My problem with Hopkins

Back in my entry from April 30, I talked about how we went about trying to get second opinions from some top research hospitals before starting Meg on her first line of treatment.  I mentioned how I was calling Johns Hopkins every day, but said that was a story for another post.  Well, this is that post.

We ended up seeing an oncologist at the Kimmel Cancer Center at Hopkins, but not until January, when we had a feeling that Meg’s treatment wasn’t working anymore.  We liked the doctor we met there; he talked about a bunch of treatment options and clinical trials.  There is research going on at Hopkins that isn’t being done anywhere else, and they are leading or participating in many trials.  We also communicated over the phone with two other oncologists from Hopkins, and they seemed like really good doctors to work with.  In fact, even after Georgetown and Sloan Kettering said there was nothing else that could be done, the Hopkins oncologists were still trying to come up with a treatment plan.  Meg never actually got treated there, so I can’t speak to what it’s like being a regular patient at Hopkins and dealing with the large volume of people that are in and out of there every day.  But, if someone living in the DC area asked me where he or she should go for a second opinion, I would recommend Hopkins without hesitation.  They seem like knowledgeable, caring doctors, they are plugged into the latest treatment options, and it’s close enough that you could actually commute there for treatment if necessary. 

So now that I’ve said all this good stuff about Hopkins, what’s my problem?  It’s the fact that we weren’t able to get a second opinion from them before Meg started treatment, because I couldn’t get through their referral office to talk with an actual doctor or nurse.  Before I go into more details, let me relay my experiences with the other places that I contacted.

I called Georgetown on the morning of Thursday, July 5.  We still weren’t sure what type of cancer it was at that point, but they were leaning towards colon cancer. I can’t remember if I called the main Lombardi Cancer Center number, or a specific number for the Gastrointestinal Cancer department. But I was immediately connected with a nurse navigator within that department.  She took our information, emailed me a few forms, and followed up a few hours later letting us know that we had an appointment for the following Monday (4 days later).   She clearly understood the urgency of our situation, and made an effort to fit us in as soon as possible.

I called Memorial Sloan Kettering in October.  Megan was having a good response to her chemotherapy, but we wanted to make an appointment for another opinion there.  We had gotten the name of a surgeon to call from one of the stomach cancer foundations, so I called her office directly.  The woman who answered the phone explained that I needed to call the main referral number, and they would collect our information and pass it to the doctor’s office.  So I did that.  And I was impressed with the process - the referral office was very organized.  It seemed like there were quite a few people working there, but I was connected with one guy specifically, and I talked with him several times over the next few days.  After sending him a fax, I would call a little while later to check that he received it.  He would have it on his computer, and then he was able to send it directly over to the doctor through an electronic system.  The surgeon reviewed Meg’s files and said she didn’t see any reason for surgery, and referred us over to a medical oncologist.  He gave a quick opinion (relayed to me through the referral coordinator) that Meg’s treatment was looking good and he didn’t see a need for us to travel up there at that specific moment.  When I pressed with a few more questions, he said that we could make an appointment if we’d like, and we did that.  After we had seen him in person, we were able to get remote opinions without having to travel back up there.  I would fax over some updated scan results with a note, and I would get a call back within a day or two from the oncologist.  This was really convenient, and I just needed to make sure I was ready with all my questions when he called.

In addition to Georgetown and Sloan, we also got another quick opinion from an oncologist at Massachusetts General.  I had found a trial online, and a family friend that works at that hospital emailed the oncologist that had led the trial.  The oncologist was actually traveling, but responded within an hour and referred us to his nurse. I left her a message, she called me back an hour later, and we talked about what made sense for Meg’s situation.  I had one more question for the oncologist about the chemo regimen, and she followed up and got me answer within a few hours. 

Now back to Hopkins.  I looked around on their website to find the right number to call.  No matter what cancer I looked at, every webpage had the same number listed when you clicked on “Request an Appointment.” So I called that number on July 2 (a Monday).  An automated system answered, and I was told “For Medical Oncology press 1, for Radiation Oncology press 2.”  Huh?  I had no idea which number to press.  There was no other option, and I didn’t know what to do, so I actually hung up the phone.  I thought, "Why do I have to decide between medical oncology and radiation oncology?  Don’t I want both of them? My wife just got diagnosed with cancer, and I have no clue what the difference between those two things even is!"   This wasn’t starting off too well.  I thought about it for a few minutes and called back.  Medical oncology seemed a little broader; radiation oncology seemed very specific.  So I pressed 1. 

Then I sat on hold.  And I continued to sit on hold.  For over an hour.  Seriously.  This was the first big hospital I was calling, so I thought maybe this was the norm.  Finally, I got frustrated enough that I just hung up and called again.  This time someone picked up within two minutes of being on hold.  I could say maybe that was a coincidence, but I had this situation repeat itself several times.  Sit on hold for 15 minutes, hang up and call again, and then someone answers right away.  Obviously their phone system is not ideal.

But all of that would’ve been forgiven if the person that answered the phone was helpful.  I told them the details of Meg’s situation, just like I told Georgetown a few days later.  She had been diagnosed with cancer, the local hospital had run a bunch of tests, but they hadn’t been able to figure out exactly what it was yet.  I said that I wanted to get my wife into Hopkins and have their doctors look at her case.  The woman flatly responded by telling me that she could not make an appointment until we had a specific diagnosis.  Hmm.

One year later, I can see why she said this.  At least in theory.  The oncologists at our community hospital dealt with all types of cancers.  Oncologists at the large research hospitals typically have very narrow specialties, and the departments are broken apart by cancer type.  So she needed to know who to direct us to.  Even still, I don’t think that “I’m sorry, I can’t help you yet” is an acceptable answer.  She literally told me that we had two options.  We could either wait until we get a specific diagnosis and then call back to make an appointment, or we could check Megan into the Emergency Room at Hopkins so that they could run all their own tests and make their own diagnosis.  Meg had already been through a battery of exams, and her condition was rapidly deteriorating.  To check her into an ER and make her redo all of the MRI’s and CT scans and blood work and doctor's exams seemed absolutely ridiculous.  So that was not an option.

I really wish that I could’ve spoken to a nurse at that point.  From my experience, if they would have connected me to a nurse navigator, she probably could’ve been much more helpful and made a determination about what type of doctor we should’ve made an appointment with.  But being a novice, I didn’t know what to ask for, and I didn’t think there were any other numbers I could call. 

The next day we got the word that it was likely colon cancer.  I called the woman back, said that it was now diagnosed as colon cancer and explained the urgency of the situation.  She gave me an appointment for about two weeks out.  I asked if there was anything sooner, and she said no.

That Thursday (two days later) we found out it was gastric cancer.  I called her back again, asking if there was any way we could see someone any sooner, as the local doctors were urging us to start chemo the following Tuesday.  She gave me an appointment with a different doctor, and said the earliest possible appointment was the next Friday.   At this point I was getting really frustrated.  I called her back the next day and asked if there was anything else that opened up.  She now told me that if I faxed copies of the scans to her, she could give them to the nurses and get a quick opinion from a clinic.  I sent her two of the scans that day, and then we received another one over the weekend and I sent it to her on Sunday night.  My gmail has four emails sent to her over those few days, with no responses from her.  I tried getting in touch on Monday, left a message, and didn’t get a call back.   We got the second opinion from Georgetown, Meg started chemo, and we forgot about Hopkins for the time being.

Four months later, we saw the oncologist at Memorial Sloan-Kettering.  He said he would actually classify Megan’s cancer as esophageal cancer.  We hadn’t really heard that before.  So I started looking into esophageal cancer, and found my way back to the Hopkins website.   I found this page:

http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/esophageal_cancer/diagnosis_treatment/

On that page was this paragraph:

Same-day consultations with a team of esophageal experts

The need for immediate, effective treatment is why the esophageal cancer experts at Johns Hopkins created a multi-disciplinary clinic for esophageal cancer patients. Patients, both those already diagnosed and those who may have symptoms, can call in and talk to an esophageal cancer care coordinator who can direct them to their first steps, whether that is diagnosis and staging or an appointment with the multidisciplinary team. Patients can also find out about available clinical trials during that call.

Down towards the bottom of the page, there was a number to call.  It was different than the number that the “Request an Appointment” link on the right side of that very same page gave me.  So I called this new number, and I was connected directly to the department.  I gave the woman who answered the phone a little bit of information, and later that day I received a call back from a nurse.  At that point, Megan’s situation wasn’t urgent, so after talking with her, we decided it made sense to just schedule an appointment with an oncologist and take things from there.  However, I believe that if I had talked to her during that first week, she would’ve gotten Meg’s information in front of the right doctor immediately. 

I think their system really failed us. There was a reasonable chance that Hopkins might have had a trial that could’ve been an option for Meg back in July. (Now, there’s no reason to necessarily believe a trial would’ve been better for her than the treatment she received - you can check the April 30 post for more info on this). But I tried to get one of the top ranked hospitals in the country to review Megan’s case, and I felt like I was stonewalled. And I recently heard from someone else who tried making an appointment with the same oncologist that we saw, around the same time that we saw him. But she was told that he does not see stomach cancer patients, and she got really frustrated knowing that they were wrong. So I don't think my experience is completely unique.

I learned that sometimes, instead of calling the main phone number that they display in large print, you might be better off calling a doctor’s office directly. All of the nurses I spoke with on the phone were really helpful, and by and large, the doctors seemed like they tried to respond pretty quickly. It’s very disappointing that patients may not be getting a much needed opinion just because someone in the Hopkins referral office won’t connect them with a nurse. So call directly if you feel like that is happening to you. The large cancer centers have the doctors and nurse coordinators listed on their website, and they usually have a direct office line listed. It just might take a little digging to find it.