Sue Stein

Sue Stein believes everything happens for a reason, including her seven year battle with cancer and the stem cell transplant that helped her win.

In November 1998, Sue Stein was busy preparing for her daughter Sarah's wedding. In addition to the food, the flowers, and a million other details, "I had ordered a dress," Sue recalls, "but it fit kind of weird, because a bulge had formed on the left side of my stomach." Sue didn't know what was causing the bulge, but had no time to deal with it. "There were too many things to do for the wedding! So I had the dress altered to fit."

The wedding went off without a hitch. But during a trip to Florida a few months later, Sue's legs became so swollen she couldn't put her shoes on, and her skin became so dry and itchy, she scratched it until it bled. Of special concern was the growing bulge on the side of Sue's abdomen.

As soon as she returned to her home in Soldotna, Alaska, Sue went to the doctor. The abdominal bulge, ultimately determined to be her spleen, had grown to the size of a football — frighteningly large on anyone, but especially overwhelming on Sue's petite 5'4", 105 pound frame. Within hours, Sue was diagnosed with non-Hodgkin lymphoma.

"My husband George and I just sat there and looked at each other and wondered, 'Why? How?'" Sue recalls. "I mean, I was only 41 years old, and I lead a fairly healthy life. We just couldn't figure out why this was happening."

Non-Hodgkin lymphoma is a cancer of the lymphatic system, the body's disease-fighting network which includes the lymph nodes, spleen, thymus gland, and bone marrow. Non-Hodgkin lymphoma is one of the most rapidly increasing types of cancer in the United States. In non-Hodgkin lymphoma, tumors develop from white blood cells and can occur at different locations throughout the body.

Early stages of lymphoma may have symptoms including swollen but painless lymph nodes in the neck, armpit, or groin areas; flu-like symptoms such as fever, night sweats and fatigue; or as in Sue's case, abdominal pain or swelling.

"I said to George, 'What do we do now? What's the next step?'" Sue recalls. "And he looked me straight in the eye and said, 'We will do what we have to do. We will take it one step at a time.' That one statement kept me going through this entire ordeal."

What to do next

Treatment for lymphoma varies depending on the type and stage of the disease as well as the patient's overall physical condition. Sue traveled frequently from her Alaskan home to seek medical care in Seattle. Doctors removed Sue's spleen, and the cancer seemed go into remission. But soon lumps began appearing in Sue's groin area. Instead of continuing treatment in Seattle, Sue decided, "I want to be near my kids." Both daughter Sarah and son Greg were living in Phoenix at the time. So Sue asked her local doctor to refer her to physicians at Mayo Clinic in Arizona.

Dr. Craig Reeder in Mayo Clinic's Division of Hematology/Oncology headed Sue's lymphoma treatment team, assisted by Kristen Dial, P.A. "I have to tell you," Sue says, "I just knew that Mayo was where I needed to be. This was going to be the place to take care of me. Everyone was so understanding and compassionate. I don't know what I would have done without them." Lymphomas tend to be sensitive to chemotherapy, so Dr. Reeder prescribed several rounds and coordinated care with providers near Sue's home in Alaska. However, within two years, the cancer recurred again. "I found a lump under my arm, and little ones in my groin," Sue recalls. "So I went back to Mayo to discuss what to do next."

If lymphoma recurs, higher doses of chemotherapy may be necessary to treat the disease. However, the amount of chemotherapy that can be given is generally limited because of the damage it can cause to the patient's bone marrow. To help negate this serious side effect, Dr. Reeder recommended that Sue receive an allogeneic stem cell transplant, and expanded Sue's treatment team to include Dr. James Slack in Mayo's Division of Hematology/Oncology/Bone Marrow Transplant.

Allogeneic stem cell transplantation uses healthy stem cells (developing cells capable of producing new cells) from a donor to rebuild the patient's own stem cell supply. Dr. Slack explains: "First, donors are evaluated for compatibility and to make sure they are healthy and don't pose an unacceptable risk of infection to the patient. Next, the patient receives high doses of chemotherapy and/or radiation therapy to kill any remaining cancer cells and also to suppress the immune system to prevent rejection of donor cells. Finally, the donor's blood is drawn and the stem cells are removed, and the blood is returned to the donor's body. The healthy donor stem cells are then transfused into the patient where they help to rebuild the immune system."

"Isn't there anything else we can do?" Sue asked. But she recalls, "They looked me straight in the eye and said, 'Our recommendation is that you have a transplant.' And George and I decided then and there that's what we would do."

A matter of saving her life

Both of Sue's siblings were tested for donor compatibility. "My brother, Russ, was a near match — good news in and of itself," Sue recalls. "But my sister Christine was a perfect match — as close as we could be without being identical twins. It was amazing."

Christine says, "There was no question that I would donate, despite the uncertainty of what I was getting into. There was no thought process to it. Sue's my baby sister. I want to protect her. And it was a matter of saving her life." Mayo Clinic staff called Christine at her home in San Diego and educated her as to what the transplant process would involve.

"When we first arrived in Phoenix for the transplant, there were some delays," Sue recalls. Christine had contracted a viral infection while traveling, and doctors needed to get it under control before the transplant could take place.

"It could have been frustrating," Christine says, "because we were on a mission — we had a purpose and a plan. But instead, we made it like a family vacation. Everyone was there — even my brand new grandchild. It was a very special time for all of us to be together."

"We laughed, we played," Sue adds, "and we tried not to focus on what was ahead."

Finally, hope

"The day you arrive at the hospital to check in for transplant can be pretty intimidating," Sue says. "But Mayo staff was right there to explain everything and offer encouragement — over and over again. The nurse sat on my bed hugging me and telling me everything was okay. I still get a lump in my throat thinking about it."

Both Sue and Christine underwent a number of blood tests and preparatory procedures prior to the transplant. Among other things, Christine received medication to increase the number of stem cells her body produced, making more cells available for physicians to harvest.

When the day of the transplant arrived, doctors drew blood from Christine's arm and used a special machine to separate stem cells from mature cells. "It took quite a while," Christine recalls, "but it was a lot easier than I thought it was going to be." Then, during a procedure similar to a blood transfusion, Christine's stem cells were transfused into Sue's body, where hopefully they would grow and reproduce to help to rebuild her immune system.

"During the harvest process," Christine recalls, "the only thing on my mind was that I could not be with my sister. Because she had gone through heavy doses of chemotherapy and had no immune system, she was already in isolation and unable to leave her room. It was such a relief following transplant to learn that the cells were good, that Sue's body didn't reject them, and that we finally could hope that she'd be cured."

Sue's transplant was performed November 6, 2003 at Mayo Clinic Hospital. Her body soon began producing healthy white blood cells and platelets — indicating the procedure was a success — and she was discharged three weeks later, the day before Thanksgiving.

Everything for a reason

Sue returns to Mayo Clinic on a regular basis for follow-up evaluations to monitor the transplant's success. "Her outlook is good," says Dr. Slack. "Most people, if they are going to recur, will do so in the first three years. But Sue has no signs of recurrence. She's made it through the high risk period, so we're optimistic. She's done extremely well."

"You can't go through something like this and not have it change your life," Sue says. "Most people appreciate their life. But when you're sick like I was, you know in your heart that life can end at any moment. So you learn to appreciate life in a different way.

"I don't ever want to have cancer again, but I would never change my journey because I have learned so much about myself and life," Sue continues. "I have always believed that things happen for a reason. I believe there was a reason why I got cancer and why I had a transplant at Mayo Clinic. Part of that reason is to inspire other people to be treated there, too."