Never did I expect to have cancer. With the exception of my aunt who had lung cancer (she was a smoker), there was no history of cancer in my family. My nutritional program was and is above average. I eat organic as much as possible and had at least a moderate exercise routine. How did I get cancer? I learned that everyone has the potential somewhere in their DNA for cancer cells to raise their ugly head and start dividing.

My first symptom was a bloated lower abdomen, although I didn't recognize it as bloating. I thought my body was changing, after turning 50, and I was developing the shape my mother had. The first realization that something was wrong was when I visited my chiropractor. As I was going face down on the table, I had the feeling there was a water balloon in my lower abdomen. About that time, I had a routine colonoscopy scheduled. I asked the doctor to check my abdomen and after the colonoscopy, he suggested a CT scan. It turned out I did have something like a water balloon, but instead it was a large tumor. I was referred to a gynecologic oncologist , Dr. Scott Jennings in Charleston. He scheduled the surgery to do a radical hysterectomy along with removing the tumor, which was growing out of my uterus.

Unfortunately, that same date was the wedding of my step son. Due to the amount of travel and stage of my condition at the time of discovery, I was strongly advised not to put the surgery off.

The pathology report described the tumor as myxoid leiomyosarcoma of the posterior myometrium. The tumor dimensions were 20.9 cm x 13.7 cm x 19.2 cm, and it was a large gelanous mass. The mitotic counts averaged one per ten high power fields, which is low, but the prognosis is the same as usual leiomyosarcomas. The lymph nodes removed had no evidence of malignancy. Neither did the ovaries, cervix, tissue from right or left sacrum, or omethium. It was in stage one.

I was blessed to have a wonderful gynecologic oncologist and surgeon, Dr. Jennings, who removed the tumor entirely intact. There was no indication of any spread to other areas of my body. The surgery went well and I stayed in the hospital for 4 days. The recovery period was a slow one, but there was noticeable improvement every week. My mission was to recover from the surgery and then consider treatment. I am very thankful to my husband, Euel, who took extremely good care of me during the entire recovery and treatment period.

Five weeks after surgery, I felt strong enough to go back to work part time. In hindsight, this was not the best decision. As a result of being on my legs more than I should, it caused additional swelling from the groin and pelvic area to my thighs. There was also considerable aching down my legs. I ended up working in the mornings and lying in bed the rest of the afternoon. After the radiation started, it all became more aggravated and I am still trying to get back to normal. (more on that later)

Three months after surgery, I had a CT scan of the pelvic area and my lungs. There was no evidence of recurrence! Dr. Jennings discussed radiation with me for "insurance" purposes and encouraged me to get a second opinion on treatment, for my own piece of mind. There is no chemotherapy developed to treat this type of sarcoma and there are currently no trials whose criteria I met. I visited Duke and was given the same recommendation for radiation treatment that Dr. Jennings had suggested.

My radiation treatment was done at Carolina Regional Cancer Center in Myrtle Beach, SC. The dosage was 54 Gy in 30 treatments Monday - Friday for 6 weeks. The dose was to the whole pelvis with a boost to the vaginal cuff, utilizing 18 MV photons with a 3-D Tx plan. During the treatments, the worst symptom was diarrhea. I felt like I had a 24 hour virus (less the vomiting) for 3 weeks. I used Immodium AD and Lomotil to help control the diarrhea. That helped a little but it didn't subside until the radiation was over. Having a really good nutrition plan in place BEFORE the treatments begin is my strongest recommendation (see Nutrition page for the nutritionist I consulted). Due to irritation from the radiation, my thighs started to hold a lot of fluid and it was thought to be caused from the lymph system trying to repair itself. I had manual lymph drainage massage done 2-3 times a week during the 6 weeks of radiation and for a month after. It definitely helped relieve the symptoms. Dr. Jennings told me NOT to use the stockings for compression as part of the recommended treatment along with the massage due to the body needing to repair itself as intended. I stopped using the stockings immediately and did not notice a difference in the swelling of my legs. Within a month after the last treatment, the swelling and fluid had subsided.

I had problems sitting for extended periods of time because it caused the muscles in my glutes and thighs to swell, which in turn puts pressure on the nerves. That causes pain to radiate down to my knees. Dr Jennings said the condition was most likely caused from radiation neuritis and the irritation was from the femoral nerve. In search of relief, at five months after surgery and one month after radiation ended, I had acupuncture. It is amazing how I immediately felt relief from nerve pain in my legs. After the initial treatment, I did not experience additional relief, so I had only 4 treatments. I also joined a health club with an indoor heated pool, so I used the deep end to tread water and swim. Swimming is the most recommended treatment to help my leg circulation and to help my muscles get back in shape. 

It is now July 2008 and I have been cancer free for three years! This has absolutely been a journey and I'm so blessed that the cancer has stayed in remission. Please contact me if you would like to talk more about my experiences or have questions about Sarcoma. My email address is newlife05@sc.rr.com.

• John's Journey

 

Janet,

 

So nice to hear from you! Hope you are doing well with all your "stuff".

Here is my story.

 

John's Journey

 

 Hello, My name is John. I am a 45 year old man who up until the end of March of 2005 had a better than average life. A great marriage, two great kids, a successful career; life was good. Then literally overnight, my world changed. A late night trip to the ER for back pain revealed Kidney Cancer.

So now I have stage IV cancer (it's spread to my lungs, bones, brain, and probably my liver), the prognosis sucks, and I'm trying everything I can to figure out how to fix it. I started emailing friends and family to give them an idea what I'm up to as a more efficient process than answering 400+ individual emails and phone calls. Since people are coming into the group at different stages; I started this journal so those interested can read all about it from the beginning.

Lance Armstong says when it comes to cancer; education is power and attitude is everything. I'm trying to share my journey so others can see the value in a positive and proactive approach to their well being.

http://johns_journey.livejournal.com

 

Take care,

John