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MY LONG JOURNEY INTO FINDING A DIAGNOSIS AND TREATMENT OF MY CANCER
Hi, my name is Sarah Kuhl, I am 32 years old and work as a nurse in a breast oncology research facility in Asheville North Carolina. I am married to a social worker and have a ten year old daughter. My rare cancer journey started in October of 2015, when I was getting episodes of headaches and dizziness. A mass was discovered in my skull on the petrous apex of my temporal bone. The tumor is resting on my carotid artery, just millimeters away from my jugular vein, and facial and hearing nerves. At first, the tumor was thought to be bone metastasis, but that was ruled out and soon the doctors suspected this was a chondrosarcoma based on the images and the destruction to the surrounding bone. Chondrosarcomas of the skull are extremely rare cancers occurring in only about 300 cases a year in the United States.
Hearing this suspected diagnosis was difficult and challenging for my family and me to digest, and know how to move forward. What made this news even more challenging was that the doctors could not tell me for sure what this tumor is, and that surgery was so risky and dangerous, it would be very difficult to obtain pathology to determine what the tumor is so that we would know how to treat it. In an effort to get a diagnosis, I traveled to Johns Hopkins in Baltimore and MD Anderson Cancer Center in Houston. The consensus of the surgeon and the tumor review board at Johns Hopkins was that it was urgent and essential for me to have surgery in order to obtain a sample for pathology so we would have a diagnosis and know how to treat this cancer. The surgeon at Johns Hopkins He assured my family and me that he had performed these kinds of surgeries successfully in the past.
After an 8 hour surgery in March, 2016, in which I developed a severe ulcer on my right ear, and I had to retrain my brain to be able to walk again, since my vestibular system was affected by the surgery, we found out that the surgeon did not obtain tissue samples from the tumor, and we still did not have a diagnosis. Unfortunately this major and dangerous surgery was unsuccessful and the surgeon recommended that after the swelling in my skull subsided and there was adequate healing, I have another surgery to try again to obtain pathology. He assured me he would do things differently this next time in order to obtain a tissue sample.
I traveled to Duke University in Durham, N.C. and had a consultation with the sarcoma team there. I was informed that their surgeons could perform the surgery by using a different approach rather than cutting open my skull again. This team of doctors was experienced in going through the nose to obtain the necessary tissue for pathology. This surgery occurred in August. The surgery went well but, I did have some post-op complications. Such as, a numb and tingling palate, intense headaches, severe nausea, and an impaired sense of smell and taste. Thankfully, the headaches and nausea are significantly better and less frequent. I am still experiencing the numbness and tingling in my palate, and altered sense of smell and taste. The pathology obtained during this surgery confirmed that the tumor is a Grade II chondrosarcoma.
After 10 months of countless imaging tests, traveling to cancer center hospitals, seeing many specialists, and enduring 2 major surgeries and recoveries, we finally have a diagnosis. The next step is what kind of treatment is possible to remove or eradicate the remainder of this tumor in my skull. Chondrosarcomas do not typically respond to standard chemotherapy or radiation. There is alternative form of radiation therapy called proton beam radiation therapy. Proton beam radiation is different than standard radiation, which uses photons, because it allows the doctors to deliver a higher dose of radiation to a more precise location without causing significant damage to the surrounding structures. A small amount of published information on proton beam radiation therapy shows it can be effective in treating chondrosarcomas. Because of the very rare location of my tumor, I am the first patient the Duke sarcoma team has referred for proton beam radiation. Of the 26 centers that offer proton beam radiation therapy, Massachusetts General in Boston has the most experience with chondrosarcomas, including ones of the skull base. The sarcoma team at Duke felt it was imperative to a life lengthening prognosis that I receive radiation treatment at Mass General in Boston. The doctors explained that radiation is the only option I have since surgery is too dangerous because of the rare location of my tumor.
I am asking for your financial help so that I may receive this therapy I desperately need in order to live a normal life. I have asked my doctors how long I have, and if I can live a normal life. They don’t have a definite answer but tell me that I could live 6 months, 6 years, or maybe 16 years. They can’t predict how fast my tumor will grow and destroy the surrounding bone.
Last year, my husband and I had to come up with $10,000 out of pocket before I could have the surgery and related medical expenses last year. We raised that money with a Go Fund Me account. I have a $10,000 deductible and I will have to come up with another $10,000 in order to receive the radiation treatment I need. Because of my medical condition I was unable to work most of the year, and we have been on one income. We have depleted our savings and our credit cards are maxed out. The travel, lodging and other related expenses added a huge amount to the required $10,000.
I have a 10 year old daughter, Emily, and without this radiation therapy, I will not be here to be a mother to my daughter, or a wife, or a sister, or a daughter, or a friend, or a compassionate and productive member of society. It is agony for me to know that Emily would not have her mother there as advocate and supporter to share all the wonderful events and joys life has to offer.
It is difficult to ask for this help, but I am willing to fight for my life. Life is a precious thing. Whatever you can do to support me and my family is profoundly appreciated.
For a more detailed account of my story you can go to the original Go Fund Me page here: https://www.gofundme.com/3whjwv3g?ssid=802984951&pos=1
With heartfelt gratitude,
Sarah Kuhl
Hi, my name is Sarah Kuhl, I am 32 years old and work as a nurse in a breast oncology research facility in Asheville North Carolina. I am married to a social worker and have a ten year old daughter. My rare cancer journey started in October of 2015, when I was getting episodes of headaches and dizziness. A mass was discovered in my skull on the petrous apex of my temporal bone. The tumor is resting on my carotid artery, just millimeters away from my jugular vein, and facial and hearing nerves. At first, the tumor was thought to be bone metastasis, but that was ruled out and soon the doctors suspected this was a chondrosarcoma based on the images and the destruction to the surrounding bone. Chondrosarcomas of the skull are extremely rare cancers occurring in only about 300 cases a year in the United States.
Hearing this suspected diagnosis was difficult and challenging for my family and me to digest, and know how to move forward. What made this news even more challenging was that the doctors could not tell me for sure what this tumor is, and that surgery was so risky and dangerous, it would be very difficult to obtain pathology to determine what the tumor is so that we would know how to treat it. In an effort to get a diagnosis, I traveled to Johns Hopkins in Baltimore and MD Anderson Cancer Center in Houston. The consensus of the surgeon and the tumor review board at Johns Hopkins was that it was urgent and essential for me to have surgery in order to obtain a sample for pathology so we would have a diagnosis and know how to treat this cancer. The surgeon at Johns Hopkins He assured my family and me that he had performed these kinds of surgeries successfully in the past.
After an 8 hour surgery in March, 2016, in which I developed a severe ulcer on my right ear, and I had to retrain my brain to be able to walk again, since my vestibular system was affected by the surgery, we found out that the surgeon did not obtain tissue samples from the tumor, and we still did not have a diagnosis. Unfortunately this major and dangerous surgery was unsuccessful and the surgeon recommended that after the swelling in my skull subsided and there was adequate healing, I have another surgery to try again to obtain pathology. He assured me he would do things differently this next time in order to obtain a tissue sample.
I traveled to Duke University in Durham, N.C. and had a consultation with the sarcoma team there. I was informed that their surgeons could perform the surgery by using a different approach rather than cutting open my skull again. This team of doctors was experienced in going through the nose to obtain the necessary tissue for pathology. This surgery occurred in August. The surgery went well but, I did have some post-op complications. Such as, a numb and tingling palate, intense headaches, severe nausea, and an impaired sense of smell and taste. Thankfully, the headaches and nausea are significantly better and less frequent. I am still experiencing the numbness and tingling in my palate, and altered sense of smell and taste. The pathology obtained during this surgery confirmed that the tumor is a Grade II chondrosarcoma.
After 10 months of countless imaging tests, traveling to cancer center hospitals, seeing many specialists, and enduring 2 major surgeries and recoveries, we finally have a diagnosis. The next step is what kind of treatment is possible to remove or eradicate the remainder of this tumor in my skull. Chondrosarcomas do not typically respond to standard chemotherapy or radiation. There is alternative form of radiation therapy called proton beam radiation therapy. Proton beam radiation is different than standard radiation, which uses photons, because it allows the doctors to deliver a higher dose of radiation to a more precise location without causing significant damage to the surrounding structures. A small amount of published information on proton beam radiation therapy shows it can be effective in treating chondrosarcomas. Because of the very rare location of my tumor, I am the first patient the Duke sarcoma team has referred for proton beam radiation. Of the 26 centers that offer proton beam radiation therapy, Massachusetts General in Boston has the most experience with chondrosarcomas, including ones of the skull base. The sarcoma team at Duke felt it was imperative to a life lengthening prognosis that I receive radiation treatment at Mass General in Boston. The doctors explained that radiation is the only option I have since surgery is too dangerous because of the rare location of my tumor.
I am asking for your financial help so that I may receive this therapy I desperately need in order to live a normal life. I have asked my doctors how long I have, and if I can live a normal life. They don’t have a definite answer but tell me that I could live 6 months, 6 years, or maybe 16 years. They can’t predict how fast my tumor will grow and destroy the surrounding bone.
Last year, my husband and I had to come up with $10,000 out of pocket before I could have the surgery and related medical expenses last year. We raised that money with a Go Fund Me account. I have a $10,000 deductible and I will have to come up with another $10,000 in order to receive the radiation treatment I need. Because of my medical condition I was unable to work most of the year, and we have been on one income. We have depleted our savings and our credit cards are maxed out. The travel, lodging and other related expenses added a huge amount to the required $10,000.
I have a 10 year old daughter, Emily, and without this radiation therapy, I will not be here to be a mother to my daughter, or a wife, or a sister, or a daughter, or a friend, or a compassionate and productive member of society. It is agony for me to know that Emily would not have her mother there as advocate and supporter to share all the wonderful events and joys life has to offer.
It is difficult to ask for this help, but I am willing to fight for my life. Life is a precious thing. Whatever you can do to support me and my family is profoundly appreciated.
For a more detailed account of my story you can go to the original Go Fund Me page here: https://www.gofundme.com/3whjwv3g?ssid=802984951&pos=1
With heartfelt gratitude,
Sarah Kuhl
Organizer
Sarah Kuhl
Organizer
Asheville, NC