Navigating Healthcare

But then once I went for the second opinion, and you know I ended up staying with that team of doctors. It was, I don't want to say easy or simple, but it was very convenient, having them all under one roof. Like, I cannot emphasize enough what a, I hate to say the word ‘blessing’, but what a blessing it was to be a part of, like, a cancer center like that.

Yes.

Because again, going back to those Facebook groups and stuff, of having, some people were commenting on having to transfer records from one practice to another, or all the different bills coming in from different areas and things like that. So, for me to have my team of doctors all pretty much in the same building and they were all able to access my records. There was none of that back and forth, and trying to get things - copies of things. Even bills were all consolidated, which is something like you don't want to think about during cancer treatment. So, you know, that was awesome. I know even the things like they would try to like schedule my appointments like, together so I wouldn't have to miss that much work during it. So, they'd be able to see I had an upcoming appointment with my plastics nurse, that I could do like my pre-surgery bloodwork at that time and things like that. So, I don't know how I would have held it together if there was a lot more effort needed on my part to coordinate all of that.

So, the amazing thing is, you have the reconstructive team and the radiology team and the oncology team. And they're all different. But they're all working for you. And so, they were super transparent, which I appreciate. That's what I wanted. I wanted all options, the good, the bad. And then we still were in control. We got to make those choices. And what I liked was that, you know, they would come in and she'd say, “[NAME], we sat down on what to do with you because you're a little bit different, we don't all agree. And I'm going to tell you what our plans were and why some of us liked this one and why some of us like this one and what we didn't agree on.” And so, we would talk through all of it. And that I liked. I liked the super transparency, talking about what was the positive and negative to these two plans, and then, “what do you want to do? What are you comfortable with?” So that—that I really like. They were just really honest and open. And they took control when they needed to. But then they also knew like we ultimately had the decision on what we wanted to do.

So, all of them were very-, they were the best of their profession, so to speak, and because we communicated, like, they know I'm not into just like needless medications and treatments. Like, give me acupuncture. Like, I'm a Chinese medicine person, and acupuncture, which has been incredibly, incredibly helpful for me for the breast cancer. Pre-surgery,and post-surgery in terms of pain management because lupus and fibromyalgia carry a lot of pain and ache, and then coupled combined with the breast cancer surgery, and just the diagnosis. It-, it helped me tremendously whenever I could do it. And they got on a team. There was emails exchanged, phone calls because of the surgery, and any potential complications. I also have a clotting factor with my blood. So it was—each had to sort of follow the other and very closely.

And I also was given a nurse navigator, who is amazing. If practices don't have this, they should. She's a trained nurse, but she is also someone who you can call with questions, help you through the process. And I was lucky enough that my nurse is also a survivor.... But just having that person that I could call at any time, who can email, call, answer all my questions, having something like that was outstanding.

Well, I was going through a divorce. And so, there was a time period that I was still on my ex's insurance in [LOCATION]. And so then, yeah, I had to have everything switched over. The nurse navigator in [LOCATION] took care of everything as far as switching everything. And I didn't have the greatest experience with the nurse navigator in [LOCATION] because it was like she wanted to be helpful, but it was also like she said, "Trust your doctor." Which I get, but at the same time, it's like you are supposed to be listening to the patient's concerns. And I get that, probably, a lot of cancer patients are frantic, worried and concerned. And your job is to ease their mind, but at the same time, you really need to listen to what their concerns are and talk to the doctors.

But what was really lacking was there's the coordination of care. You know, the surgeon talks to you about this, and then you go to the oncologist who talks to you about this piece, and the radiologist talks about this piece. But there's, for example, the surgeon, I guess is the one who was supposed to talk with me about scar tissue. Well, you get released from the surgeon a month after surgery. And I think they gave me a handout about scar tissue, and I had to do some exercises. But it would have been better if somebody was following up with me and giving me some more specific information because I think I probably could have had less scar tissue. But that's not the oncologist's job, even though I have a fantastic oncologist. I love her, but that's not her job. And so, there's this kind of lack of continuity there. But I would say yeah, emotionally, there's nothing there to support you. I mean, I think, yeah, there's nothing there to support you.

I became my own advocate for my own healthcare. I, yes, you have all these people. But it's sad it's run like a business. And it's sad. It was nothing personal. I didn’t, some of the people that I encountered, yes, they were - I had a little connection. But for the most part, I had to carry the weight myself. I was the middle person to get these two locations the information. And it's because the two were not communicating effectively, and I had to relay information between the two. Not fun.

When I got my third diagnosis, I said, “I can't do this myself. Somebody, I need help.” And I picked up the phone and I called. And I said, “there's got to be a psychiatric department, there's got to be support somewhere.” And, I left a message on a voicemail. And I was not called back for days. And when I was, they said “There are no bookings. We're completely booked. We can't see you.” And when I switched hospitals, they were so much about the support. And I can go see --they assigned a social worker to me. And she came to every single one of my treatments. And she called me once a week. And she said, “Do you want to see me?” She talked to my kids. She talked to my husband. She talked to my mother. It was just so helpful.

I have my doctor, who is the breast cancer one; my oncologist, the urologist, the neurologist about my head. I have like five specialist doctors, and they are all very, very nice people. Very professional, very focused on being able to help people. But like I said, they know more about American people because we are in the United States. But they don’t know many times—how we Latinos react, or sometimes how we tend to be different.

Tengo mi doctora que es la del cáncer de seno, mi oncólogo, el urólogo, no, neurólogo, por lo de la cabeza. Tengo como cinco doctores especialistas y todos ellos muy, muy lindas personas, bien profesionales, bien enfocados en poder ayudar a la gente. Pero como les digo, ellos conocen más sobre la gente americana, porque estamos en Estados Unidos. Pero no conocen muchas veces cómo reaccionamos los latinos o a veces tendemos a ser diferente.

It had been 15, 16 years since my first bout. And then the guy who did the biopsy said, "You know, there is nothing-, there is nothing weird or abnormal about this, so, you know, we'll let you know." And by this time, it was right before the 4th of July, so this-, all these different appointments had taken up the month of June, and now it was like right before the 4th of July. He said, "Well, with the holiday, it'll probably take, you know, 5 to 7 days," because the 4th of July was thrown in there. So, OK, of course, it went to the full seven days, and at the end of the seven days, by 3 in the afternoon, I said to my husband, "I can't take it anymore. I have to know." And so, at 3 o'clock, I started calling because I thought, I can't let it go till 5 o'clock because-, because then it's another day, you know? And I thought, I have been so patient and-, but I really need to know, and I can't do this anymore. And so, I started calling, and there, I mean, it was just a fiasco, and I called the radiology clinic. She opened my chart and said, "Your result is in. I can see it in front of my eyes, your result is in, but I can't tell you the result." I said, "I know you can't but who can?" She said, "Well, call your primary care." Primary care said it wasn't in their chart. She said call your oncologist. It wasn't in my oncologist's chart. It didn't come up on my chart for my physicians. So, it got to be 5 o'clock and after, you know, two hours of this panic and frustration, I was like, okay, I'm going to have to wait another day. And I just was-, you know, just a heap on the floor, basically. Thinking I can't do this anymore. And so, at 7:30 in the evening, my oncologist called which at that point, it was very nice of her to call at 7:30 at night and it was nice that she, you know, dug deeper to try and get—I because I was telling them it's in my chart. The radiology person said it was in my chart, so how can you not see it? Why can't you go get it and find it? Make some phone calls, you know? So, she had done that, and she called me and said, "Yes, your breast cancer is either something—there's something we didn't get the first time, or it's something new, and we will never be able to tell you which of those two it is, but it's there."

But I didn't know who to call, because the instructions were so terrible. And when you called [HEALTH SYSTEM], you know, you get their general number, and you don't get to a person. And that was very distressing, and that was like, I went on the Facebook group, and I'm like, “OK, this is happening and I don't think it's normal. What should I do?” And they're like, “You should call the number they give you.” I'm like, “I don't have a number.” So, I mean, things were done badly and I actually do need to give some feedback to [HEALTH SYSTEM] about, you know, here are things.

The other thing that went badly is this nurse coordinator. They don't give her a phone. She has no phone number. She will- she operates between three different clinics but she can only answer emails. And then it takes her two days to get back to you. I didn't really feel like there was any coordination going on at all.

Things need to change in the way that we take care of people with any chronic disease, and I view cancer as a chronic disease. We are not doing it right. We are not doing it optimally. We are not supporting women as they go through it. I mean, that nurse coordinator without a phone. What, even? What on earth was the point of that?