As many of you know, since my cancer journey began, I became committed to helping others in my situation, through advocacy. I am also equally committed to sharing and communicating, and sometimes even educating my own medical team about my (and others) survivorship, so we can have the best quality of life possible, post-treatment. I know that by my oversharing, I will help those who are less inclined to speak up for themselves, and ideally, I hope that what I share may end up benefitting another patient along the way. I accept this responsibility with sincerity and humility.
As providers, you may not know that many in the “survivor in remission” category often feel dismissed and disregarded by their practitioners once they’ve completed treatment. Sure, there are follow-ups and check points, but for the most part, we are off the radar and on our own to figure out the residual after-effects of treatment, some of which are life-altering. Then after 5 years of remission, survivors are simply sent off to live their lives as if nothing ever happened. But it did happen, and for some it could happen again because 5 years is often the magic number for cancer recurrence.
As survivors, we cognitively understand that your "work here is done" and that you have others to focus on. After all, your dedication to curative medicine is of course what led us to remission, and we thank you! We want that for others as much as you do! But where does that leave us?
The more I work with survivors, the more stories I hear that have compelled me to write this article.
Put simply, survivors need more resources, and if our providers aren't it, then please tell us who is, or create a new profession that focuses solely on cancer-specific survivorship and follow-up medical care for survivors and their unique needs. It should include aspects of both physical AND mental health.
There are other factors in play as well. Providers each have their lane: Diagnosis, Oncology, Radiology, Surgery. Their lanes don't cross much (even if there is a tumor board), though I would propose they should for the patient's benefit and to achieve maximum continuity of care.
Additionally, for some providers the mere thought that the treatment or care they administered may have caused a permanent (negative) after-effect to a patient, can really get into their psyche, and the "first do no harm" part of the hippocratic oath is bound to taunt them. In which case, they may avoid discussing certain conditions, minimize them, or even go so far to deny a condition exists and make a patient think it's all in their head. Recently, I have seen this happen with a few of my colorectal cancer survivor friends and I have been infuriated by it! I am grateful that none of my care providers deny the existence of my residual conditions related to cancer treatment. And yet, there is still so much more to be done!
Let me be clear: Very few of us fault our providers for the residual after-effects of our treatments. Most of us are just so happy to still be here on planet Earth waking up and breathing each day, that we are quite frankly willing to live with a lot to have this privilege. We know we are the lucky few. There is also danger in this kind of thinking, because we think (and we think that they think) that we "should just be grateful," and therefore we don't want to feel like a PITA (pain in the ass) with our doctors. Or piss them off should we need them again in the future!
To our doctors: We know that you did your best, you are human, and we know that all cancer-treatment modalities carry inherent risks. We don't blame you! Thus, you should not take our post-treatment challenges personally or let your egos get in the way of helping us now, when we need you the most! There is no question that living through active cancer treatment SUCKS, but the harder part can be living the rest of our lives with what are in some cases, invisible disabilities that are little understood, under-researched and which adversely effect our quality of life. So I say to you, if not you, then who?
We get it! Most of you are in this profession to help people, to save people. But what providers also need to realize is this: We still need you! And if not you, SOMEONE, to help us navigate our futures with the long-term, life-altering and sometimes quality of life diminishing after-effects of cancer treatment. In many cases, we are left to our own devices to figure things out. Thank God for social media and online groups where we can collaborate with others in our situations and in effect, doctor each other, if not to a cure, at least to better acceptance and management - Some of these people have become my lifeline and my best friends!
Providers: Continue the Care
I'm going to talk about me for a second, by way of example.
Survivors are well aware that everyone in their lives, sometimes including their doctors, just want to move on from (our) cancer. People in our lives often only want to hear the good news from us - or at least that's what we think they want to hear - because we know that sharing our realities makes others feel bad, and we work real hard to NOT make others feel bad about our cancer journey. It's a survivor thing! It's as if we act like it's our job to take care of them, even though we aren't always being taken care of, or taking care of ourselves enough.
We know that our friends, families and care team want to hear that we are happy, healthy and thriving. "All is well!" Of course they do, and most times we are well, with some exceptions. Who wants to hear that we are burdened with lingering side effects or having a bad stretch or (if you're me) that you pooped your pants today, regardless of how much humor is in the delivery! We do not respect that kind of vulnerability in our society. But we should.
I was recently accepted to be a part of a research study on cancer survivorship, its mental and physical impacts. I am thrilled to be a part of a study which focuses on survivorship! But, after doing the initial intake, I told my spouse, Amy that were I to list all of the things that have happened to my body since cancer treatment, including those that were proven to be, and those "anecdotally" caused by treatment - some which are not widely understood as mainstream side effects - that I would sound like a walking wreck. But I'm not! Nor am I a hypochondriac. Most days I am a happy, healthy, thriving individual! I think of it much like someone would with an autoimmune disorder - there are great days, good days and some not so good, ok and a few bad here and there. The difference between my situation and an autoimmune disorder is that most of those are widely recognized and understood, and the one thing I deal with the most on a daily basis (LARS - low anterior resection syndrome), is still not even recognized by the entirety of the medical community and if it is, it is largely misunderstood, and yes, sometimes even ignored or dismissed as simply a "fact of life" for a rectal cancer survivor. Yet, I belong to an online group that has over 6500 members dealing with the same condition. That's a lot of folks and it's likely they are only a fraction of the true amount of people with this condition. I want to be clear that ALL of my medical team recognizes that I have LARS. And, I admit that most of the time I initiate the conversations about it, and I feel largely responsible for managing it on my own. Again, in their defense, they all have their lane and no one has a LARS lane. But someone should. I also admit that I sometimes feel bad bringing it (and other things like chemo induced peripheral neuropathy) up, because I know that my practitioners feel bad that it's a part of my life. But they are not responsible for it, and this is not a reason for us not to have open and honest two-way communication about it.
I admit it would be really nice if at my next check up one of my docs said, "Hey, how is the LARS situation going"? Or "How can I support you better?" or "Hey, I saw a research study on LARS and here's what I learned..." (Without me having to bring it up first.) Still, I don't hold it against them. I love my docs, they are excellent doctors, and I know they care about my well-being. This is just not how they are taught in medical school and maybe that is the crux of the issue. Medical schools should be training more than just the technical aspects of medicine. They need to teach doctors to color outside the lines.
This is where I say to patients (if you're reading this) "You have to be your own advocate!" For example, because I did my homework, I asked for Pelvic Floor Physical Therapy, and I was grateful to get it. (There is much more to LARS than just poop.) Funny thing is, even my PT, who was a pelvic-floor specialist, had little experience with colorectal/rectal cancer patients with LARS (not to mention a lesbian patient which brings in a whole other slew of nuances to pelvic floor dysfunction side of things). So while she was awesome, knowledgeable, and so very helpful, I found myself in the educator role, once again. I'm glad because a) she was receptive and b) I think it will help someone else along the way, but it's also kind of exhausting sometimes. I feel like I have to know everything about everything, when really, sometimes I just want to be the patient, learn from someone else and some days just know they have my back (side).
My point is that even the people who I thought were supposed to know, understand and help me through this part of my recovery, don't always know or understand enough to support me. Keep in mind that most of these potential after-effects don't ever get discussed before or during the treatment phase (though they should). They only get discussed if and when they happen, and for some, only after we bring them up. This model needs to change! We're already facing cancer. You're not going to scare us more if you tell us the potential downsides/long-term impacts of our treatment plan - unless of course there is a 0% chance X will happen or you don't know enough about it to help your patients understand the impact. In which case, I would encourage providers to get educated, and fast! For example LARS, its under-researched but there is data available. The most recent can be found HERE. (BTW, if you want to discuss this study with me, please reach out. I have lots of thoughts and a few opinions, especially about the Recommended Treatment Guidelines for LARS section - spoiler alert: As a LARS sufferer, I don't agree with them all.)
Patients: What Can You Do?
Do your homework, ask questions, don't allow feeling awkward or uncomfortable to keep you from addressing concerns and getting your needs met. We are partners in this with our providers and thus we own 50% of the interaction!
If you have a provider that is gaslighting you and telling you that something you are experiencing doesn't or shouldn't exist for whatever reason, challenge it and/or get a second opinion or find another doctor!
Use your resources and/or ask for resources!
As cancer survivors, we have a right to all the feelings and emotions that go along with our conditions. The cancer experience touches us at a physical, mental and spiritual level. While it is a providers job to continue to provide us with the best care they can throughout the entire cancer journey, it is also important for us to share what we need from them. They don't know unless we tell them.
Providers: What Can You Do?
Get out of your heads. Focus on your patient and their overall well-being. We know you deal with a lot of loss in the cancer business, and it's easier to stay detached, but we need you to be engaged!
Never dismiss or diminish a patient's concerns, side-effects, or residual conditions! We are not all textbook!
Do your homework on conditions that we bring to your attention. If you don't know, find out or refer out to another expert who can address the situation. Facebook groups are a wealth of information. Not everything is in a research study!
Be the first to ask us how we are doing, and do so wanting to hear the answer. Ask about the cancer-specific/treatment conditions that effect us. And do it before we have to bring it up!
Inform your patients of all the things that they need to be aware of before, during and after treatment, not to scare them, but to educate them so that they know what to look for and what to do if they do have symptoms. We can take it! We are cancer warriors, after all!
Be open to questions and allow TIME for discussion. This may include sharing ideas and different perspective with each other.
Don't forget about us! We don't need or want to be top of mind, BUT... Even though we are in surveillance-only doesn't mean that things don't come up from time to time. If we send you a note through the portal, respond! (This happened to me recently, as my hospital sent a notification saying I'm due for scans, but I don't think I'm due for another 3-6 months. I sent 2 portal messages and have yet to get an answer from the provider that normally orders them.)
A Final Word & Thank You
I truly believe that cancer-care providers are a special and wonderful breed of people who care deeply about life and the lives of their patients and I for one am eternally grateful to all of those who paved the way to my remission. Having worked with people and organizations in healthcare throughout my career, I know that sometimes systems and processes get broken and when that happens, it becomes less about the people served and more about the bottom line, productivity, personalities, and what I call medical silos or the "stay in your lane" effect. Add to that the emotional toll for care-providers in dealing with a population of people where the outcomes are often death. It would be very hard for a provider to not want to de-personalize care for emotional self-preservation. But, it's time for us to get back to a place where not only is patient-care paramount, but also person-care. Survivors need person-care as much as they needed patient-care.
Thank you! ✌️❤️💩
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Hi Cindy - Per your suggestion in your recent email, I found the comment section. And I signed up with my email to access the site. Let me know if you can see this comment. Best regards.
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