I was ambivalent about sharing my story as I see so many others who have more struggles and issues as their diagnosis is more severe. But I realized one point of my story may benefit others is the journey of getting the diagnosis and the mishandling of my first surgery. This may help others seek the correct medical professionals as supported by this site and NCCN.org
Hello my name is Marcie Delgado. I currently live in Winter Springs, Fl (right outside Orlando). I am 46 yrs old (almost 47). Around 10 years ago I was training for a marathon. I noticed a lump on the anterior portion of my left thigh at very top of my thigh. It was not painful. It was soft except when I flexed my muscle. I went to an Orthopedist who recommended a MRI. I had one and was told it was a Lipoma. Well I believed them and did not worry at all about it being anything else. I am RN and previously worked for 10 years in Oncology. I felt no reason to doubt, probably because I was healthy and training for a Marathon plus had my last child who was still a baby. My focus was not health as I thought I was very healthy and had no concerns. The MD did offer to take it out if I wanted, or we could monitor it. He said if gets painful, harder or bigger to come back. I did not take it out as I usually scar badly, and it wasn’t bothering me. I ran 3 marathons since then and then even got into biking.
Over the next ten years it got bigger and harder, but it never bothered me. I had moved away from this area and to Southwest Florida. Well I moved back last year. As I said I am a RN. I was back at my hospital working and showed my nurse friends the “bump”. By this time it was becoming more noticeable and at times my clothes would be tight on that leg. Well from there continuous prompting, I had it looked at again. I went to a General surgeon who was well respected among nurses (see we are supposed to know who to go see and who not to; you know the inside scoop). He ordered another MRI. It came back as suspicious and gave me a possible diagnosis of MFH. Well that was the day my life changed.
This MD at least had enough experience and knew his limitations that he referred me to an Orthopedist who specialized in Oncology. Unfortunately the person he sent me to should not have treated me either. Before I went to him I inquired with a local Oncology group with which I have first-hand experience, and I respect. They supported me seeing him. It was in a large Ortho group – actually same group as the original Ortho 10 yrs ago. He scheduled an open biopsy. I had my surgery March 1, 2007. My post-op appointment was not until March 14th. He said it would take that long to get results; he lied. I found out the path came back in two days. Anyway long wait. But I still thought it was going to be nothing from what this Ortho had said pre-op. My husband did not even go with me to the visit due to kid issues, and I reinforced that I thought everything was going to be okay.
He told me I had Liposarcoma. Well trying to be the nurse and not the patient, I am trying to think what would make sense for course of treatment. He was looking at my film and seemed to be coming up with his plan for surgical excision from top of his head. As though no calculated plan of attack. Then told me to find a plastic surgeon who could help me with so it would look better. He said I would need to coordinate that. I then asked about seeing an Oncologist. He said if you want to. Well needless to say when I left there, I was scared and bothered by his lack of calculated plan of attack for surgery. I found that unusual and unprofessional. I found out since then from other patients (sarcoma) that he has seen many sarcoma patients and also has performed surgery on them without making the referral to a Sarcoma clinic. I also found out that the MD I see now,from a Sarcoma Clinic, has given many talks in this area to Orthopedists about sarcoma and the guidelines for treatment which would be to refer to a Sarcoma clinic.
Anyway I left that post-op appointment started researching this myself and with the help of my brother-in-law (a physician) I found out what the treatment guidelines are for this. I found the nccn.org web site and called Moffitt. I saw my doctor on a Tuesday, called Moffitt Wednesday, and had an appointment the early part of the next week. I never called my doctor back, and finally many weeks later his secretary did call inquiring on surgery. I just never returned the call. I keep meaning to write a letter and inquire on his practice of treating patients and NOT following the nccn.org guidelines for sarcoma. I am completely taken back that I have this last year seen many local Oncologists and this Orthopedist who continues to treat patients and not refer. I know these are guidelines, and physicians can treat if they chose to do so. But where is the informed decision; shouldn’t they give patients the information and then let the patients make the decision instead of making it for them. It just isn’t about the physician; it also is about all the health professionals involved – pathologists, radiologists, nurses, etc.
Due to sarcoma’s rarity, most health care professionals lack the exposure and experience so there is much room for error. My question and great concern is the lack of accountability from these physicians who treat patients when they should be referring them to Sarcoma Clinics. Since I am in the field this bothers me, and I wish we could make these people more accountable for their poor decisions for patients. It is sad to know that patients put their fate in a physicians hands, and for reasons I am not sure (ego I think) they continue to treat a cancer which is still not understood as well as other cancers and don’t give patients the options to know what treatment guidelines are available and supported by other healthcare professionals in the field of Sarcoma treatment and research. Well sorry to ramble and this is too long I imagine. I just wanted to get this info out and state my concerns.
By the way I have sclerosing Liposarcoma and have been seen every three months at Moffitt in Tampa by Dr. Letson.(wonderful and knowledgeable physician) my margins were neg after he did his surgical excision on March 28, 2007. I continued with every 3 months MRI/CT of chest-NED as of Dec. ’07. I will continue to advocate for changes and accountability among health care professionals in regard to Sarcoma