When Tami was diagnosed with invasive ductal carcinoma in 2015, she, like nearly everyone who receives news like that, was terrified.
Tami shared her story with us as a way of illuminating the ways in which the doctors, administrators, nurses, and oncologists worked to comfort and heal her—and the ways in which they did not. What’s surprising is the very subtle ways a care provider can express empathy, warmth, and compassion, and how those subtleties go a long, long way to making a patient feel comforted and heard.
Here’s our chat. (Some of Tami’s answers have been edited for clarity and length.)
BHG: So let’s start with your diagnosis: What happened?
Tami: The diagnosis was invasive ductal carcinoma. That was the diagnosis my OB-GYN gave me after the biopsy. She was not my oncologist. I was then referred and shuffled around for an MRI and then to consult a couple of oncologists. I had consultations with two oncologists, two breast surgeons and then later two radiation oncologists. My doctor who diagnosed me was just business-like and was set up to refer me out to the specialists I would need. She prescribed me something for the anxiety, and then kind of shamed me for using it because she said I’d get addicted. Oh, and the initial diagnosis was stage 1 but after my [double] mastectomy it was discovered to have spread to my lymph nodes and thus, was stage 2.
BHG: Did you at any point find a care-provider who made you feel safe, heard, seen, and understood? What were some of the warmer gestures you remember from the practitioners who did it right?
Tami: I did end up with a great care team. I had some really bad interactions at other facilities, but, my oncologist who managed my chemo was always present, answered my questions, and wasn’t an alarmist, which I really needed.
The nursing staff through chemo was 90 percent wonderful and took their time to answer my questions and check in with me throughout treatments.
BHG: It sounds like being listened to and having your questions answered was a big part of what made you feel cared for. Were there any gestures, details, or kindnesses that stand out to you as particularly comforting?
Tami: My radiation oncologist was by far the best. By the time I got to her I had gone through the mastectomy and six months of really hard chemo and I was a mess with constant panic attacks and depression and was never able to sleep. She immediately diagnosed me with PTSD from everything I had gone through. She sat with me while I sobbed on the floor and she validated everything I was feeling. She gave me a prescription to ease the anxiety that was keeping me from sleeping without having night terrors all night. She treated me like a person and not just a cancer patient. She asked about my work and my family. Over Christmas she put together a care package for my daughter. They did that for the children of all of their patients.
She also always let me keep as much of my clothes on at appointments as I could because she knew I was most comfortable that way. There is a great vulnerability in being in those hospital gowns when you’re already at your most vulnerable. I once got guided out of an MRI room at a hospital into a waiting room full of people and the staff hadn’t even let me close my robe. I just got pushed out there topless to a room of strangers.
BHG: That’s really unfortunate.
Tami: But my surgeon strongly respected my choices. A lot of women feel pressured to have reconstructive surgery when they have a mastectomy. Some surgeons even leave extra skin in case “you change your mind.” I only had cancer on one side but I wanted both breasts removed and she didn’t blink an eye. I told her clearly I didn’t want reconstruction and she told me I clearly knew what I was asking for and that was what she would do. She is required to ask me annually when I go back for check-ins if I want reconstruction but when I say no she drops it. That’s one of a million horrible decisions women are faced to make at that time and having a doctor minimize or challenge your choices isn’t helpful.
BHG: So there was a sense of pressure, but you stayed strong in your resolve. Why did you make the choice you did?
Tami: Most women I know have felt heavily pressured and it’s no small deal—several surgeries, recovery time, risk of complications—especially if you’re going to have to do chemo and/or radiation. So you choose between that and losing your breasts. I thought I’d have no problem living without breasts but I do struggle with it. Not enough to get reconstruction, but I don’t feel nearly as comfortable with it as I thought I would.
BHG: Yes, I’m sure it’s a significant loss. I’m curious about other aspects of your experience. What is the actual scene like during these visits?
Tami: The chemo room in my oncologist’s office is scary and depressing and I wished I had more privacy, but we’re all lined up in chairs next to each other for four to six hours per treatment. I would have loved softer lighting and a less-clinical feel to the buildings—and more privacy in the chemo and waiting rooms.
But, there was something really nice thing that stands out to me. There was this one chemo drug that had to be inserted very slowly by a hand-held instrument rather than the IV bag because if it went in too fast it could blow my veins. So I would always put on headphones and blast some of my favorite Grateful Dead songs to take my mind off it. Sometimes the nurse would ask to share an ear bud and she’d listen along with me. It was really sweet.
BHG: What about other more holistic or “Eastern” touches—were any of those on offer? Were there consultants or coaches providing yoga or meditation or acupuncture or anything like that?
Tami: They didn’t offer holistic services, but I wish they had. I sought them out on my own and did treatments. That was a super peaceful environment. I did Vitamin C infusions and acupuncture there. They don’t take insurance and it was really expensive. My friends raised money for me so I could get the holistic treatments. The acupuncture prevented neuropathy that the chemo can cause in hands and feet.
But there they have soft lighting and warm blankets and they play soft, calming music.
BHG: If you could have changed anything about your experience—besides not having had to experience it (or maybe that’s not even totally the case!)—can you think of anything you’d change? Or anything you wish had been different about the process with your oncologists?
Tami: Yeah, not having to go through it would have been great. I wish I could have had a case manager or something take me through everything from day one. There’s so much you don’t know is going to happen and you’re constantly being blindsided. I wish I had someone assigned to help me from the day of diagnosis to know what was happening, what questions to ask, what I might expect.
I wish I had someone assigned to help me from the day of diagnosis to know what was happening, what questions to ask, what I might expect.
BHG: And what is your status now? You’re in remission?
Tami: I don’t really know. I mean, after surgery there was no evidence of cancer in my body, but I still had to do all of the follow up treatments as a precaution because it had gotten into two lymph nodes. I finished treatment in December 2015. I don’t like the word remission because it sounds like you’re just waiting for it to come back. I’m always looking over my shoulder about it, so in an effort to sound less ominous, I prefer to say “no evidence of disease.”
There’s a lot to be gained from Tami’s story. From emotional support to the more logistical details, there’s always ways to improve the patient experience. Your office layout matters—creating space for privacy means a lot. Offering amenities like warm blankets, ambient music, or softer lighting can create a sense of comfort desperately needed in such a scary time. And many patients seek out complementary therapies and could benefit from having them readily available. Think about additional staff. Could an extra employee—either clinical or non—help promote a more thoughtful and engaging patient experience? These things make a difference.
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