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Building Your Health Care Team Falls on You

When I was first diagnosed with terminal cancer, I had the mistaken idea that I would have professionals who would help me understand what was happening and what I/we would do about it. I felt I needed someone to hold my hand and lead me along.

Who Gets to Create My Health Care Team?

It was confusing to know if my primary care doctor was involved or not. As it turns out, he is sympathetic and is available to me, but not really a main player in my cancer treatment. The medical oncology department maybe was my go-to now? While staff there is friendly and efficient for appointments, getting answers in between appointments can be frustrating.

I Do!

I finally realized I was going to have to educate myself and become my own advocate. Once I figured that out, I started asking for what I needed and I organized my own care. I have cancer related forums and the internet and medical family members who have helped me see what I need.

Here’s what I’ve learned.

Primary Oncologist

I will say that my primary Oncologist is less than helpful in managing my overall care. I am trying to stop complaining about his lack of communication, but it is a challenge at times. Now, I have learned to ask for the services that I need. He is willing to give me referrals when I ask for them. And he can prescribe the treatments that I need so for that, I am thankful.

Urologic Oncologist

A second opinion, not local, gave me the confidence to stay local and to accept my diagnosis. That particular doctor, a national expert in urologic oncology, has continued to be a support to me through telehealth appointments and some procedures.

He has told me that I have put together a good team and that they are there to help me. He is kind and responsive and his nurse gets back to me, sometimes in minutes.

Physical Therapy

Early on, I asked for a physical therapy referral. I had a terrible pain in my hip and I hoped that physical therapy would be beneficial. I went for several weeks, but nothing really helped. I finally learned that my pain was from a cancerous lymph node that had wrapped itself around a bundle of nerves. No physical therapy was going to change that. I chose to stop PT on my own. No one quizzed me about it.

Palliative Care

Next, I asked for a referral to palliative care. Our daughter-in-law has a board certification in palliative care and hospice, and she educated me that palliative care can happen at any point of need. You don’t have to be ready for hospice to tap into palliative care expertise. My experience is that the palliative care team has been the closest I have gotten to care coordination. They are available, responsive, and they communicate that they care.

Just yesterday, I had a new need for palliative care, and the nurse who responded to my portal message was someone who had helped me six months ago. “It’s so good to talk with you!“ I told her. “I know,” she replied, “but I always think that if I haven’t talked with you that means you are doing well and that is a good thing.” The simple fact that she remembered me was a comfort.

Whatever need I have had for pain management, and at times, a listening ear, palliative care has been there. I have a nurse, a nurse practitioner, and a doctor all on my team if I need them. They might be my favorites! When I need hospice, they will be my first call.


My cancer is bladder cancer so urology is another specialty important to my care. Unfortunately, my confidence in my local urology options is low. Fortunately, I have a nurse practitioner here who knows me and is responsive. The doctor in Chicago, the specialist, is a go-to for me with urology procedures as they arise.

Infusion Center

During months of attempting chemotherapy, I got to know the nurses in the infusion center. There are a lot of them, and they were all knowledgeable and kind. One day I was having a mini-meltdown (mainly prompted by the lack of communication from the oncologist) and one of the nurses knelt beside me, heard me deeply, and told me to be in charge of my care even if it meant changing doctors. I am deeply grateful to her and I’ve told her so. She boosted my confidence to be in charge of my own care.

Radiation Treatment

After chemo didn’t work, I was referred to a radiation oncologist so I could start radiation along with immunotherapy. My first appointment with him, which was mostly informational, was scheduled for an hour, as a recall. Really? That had never happened before. He was thorough and kind and smart.

At an early meeting with him, he said, “We need to do something about this kidney of yours.” From the beginning, my left kidney had been enlarged but no one had commented on it beyond my scan reports. I wondered what we might do? Well, he explained, they could put a drain in it. “So, can you make that happen?” I asked. Indeed, he could and he did.

Interventional Radiation

Within a few days, I had an appointment with Interventional Radiation and had a tube in my back that drained that kidney into a bag. A nephrostomy. Why no one else had thought it important is mystery to me (and adds to my belief that I need to be my own best advocate).

Medical Oncologist

At one point, I tried to move my care to a medical oncologist in Chicago (I’m in central Illinois, so a 2.5-3.5 hour drive, depending on which clinic) but she told me it doesn’t make sense. I can get the care I need, albeit with less personal connection, here, locally, and that is worth a lot.

She would not do anything differently than what I get here, and she is available to me anytime. She has even called me randomly to check on how I am doing and told me to consider her a team member. I’m content here near home again, after my appointment with her.

All of This Is Why Building My Own Health Care Team Is Essential

Educating myself and asking for what I need has made a huge difference in my mental health. If other needs arise, I am confident I will find a way to meet them. So, I am content and grateful to stay close to home for regular care now that I have built a team and know I can access them for what I need.

Let’s Have a Conversation:

Have you had to build a health care team on your own? Did you find helpful professionals? Did you lack communication? How did you solve any issues that arose and how did you manage to get what you need?

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I’m so sorry that you had to go through all that. Cancer diagnoses are so frightening, and having to expend energy just to coordinate care has to be really frustrating. I had a diagnosis of uterine cancer, and thanks to a fabulous team, was having surgery within two weeks. Four months later came a diagnosis of breast cancer. I returned to the same cancer center, and both teams coordinated beautifully. I was offered complementary services such as oncology nutritional services, counseling, physical therapy. All that was coordinated through the oncology social worker. My PCP saw the names of the surgeons and oncologists and told me, “Wow- you have the ‘Dream Team!’ “.

Amy Sanheim

I am a breast cancer survivor. I learned early on how important it is to be your own advocate. Early on, after diagnosis, I realized that my primary was no longer going to be my best choice going forward. She was aware of my diagnosis and never reached out to me. I told her how I felt about that and did a lot of research on PCPs. I found one whose online video touched me. He turned out to be wonderful and very competent. He was my guiding light through the entire scary cancer experience. Then I changed oncologists because the first one had a very arrogant attitude. My husband came to every appointment with me, and we both felt “talked down to.” Again, God watched over me and led me to the most wonderful, caring oncologist. I think the main thing I learned through it is that you absolutely don’t have to, nor should you, stay with any physician who does not make you comfortable ever, but especially through cancer treatment.

Elizabeth Abel

What a reveal, and inspiring that you could put together a health promoting care team. I have had frustrating oncology care over the past two years. It seems in my experience the doctors take a code of silence and have trouble with follow up. They may be overwhelmed too. Yet the nursing care has be supportive and empathetic. I am a retired nurse practitioner and have been concerned about getting access to the care I needed. I have developed a serious side effect, the oncology doctorsfinally referred me to urology. Their care was most thorough and improved my progress toward feeling better and doing activities. Even just baked a cake today despite walking with a walker. I had been telling oncology about my symptoms six month prior to the referral.
I often wondered how people managed who didn’t know how the system should provide care. As difficult it is on us the patient, there is a challenge for providers as well. If the system does not support all the players, then care is not optimal. Your story gave an excellent example. Unfortunately many people don’t have the same opportunities. The real concern is maybe it is a major health care system issue. Covid seems to have revealed how broken some of the countries infra structures are. Health care seems to be one of them. My goal and yours it appears is to make every day count.


Boy, did I need to read this. I’m saving your article to refer to when I need to do so. Just diagnosed with breast cancer and scheduled for a double mastectomy. My main frustration is the breakdown of communication with some providers.

Margaret Manning

Debbie, I had no idea you were facing this medical issue. I hope you feel you are in control of this – I love the down to earth approach you are taking- sending you much love ❤️

The Author

Debbie Hensleigh is a serial entrepreneur and business coach who is intent on living life on purpose. She is a speaker, writer and leads workshops on intentionally designing your best ThirdThird, from ages 60 to 90. Building on the FirstThird (learning years) and the SecondThird (earning years), the ThirdThird can be the best Third. Please visit Debbie’s website here

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