When Your Oncologist Leaves

Two weeks ago my oncologist told me some devastating news – he was leaving. It’s honestly one of the hardest things I’ve heard at an office visit over the years, and trust me, there have been some tough conversations.

He is leaving the UW health system.

He is moving to Florida.

He said he had to go.

What does that even mean?

I know I have been unhappy with some of the management decisions that have trickled down and affected my care. There have been changes I don’t think serve patients’ best interests. There have been facility needs that have gone unmet or approached with band-aids rather than true solutions. There very well could be demands put upon him that I know nothing about and he feels he can’t work in an environment that doesn’t match his philosophy anymore. I don’t know anything for sure other than he is leaving.

He is a GOOD DOCTOR. The best.

I understand he has to do what he needs to do. I can’t be mad at him for doing what is best for him. However, if he’s leaving because of some bureaucratic crap coming down from people who have lost their connection to treating, caring, and curing people with cancer, then I am outraged. My gut tells me to be outraged.

Whatever the reason, I am losing my oncologist.

I feel such sadness and an immense sense of loss. I have that feeling of a small child who suddenly discovers she has lost sight of her parent in a grocery store and stands frozen and scared as she begins to cry. I feel broken like a mirror that has shattered into many shards of sharp glass. The image looking back at me is now jagged and distorted. I feel like a kicker who missed placing the final kick through the uprights by inches in a championship game. Everything feels wrong. I am all out of sorts.

My oncologist has been a constant in my life for more than seven years. I’ve seen him every three weeks for the last three years. I’ve known him for about fifteen years because he was also my mother’s oncologist. I have held him to a very high standard. I’ve depended on him to be there for me. This is someone whom I’ve trusted, respected, and knew was one hundred percent on my side. He is a good blend of medical expertise and hope that every oncology patient needs. He understands I have many questions, I worry, and I’ve always wanted (and will continue to want) aggressively appropriate treatment options. I will choose option A with challenging side effects over option B with lesser effects if A can potentially do better work than B. Every. Single. Time.

He’s gone to bat for me on more than one occasion.

He knew how badly I wanted to keep teaching and helped me keep doing what I loved doing for years. He also told me when he thought it was becoming too tough and unrealistic.

He suggested supplements that have helped me feel healthy and strong.

He encouraged more testing that opened doors to current protocols. Protocols that have been good for me.

My oncologist understood me. He viewed me as a person and not just as a patient. I have grown very attached to him. I will miss him.

Where do I go from here?

I am fortunate for a few reasons. The UW Carbone Cancer Center where I receive care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will continue to receive quality care. I am also lucky that if my oncologist is leaving, he is leaving at a time when I am doing really well. I can only imagine how much harder this would be for me to handle if I were struggling physically. Lastly, my oncologist has taught me well. I’ve learned a lot from him about my health. He has really shaped my thinking since we embarked on our doctor-patient relationship. I daresay I may have rubbed off on him, too. At least I hope I have.

I am not always an easy-going patient. I’ve edited consent forms before signing them. Someone there once compared metastatic breast cancer to a cow that had been let out of a barn. It’s Wisconsin. I added on to that analogy and told him, “Just because the cow’s been let out of the barn, it doesn’t mean it can crap all over the pasture.” I’ve questioned, I’ve pushed back, I’ve disagreed, and I’ve complained. Mind you, I’ve also agreed, supported, amazed, and sparkled because that’s the kind of gem I am. And I am a gem. I like to think my spirit has never been diminished there because of my health status.

Oncologists come and go. I understand this is true, perhaps I have been fortunate that it took this long to happen to me. People move on in the professional world all the time. Yet an oncologist is very different. In my eyes, an accountant, dentist, plumber, chef, lawyer, teacher, or other professionals all have very different relationships with the people they serve. The relationship with a doctor is different, more intense, and more personal. I feel lost, abandoned, and alone. This person just isn’t going to be around and that makes it similar to a death in some aspects. A good friend of mine has had two oncologists leave her, and a third tell her she couldn’t see her again because she has passed enough benchmarks in time and is there is no evidence of disease.

The process has started to find a new oncologist so I have one in place when he leaves in a couple months. If you know me, you won’t be surprised that I’ve compiled a list of requirements my next oncologist must have.

My oncologist needs to be:

  • Accessible
  • Hopeful
  • Positive
  • Empathetic
  • Personable yet professional
  • Up to date on current research and new treatments
  • A lot like my current oncologist 🙂

My oncologist must:

  • Have a breast cancer specialty
  • Keep a very close eye on me
  • Advocate for me
  • Remember I am a person and not just a patient
  • Accept and even enjoy my personality (I’m anxious, I’m smart, I research a lot on my own, I advocate for myself, I can be intense and insistent, I’m thorough, I’m hopeful, I’m fun, I cry, I’m sensitive, and I’m tough).

Sure, I have high standards and I am not going to settle for someone who doesn’t meet them. A good fit is essential for my best care.

I am confident I will find the right fit.

Unfortunately, I feel the time has come for me to move away from the smaller clinic setting I love so dearly and transfer to the center at the giant hospital. I need to put more weight behind a preferred oncologist than my preferred location. Truthfully, I’ve heard whispers that the smaller clinic may not stay open. I wouldn’t be surprised if it closed. It would be consistent with the kind of nonsense decisions that have been made regarding that smaller setting. Then, once again, I’d have to make a move with either a new doctor, a new location, or both. More importantly, I don’t know if I can continue to go to my current clinic once my oncologist leaves. Maybe I need a fresh start. It could be the best choice I can make.

It would be tough for me to leave and make this change. I’ve also grown very attached to my nurses, NP, and even the schedulers and people at reception. Everyone is so friendly and it’s one of the reasons I prefer the smaller setting. I get attached far too easily. Still, I must put myself first and make the decision that serves me the best.

I will be fine. I have time to accept this change, make a plan, and transition positively whatever I decide. As for my oncologist, I will thank him, say goodbye, and be forever grateful that I have been in his care for so many years. He’ll always be my oncologist. I’ll just have two now.

Consider responding:

  • What helps you when you need to make a difficult transition?
  • What qualities or characteristics do you look for in your doctor?

Patient and Family Advocacy

Patient and Family Advisory Councils connect patients and family members with employees in the healthcare system. Members provide input on how to improve the patient and family experience in a specific area. PFAC is the shortened name for these groups. Patients and family members who have been caregivers for patients are called PFAs.

PFACs are a way for providers to gain viewpoints from the perspectives of those on the receiving end of care. Participating in patient and family advisory committees gives patients and family members the opportunity to become advocates for their own health care and that of others. It is also an opportunity to give back and stay involved in the health community.

I joined a PFAC oncological group in the spring of 2015. It focuses on any aspect of oncology and welcomes participants who have been affected by any kind of cancer as a patient or family member who has received care in the UW Health system. My understanding of what happens on more of a business level of health care has been deepened. Surveys are often used to gather and then aggregate information from PFAC members ahead of scheduled meetings. I have completed many. There usually is a guest presenter on a topic.

Truthfully, I often feel as though final decisions have already been made and the purpose of patient/family input is simply to agree with what is being presented. As a result, I often feel somewhat disagreeable when I say something different from what I think they want to hear. Yet, I’m not there to make them feel good and/or validate their work. I’m there to offer my honest feedback and to advocate for the best patient-centered care possible. I’ve also gleaned a few insights into possible options from which I could benefit. Those are added benefits to my participation.

I am one of two members in my group who receives care at a building outside of the hospital that offers cancer treatment in a smaller setting. I find smaller is much more personalized and this is the right choice for me. I am also the only member of the ENTIRE group who is under current treatment. It strikes me as odd. I would think there would be a higher need to recruit current patients for input when it’s THEIR CARE being discussed. My status gives me a unique perspective where I can lend my voice to what I currently experience and my observations.

I thought some readers might be interested in some of the topics we’ve discussed over the past four years. I do not feel I am violating any privacy policies by sharing in general terms. I will not refer to anyone by name. My purpose is to provide a glimpse into the world of Patient and Family Advisory Councils. Sure, I have some opinions and they are mine to share. I am confident you’ll know those when you read them.

The following are a few of the PFAC topics that have been discussed:

Clinical Trials

  • A speaker was brought in to present information with an accompanying PowerPoint. The presentation on clinical trials was largely informative. Time was spent providing feedback on the cancer center’s website dedicated to trials. Feedback was solicited on how to raise awareness of and participation in clinical trials, and discuss reasons why patients may not choose to be involved in them.
  • I perceived the hospital perspective was that patients often do not want to be involved in trials. I believe there are reasons that validate that perception. Personally, I would not choose to be involved in one if I may be in a group that is not receiving the strongest medicine available as compared to another group. It’s too big of a risk for me. Many trials are changing so all patients in a trial receive the drug being tested. If patients understand that, then participation may rise.
  • Trials have also become very specific because of targeted treatments. Often times, it’s the trial sponsors who have restrictions that exclude interested patients because patients do not fit a sponsor’s requirements for the ideal sick patient. Patients are too sick, not sick enough, or something else. Patients would like the opportunity to participate (and potentially greatly benefit), but they are told they cannot. In the end, it’s the sponsor rejecting the patient, not the other way around.

Chemotherapy Preparation

  • One evening, oncological pharmacists presented information on why patients wait so long for their chemotherapy drugs. There have been days I’ve waited three hours from the time after an office visit until my drug drips into my body. It takes considerable time to make chemotherapy for an infusion. Pharmacists can’t make it until the oncologist has released the order for it. This is dependent on the patient’s office visit and dictated by results from labs looking at blood counts and metabolic functions. Kidney function, white cell counts, liver enzymes, and other numbers or functions out of kilter could delay or cancel a treatment. Each drug is made specifically for a patient. Dosing is specific to a patient’s needs and once made it can’t be used on another patient if the intended patient is unable to use it. It expires after about twenty-four hours. Money is lost if it goes unused. My blood boils a bit at this economic consequence because in my world patient care outranks profit every single time. Hiring more pharmacists would lessen the time a patient has to wait. Patients would get what they need more quickly. An on-site facility to make the chemo would be helpful, but apparently this isn’t deemed essential. Again, financial factors are at the root of these decisions. My blood pressure can only climb because of them. Don’t mind me, I’m just a patient.

Genetics Clinics

  • On another evening, a presenter gave an overview of genetic counseling and progress in identifying genetic markers that increase a person’s cancer risk.
  • The benefits of DNA banking were shared. I was somewhat unimpressed as it seemed the biggest benefit would be to the company providing this service. DNA banking is an option available outside of genetic counseling. Many questions float around in my head concerning how my DNA would be used.

Appointment Scheduling

  • At first, this didn’t seem like a terribly pressing topic, certainly not one to take an entire PFAC meeting to discuss. But it did.
  • The chemotherapy managers and oncology directors were gathering input on which patients needed to be seen by oncologists and which patients could be seen more routinely by nurse practitioners. Who was considered urgent? I get good information and a slightly different perspective when I see my nurse practitioner, however, I will always prefer to see my oncologist over her. He has more expertise.
  • Other members in the group nodded their heads and quickly agreed that this was a great idea to see a nurse practitioner more frequently. It isn’t from my perspective. This is where my situation as a current patient is so important. Doesn’t every cancer patient think his or her care is urgent? I am just as urgent and as important as another patient. It seemed to me like some patients were being labeled as more valued than others. The thought was perhaps patients who were further out post-treatment could be seen by a nurse practitioner if they only came in once a year. Well, no, these patients need to be seen by an oncologist, too. Recurrence happens even when patients have passed a five-year cancer-free benchmark. I’ll say it again: the oncologist has more expertise. A nurse practitioner may miss something that an oncologist may notice.

New Clinic Design Planning

  • A new campus is being designed on the far-east side of Madison. An interior designer presented current design plans that were extremely comprehensive and detailed. I was impressed with what is being planned. The plans are patient-centered and inclusive to coordinate many aspects of care in one setting.
  • Input was sought after for any aspect of this clinic. I felt the designer presenting genuinely considered all comments were important whether they were about parking lot locations to what kind of treatment room options would be enjoyed or needed (open, semi-private, or private). I seemed like the lone voice expressing how important private treatment rooms were for patients. As a patient, I have intensely private discussions about my health with my treatment nurse while receiving treatment. I don’t want to share that information with others, nor do I want to hear their confidential conversations. HIPAA laws exist to protect patient health information. I expressed very strongly that privacy must be ensured in treatment areas. I was thankful someone agreed with me who had called in for the meeting. Even if privacy were not a concern, cancer patients have compromised immune systems and should not be sharing space with others or others’ family members who are sick and may or may not be showing symptoms of a virus.

The recommendation in my group is to serve in a PFAC group for five years and then make room for someone else. I don’t know how closely that guideline is followed; some members in the group have been there more than five years already. I do enjoy the other members who have been former patients or caregivers for family members. Everyone brings something different to the table. We volunteer our time because we feel we can make a difference. We all advocate for the same thing – the best care for patients.

Consider responding:

  • Have you ever advocated for change in your health care or that of a family member? How? What happened?