The saying, "It takes a village" seems to resonate repeatedly in my mind when I think about the group of healthcare clinicians who have been and still are an integral part of my breast cancer journey team. Some patients may feel that they don't have a choice in deciding who their team might be. Perhaps it is because resources are limited in their area. It could be that some patients are overwhelmed with the diagnosis and let medical professionals guide them through the process of choosing or assigning their healthcare team. No matter what the circumstances you are owed the very best medical team you can find and that will be covered under your insurance plan. Some with additional financial resources may even be fortunate enough to choose medical teams not covered by insurance just for their peace of mind. Either way, here is my story, my process and my team. I hope you find this helpful in guiding you through the process from diagnosis to reconstruction.
My team, from the radiologist who found the recurrence of my breast cancer tumor to my microsurgeon who reconstructed my breasts, was all an integral part of my healing. The road was not always easy for either of us, as a patient or as medical professional. At times there was news to deliver that simply left me devastated and I'm sure was not easy for the individual clinician to convey . There were ongoing details of treatment and surgery that had to be explained, sometimes more than once. But in the end, I stuck with this team and have moved beyond the fateful day that started with my radiologist who had to deliver the front end of the news; a recurrence of breast cancer as well as a new diagnosis in a different breast.
She was a kind and gentle woman. There are those radiologists who I call "the ghost doctors," no disrespect intended. They are unseen and spend a great deal of their time in dark rooms looking at films and then the patient usually hears the radiology report from the oncologist or breast surgeon. Patients don't always speak to them because their main focus is reading films. But, my radiologist was very interactive with her patients. She came in to tell me as I held back tears that the lump she detected on my mammogram was likely cancer. She said it with such affirmation and confidence that I was certain the guided needle biopsy she performed to confirm that was not going to reveal anything different. I was correct. She also had to perform one on the opposite breast after an MRI revealed yet another mass in that breast.
My Advice: If your oncologist, primary care doctor or surgeon cannot explain your radiological reports to your satisfaction, ask for clarification and ask to speak to the radiologist. If they aren't interactive radiologist like mine, you have a right to speak up and ask to discuss the results with them. As difficult as that is sometimes, it is your health and you owe it to yourself to have the best clarification about the findings. That may necessitate finding a nurse navigator or patient advocate to help you with that.
My Breast Surgeon
My radiologist, again, was kind enough to ask me if I knew of any breast surgeons. If not, she would recommend one for me. I immediately told her about a woman who removed a benign cyst for me a few years prior. When I mentioned her name she immediately nodded her head in approval, told me that breast surgeon was in their system, and she thought very highly of her.
Tip: When a trusted and respected doctor that you already have a good rapport with recommends another doctor, chances are things are going to go well.
They did go well. My breast surgeon, again another woman, was so easy to talk to, so compassionate, yet so very thorough and honest with her approach. She told me upfront that I was likely looking at a double mastectomy but wanted to do further testing to make sure that was going to be the best course for me. Additionally, this woman was informed on the latest techniques and knew of the "gold standard," as she described it, in breast reconstruction, the DIEP flap. She gave me other alternatives and information for other types of reconstruction but when she told me I could be my own tissue donor with the DIEP, I was on board. She told me what to look for in a DIEP surgeon, how long the surgery takes and what the recovery time was. In other words, she gave me enough information to peak my interest and get me going on my own research to find a board certified microsurgeon.
I was simply amazed that I had my mastectomy on a Wednesday morning at 8am, was home by noon the next day and walking the neighborhood by the weekend, albeit short walks. I did go into surgery in very good physical shape but I attribute her skill and experience as part of the equation in my ease of healing and recovery.
Tip: Ask how many mastectomies your breast surgeon has performed. Ask what the healing complications can be and how those are handled should they arise. Ask how long you will be in hospital and what the recovery time will be. Ask about your range of motion and if you will need physical therapy afterward. Ask how quickly your surgical report will come back to find out about lymph node involvement or if you will need any adjunctive therapy after surgery. Ask if you are a candidate for nipple sparring mastectomy (NSM) and what her rate of success is in saving the nipple. Ask, ask, and ask!!
I was assigned my oncologist by the breast center I would go to. My primary care doctor was a female and I seemed to be keeping with that pattern because my oncologist was also female. The best thing she said to me during our first visit was that she intended to see a cure for cancer in her lifetime, a lofty statement indeed, but what breast cancer patient doesn't want to hear that? She was a young woman and explained everything very thoroughly to me. I wanted extra time and sometimes things needed to be explained twice or more and she took the time to do that. She was willing to listen to my needs and my research and what those findings meant to me. We had to have some intricate discussions about my care and they weren't always easy. But, she stuck with me and I stuck with her. This is what is referred to as shared decision making. This is a process where you go in as an informed patient, listen to your doctor's recommendations and expertise on the diagnosis, share the information you have with your doctor and together you come up with a plan that you feel is the best decision for your care.
Tip: Find out about your oncologist's interest in the field of cancer. Are they doing clinical trials that you might be a part of and benefit from? Do you feel part of that "shared decision making" process?
My Breast Reconstruction Surgeon
Not to diminish any of the relationships I've had with any of my health care team but when a surgeon literally and figuratively puts your life back together that relationship is forged in a way that is unique and on a completely different level than with your other cancer care team.
Since I was told about DIEP flap from my breast surgeon, the research for a qualified plastic surgeon began for me as I was recovering from my mastectomy. I went to the internet and carefully vetted microsurgeons by reading their curriculum vitae. I looked at their training, fellowship experiences and combed the comprehensiveness of their webpage. I looked at before and after photos in complete amazement at the transformations. I read on line forums from women who had DIEP flaps and some of their experiences traced back to some of these doctors I researched on line. I watched YouTube videos and patient testimonials about their experiences. I connected with other patients who had this same procedure to ask about their experience, their surgeons. I combined all of this research with the initial information I was given by my breast surgeon.
I made a comfortable choice with an ASPS board certified, highly-trained, plastic micro-surgeon named Dr. Minas Chrysopoulo, Dr. C, as he is known by his patients. He had a high success rate, 99% or more and he also worked with a team. The practice and team he worked with, all highly qualified ASPS doctors, dealt mainly with cancer patients and more importantly, their main focus was autologous flap surgery, particularly DIEP flap. Dr. Chrysopoulo fulfilled my entire criterion and now it was time to verify my choice.
The day I walked in for my first consult with my board certified plastic surgeon, my husband and I were both full of anticipation. Dr. C pulled a chair up right in front of me and said, "You've been through a lot haven't you. But, you look really great!"
Compassion! Just what a two time cancer survivor needs in a plastic surgeon.
My husband, who is an engineer, asked my plastic surgeon some pointed and technical questions about the procedure since he had to trust this man with my life while I was under the knife and anesthesia for upwards of 8-10 hours. The responses were straight-forward, honest, and inclusive of everything we should expect the day of surgery.
Truthful and sincere! Just what a care-giver/husband wants to hear from the man who is going to put his wife back together after watching her lose the very body part that defined her femininity. We walked out of his office that day after the appointment. We felt the first sense of hope since my diagnosis seven months previous to this consult. My husband looked at me and stated, "That guy is golden."
The morning of surgery he walked in and gave me a fair analysis of what he would be doing that day. During surgery, he had to remove quite a bit of scar tissue that was left from radiation twelve years previously from my first diagnosis. When he walked out to report the outcomes to my husband they had a brief chat. Again, my husband gets straight to the point. After the summation given by Dr. C, my husband asked him, "Are you happy with the outcome?" He replied, "I am." That's exactly what my husband needed to hear.
Unwavering confidence, skill and acknowledgement that my due diligence in finding a qualified micro-surgeon paid off!
After phase 1and the time leading up to phase 2 of my reconstruction surgery I became a patient advocate and educator for other women who are seeking information about breast reconstruction, surgery, healing and recovery. I would not be doing this outreach had I not had a good experience with my breast cancer team of doctors from radiologist to plastic surgeon. I will continue this outreach, education and advocacy because I continue to work with my entire breast cancer team.
I felt like a team player with all members. Patient empowerment over your health care should be a given but that is not always the case. Physicians are individuals just as we all are in every walk and profession of life. Patients do not always have good experiences but you must be the captain of your own ship. When a physician treats you like a team member and embraces the shared decision making process, you forge not only trust but friendships and respect for your medical team. I applaud each and every doctor who traveled this journey with me. I will be on this journey a long time as I share it with other patients and the hope is that other breast cancer patients can navigate the complicated waters of breast cancer and breast reconstruction with knowledge and shared decision making with their health care team.
By: Terri Coutee