When you are tasked with choosing a hospital for your cancer treatment, my advice is to weigh your options and narrow it down to your top three, get a second or even third opinion, pick one and trust your decision.
Weigh Your Options & Narrow It Down to the best hospitals that specialize in your cancer.
With such a serious diagnosis, it's really important to weigh your options. I recommend getting multiple opinions, especially if your cancer is on the rarer side. In this case, googling is allowed – look up what cancer centers/hospitals have the best ranking for your type of cancer. You’ll want to make sure that your hospital has the ability to appropriately treat you, and that it has doctors qualified and experienced in treating your type of cancer. Of course, location of the hospital is also important. You might have a great cancer center close by where family and friends can provide much needed support throughout your treatment and recovery.
You might also need to consider which hospitals are currently engaged in research about your type of cancer or have new and promising cancer trials that you might qualify for. A good team of doctors will help you navigate these issues and stay abreast on new cutting edge treatments that you might qualify for during treatment or in the future. One thing I learned through the whole process is that you don’t just have an “oncologist” when you have such a rare cancer. I needed a whole team of uber specialized doctors to aggressively treat my cancer and give me the best shot at long-term survival. If this sounds like you, I’d recommend meeting with each one of the doctors on your potential team and finding out how they will collaborate with each other to come up with the best treatment plan for you.
Get a Second Opinion from the appropriate department at one or more hospitals.
You might wonder if there is even enough time to wait for a second opinion, and this is very case specific. Of course, there might be some treatment decisions that you will have to make right away (like the decision to surgically remove the tumor in my case), but there might be other decisions that you have more time to consider (like I was able to consider my radiation plan). Getting a second opinion has the benefit of making you feel more secure about your treatment plan and overall outcome. I know it helped me when I heard multiple meningioma specialists at my top 3 hospitals (University of Miami Sylvester Cancer Center, Johns Hopkins and Mass General) all agree that they would recommend the same treatment plan. Put in normal people terms this meant I needed:
First: surgery to remove the tumor;
Second: aggressive radiation therapy to kill any remaining tumor cells (if malignant);
Third: aggressive monitoring for the rest of my life.
Begin treatment and trust your decision.
Surgery: Every doctor I spoke to was in agreement that the tumor had to be removed immediately so we found the BEST neurosurgeon within driving distance and scheduled the surgery. The surgeon is so important! I cannot emphasize this enough! So much of my prognosis depended on whether the surgeon could perform a full resection of the tumor. If he left even a little piece of the tumor behind, my survival changes dimmish drastically. If the surgeon does his or her job correctly, then god willing this should be the first and last time you would see them. From this point on, you are in the hands of your oncologist, neuro-oncologist, radiologist oncologist – you get the idea.
Radiation plan: Once the pathology report came back, we learned everything about my diagnosis, prognosis and available treatment options. At that point we were able to decide on a treatment plan, radiologist, radiology oncologist, and the type of radiation I would receive (photon vs proton). At this point I was really happy with my medical team and it made sense to stay at Sylvester for the radiation therapy. However, some people choose to do the surgery at one hospital and complete their treatment at another hospital. This is completely fine and it really comes down to personal preference and where they have the best technology and doctors.
Aggressive monitoring: Once my radiation treatment was complete, we discussed a monitoring timeline and to be honest, I don’t remember it! I just know that I have to go every 3 months for an MRI, until Dr. Mellon says it’s okay to switch it to every 4 or 6 months..
Choosing a hospital and your specialized team of doctors can be really overwhelming, especially because you are also dealing with the heavy weight of the actual diagnosis and everything it carries with it. You will need your support system for this process. I suggest having one person you completely trust at every appointment because I zoned out whenever the conversation got dismal, and I couldn’t have done without my husband and my dad listening, commenting, questioning and in some cases, deciding on my behalf.