Susan's Story

Susan Theresa Fazio

Susan lost her 5 month battle with mucosal melanoma on December 22, 2005 at the young age of 55. Mucosal Melanoma is an extremely rare, but aggressive and deadly disease. Only 1 in 25 million people are diagnosed with this form of melanoma each year. However, cutaneous melanoma is the fastest growing cancer in the US and can be just as fatal. Both types of melanoma seem to metastasize in the same way; to the lungs, liver, bones, and brain. Once the cancer has spread, survival rates are very low.

Susan's husband, sons and daughter founded the Susan Fazio Foundation for Melanoma Research in her honor to raise funds to help increase awareness and eventually find a cure for this horrible disease. There have been no major medical advances in treating metastatic melanoma in the last 30 years.

The Susan Fazio Foundation has invested over $275,000 in melanoma research since inception in January 2006. For more information on these grants, please click here. Thank you to everyone who has contributed to making this cause such a success.

Mucosal Melanoma: Susan's Story

Susan was diagnosed with mucosal melanoma in July 2005.

It all started with a stuffy nose. Susan was congested for a couple of weeks, but didn't think much of it as she was always catching colds from her two young granddaughters. When it became more serious, and Susan was having trouble breathing at night, she made an appointment to see her doctor. She was misdiagnosed with a sinus infection and was given antibiotics. The antibiotic regimen was supposed to last for a few weeks, but after a few days and no relief, Susan went to see an Ear Nose and Throat specialist. An X-ray was taken of Susan's head and it showed total blockage of her left maxillary sinus. Again, Susan was misdiagnosed with benign polyps and was scheduled for an outpatient surgery to have them removed. While in surgery, the ENT surgeon found that there was "polyp after polyp after polyp". Susan was sent home after and scheduled back in a couple of days for a follow up. On July 21, 2005, Susan went back to her ENT when he told her that the tissue that was removed was suspicious and had been sent to pathology. The tissue was cancerous, and it was an extremely rare cancer, affecting only 1 in 25 million people annually, mucosal melanoma.

We were all shocked to learn that it was possible to get a melanoma on a part of the body that never saw the sun. But, melanoma can occur on any skin surface or mucous membrane. To us, melanoma was "just skin cancer" and very curable. After all, how could cancer of the skin be deadly? Surely, it could just be removed and we all go on with our lives as it was. Since we had heard "melanoma" in our mother's diagnosis, we initially thought the same thing. Surely, they can just remove this tumor inside Mom's sinus and she'll be fine. But, of course whenever you hear the "C" word, there is fear and we just didn't know enough. It wasn't until we read copious amounts of information on melanoma on the internet that we realized how serious and grim this situation was. There was very little data on mucosal melanoma as it is so rare and so poorly understood. But what we did find out is that melanoma was much more deadly than we had ever thought. If the cancer spread to the other organs, the prognosis for survival was very bleak. We were all terrified.

Susan was referred to doctors at the University of Pennsylvania Hospital in Philadelphia and Sloan-Kettering Memorial Hospital in New York. The first step in her treatment was going to be surgery and we were determined to find the best surgeons possible. Neither the ENT surgeons at HUP or Sloan-Kettering had seen a lot of these cases, but they were the best in their field and knew that whichever one we chose would be a good choice. Susan was sent for more and more tests in the next couple of weeks. Both surgeons needed to know if the cancer had already spread to the lymph nodes or to any other part of the body before they would meet with us. Further CAT scans of her head and neck, full body PET scans, and MRIs were all scheduled. Results of the tests were coming back, and with each one, we felt some relief. All the scans were clear; the cancer was still localized to the maxillary sinus. She had a chance to beat this! Susan picked to have her surgery and treatment at HUP since it was so close to home and she had felt confident in the team that she met there.

Surgery was scheduled for August 11, 2005. The doctors had warned about the risks of the surgery. They wouldn't be sure until they operated how extensive the surgery would be, but they knew it would be radical. There was a good chance that they would have to remove the upper jaw and palate on the left side of our mother's face. She would lose her cheekbone, her orbital bone, and there was a 50/50 chance she would lose her left eye. She would be in surgery for up to 18 hours. Susan, of course, was terrified. But being the light-hearted person she was, she was able to make jokes about it, stating that now she'd have an excuse for her terrible golf game.

When surgery day came, we were all on edge. Susan couldn't wait to get it over with and get this cancer out of her body. Surgery began at about 10:00 am. There was nothing for her family to do but sit and wait. At about 5:00 or so in the evening, one of the surgeons came out to give us an update. The surgery was going "better than they had anticipated". They were able to remove the entire tumor, they only had to remove ¼ of the upper palate and two teeth, and they saved Susan's eye. We all cried with relief. It would still be hours before she was out of the OR. Another surgeon was taking over to reconstruct Susan's face. It was after midnight before Susan was out of surgery, but she was going to be okay.

Susan recovered faster and better than anyone had expected. Susan was an extremely competitive person and approached recovery in the same way as she did everything else in her life - she was going to do it best! Within two weeks, she was out shopping at the mall with her daughter. Within four weeks, she was back at work. The surgery had left Susan's beautiful face scarred and slightly disfigured, but she didn't let that stop her from getting on with her life. She was an inspiration to us all. But unfortunately, it wasn't over yet. And none of us knew that the worst of it was still yet to come.

Even though the surgeons had been able to remove all of the cancer during the surgery and there was no evidence of melanoma in the lymph nodes, they still recommended a course of radiation treatment to the site of the tumor. The reason for this is because melanomas tend to have microscopic cells that float around that are undetectable and they wanted to be sure that they gave Susan the best possible chance to survive this. Susan had to have radiation every day for 24 minutes a day for six weeks. The radiation oncologist warned of the side effects - loss of taste, dry mouth, ulcers and burns in the mouth, a "sunburn" on the skin, damage to teeth, possible loss of hearing. But if this was what Susan needed to do, she was doing it. Along with the radiation, Susan was to take a chemotherapy drug at night called Temodar. Temodar is typically used for brain tumors but is one of the drugs that can cross the blood-brain barrier. This was going to make the radiation more effective and hopefully attack any melanoma cells that were floating around in Susan's system.

The radiation was brutal. By the third week of the treatment, Susan's mouth was covered in blisters and she had completely lost her sense of taste, making it nearly impossible for her to eat. The radiation also burned her nasal passages, swelling them and making it difficult to breathe. It wore her body down and Susan caught pneumonia, making her feel even worse. But she still got herself up every morning, put on her gorgeous clothes, and faced the rush-hour traffic on the Schuylkill Expressway to get her daily dose of this torture.

There was finally an end in sight. Two treatments left and counting. Susan woke up on the Sunday before she was supposed to finish her treatment complaining of abdominal pain. It only hurt when she moved, so we were all sure that it had to be muscular. Susan was always lifting up her little grandchildren and with her body in such a weakened state; she could have easily just pulled a stomach muscle. At least we hoped that was all this was. The next day was her second to last radiation treatment so we planned on asking the doctor when we met with him. He examined Susan and decided to send her for tests to make sure it was nothing more serious. A CAT scan of Susan's abdomen was scheduled for Wednesday, November 30th, the day after the final radiation treatment. When the results came back, our very worst fears had been confirmed; the cancer had spread to Susan's liver, lungs, and spine.

Susan didn't let this information get to her too much until she met with her oncologist to find out what it all meant. The appointment was scheduled for Friday, December 1st. The oncologist explained that the liver tumor was the most serious of the three sites and was already quite large, about 3 inches in diameter. It was in a place where surgery was ruled out. The only chance left was to participate in a clinical trial run by Susan's oncologist, BAY 43-9006 (Sorafenib) and Temodar. If these drugs worked, it could shrink the tumors and give Susan at least a few more good months. If not, the doctor said Susan only had three months to live.

A couple of days later, Susan ended up in the hospital with a high fever caused by an infection. She was in the hospital for five days. Susan said the hospital was always the "worst place to be when you are sick" because you are constantly having your sleep interrupted by doctors and nurses poking and prodding you. On December 7th, Susan came home. Our goal over the next weeks was to get Susan's strength up so that she could take part in the clinical trial. This trial was our last hope.

Unfortunately, Susan never had the chance to participate in the trial. Over the next week, her health deteriorated rapidly. Susan wasn't able to keep any food down and she found it difficult to do anything but rest. It was obvious to her and to her family that she was only getting worse by the day. On Thursday, December 15th, Susan met with the oncologist again. Susan's blood was taken and the tests revealed that her liver function was too low to take part in this trial.

Susan was admitted into hospice care on Friday, December 16th. She slipped into a coma on Sunday, and passed away peacefully in her sleep early on Thursday morning next to her loving husband, three days before Christmas.

Our Mission

The mission of the Susan Fazio Foundation for Melanoma Research is to raise funds to support research and increase awareness of Metastatic Melanoma and Mucosal Melanoma.

Be Aware!

Melanoma strikes adults and children, all races, all economic levels, both sexes. Scientists believe that most melanomas are caused by exposure to UV light and sunlight. While the most dangerous of all skin cancers, melanoma can be cured if detected early. All people, but especially men over 50 and young women, should check all areas of their skin, including skin not exposed to the sun, looking for new moles or moles that have changed in color, size or shape. It is advisable for everyone to see a dermatologist at least once a year, especially if you have fair complexion, burn in the sun or if melanoma is in your family. The best way to prevent melanoma is to protect yourself from the sun

How?

Wear sun-protective clothing and a hat.
Avoid excessive sun exposure and sun burning.
Avoid sun tanning.
Apply sunscreen with high SPF.