Road Trip To Rosswell

Yesterday we went up to the Rosswell Park Cancer Institute to get a second opinion on the diagnosis and the treatment plan. It may seem like closing the barn door after the horse has left seeing as I had already started treatments but we still felt like we should have confirmation on the plan.

The trip up was pretty quick. It took about 2 and a half hours. We were able to park at the garage right in front of the main building. We went in to register and saw at the information booth they would validate parking for patients so you get a discount. We didn't have the parking ticket with us but the stamped a slip of paper for us to use. We could see right then that they had a more easy going approach. Parking for patients for the day was only $3.

When you check in they give you a pager so you don't have to wait in line for admissions. They page you when it is your turn. We only waited about 5 minutes and then we were called. After going through admissions we had plenty of time so we went up to the cafeteria. They had a very nice setup and it was reasonably priced.

We were still a few minutes before our 1:30 check in at the head neck and throat area so we waited in the lobby. They had mission still furniture to sit in and someone playing a grand piano in the main entrance way. Definitely a different sort of place.

At 1:30 we checked in for our appointment. The waiting room was a bit small and was also shared by the dental center. At that point we wondered what the appointment at 2:00 would be like. We were called back early and when we went through the doors you could see that the waiting room wasn't an example of what the facility was like. It was a large hall was with one long counter type setup on one wall and several treatment rooms on the other. We ended up starting at 1:20 with a nurse that did the normal check the vital, medicines and such. While we were with her we asked about options with the PEG tube. One thing they do is tape it up but that will get rather painful constantly taking the tape off my stomach. She asked another nurse about it and she had heard about a type of belt / pouch setup. To make a long story short during the 2 plus hours we were there the nurses searched for and found the information on the pouch for us to take back home. They also showed me a sample of the PEG tube.

At around 2:00 we were shown into an examination room and met with the nurse practitioner. At first I was thinking wait a second we drove all this way and we are not meeting with a doctor? Not too worry. First she had worked at Rosswell for 8 years in a different department and was there to do some more detailed preliminary exams on the cancer. She had also looked at the various test results while the nurse was examining us. I asked how many cases of nasopharyngeal cancer they say up there and it turns out to be a few a week. After she completed her exam the main doctor came in. He used a scope to check out the sinus area. He also spent as much time as we needed discussing the cancer, our treatment plan, what happens after the treatments are over. At no point did we feel rushes or hurried. We even chatted about youth hockey. I mentioned the concern about dry mouth and he went out and found the doctor that specializes in that and had him come in and meet with us. I was amazed. He also had all the time we needed. After that he had a question on the chemo so he rounded up their medical oncologist to meet with us. That was also very useful.

All in we were there for about 2 and a half hours. At no point were we waiting more than a few minutes in between meeting with everyone. They all had time for all of our questions and were able to offer lots of advice on how to deal with some of the symptoms and also some good advice on things to during radiation. For example both the head doctor and the specialist in dry mouth and swallowing suggested that I try to have at least one sip of water every 5-10 minutes while awake no matter how much it hurts. This keeps the area in the throat from sticking together. Even if I am no eating I need to be swallowing. They also had some other great advice as well.

Overall the treatment plan I am on is the correct one. The people that we are working with are great but at times it feels like a disjointed approach. Meeting with the people at the cancer center was very useful not only to validate the treatment plan but also to get a handle on having an integrated approach. I would recommend that anyone who is diagnosed with cancer also get a second opinion from one of the major cancer centers if you can. The medical oncologist at Rosswell put it best. He said that they treat the patient, not just the diagnosis. It truly felt that way. We never felt rushed at all and they volunteered a lot of information that we didn't even thing to ask for. Everyone there said that if we have any questions we could call up there. Also I have a follow up appointment in February once the chemo is done. This put to rest one of my concerns about what happens after treatments are complete.