Alan's Story

Alan, Leiomyosarcoma Survivor

Alan was 61 when he was diagnosed with leiomyosarcoma of the pelvic cavity. His treatments included surgery, radiation therapy and chemotherapy.

In 2006, a leiomyosarcoma (LMS) tumor was discovered in my pelvic cavity. This tumor was identified as LMS six weeks after I had first experienced symptoms. The first signs were frequent urination followed by a rise in blood pressure. Initially, my doctor suspected that these symptoms were likely caused by an enlarged prostate, a common symptom amongst men over 60 years of age. After four weeks, when I did not respond to the prostate and blood pressure medications that were prescribed, my doctor suggested that I undergo a sonogram. 

The sonogram found that there was a large mass that was pushing against my kidney and bladder. A biopsy was ordered and after a long wait a diagnosis of a leiomyosarcoma was made. The urologist who reviewed the biopsy I spoke to said that in his 20 years of practice that this was the first LMS that he had diagnosed and that he was reading about LMS to obtain more information. 

Prior to the discovery of my LMS, I was making plans for retirement after 35 years of serving as a university administrator and faculty member. My planned retirement was to enable me to initiate a new project that I had been envisioning for years, a public charter middle school serving the downtown Los Angeles area. After learning about the bleak prospects I was confronting with my cancer, I was forced to drop this project and opted for an early retirement.

What I remember most about the discovery of my LMS was the somewhat clinical manner in which I approached my surgery and treatments. I tried to learn as much as I could about LMS to try to prepare myself for the challenge that lay ahead.  Fortunately, my discovery of the LMS listserve and the www.leiomyosarcoma.info website provided me with valuable support and guidance. Through my search I was able to make contact with Dr. Doreen Kossove ("Dr. Dee," as she was known to us who have been battling LMS for years). While battling Stage IV LMS herself, Dr. Dee contacted me and provided me with valuable insights and information on the choices in the road that lay ahead for me. My remembrance of the time spent with Dr. Dee, and the subsequent meetings and correspondence with other LMS survivors, are fond ones that have been so meaningful to me.

What I also remember about my reactions to the discovery of LMS was my sense of peace regarding where I was in life. I was thankful for a wonderful life with a great family, good friends, a fulfilling career, and active involvement in community activities. As my children were both adults with families and well-established in their careers and my wife was strong and active, I felt that I could move forward in good spirits no matter how many days, months, or years lay ahead for me.

Treatment

Following my LMS diagnosis I had to wait four weeks before surgery was scheduled at Kaiser in Los Angeles. It took two weeks to schedule a consultation appointment with the surgeon and then another two weeks to schedule the surgery. During this four week period the tumor continued to grow and I was experiencing more pronounced symptoms. After a nine hour surgery, a large (19 cm wide) mass was removed. Fortunately, the tumor did not appear to be attached to any organs but a safe margin could not be obtained as the tumor was adjacent to my right pelvic sidewall. The pathology of the tumor revealed the mass to be high grade.

After my initial surgery to resect the LMS tumor, I had an eight week recuperation period. During that time, I reviewed my options and decided to undergo both radiation (IMRT) and chemotherapy treatments (Gemzar and Taxotere). While not easy decisions, I felt both radiation and chemo were in order as the primary tumor was lodged next to my pelvic sidewall so it may possibly have metastasized. I was extremely fortunate to be located near to a major sarcoma center (Cedars Sinai Sarcoma Center) and treated by a knowledgeable sarcoma care team led by Dr. Charles Forscher. Upon consultation with Dr. Forscher, I decided to undergo radiation treatment to focus on the area adjacent to the pelvic side wall. IMRT was used to focus radiation and minimize the level of general radiation exposure to the pelvic cavity. As I completed my radiation treatments, I began chemotherapy. Gemzar and Taxotere (Gem/Tax) were selected. My chemotherapy was completed in six months. 

Fortunately, the side effects of both the radiation and chemo were minimal. The radiation was fine with no burning and, to date, I have no lasting effects from the radiation. The chemo was also tolerated well. As the treatments advanced I began to experience extreme fatigue and shortness of breath but was generally comfortable during the treatment. Exceptions were occasional diarrhea and constipation.

Recurrence and Recovery

After 4 ½ years of having No Evidence of Disease (NED), I experienced a local recurrence of my LMS in my pelvic cavity in September 2011. Fortunately, this recurrence was discovered early enough due to my 6 month CT scan schedule. The tumor was surgically removed with no additional treatments other than regular CT scans to identify any additional recurrences.

Alan bikingMy recovery from my initial surgery and treatments and my recurrence has gone extremely well. I attest some of my relatively smooth recuperations from the fact that I have always been physically active. Prior to my LMS and now I remain active in cycling and tennis. I have maintained a regular schedule of physical activity since my recurrence and try to maintain this as it is likely that there may be some recurrences in the future. After my recurrence, I now drink a daily blend of kale, spinach, carrots, and juice as a preventative measure. I have also undergone Chinese herbal detoxification.

Life Now

I am enjoying retirement and continuing to do the things that are important to me. I try to maintain an active life that balances family/friends, with community service and maintaining a good diet and fitness regimen. I stay connected to the sarcoma community by actively reading the LMS listserve, supporting the Liddy Shriver Sarcoma Initiative and also participating in events sponsored by the Sarcoma Alliance.

Thoughts for New Patients

I have advised some friends I have met who are battling sarcomas and other rare cancers. My advice mirrors what the LMS listserve and the Liddy Shriver Sarcoma Initiative website stress: Be seen at a cancer center that specializes in sarcomas. Educate and empower yourself to be a full partner in the development of a treatment plan. Engage and seek the support of others who are fighting similar battles. Finally, I would stress the importance of addressing the emotional needs of family and friends who are providing care and support. Emotionally and psychologically dealing with LMS has been much harder on my wife than it has been on me. I think if our roles were reversed that I, too, would have a much harder time.

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Kat 14/08/2014 01:10 pm
I was diagnosed with a large LMS in my liver in 2012. After 6 months Dox/Ifos I had an operation where a successful resection of a massive tumour was removed with good margins. Local recurrence in April 2014, total resection again, PET/CT scan in May was clear, however new scan today has revealed another small tumour, so my fight goes on. I have faith in my medical team, I am very shocked though that I have another recurrence so soon.
Shilpa 30/07/2014 05:51 am
Hi Alan,
Your story gives me some strength. My mom was diagnosed of LMS of the uterus 2 months ago. It was an accidental finding while she was undergoing a hysterectomy operation. She just finished her first chemotherapy cycle,GemTax. Every doctor says that it's a rare and most aggressive sarcoma. I am only hoLu g and praying every minute that my mom and all other patients suffering LMS beat the odds and live a happy n healthy life.
Helen 28/03/2014 09:49 pm
Hi Alan
I was diagnosed with leiomyosarcoma in August 13 and had the tumour which was not attached to any organs and was 8cm was removed on 6 sept 2013. After waiting for the area to heal I then had 28 days of radiotherapy and then on the 15th jan 2014 I started chemo of doxorubicin and ifosomide. I've had 3 cycles and will have a total of 6. I'm in Australia and I don't know of any sarcoma help centres. If anyone knows of any that would be good.
Thank you and all the very best.
Helen
Nela 01/11/2013 09:25 am
I live in South Africa. Last year August 2012 I had an hysteractomy, after complaining since February to my gynea about terrible pains in my abdomen. I was told after my operation that there was cancer in my uterus and it was LMS. I was told to go and see an oncologist. I did a CT scan and they couldn't see anything. I was told to go and do another CT scan three months later and that was November. They found the cancer had spread to my lymph glands and right ovary. I under went an aggressive chemo treatment where I had to be hospitalised. After the second treatment, I did another CT scan and the tumours had shrunk by more than 50 percent. After another two treatments , I had another CT scan and there was no sign of tumours. I had an operation in June 2013 to remove lymph nodes and my right ovary. The histology reports came back saying it was clean. In September, on my birthday I experienced pain and went back to see the oncologist. My next CT scan and check up was due in October. The oncologist sent me for a CT scan, only to find out the cancer spread to my pelvic area. I had to have a stent put in the tube that comes from the kidney to the bladder because the two tumours are pressing on the tube and my kidney only functions 50 percent. I have started with my chemo treatment. I am very positive and have faith that I will be cured. I have faith in my oncologist and in God. Your story just gave me more hope.
Vivian Viars 31/10/2013 01:15 pm
Thank you for sharing your story. I was diagnosed with LMS after 2 years following a growth near my pancreas. The Dr. was using EUS and finally got a biopsy, hence the diagnosis. I had surgery in Sept. 2013. It was slow growing, indenting the IVC. The surgeon was not able to achieve wide margins due to the location. The tumor was not on the pancreas. I start radiation therapy soon. Thank you for the information.

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