Driving into NYC for the first time ever – on the way to Memorial Sloan Ketting

When the news of the diagnosis was received, we knew that we needed to proceed with the appropriate treatment without delay. While we did not fully understand the extend of the disease until after the surgery, we still believed that we were taking the most appropriate steps to cure the cancer.

We did not start at Memorial Sloan Kettering, we started with a local Urologist. Following the initial pathology and based on the recommendation of the Urologist, we agreed to proceed with a partial cystectomy (partial removal of bladder) instead of a radical cystectomy (complete removal of bladder). The doctor was reassuring of the prognosis and the pathology suggested that the profile of the tumor was consistent with cases when a partial cystectomy may be appropriate. Time was also of essence, so while we considered going to NYC for a second opinion, we knew that would delay the treatment. We needed treatment to start promptly without additional delays that may have allowed further spread of the cancer.

The decision to go to Sloan Kettering was prompted by the reoccurrence of the cancer, it reoccured less than six months after he completed a very aggressive chemotherapy treatment with MVAC. I recall that night, David was admitted to the hospital and I wept continuously. He shared the room with another man, a diabetic patient that was loud, obnoxious, and inconsiderate to everyone around him. He must have thought he was in a five star resort based on some of his request to the hospital staff.  Listening to him whine about such minute things was maddened as we faced a very aggressive cancer that had progressed significantly. It was that night that I decided that we are going to an institution where everyone was dealing with similar health issues (this not does undermine the severity of diabetes) but rather the need to be in a hospital that specialized in cancer knowing that we could be facing a life or death situation.

Our Oncologist was very supportive of the decision, he worked at Sloan Kettering previously. However, getting an appointment at Sloan Kettering was not an easy process. The waiting time to see the desired Oncologist was about 6 to 8 weeks. Our Oncologist was also very familiar with the Oncologist and tried to facilitate the appointment. Time was of essence, we were relentless, we could not wait that long. I called several times to check on cancellations. One day I was so overwhelmed and I called crying and practically begging for an earlier appointment. Later that evening, we got the call and had our first appointment the next morning.

It was a horrible appointment, I still resent the Fellow we talked to before the Oncologist. He left David feeling very defeated. He was arrogant. He said we will have done things differently at Sloan if we had come earlier…REALLY. He said the disease was not treatable. We eventually saw the Oncologist, while his tone was better, the overall message was still not optimistic. He had already talked to our local Oncologist about the next course of treatment and recommended that we stay local considering that it involved radiation treatment 5 days a week for 6 weeks.

At the conclusion of the radiation and chemotherapy (carboplatin and Taxol) we transferred treatment to Sloan Kettering, the Urologist reviewed his records, scans, examined inside the bladder and confirmed that the surgery would be feasible, we were overjoyed. At the pre-surgical consultation, he changed his mind – no good reason other than he reviewed the CT scans. So the surgery we were hoping for to remove the cancer was no longer possible – we were devastated.

Although surgery was no longer an option, one of the benefits of staying at Sloan Kettering became their pain management expertise. In 2013, the pain started becoming more debilitating and this is where I believe Sloan Kettering did the best job. After trying a series of oral pain medicine, the most effective pain control was the intrathecal pump, an internalized reservoir that administered significantly lower doses of medication and provided better pain control.  We were reluctant to have it in at first but we were relieved after it was done because it afforded David a better quality of life.

Additionally, going to Sloan Kettering simplified managing the disease. All the Specialists we needed (we saw a lot) were in one place and the staff coordinated the appointments. We could fill prescriptions easily when onsite, and they were generous with providing medical supplies that we needed at home.

One drawback of going to Sloan Kettering was the commute. On average, it took 1.5 to 2 hours each way and sometimes we went there 3 to 4 times a week. I did the driving, this was truly shocking because I never thought I could drive in NYC. It was not long before I became an angry city driver at times as I hustled with the cab drivers and other NYC drivers. The biggest issue with the commute was that the drive compounded any pain or discomfort David was experiencing. Lastly, whenever he had an emergency, since we could not get to Sloan Kettering in a hurry, we had to resort to the local ER.

I found Sloan Kettering to be an efficient, well managed hospital, however, the downside was that at times there was a lack of compassion from some of the doctors and some were blatantly arrogant. Contrary to the nurses who also seems so compassionate.  Also, each time we saw a new Doctor, they made us repeat everything in David’s medical history even though they were readily available in their system. Perhaps it was done to be diligent but for us, it was strenuous because recounting his medical history was a painful reminder of all the disappointments as the disease progressed.

The lack of compassion was further confirmed following David’s death. After managing his care and considering the frequency of interactions and visits, I would have thought the office of his lead Oncologist would have sent a card or a note to express condolences but this never happened.

We do not regret our decision to move to Sloan Kettering and I do not regret the decision to start with an Oncologist that did not work at Sloan. The only decision I have question several times in the past was whether the initial surgery was the right approach. I sometimes wondered if the outcome would have differed if the bladder was completely removed instead of the partial removal. However, considering that we later learned that at the time of surgery that the cancer had spread to the lymph nodes, I believe it is very unlikely that a complete removal would have changed the progression since the cancer had already spread behind the bladder at time of diagnosis.

Overall, I expected that going to Sloan Kettering would allow us access to any treatment option that may be available including those that are still being investigated. When we knew we could not remove the tumor, our hope was to find a treatment to keep the tumor at bay long enough until a cure could be developed in the future. Sadly, although bladder cancer is the 7th leading cause of cancer in this US, awareness and research seems significantly low. One of the standard first-line treatment is MVAC and it has been around for almost 20 years and there has been little improvements with the few other treatments options available.

This is one of several posts that details our experience with bladder cancer. A concise summary of the overall experience can be found in the blog post titled “breaking the silence”.