members. Every time someone new came down, Mom had to take them passed Elvis Presley’s house and go to The Pink Palace. The palace was a very ornate building made of clay stone that was pink in color. I also believed at the time, I had visited the Pink Palace more that anyone in Memphis’ history.

At one point I had a break in treatment so we decided to go home. My mother’s father had become ill and we thought it would be a good idea to go home for a week. We were stopped by a state trooper in Missouri who informed Mom that she needed to call home right away. We were too late. My grandfather had passed away before we got there.

After chemotherapy started, I lost all of my hair. This was a bigger tragedy than the scar running all the way down my stomach. At least I could hide that ugly scar. There wasn’t much offered back then for 10 year old when it came to wigs. We finally found a pageboy wig that was my size. I missed my beautiful blond hair, but this was better than running around bald. I’m glad that it’s more accepted today.

By the end of summer, treatment was to continue at my family physician back in Peoria, my nurse, Baba, was wonderful like those at St Jude. And I was stable enough to go back to school. This excited me and yet scared me to death. What would all the other kids think? I looked like a starving child from Ethiopia you see on TV, I was wearing a wig that looked like a wig and I was still going to be the 2nd tallest girl in my class.

I was called names a lot. But I had my girlfriends and my family always reassuring me that I was a Miracle and that was all that mattered.

We still had to return to Memphis often. As the years passed, the visits got further apart until 10 years had gone by and they declared me free of threat of the cancer returning and visits would be on an as needed or wanted basis. Leaving those wonderful people was hard to do because they had become your family after all those years. 90 % of the staff that were there on my first day were still there on my last day. No one ever seemed to quit or leave St Jude’s employment. They were dedicated individuals who were there for life. I truly cannot thank them enough.

So why now do I tell my story. It is because it not only is a story worth telling but it is to encourage more of the 6 million women out there to tell theirs. That number is of course smaller than the actual number of lives that have been either affected by or destroyed by DES and the manufacturers of other drugs that are put on the market prematurely, given to people for the wrong reasons, and left on the market far longer than they should once they are proven harmful.

I want all women born between 1940 and 1975 to ask their mothers if they took DES, Diethylstilbestrol or Stilboestrol. These women should be aware of their increased risk of cancer that could present itself at any time. It is now said that these daughters have a 40% increased risk of developing breast cancer and after the age of 40 the increased risk jumps by 250% and rising. Not to mention an increased risk to all reproductive organs. Even if your mother cannot remember taking this drug by name, find out if she was prescribed any medication for the symptoms listed above or during her pregnancies.

I am constantly shocked by the lack of news coverage. Doctors are puzzled as to why we are having such an increase in the incidence of female cancers? Well DA. It sounds like a huge conspiracy theory.

Americans want a pill to fix everything. So drug companies will sell doctors on bogus benefits of medication (when they know there is an increased chance of making you sicker), doctors prescribe this medication like candy, not warning innocent people of the possible side effects and everyone’s happy. Until suddenly or gradually they start to tie adverse side effects to a particular drug and withdraw it from the market, which can take years to accomplish. In the meantime these same drug manufacturers are coming out with new drugs to fight the complications of the original drugs. Who’s getting rich? Who’s getting sicker? Who’s protecting us?

Even after they pulled DES from the market in 1975, no attempt was made to contact and warn any of the women who could have been easily found. We are supposed to come across warnings and updates in women’s magazine articles. Trust that our doctors ask the right questions when you are diagnosed with cancer. Now a lot of these mothers are deceased themselves, many of them by cancer also that may or may not be tied to this medication.

What about the boys of these women? Yes, they too were affected. Sons of DES mothers are said to have low sperm counts and undescended testicles. It is also not proven but they believe it may be related to an increased risk of testicular cancer. So gentlemen, you should also be asking your mothers about their medication history during her pregnancy.

Second generation sons of DES daughters are reported to have an increase risk of hypospadias, a congenital defect where the urethral opening is located on the front of the penis or scrotum. These long-term effects should serve as a potent reminder of the potential harmful consequences of over-zealous drug promotion and distribution.

And if this was not bad enough, it was discovered that beef raised in the United States was tainted with this drug as recently as 1999. They say this tainted beef was sent only to Switzerland, I say prove it. Again, we are left unprotected by the FDA. Is it not their job to regulate all food and drugs and protect us Americans?

I also find it incredible and unbelievable that a drug manufacturer comes out with a drug that claims to prevent cervical cancer in young women today. No one really knows how many generations the effects of DES and others may have. Sounds to me like they are once again only concerned about covering their asses ( I mean assets) and trying to fix a problem they started in the first place. You should know that this vaccine is ineffective to the type of cervical cancer caused by this drug. And as an additional warning to anyone considering having their daughters vaccinated with this new drug (with future plans of promoting it to teenage boys) please, please, please consider the list of possible side effects listed with this one.

The most informative website I have been able to locate on DES is at www.desaction.org.
I would love to hear your DES story and you can send it to me at
rainbows513@msn.com. (or do you suggest I use a different email tied to anitaburnett.com)
Women who are DES daughter are recommended to have DES exams and you can find more information at http://www.desaction.org/pdfs/screening.pdf but even this recommendation by the American Cancer Society falls short of enough recommendations including breast exams and screening for men.

I was never able to bare children; too many of my reproductive organs were affected by the treatment. And yes my hair grew back in nicely. Darker, thicker and curlier than before. It took me years to gain enough weight to break 100 pounds. I celebrated the day I did. For over 30 years I remained cancer free, until 3 years ago when Kidney cancer was found only by my persistence to my doctor for an unexplained pain I was having in my back. After repeated attempts to fix the problem with therapy, I insisted my doctor order an MRI considering my history. This cancer was found and removed before it was allowed to become invasive. Had I allowed this doctor to dismiss my concerns as they did in 1969, I may have had another close call. HUM, effects of DES all these years later. No one will know. Oh, and Baba, my nurse in Peoria, is the mother of one of my sister-in-laws and wife of my patient, Jim that I help care for today.

Do not expect your life to be protected by drug companies, the FDA, and in many cases your doctor. Please take matters into your own hands, become informed. If at all possible ask your mother if took this Killer Med. I know how lucky I was, but I also know that many other women and children were not as fortunate as I.

I consider my survival a Miracle, I consider St Jude’s a Miracle hospital. Since then I request and receive Miracles daily. It’s my choice.

I do not sit around trying to figure out how to stop drug companies for doing more harm than good, or how to sue them for what they have done. Though I do believe they should be held responsible regardless of the statute of limitations.

I do not sit around worrying about getting another cancer. I do the same thing I have done for the past 38 years. Get yearly exams, report any unexplained pain that last longer than a month and pray to God to keep me healthy and strong so that I can fulfill my purpose in life. But my hope is that this article reaches even a few people and it changes the course of their life in some small way. I hope that more people discover that they had DES exposure and are able to find their cancers early enough to be cured.

You would be wise to ask your mother if she took this drug during her pregnancy between the year 1940 and 1975.
For more information on DES and Anita Burnett go to www.anitaburnett.com