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Josephine's Story

Dear Everyone.

I'm a girl who turned 17 in October.

1 1/2 year ago something unexpected happened. In September 2000 I started taking the pill. Suddenly I noticed some changes in my appearance. I took on some weight, grew hair all over my body, got depressed and had to stop school.

In October I went to the doctor, but he only told me to stop taking the pills. After a few months everything would be all right again, he said. But things only got worse. I couldn't bare it anymore. I wouldn't see anyone and my boyfriend decided to break up with me.

In February I was diagnosed (finally). After some months waiting I had my surgery April the 18. 2001. My tumor was on my right adrenal gland and was quite big. Unfortunately, it was malignant and I started taking chemo pills. For 6 months I had bad side effects from the pills, but now I'm doing fine.

I would like to talk to others with a disease similar to mine.

Love Josephine


Hello Everybody.

I'm a young girl from Denmark who have suffered from this terrible disease.

I believe that the tumor has been in my body for a very long time before I noticed the changes. In October 2000 I started gaining weight, I got hair everywhere and the hair turned dark -hirsutism.

I hated the way I looked and went to the doctor. He told me that it all probably was because of the puberty. In the next few months it got worse. I continued gaining weight and my face became round and red. I actually looked like a monster...I saw myself as a big ugly bear.

I fell in to a depression and couldn't see any light. I dropped out of school in December 2000. Then suddenly after hundreds of visits to the doctor the figured out the my cortisol-level was too high and I went through all the tests you probably know.

Then in February 2001 I had my diagnosis and April the 18. I had my surgery. The removed my tumor and my right adrenal gland. A month after the surgery I got an awful message. My tumor was malignant - it was cancer.

From that day I have been taking up to 22 pills a day. The worst is the mitotane which kills all the bad cells - it's chemotherapy so they can make me sick and I'm always tired. But even though I think that I have learned something in the period. I've grown up and is a lot more mature now. The bad part is that I'll always live with the fear of the Cushing's turning back.

If you want to talk to somebody who knows what it's like to suffer from Cushing's then write me. I really like to write with people who understands me.

Update October 30, 2003

Well, I thought that everything was ok. I stopped with mitotane 1 May. The 29 of October the doctors told me that the tumor was back. It was over the right kidney. Surgery and treatment with mitotane or chemotherapy will follow. Life always surprises you.

Love from Josephine. Denmark

Update January, 2004

Well, the doctors found out that there was not only one tumor. Surprisingly there were also a tumor in my left lung. I had my surgery in November and December and everything went well. I'm doing fine now and do not fell sick at all. I started mitotane just to be on the safe side but it made me fell so bad that I decided to stop and see what happens. I also suffers from sarcoidosis but actually have no symptoms.

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