On being your own advocate

When I was diagnosed with lymphoma in August 2003, I got plenty of good advice from a number of people who’d dealt with cancer as well as from physician friends.

And the gist of the advice always came down to “you must be your own advocate.” In other words, don’t just hand over the care plan to your physicians and hope for the best.

Be proactive. Because no matter how great the physicians and the institution you are dealing with, and the physicians at Sloan Kettering have been superb, and the institution is top notch, plenty of things can fall through the cracks.

Here’s what I mean:

·         If at all possible, go to all meetings with physicians with your spouse or a good friend who will be able to follow through with you. That’s a second set of set of ears to pick up on anything you might miss. It’s easy to miss stuff the doc says! Have questions written down ahead of time, and then take notes when necessary in your meetings. You are virtually guaranteed to think of something you should have asked your physician 20 minutes after you leave the building. If it’s really important, try to reach his/her office on the phone; otherwise save for the next meeting.

·         Make sure you are dealing with a sub-specialist. He or she will determine the care plan. If you have cancer of the lymph nodes, you want to see someone who only deals with lymphoma. If you have colon cancer, someone who only does colon cancer. Etc, etc. Medicine is so highly specialized that you want to see the sub-specialist. It’s not enough to see an oncologist – you want the oncologist who is 24/7 dealing with your particular cancer. The oncologists at MSK in Sleepy Hollow are general oncologists; that’s why Dr. Wasserheit, referred me to Dr. Zelenetz at MSK in Manhattan. She said, “I am not a specialist in lymphoma” and sent me to the head of lymphoma services.  A couple of my physician buddies had not heard of Dr. Zelenetz, but they checked him out quickly enough and got back to me with the word that he was one of the top lymphoma guys in the world. And it was his opinion that we should adopt a “watchful waiting” approach to my lymphoma – there was no need for therapy until a problem manifested itself. So I got two years treatment free, where a general oncologist would almost certainly have started me on chemo right away. (I need to point out that I also spoke informally with two non-MSK oncologists after seeing Dr. Zelenetz. They agreed with his assessment.)

·         Get copies of all scans, lab reports, physicians reports, etc, etc. Always ask for copies of the actual films if you are having a CT scan, for example. The radiology department can easily make a copy for you at the time they are making the prints for themselves (you may have to sign a simple authorization). It’s a little trickier to go back later for your own copy – more paperwork and possibly a fee. But you are entitled to all these reports and scans – they can’t tell you “no”.

·         On crucial pathology or radiology always try and get second and even third opinions. In my opinion the pathologists and radiologists are the current kings of medicine because they are the people making the diagnosis! Once the diagnosis is made, the care plan protocol is pretty well laid out for the rest of the medical team. But the diagnosis must be spot on, and it frequently is not clear-cut! In my case, the pathology department at Phelps sent the excised lump in my neck to Mount Sinai, where the diagnosis of mantle cell was made. Dr. Wasserheit at MSK (Memorial Sloan Kettering) in Sleepy Hollow assured us that the Mt. Sinai pathologist was “superb”, but I still had slides sent to MSK for another opinion. They concurred with the Mt. Sinai diagnosis that I had mantle cell – the “indolent” version. I always have my CT scans reviewed by a second radiologist (a good friend of mine who along with his partner have been hugely helpful over the past two years!). The radiologist who does the initial reading is very conservative. That sounds good, but you don’t want to have unnecessary tests done for things that aren’t really issues! So I am lucky to have the back up.

Even at the best institution, it’s easy to have things slide through the cracks. For example, it was only last Thursday that I found out I needed to have CT and PET scans before moving on to the next chemotherapy regime. I called Dr. Zelenetz office to say, “What’s next? I am coming up on my fourth and last session of RCHOP so has the ICE regime (the next chemo protocol) been scheduled?” and the secretary asked me something like “are your scans scheduled?” “Well no, this is the first I’ve heard I need scans.”  So it’s just as well that I called!  So Wednesday before my chemo session, Dr. Caron in Sleepy Hollow wrote the prescriptions for both scans and they are scheduled for this coming Monday and Tuesday.

So Sloan Kettering is great – if someone told me they’ve just been diagnosed with cancer, that’s where I’d tell them to go – but you’ve still got to take responsibility. Be your own advocate!

Anyone reading this, who has been through cancer and has something to add, please do leave it in the comments section. Or any questions leave it in the comments section or email me.