WHAT WOULD I DO TO SAVE MYSELF
I find the topic of researching one’s own treatment for a rare form of cancer as was done by James “Rhio” O’Connor, a daunting thought. I have chosen a cancer that a friend of mine is dealing with, Vaginal cancer. In the case of my friend, she has been diagnosed with the rarest form; sarcoma. Vagina sarcomas occur in only 2 to 3% of the patients diagnosed with vaginal cancer. Sarcoma’s normally are found in the bone, muscle or connective tissue. The danger of vaginal sarcoma is that it forms deep within the wall of the vagina and not on the surface making it more difficult to diagnose and treat. For the purpose of this discussion we will assume leiomyosarcomas as the type of cancer that has presented.
Leiomyosarcomas is a muscular tumor in that it is found within the muscular structure of the walls of the vagina. Doctors who treat this form of cancer recommend the first course of treatment be to find an oncologist who deals with sarcomas to ensure that the diagnosis is sound. That would be my first course of action; after, I am sure, falling into a state of shock. I know it would be necessary to have a local oncologist who would carry out any treatment plan set up by the sarcoma specialist. That would be my next step. Finding an oncologist locally, I would depend on “word of mouth” from my friends and family who have successfully battled cancer. Believe me, that is an ever growing number! I would probably need to see a surgeon as well, if surgery is an option. Once that doctor was found and the specialist had been seen, tests done and the cancer stage ascertained; research on the type of treatment recommended for my type of cancer would need to be studied. Recommendations from the doctors on my treatment team would of course be given serious consideration but never being a person to accept anything at face value; I know I would begin my own research.
I understand from information on some web sites dealing with cancer treatment, that cancer trials could be an option, especially if other standard treatments such as chemotherapy and radiation prove unreliable. Most of those trials demand that no previous treatments have been entered into before consideration of the patient for the trial. Given the virulent nature of many sarcomas delaying treatment could well prove fatal. The expediency needed in the researching of one’s treatment almost demands that most of that research be conducted on line. Web sites that deal with my particular diagnosis would be where I would look first; followed closely by the major medical site such as NIH and Mayo Clinic. My friend Diane was diagnosed with Pancreatic cancer. Local doctors gave her few treatment options and none seemed to promise success. Diane researched treatment centers dealing with Pacreatic cancer and found a clinical trial taking place in Texas. My friend got on a plane to Texas and got a space on a waiting list for that trial. After several months of treatment, she is now in remission and has returned to her job as a member of our faculty.
My friend Kathleen was diagnosed with stage 2 Breast cancer. Following the recommendation of her oncologist (whom she had found through recommendations of coworkers), she opted to undergo chemotherapy to kill the tumor followed by a double mastectomy, though cancer was only present in one breast at the time, then a course of radiation treatments. All proved successful and today, nearly 4 years later, Kathleen is still cancer free.
My friend Lois was diagnosed with stage 4 inoperable brain cancer. The oncologist Lois was assigned at the hospital where she was admitted after her first seizure, was the oncologist she used for treatment. As far as I am aware, Lois never researched other treatment options though Sylvester Cancer Institute in Miami is nationally renowned in cancer treatment. Nearly six months to the day of her diagnosis, Lois died in hospice, at the age of 49 years.
Another friend, Gwen, was diagnosed with stage four breast cancer and because of pre-existing medical conditions did not have many standard treatment options available. Gwen’s pace maker made it impossible to follow her mastectomy with radiation. Doctors feared that chemotherapy would stop her already damaged heart. I did some research and found a local oncologist who offered a laser treatment that focused on the cancer cells and left the surrounding tissue undamaged. I also tried unsuccessfully to get Gwen to come to Miami to Sylvester for a second opinion. Gwen opted to let the cancer take its course and in a few months the cancer reappeared in the chest wall. Four short months later it had spread to her lungs and then her brain.
While I cannot predict my reaction to a diagnosis of cancer and whether I would fight like my friends Diane and Kathleen or accept the first plan of attack as my other friends did; my hope is that I would be brave enough to make educated choices as to treatment; much like James O’Connor.