Leiomyosarcoma survivor Ilene Goodman recently provided the following update to her patient success story:
I am happy to say that I continue to do wonderfully. I return to the doctor once a year for a CT scan or an MRI. I recently had my one-year check-up and am happy to report that I am now going on 15 years since my original diagnosis and 12 years in remission. If there is one thing I would say to any newly diagnosed cancer patient, it is to never give up hope. Hope is what got me through both diagnoses, along with support from my family and friends -- and faith that everything would be okay. The rare cancer I had was supposed to end my life twice, but it didn't. I am living proof that miracles do happen. Cancer does not have to mean a death sentence.
Pregnant with her first child, 24-year-old Ilene Goodman was happily preparing for parenthood and looking forward to being a new mom. Around her seventh month, she began to be bothered by swelling in her feet and legs and difficulty breathing. Tests revealed a buildup of fluid around her heart, presumably from a viral infection. Doctors admitted her to the hospital, drained the fluid from around her heart, gave her medication and home she went to await the baby’s arrival.
One month later – in her eighth month of pregnancy – Goodman lost the baby. As it turned out, the baby she lost may have helped save her life.
Two weeks later, while still grieving and trying to recover physically from her loss, she began to experience severe breathing difficulty and a racing heart rate. She was rushed to the emergency room, where doctors decided to operate to insert a pericardial “window” to drain the fluid from around her heart. It was then that they discovered the cause of Goodman’s problems: a large tumor was encroaching on her heart.
Unable to see the entire tumor, doctors closed Goodman’s chest and ordered an MRI, which showed a massive tumor extending beyond her heart into her chest cavity. A second surgery was performed, but the tumor was found to be even larger than doctors had suspected, and it was growing into the blood vessels of her heart. They closed her chest again and started her on chemotherapy.
Goodman’s mother-in-law, Sonya Goodman, who has a background in the health care field, was on hand for each consultation with the medical team. She realized that her daughter-in-law’s condition was unique, and that she needed the most aggressive treatment possible. After meeting with tumor specialists at several large regional medical centers, the family decided to come to the University of Maryland Medical Center’s Greenebaum Cancer Center.
At UMGCC, Goodman’s oncologist explained that she had a very large, rare tumor known as a leiomyosarcoma, a type of tumor that begins in muscles in the trunk. Further diagnostic tests revealed that her heart wasn’t the only major organ being compromised. The tumor was growing from her diaphragm onto her liver as well. She would need to continue with chemotherapy in the hope that the tumor would shrink enough to be operable.
If all went well, her plan of treatment was to include chemotherapy for six months to shrink the tumor, surgery to remove as much of it as possible, and radiation to make sure any remaining cancer cells were destroyed. “From the very beginning, they had a concrete plan of action. That was very comforting,” says Goodman. “We never heard: ‘You have so many months to live.’”
The months that followed were a challenging time: six months of chemotherapy treatments, interspersed with hospital stays to treat infections that raged as her body’s defenses were weakened by the powerful drugs. She persevered, and eventually the tumor shrunk to half its original size, making surgery an option. Doctors explained the the risks and uncertainties of the extraordinary surgery that everyone hoped would save her life. Having already endured two major heart surgeries and chemotherapy, Goodman wasn’t about to give up. With no guarantees, but a lot of confidence in her team of physicians, she and her family decided to go for it.
Next came six weeks of rest, so that she could recover and regain her strength for the upcoming surgery. On November 16, 1995, a team of surgeons performed a 10-hour surgery to remove the tumor, along with part of Goodman’s liver, heart and diaphragm. To repair her diaphragm, doctors used a combination of Gortex and mesh where the tumor was removed. More chemotherapy treatments followed and another long period of recovery from the surgery.
The results were worth all of the struggle. Over the next three years, her three-month follow-up visits showed no apparent recurrence of the tumor.
Then suddenly, in September 1999, she began having pain in her chest. An MRI revealed that the tumor had recurred, again growing from her diaphragm, but now growing onto her breastbone. She was started on more chemotherapy to shrink the tumor in advance of yet another surgery. Since the tumor did not appear to involve her heart this time, doctors were also able to use radiation therapy to attack it.
“After all I’d been through, the radiation was a piece of cake,” says Goodman. Her only noticeable side effect was some minor irritation to the skin on her chest.
In March 1999, she underwent a 14-hour surgery to remove the tumor. Her entire diaphragm was removed this time, along with part of her breastbone. Doctors again used Gortex and Goodman’s own chest muscles – which were stretched in a criss-cross pattern – to fill the space where her breastbone had been.
Most of the tumor was removed, except for a small section attached to her vena cava, the main vein that returns blood to the heart. Doctors then inserted a catheter into her chest, which allowed them to deliver radiation directly to the site of remaining tumor tissue.
Goodman now comes back to UMGCC for twice a year for follow-up visits, and has had no recurrence. She was so affected by the success of her treatment – “They saved my life twice!” – that she wanted to give something back to the hospital. She found a way to make a meaningful contribution by becoming a volunteer who meets with newly diagnosed cancer patients.
“One of the most amazingly helpful things that happened to me early on in my ordeal was a visit by a nurse who was a three-year breast cancer survivor. It was a very dark time for me, but seeing her and hearing her story gave me hope,” says Goodman. “I thought, ‘Here’s someone who has been on the other side and survived.’ If I can share my story with other people, they can see that there is hope for people with cancer.” The two developed a special relationship throughout Goodman’s treatment.
“I can’t say enough good things about the care I’ve received here,” says Goodman, who marked her five-year post-cancer milestone in March 2004. “Everyone has been awesome, from the front desk clerk to the nurses, to the social worker, to all of my doctors. They treat you like a whole person, not just as a patient.”