Dr. (Insert Your Name Here)
My last post, dealt with how long term survivors of cancer, in particular, Hodgkin’s Lymphoma, look at their survival longevity, or rather, the shortening of their mortality, due to the late developing side effects from the treatments that gave them remission. Though I would not normally like to do two “heavy” posts pertaining to survival in a row, I need to publish this post, while my memory is hot.
I was attending a Zoom conference yesterday, as I often do. The guest speaker was an oncologist who was going to speak about long term side effects. I must admit, I did not pay attention to the details of the speaker prior to the Zoom, just the topic. In just moments, I learned that I had a lot in common with the good doctor, most notable, he was a long term survivor of Hodgkin’s Lymphoma himself. Compared with other Zoom conferences I have attended, this was the first time in a long time that I can recall anyway, hearing of an oncologist speaking from personal experience. If I am being honest, I really do not know any doctors personally who have had to deal with cancer, or at least admit it. I was anxious to hear what he was going to say.
The doctor continued his introduction. Turned out, we had other factors in common with each other, especially when it came to Hodgkin’s Lymphoma. He was treated back in 1989, the same as me. He was a few years younger than I was, which would still make him a few years younger than me now (though you would not be able to tell that from looking at both of us). We were both survivors of over 33 years. Our treatments were similar in that we both had radiation treatments, but his chemotherapy regimen was partially different than mine, he getting only half of the chemo drugs that I got. There were other facts of similarity, but you get the idea. We had a lot in common.
About half-way through, the doctor finally got into long term survival issues. Again, he spoke of things that I was already aware of from particular body systems and the risks faced for complications and secondary issues. And then he dropped this bomb on all of us attending:
“You need to advocate for your own care.”
If you have followed “Paul’s Heart,” even just recently, you know my efforts to bring attention to the need for survivorship care for those of us treated twenty, thirty, forty, even fifty years ago. Some of us have been lucky enough to find doctors who have learned how to care for our particular issues, others sadly have not. But as each day passes, all of us hope that we get one step closer to a universal recognition of, and protocol for, dealing with late side effects caused by treatments, radiation and/or chemotherapy, for Hodgkin’s Lymphoma. And as one who has access to the specialized care necessary, I want to believe, that there will come a time, that oncologists all over, will finally be honest and open with their cancer patients, and tell them the truth, “yes, we can get you into remission, but you are going to need to be followed up for the rest of your life, not just to make sure that your cancer stays in remission, but should you develop any late side effect, it can be dealt with sooner than later.” Sure, not everyone develops these issues, but enough do so to warrant the protocol for lifetime follow-ups. There are enough of us long term survivors to prove this need.
As if stuck in a time loop, I “heard” in my head, the doctor repeat and repeat, “you need to advocate for your own care.”
Nope, even though it was just a phrase now stuck in my head, no matter how many times it played, it never got better hearing it.
Now, there are some in our survivor/patient peer social media groups who have been on the receiving end of me urging them to “advocate” for themselves in pushing for a more urgent response, or quicker scheduling, or to find an answer for what is creating a health issue, not typically found in someone of a certain age with no other attributing factors. Don’t let the doctor tell you they have no idea. Make them figure it out, or at least point you in a different direction to help you find an answer. Typically, I encourage fellow survivors, a primary care doctor is likely going to be a good advocate for their patient, as they know the patient best. And when it comes scheduling, you try to schedule a nuclear stress test versus having the doctor make the call instead. See who gets scheduled sooner. I will give you a hint. The only reason I am alive today, is because my primary doctor of now nearly forty years, made that call, fifteen years ago, second week of April, that three days later, surgeons were saving my life performing emergency open heart surgery, because of late effects I had no knowledge I had. If I were to have made that call, at the young age of 42, that test would not have been scheduled at best, until three months later, or longer if I had to go through the appeal process, because that test made no sense for someone my age. But you get the idea.
“You need to advocate for your own care.”
The doctor went on to explain what he meant, exactly what we survivors have been doing for decades. We, the patients, have had to learn the potential side effects that can come up on our own, and then push doctors to take our word for it, get the tests ordered that will discover the issue, and get it fixed if possible. The reality of the possibility of walking into a doctor’s office, complaining of shortness of breath, as an adult in their forties, and have a doctor only do an EKG in his office, and then tell you “everything seems okay” except for the fact, you don’t feel okay, is all too common. You need to advocate for yourself, especially after reading this post, and the next one to follow (likely in a week or so – I am waiting for news on a particular web site), and use the information that is available to you, and find a doctor who will listen to you.
But why is a patient being put in this position? If there are so many of us survivors dealing with these issues, and clearly there are some doctors and facilities out there who can take care of us, why isn’t this type of care more common? The doctor offered his answer.
“Because we are going backwards in our healthcare.” Whether it is because of meddling insurance companies (or as I refer to them as greedy pen pushers) or medicine being privatized or incorporated, there is either just no interest or not enough profit to care beyond the “cure” for cancer. Things get too complicated with our conditions, and answers are just too costly with all of the tests that often need to be run on us survivors. Though I have not run a tally for all of my surgeries and emergency room visits, and the dozens of tests I have gone through over the years, I know if I just take the big things I have gone through, those alone would total well over a million dollars spent caring for my medicine induced health issues. I would not be surprised if I were in the three million dollar range at this point.
That’s right. And we end up right back where we started, with the doctor’s quote, “you have to advocate for your own care.”
I heard from several survivors after my last post and this Zoom, all saying the same thing, “is our survivorship all in vain? Is being treated successfully for cancer the only objective only to be left with these late side effects, that no one understands or can figure out? The rest is on the patient?” I do and I do not believe that. I do think this is where we are at in medicine these days. Gone are the times when doctors took their own initiatives, followed their guts, cared more about their patients than profits and what higher-ups expected of them.
I am long enough in the tooth to remember times, when doctors were allowed to care about their patients, and did. I have had my current primary care doctor nearly forty years. I have watched her take over my prior doctor’s practice, then take on a couple of practicing partners (including her husband). Then came the big take over by a hospital network, and little by little every year, this incorporation has taken over more and more of her practice. It is barely recognizable anymore if you just casually walked in for the first time. But when I get to see her, I can still see the same doctor who has given me the best care she can possibly give, regardless if her hands now appeared tied by corporate (she is not even allowed to have her kids and grandchild’s photos and school artwork hanging anymore – talk about a sterile looking office). All this time, she has been my greatest advocate. Sadly, a time will come, she is a few years older than me, and she will step away, and I will have to continue to fight this battle on my own.
There is no reason not to want to be cured of cancer. There is no reason not to want to move on and live life after hearing the words, “you are in remission.” But it is a totally different thing, to be aware of the fact, that what treated you, has the potential, not guaranteed, but potential, to cause problems later down the road of remission. You have two choices, and both are the right ones. Go ahead, push onward, forget that cancer was ever a part of your life. Avoid doctors because you feel great, and you do not want the negativity, or the reminders, of your past. Forget that you know, the risks are there. You know they are there because you are either reading this, or you know someone else who has dealt with these late effects. If you choose this path, and you end up being an “unlucky” one who faces something unexplainable for your demographic, all I ask, is remember what you know, what you have been told. We will be here to help support you, guide you, and advocate for you, should you end up having a late effect.
To be honest, this is exactly what happened with me. Upon learning my main artery to my heart, and valves were impacted by radiation eighteen years after my treatments, and my current cardiologist and surgeon really not schooled on this issue, I remembered fellow survivors who had gone before me, and I went running to them, for help in finding the care for these treatment related issues that I was now going to need, the rest of my life.
Or, your second choice, you will have regular follow-ups with your oncologist. The appointments will likely be every three months for the first couple of years, then every four months, every six months, and then annual. And you will reach that five year magical mark you have heard everyone talk about. And your oncologist will likely tell you, there is nothing really more to do. But you have read this post, and other posts, and instead of waiting to be told you have a major condition that has been building for years, and you are about to die, you learn about the treatments that you have gone through, research the potential (not guaranteed) side effects, and encourage your primary care doctor, “just to keep a look out for these things.” Living your survivorship this way, does not mean you are still carrying the specter of cancer on your shoulders. Not at all. If nothing shows up during these long term follow-ups, then those appointments give you peace of mind that all is well. But if something is discovered, it is found sooner than later, giving the best chance for corrective actions. Seriously, who do you think has it better? Me, who has a regular cardiologist, constantly watching all my numbers, and making decisions when things progress? Or somebody who does not see a doctor regular, but is walking up steps at a baseball game, and collapses from a heart attack that he had no idea his heart was in that bad a shape?
I get it. The stigma of continuing to be cared for as if doing so will actually manifest issues, is real. But in the end…
“You need to advocate for your own care.”
There will be a final part to this unintended series. And it will benefit all cancer survivors, not just Hodgkin’s Lymphoma survivors. I am waiting on a particular announcement, but the post is ready to publish as soon as I hear it, hopefully in a week or two.
Paul's Heart 