Rare Cancer Success Stories

The last thing you want to think about when you are 13 years of age is dying of cancer. You have your youth, good looks, friends and hopefully your health. But at age 13 I didn't think there was anything unusual about having a small red bump in the skin over my right shoulder blade. I thought it might have been an infected bug bite but when it continued to grow I showed her to my parents who took me to a dermatologist to get an opinion. He did a biopsy and when it came back he referred us to North Shore University Hospital where we were told that the tumor was a rhabdomyosarcoma.

Because of my age we were referred to the head of pediatric orthopedic oncology at Memorial Sloan-Kettering Cancer Center. My father had met the wife and daughter of Dr. William Grace earlier in the week who had suggested that we get a consultation with him despite the fact that he was not a pediatric oncologist. We went to Memorial Sloan-Kettering where we were told that this cancer was very aggressive and would have to be treated by radical surgery and chemotherapy. They recommended that the skin over the scapular would have to be removed along with the scapular bone, my right arm and my right collarbone which would include all the lymph nodes in that area. After that aggressive chemotherapy would be given in order to keep the cancer from returning. My parents and I were shell shocked!

With a heavy heart we went to see Dr. Grace some three hours later. After listening to my history, Dr. Grace examined me (this had not been done at the two prior hospital clinics at Memorial and North Shore Hospital) and he found a large swollen lymph node in my right neck and a larger lymph node under my right armpit. He told us that the radical surgery would not result in a cure or complete resection of all the disease and he requested that it be canceled. He recommended that the lymph node under my right armpit be removed and sent to Dr. Weisenthal and to the Armed Forces Institute of Pathology as he felt that the diagnosis should be questioned. I have this done and the Armed Forces Institute of Pathology returned a diagnosis of a rare granulosa cell sarcoma of which there were only 73 cases in the world literature and in which all of the patient's died of the disease and none responded to any chemotherapy. However, the specimen that was sent to Dr. Weisenthal revealed that it was sensitive to two drugs, one called bleomycin and the other called Doxil. It was resistant to every other chemotherapeutic agent tested.

I found that I was comfortable in the adolescent chemotherapy unit at Memorial Sloan-Kettering so than drugs that were recommended by Dr. Grace could be given there. However, the head of pediatric oncology at Memorial Sloan-Kettering Cancer Center refused to give me the drugs Dr. Grace recommended and would only give me the drugs in their sarcoma protocol. My family reluctantly agreed and I started chemotherapy and as Dr. Grace predicted, the lump in my neck only grew larger. My mother was an attorney and quite upset at the recalcitrance of the doctors at Memorial Sloan-Kettering and threatened to sue them if they did not give me the drugs that Dr. Grace recommended. They reluctantly complied and with the first course of chemotherapy the large lymph node in my right neck disappeared and I went into complete remission. With Dr. Grace's recommendation, I had radiation therapy to the lymph node chains in my right neck, right armpit and mediastinum. And, where am I today? I am in my third year medical school! There is nothing I can say except thank you Dr. Grace.

Elizabeth M.

I am not a healthy person! As I have grown older, I have gotten very big! I now have diabetes and asthma as a consequence of my poor choices. I especially paid for this in 2008 when I was admitted to St. Vincent's Hospital in New York City with an infection in a diabetic foot ulcer which had infected the bone. After six weeks of intravenous antibiotics the infection was not cured and I unfortunately had to undergo an amputation of my right foot to save my life. However, at the time of the operation a biopsy was performed on an ulcer that Dr. Grace had seen on my right temple and he had recommended the biopsy. The biopsy came back Merkel cell cancer. A plastic surgeon was called and I underwent wide excision with skin graft to remove the ulcer in my temple. I was discharged from the hospital with a prosthetic limb and antibiotics to take for weeks. Six months later however there was a swelling in my right jaw with several small pimples over the skin. Dr. Grace tell me that the cancer had relapsed and that a biopsy should be sent to Dr. Weisenthal as relapses would continue. I didn't want to complicate my already complicated life with chemotherapy but I consented to the biopsy. The large salivary gland lymph nodes on the right side of the neck were removed. As Dr. Grace predicted, six months later the lymph nodes in my right neck were swollen and a biopsy proven the cancer was back. I then consented to chemotherapy. Dr. Weisenthal's analysis stated that the most active drugs were oxaliplatin and Doxil. These were given to me at a schedule of twice a month oxaliplatin and once a month Doxil. Within the first two weeks all the cancer had disappeared and after four months of treatment I had completed the chemotherapy. My remission has lasted seven years!

Stephanie M.

In 1989, while pregnant with my first child, the last thing I thought I had to worry about was cancer. However, sonograms taken during the development of the pregnancy indicated that I had an additional mass in my pelvis besides my growing in utero daughter. The mass appeared to enlarge with my pregnancy as if it were a race to see which would develop faster: My daughter or this tumor? At the time of the necessary cesarean section delivery I was found to have a borderline low grade seromucinous carcinoma of the ovary. However, I was busy with my new baby and starting a family so I continued hoping that I would eventually cancer free.

However in 2002 I began to have pelvic pain and scans demonstrated that I had recurrent ovarian cancer. I underwent total abdominal hysterectomy and bilateral salpingo-oophorectomy to remove the cancer and received postoperatively carboplatinum and Taxol. Two years later however the cancer appeared in my liver as well as in the peritoneal cavity and I sought Dr. Grace's recommendation. He referred me to his liver surgeon who removed the cancer from the liver and from the rest of the peritoneal cavity and the tumor was sent to Dr. Weisenthal. Postoperatively I was treated with intravenous and intraperitoneal gemcitabine and cis-platinum every three weeks for six treatments and with carboplatinum and Taxol for two treatments. My CEA 125 was six. Since 2004 I had a number of relapses and remissions with five analyses from Dr. Weisenthal all of which appeared to give me complete remissions but not permanent remissions. Currently, Dr. Grace is treating me with Avastin and Opdivo and I am responding extremely well. Whenever I tell my friends and physicians that Dr. Grace has kept me alive with stage IV ovarian cancer for 14 years, they cannot believe it! Every day, I thank God for Dr. Grace.

C.F.

In 1978 I was a busy executive in New York City when I discovered a lump in my right breast. I went at Columbia Presbyterian where they performed a modified radical mastectomy which left me somewhat asymmetrical. In 1989, I developed a lump in my left breast which had metastasized to a axillary lymph node. I went to Dr. Grace who recommended a six drug chemotherapy regimen which get me alive and disease-free to the present time. In the fall of 2004 however I developed a pelvic mass and Dr. Grace arrange for me to have surgery for a fallopian tube cancer which had spread throughout my abdominal cavity. He arrange for the total abdominal hysterectomy and bilateral salpingo-oophorectomy and omentectomy. Tumor was sent to Dr. Weisenthal, a friend of his, who recommended adjuvant treatment. The surgeon placed a port in my chest wall which went to my peritoneal cavity and a port in my right atrium (the first chamber of my heart). I received Dr. Weisenthal's recommended gemcitabine and cis-platinum every three weeks given both intravenously and into the abdominal cavity. It was easier for me to get the intra-abdominal chemotherapy versus the somewhat more toxic intravenous chemotherapy as Dr. Grace used high volumes of sterile salt water, cortisone and lidocaine to reduce any risk of discomfort from the intraperitoneal administration of these medications. He assured me that with Dr. Weisenthal's recommendation given both intravenously and into the peritoneal cavity, the risk of relapse was extremely low. I see Dr. Grace regularly and I have not had any relapse. Dr. Grace and Dr. Weisenthal are marvelous team!

M.M.

I consider myself a rather lucky individual. I survival to Battle of the Bulge where most of my unit was killed by the German counter invasion courses and I survived with bullet wounds in my right leg. I was one of four of the 169 passengers on a commercial airliner flying into the Pittsburgh airport in bad weather, who survived the crash before the runway. As a consequence, I didn't think there was anything particularly threatening about an ulcer that appeared on my right scalp in 1996. My very persistent wife however dragged me to a dermatologist who biopsied the lesion and told me that this was a very serious Merkel cell cancer. We went to a plastic surgeon who did a wide removal of the skin on my scalp and closed the wound with a skin graft from my thigh. I was fine until a year later when I had a swelling in my right cheek and on returning to the same surgeon found that the cancer had returned. I underwent removal of my right major salivary gland along with some of the lymph nodes in front of my ear.

A year later in 1998, multiple small nodules appeared in the skin of my right neck and there were several swollen glands underneath them. The same surgeon then performed a radical neck dissection on my right side of my neck and afterwards I underwent radiation therapy. Again, one year later the lymph nodes on the left side of my neck became swollen and a biopsy determined that the cancer had returned. A CT scan demonstrated that the cancer involved not only the lymph nodes in my left neck but lymph nodes under the pectoral muscles of my arm and nodules were seen in my lungs. I went to Memorial Sloan-Kettering cancer Center where they tell me that treatment would only be palliative and so I was started on a chemotherapeutic regimen consisting of VP-16 and cis-platinum to which I did not respond. My son was a radiologist and he told me that the medical literature stated that this disease was not curable when it had metastasized as it had in my case. My doctors recommended hospice. My son however, had trained with Dr. Grace and thought I should get a second opinion with him. Dr. Grace recommended that some of the lymph nodes be sent to Dr. Larry Weisenthal for chemosensitivity testing. This was done and the results of the testing demonstrated that the cancer was resistant to most drugs except gemcitabine given with cis-platinum and a drug called Navelbine. Dr. Grace began the treatment with these three drugs and within five days all the swelling was gone. I was treated every three weeks for six months. I am now 89 years of age, retired to Florida and disease-free for 17 years! It is again, I am just a survivor!

Norman S.

I was just 16 years old in the spring of 1978 when I developed a cough and went to my local physician on Long Island. I was given antibiotics but when the cough did not improve a chest x-ray demonstrated that I had a large mass in the middle of my chest. I was sent to a surgeon at St. Vincent's Medical Center in New York City who felt that a biopsy would be necessary. I was placed under anesthesia and the chest surgeon performed a biopsy of my tumor but it immediately on taking the biopsy I started to bleed profusely from the wound. The surgeon called Dr. Grace for an emergency consultation into the operating room. Dr. Grace did an exam under the drapes for the open procedure in my chest and he felt a large right upper quadrant mass. He then made the diagnosis that I had the fifth case in the world of a complex of tumors in an adolescent female initially described just two weeks earlier by Dr. Aden Carney of the Mayo Clinic. Dr. Carney had described four cases of a complex of three separate tumors in young women which unfortunately were fatal in all the cases.

After the operation, a CAT scan revealed that I had a pulmonary chondroma in my left chest, mediastinal paraganglioma where the biopsy was performed (this is a malignancy of the arterial supply which is why the bleeding was so severe on biopsy) and the tumor that Dr. Grace could feel in my stomach in the left upper portion of my abdomen which was a leiomyoma blastoma or Gist sarcoma. He called Dr. Aden Carney to report the case and then recommended that the tumor in my stomach be reoved as soon as possible. Within a week I had the stomach tumor removed. I now had a paraganglioma that began to choke my airway but there was very little written on what medication would be successful treating this disease. I was started on Cytoxan, Adriamycin and 5-FU and radiation therapy to the tumor and concomitant radiation therapy but there was no response. I then was given cis-platinum, bleomycin and methotrexate with no response. The tumor now was letting very little air into my lungs. I was given the last rites of the Catholic Church and my sister, mother and father came to my death bed to be with me. Then Dr. Grace had an idea that he would give me extraordinarily high dose radiation to a small part of the tumor that exceeded the approved dosing along with a radiation sensitizing chemotherapy to see if this would cause the cancer of the blood vessels to clot and thereby with extension of the clot kill itself from the clot formation. This was given to me despite objections from clergy and hospice staff but it worked! The tumor began to shrink and within 3three weeks I was able to breathe normally. Dr. Grace published my case and name it Carney's Triad in honor of the physician Dr. Aden Carney who discovered it.

For the next twelve years I was a normal woman and able to go to college and get a job in Poland working for the Marriott Corporation. When I was in Poland I got a very bad cold and found that I was progressively unable to breathe. I went to the local hospital who said that there was nothing really wrong. I called Dr. Grace and when he heard my voice he demanded that get on the very next airplane with oxygen and the St. Vincent's mobile intensive care unit would meet the airplane. On arriving at John F. Kennedy international Airport the doctors immediately put me in an ambulance on oxygen at high doses. A CAT scan revealed that I had two quarts of pus in my left lung and was near death. Interventional radiologist placed two chest tubes in my chest to drain all the pus and antibiotics were given for ten days. At the end of this I was well and able to return to work in Poland. However five years later on a routine visit to Dr. Grace he determined that I had an enlarged liver and a CT scan demonstrated that I had a metastasis from my stomach to liver. He arrange for a liver surgeon to remove the tumor and I was able to return to work. A year later on routine CT scans another metastasis was found and resected as it was the only evidence of disease. My pulmonary chondroma was stable. A year after that a large hepatic metastasis was found on my routine CT scans and Dr. Grace arrange for a chemoembolization in which large doses of chemotherapy are placed with oil into the metastasis through the hepatic artery. The metastasis disappeared after two doses and never to return.

Six years later however on a routine scan I was found to have a new paraganglioma in my right atrium. Dr. Grace referred me to a famous surgeon at New York Hospital who specialized in removing tumors from hearts. During the surgery the tumor was removed from my right atrium, the right atrium rebuilt and they found hardening of the arteries from the radiation therapy given to me in 1978 and so I underwent triple coronary bypass surgery as well. For years later now living in South Carolina I found a three cm lump in my left breast which had metastasized to multiple axillary lymph nodes. Dr. Grace arrange Dr. Weisenthal to analyze my breast cancer for chemosensitivity. I was treated every two weeks forty months with Cytoxan and Taxotere. This was then followed by gemcitabine and cis-platinum every two weeks for two months. I knew that only 18% of patients responded to the standard therapies and then Dr. Weisenthal's analysis would improve to about 94%!

The absolute proof of the pudding is that I have not had a relapse of my breast cancer, despite its advanced status for nearly ten years. I developed another large metastasis from my leiomyoma blastoma in 2011 and I traveled to New York to have his liver surgeon remove the tumor to make me cancer free again. Dr. Grace told me that I was the first patient with Carney's Triad to live to childbearing age and to live long enough to get the more common cancers. I have to thank God for his incredible skill in keeping me alive for my husband and children.

Z.W.

In 1983, I was a young nurse practitioner with a very busy practice at a major Medical Center in New York City. Unfortunately I discovered a mass in my left breast which was unfortunately rather large and had spread to my axillary lymph nodes. I saw Dr. Grace after I had my left modified radical mastectomy. He gave me chemotherapy with a six drug regimen which, I tolerated well but it made me rather tired at work. I did everything I could to hide my bald head. I don't think anybody knew that I was getting chemotherapy. Two years later with regular screening by Dr. Grace I was diagnosed with a right breast cancer and had a right modified radical mastectomy which fortunately demonstrated a small tumor without axillary lymph node invasion. Dr. Grace felt he did not need chemotherapy. I regularly saw Dr. Grace and in the fall of 2003 he found a pelvic mass. He referred me to a gynecologic surgeon who discovered that I had stage III fallopian tube cancer. I knew the statistics for ovarian cancer and fallopian tube cancer which meant that only 19% would be disease-free in five years. Dr. Grace assured me that Dr. Weisenthal would likely find a regimen that would keep me disease-free for a much longer period of time. I underwent a total hysterectomy and removal of both ovaries and my omentum. The tumor was sent to Dr. Weisenthal and his analysis recommended that I was most sensitive to Cytoxan, cis-platinum and Adriamycin. I was given Doxil, Cytoxan and cis-platinum every 21-28 days depending on my blood counts. My CA 125 went from over 1000 to as low as five. I was well for the next nine years seen Dr. Grace every three months when all of a sudden my CA 125 went to 40 and Dr. Grace ordered a PET scan which demonstrated that my cancer had relapsed in a lymph node outside of the peritoneal cavity near my colon. He scheduled an operation and at the tumor removed and sent to Dr. Weisenthal feeling that this new cancer or relapse would have chemosensitivity very different from the prior cancer and it did! Dr. Grace gave me at adjunctive chemotherapy (the tumor was completely removed with part of the large bowel) with gemcitabine and cis-platinum for four doses and then with Navelbine, high dose tamoxifen and Iressa for four treatments. Although it was difficult, I worked as a nurse practitioner throughout my treatment. I have been disease-free for four years and have been reassured by Dr. Grace that the likelihood the cancer will come back is remote.

B.W.