DCIS Diagnosis with Second Surgery This Friday. I Need Help.

I got up this morning and called the patient care coordinator at the hospital where I have had most of my diagnostic tests and my first surgery. She is a most lovely woman, and I told her I was going to say some not very pretty things, but that I knew she could turn them into the right words. I don't want to get into a tangle with the surgeon's nurse. I live in a relatively small town. I told her that I am cancelling the surgery for Friday, and that I want time to get myself and my affairs in order before major surgery. I cannot imagine why it took me over a week to figure out that I was really facing a life changing event that required a great deal of attention to my finances, my health, my family's health, and my emotional well-being. I am not a girl scout getting ready to report to camp and get my marching orders! I expressed my frustration and anger to this woman, and she felt strongly that I should meet with the surgeon to discuss the issues I presented. I don't hold back when talking with my doctors, and most of my doctors and I have a respectful relationship but we also tell each other what is on our minds. I guess that this will be a hard meeting because the surgeon going to hear my version of the truth. Since he did fail to call me to discuss the pathology report and surgical options, I don't think he will have much to say. The patient care coordinator said that if he gets angry and defensive that he is not the right surgeon for me. He is not the right surgeon for in under any circumstances. After I got off the phone with the patient care coordinator, I called the nurse practitioner in my GYN doctor's office. She is also a wonderful woman who is very diplomatic and subtle. She said, in short, "If I were recommending a surgeon to a loved one such as a sister or my mother, I would send her to Dr. X." Dr. X performed a mastectomy on her sister and at that time he pulled together an expert team that included a plastic surgeon who did a immediate reconstruction. It went very well. I did some research and discovered that Dr. X is a surgical oncologist at a major university hospital with impeccable credentials. I immediately called the hospital and I spoke with the patient care coordinator for Dr. X, and she asked me to pull together all of the images from all of my mammograms and other procedures (ultrasound, stereoscopic biopsy, MRI more mammograms) long with paper pathology reports from surgeries and diagnostic procedures going back as far as I can in time up to five years, and she said to call her back when I had everything together and that she would tell me where to send the package. After that happens, I will set up a surgical consultation with Dr. X. I have decided that I am going to ditch the current surgeon, who has good credentials but who is not a breast cancer expert, and I am going to have my surgery done by a surgical oncologist at the university hospital. Dr. X may know if there is any recent research or any ongoing studies on the children of DES mothers. I did have colposcopy at a university hospital for many years, and I had abnormal cells on my cervix. I have had two procedures to stop uterine bleeding, one of which I had in the past year, and one cryosurgery to remove precancerous lesions along with surgery to remove a uterine polyp.

What a difference a day makes! I went to bed confused and woke up determined to get moving in a new direction. I have been helped and encouraged immensely by the people on this site who responded for my plea for help. I spoke to the nurse in my mother's oncologist office. She did not have good news. My mother's CT scan done last week showed that the disease is not being pushed back enough. Well, we sent my 85 year old mother to a rehabilitation hospital a month or so ago to force her to improve her strength. She went through three hours of physical therapy every day. I told the nurse that my mother was stronger than before and that she might be able to handle stronger chemo. The nurse was encouraged by this news, but I don't know if my mother wants to keep fighting or not. All I know is that I had no idea when I started this process that it would turn out to be very complex and confusing. It really does take human communication with other people who are knowledgeable as patients, as medical professionals, as caregivers - along with talking to friends and family - to sort through all of the information and feelings that come flying at you when you get a diagnosis that suggests you are at risk for breast cancer.

The nurse from my mother's oncologist's office said that my mother was not tested for the BRCA genetic risk factors. She did however say very firmly that she thought I should be tested. Not sure why she said that, as others on this site have suggested that if I had the BRCA gene that I would have had breast cancer by now. I am 60 years young, but if I don't find a way to cope with the stress, I will be an old woman before this ordeal is over. If we don't have Jewish blood, I will bite off my own ear. My mother's father's family were wealthy bankers who settled in Pennsylvania. They had a famous name that persisted as a middle name on my mother's side of the family reflecting their heritage and their role as philanthropists. However, we may not be genetically related to Ashkenazi Jews.

The Chinese say that "Crisis is opportunity riding on dangerous winds." The nurse practitioner in my GYN doctor's office said that I could wait at least three months for surgery. I need this time to get my head in the right place, to get my family situated in case I have little energy to keep the household going, and to become comfortable with my choices. I also need time to pull together some financial resources to have the surgery done out of town, as I am living on a limited income. Within every challenge is an amazing opportunity waiting to be discovered. At least that is what I have found in my life. Am I in the best shape possible to meet this challenge? No. Can I do it? I think so. Why do I think I can do it? Because one of my doctors and mentors has taught me that if I run into a mountain that I cannot climb over that I have to start chipping away at it until it starts to diminish in size. Do I want to fight? I think I do. You never know what lies on the other side of the mountain, and I am still curious.

Thank you for listening.

Yup, I am exhausted but that never stopped me. I chalk it up to completing two Master's degrees and working for 18 years in the cruel city of Washington, D.C. I just don't stop. if there is a barrier, I look for another way to slip past the guards and gatekeepers. I am thinking I would be a good advocate for cancer patients because I don't take no for an answer and I am capable of outpacing my opponents. As for possible breast cancer, though, I have met my match. I admit that it is humbling. I have been humbled by many events in my life, but being humbled offers the chance to see where I might improve. Breast cancer, though, is an adversary that has the power to be invisible. I know what I am up against. The only thing to do is to live well when possible. Some days are simply awful, and there is no getting around it. Still, winning has a great deal to do with ceaseless work to find the right people who know the most about a topic, probe them for as much information as possible. love myself in spite of my imperfections, and seek spiritual guidance. I made someone angry discussing my intense belief that we have spiritual guides who speak to us, if we would listen. They can help us understand where we stand, they can warn against anger and revenge, they can speak to us through our loved ones, and they can bring us peace in times of turmoil. I admit to being in turmoil. I admit that this is difficult. However I have learned to turn my suffering over to a higher power, and it is liberating. My way is what works for me. and I don't preach it to anyone else. I simply bear personal testimony that when I am quiet and I listen, I can hear a small still voice that tells me what I need to know.

Onward. I may fall in the road, but I will look at the trees and the plants and the sky as I walk this path.