Carol Young

One Patient’s Perspective— Deciding What Treatment is Right for You

Saturday May 20th, our speaker was Carol Young who told of her 13 year journey with carcinoid. The title of her talk was “One Patient’s Perspective—Deciding What Treatment is Right for You”. Carol’s journey illustrates the varied personal decisions we all make as we live with this disease.

Not only does Carol have carcinoid but she also has fibromyalgia, a disabling neuromuscular disease, diagnosed in 1995, which forced her to stop working as a senior financial analyst in the aerospace industry. Her symptoms which began in 1993 were attributed to fibromyalgia and menopause and may have delayed a diagnosis of carcinoid cancer. Carol had a very poor quality of life from 1994 until 2000… a period she calls “the lost years”.

In 1997 a 3.4 cm tumor was discovered in Carol’s terminal ileum during emergency surgery for a bowel obstruction. A right hemicolectomy was performed and pathology reported the tumor was “typical” carcinoid. The tumor had metastasized to her lymph system and she had many relatively small tumors in both lobes of her liver. After suffering for four years, she finally had an answer. There was very little information available when she was diagnosed in 1997. It was several years before Carol met two other carcinoid patients and co-founded the South Bay Carcinoid Support Group.

In 2000 she was diagnosed with carcinoid syndrome and started treatment with Sandostatin LAR (leading up to a dose of 30 mg every two weeks and Sub Q as needed—lately 300 mcg once a day). On this regimen her symptoms greatly improved and her tumors remained relatively stable for many years.

Since her diagnosis, she has done extensive research, talked to numerous carcinoid doctors and other carcinoid patients. She regularly attends carcinoid conferences and support group meetings. This has helped her weigh her treatment options and possible outcomes. She has watched many people go through different treatments with varying outcomes.

Carol’s family and friends have always provided very strong support and are welcome distraction from carcinoid issues. She credits her productive life to the love and extraordinary support she receives from her husband, Ed. Her grown children and her ninety year old mother are also a source of great comfort and support. When first diagnosed in 1997, she was given little hope of surviving five years. The births of her five grandchildren, beginning in 2000, have each been a source of inspiration and motivation for her. She sees her participation in each birth as a significant accomplishment and a landmark of her longevity…nine years since diagnosis. The “quality of life” issue is a major deciding factor in Carol’s decision making process.

She discussed in detail the nutritional supplements and vitamins she takes and why a carcinoid patient might want to consider them as part of their treatment regimen. This subject caused a lively discussion. Carol discussed the detailed one page form she created to list her medications, supplements, treatments, diagnoses, and doctors. It also includes an alert notice regarding the negative effects of epinephrine, information regarding use of Sandostatin prior to and during medical procedures, and information regarding treatment recommendations in case of Carcinoid Crisis. Carol handed out a sample of this format to the attendees and they felt it was very useful.

Carol is an advocate of complimentary therapies which support her body’s ability to survive. These therapies reduce stress and help boost her immune system. She uses acupuncture to improve various symptoms such as digestive issues, pain, sleep issues, low energy and stamina, mental focus, etc. She also finds that reiki, an ancient Japanese healing therapy, offered at her local Wellness Community is beneficial for her overall wellbeing.

Carol showed a graph of her tumors and their markers (CGA and serum serotonin) showing slow stable growth since 2001. Her tumors had been growing at a relatively slow rate up until recently. But in October 2005 her tumors and markers have risen substantially. She plans to make a decision on what course of action is best for her and her tumors now.

• Get educated about carcinoid—learn the pros and cons of potential treatment options. Knowledge gives you more control and confidence about your decisions.
• Consider carefully the potential impact your treatment decisions will have on the duration and quality of your life.
• Consult several of the experienced Carcinoid doctors for their opinion—they don’t necessarily agree.
• Consider carefully the doctors and hospital you choose. They have different levels of knowledge and experience. They are not all created equal and you can have extremely different results.
• Seek support from a variety of sources including local support groups and an online group such as the Yahoo Carcinoid group.
• Speak with other patients who have personal experience with the treatment you may be considering.
• Have faith in the doctor and hospital you choose.
• Be optimistic.

Download Carol's supplement spreadsheet here.