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My Story | Rosalie P., New Jersey, USA

Recurrent mixoid leiomyosarcoma (LMS) diagnosed 1981 at 45; reclassified endometrial stromal sarcoma (ESS) 2000 at 65
Hysterectomy, bilateral thoracotomies, laparotomy, hormonal therapy
Lobular carcinoma in situ  (LCIS) of the breast 3x (1992)
Five lumpectomies, tamoxifen

My story started over 22 years ago when, after a year of heavy bleeding, I had a hysterectomy to remove a fibroid the size of a five-month pregnancy (12 centimeters). The gynecologist and I were both surprised it was cancer. He told me I was cured, so I went on my merry way, never getting chest X-rays or CT scans, never getting checked out except for pelvic exams and pap smears every year.

Eleven years later, I had bilateral breast surgeries (lumpectomies) for lobular carcinoma in situ (LCIS), and during pre-operative testing, they discovered five nodules in my lungs. I had the breast surgery and six weeks later, I found myself having lung surgery. The pulmonologist ordered a lung biopsy, after which he told me to go home, pray for the best and expect the worst. He did not offer me any hope. They did not get enough cells to make a diagnosis. They wanted me to have another biopsy, but I was afraid that the procedure would spread the cancer, so I refused.

My breast surgeon recommended that I go to Memorial Sloan Kettering, a sarcoma center, because he suspected LMS metastases. I did, and the thoracic surgeon knew immediately they were metastases from the uterus. I had a definite diagnosis of low-grade myxoid leiomyosarcoma (LMS). Since it was LMS, no one made a fuss over it. I did not know it was so rare and hard to treat. I asked questions, but no one knew much in those days. I read books, but all I found out was that .01 percent of uterine cancers are LMS. My thoracic surgeon operated on both lungs at the same time with a procedure called a bilateral clamshell thoracotomy, cutting down from the armpit under the breasts and across the chest up the other armpit. The spindle cells in my lungs hung down like gelatinous icicles.

Almost three years later, I had to have the same operation for four more nodules in both lungs. This is a very painful surgery because the sternum has been sawed open and it hurts to breathe. The narcotic drugs hyped me up so badly I never slept and couldn't even rest. The second time, I asked to see someone who could help, and an anesthesiologist from the Pain Clinic was sent to see me. He suggested an epidural and a PCA (patient controlled anesthesia) pump. When the pain got bad, I could push a button for more of the drug. I don't know why I wasn't told of the Pain Management Clinic the first time - I wouldn't have suffered the way I did.

I have never had chemo or radiation. Low grade LMS would not respond, so I was very lucky that I was a candidate for surgery. I have other health problems that limit my options. I have an autoimmune condition called Celiac Disease that requires a special diet. I also have an IgA deficiency (an immunodeficiency disorder) that complicates treatment as well.

As a result of my numerous surgeries, I have developed anxieties over the years and relive my bad experiences. My mind does not turn off at night and I find it hard to sleep. I guess you would say I suffer from post-traumatic stress disorder - I do take something for it at night. After eight surgeries, I am not as active as I would like to be, but I am lucky to be alive, especially since I've not had regular scans.

My fight continued. On March 8, 2000, I had surgery to remove an encapsulated 6.9-centimeter retroperitoneal tumor. It was LMS again. After almost 19 years, it returned to the scene of the crime in the pelvic area. No two cases of LMS are alike and the doctor said he'd never heard of it recurring after so many years.

I went back to the comprehensive cancer center for treatment. I had a lot of complications this time. The tumor was in a difficult place to reach - under the intestines in the pelvis. I had to have part of my obturator nerve taken out because the tumor was growing into it. As a result, I had difficulty walking. I also had my remaining ovary removed. The pathology report said I was progesterone-receptor positive, estrogen-receptor negative. I had never been tested for this before. I had been on tamoxifen for five years when the lobular carcinoma in situ (LCIS) was discovered, but no one seems to know it if helped slow my LMS or not, because the only studies have been on breast cancer. The tamoxifen did lower my risk of developing invasive breast cancer, however.

I had a fourth recurrence of LMS in January 2001. My CT scan showed five small nodules in my lungs again. I started on Megace, a hormonal therapy, but switched to Femara (Letrozole), which is keeping me stable - none of the nodules have grown since I have been on hormone therapy. Because my last tumor carried stromal cells, I was told I have endometrial stromal sarcoma (ESS), a subclassification of LMS.

I have learned a lot from coping with cancer for 22 years. I always have many questions to ask my doctors, and I write them down before a visit. Whenever I greet the doctors, I have a smile on my face because they deal with cancer patients all day long, and I think it brightens their day. Sometimes I just have to show them that I have a positive attitude and a sense of humor because they seem so serious. I have even had to reassure my surgeon that I would come through with flying colors.

My family is proud of my attitude; I am their role model just as my mother was mine in surviving breast cancer for many years. I know that if something bad happens to any of them, they will show the courage, bravery and positive attitude that I have shown.

The support of family and friends is very important. I have been lucky to have my husband walking by my side every step of the way. When quite a few of my friends and family pulled away because they no longer knew what to say to me, I discovered I was not the one with the problem - they were. I felt better realizing this. They simply could not cope with my cancer. People tend to forget that even strong people need support.

Another way I coped was by joining a gyn-cancer support group when I had my first recurrence. It was a wonderful group and the therapist was a dedicated and caring woman who did her job well. There were eight of us, but I was the only one with LMS. For years, I listened to Dr. Bernie Siegel's tapes, self-hypnosis tapes and relaxation tapes. I read all sorts of self-help books. I think they really helped me to cope. I got over the hump of living in fear and learned to live day by day.

I am a survivor and I have dedicated myself to helping others like myself with education and knowledge. If one woman reads my story, learns about their options, and gets the message that they MUST be monitored by scans (I wasn't, and my recurrence was discovered by accident), I will be happy. Even if we start out as pussycats, we can toughen up, and learn to live like lions.

Editor's note: Rosalie writes that, as of May 2004, she is taking each day at a time and is trying to enjoy a cancer drug-free experience again. She has been off Letrozole for three months because it raised her cholesterol to unhealthy levels. All of her scans (chest, abdomen and pelvis) remain stable and she is followed carefully with checkups every three months. Because her body needed a rest from all the anti-hormonal treatments, she is not taking anything at present. She feels her nodules will stay stable awhile, but, at some point, will begin to grow again. If that happens, she will try another aromatase inhibitor.

May 2004

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