Good Cancer News, And Even Better Cancer News
(photo courtesy of istock)
First things first, just recieved notice from WordPress, I have been writing “Paul’s Heart” for thirteen years! I cannot believe it has been that long, and I am just over 5700 views from hitting 100,000 views! And those are purely organic views, I have never paid to promote my page. This success is because of those that follow me, and even just as importanly, share stories that they feel will make an impact on someone who might just need it.
I enjoy writing. It has been a good avenue for me to release stress, organize thoughts, inform, and celebrate. I have been published many times in various publications, and of course published my first book, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor,” available on paperbook or E-book on Amazon.
And for the last two years, I have been doing videos and hosting lives on TikTok, Youtube, and Instagram, as well as many years on Facebook, sharing and advocating for cancer patients and survivovrs. Enough is not done to share, inform, and inspire cancer survivors, and that is all I have wanted to do with “Paul’s Heart.”
So the other day, I was excited to see that two news networks, ABC and NBC, posted a rare but exciting news story on cancer survivorship. NBC’s title “7 in 10 cancer patients now survive five-plus years,” while ABC’s was titled, “More people are living 5 years after cancer diagnosis, new data shows.” This is definitely exciting news to hear, especially when you consider back in the 70’s, only 50% of cancer patients survived more than five years, and in the 90’s that number increased to 63% (per the American Cancer Society). Compare this, to when we (me and those of you born before the 1980’s) when all we believed was that cancer was an automatic death sentence because that was all we knew without the internet.
Credit for this milestone in survivorship is given to improved treatments, early detection, and even a nod to a reduction in smoking. There is also a better understanding of how cancers work and using targeted therapies.
I do wish that the article had broken down ages of the patients as well as modes of treatments; surgery, chemotherapy, radiation therapy, immunotherapy, transplants, combinations of any or all. Alas, it didn’t.
And while this is indeed great news, as the expression goes, “as the good Lord giveth, our government taketh away.” Last year, according to the articles, cuts to cancer grant research funding of 31% in just the first three quarters of last year, already are having a negative and reversing impact of any gains made in the treatment of cancer and survivorship. And now, the Affordable Care Act subsidies have been dropped, which means many cancer patients will no longer be able to afford the insurance to cover their treatments. There is no mincing words. They will die.
Anyway, the news today is supposed to be a good thing, so let me get back on track.
As much as I wanted to celebrate the article, instead, I felt the article had the chance to do so much more, and fell flat. An article that brought so much excitement and good news, could have, and should have gone further, and did not. And so, I did what I often do. I got to typing, to both networks. I told them they forgot the rest of their story.
As someone diagnosed with cancer, all we want to know is that we can beat it, and that we will live a long time. And evidently to science and the media, this “long time” is five years and that is good enough. Here is how the conversation went for me with my oncologist 38 years ago (doing the math, that is waaaaaaaaaaaayyyyy more than five years ago, you can see where I am going):
“Hodgkin’s has a very high remission rate, and once you hit five years, there is a confidence that you will not have to worry about it coming back.”
Most of us cancer patients and survivors have likely heard similar. But in that moment, all that stands out to us is, “so it is gone then, forever, right? As in cured?” And then my doctor said, “I don’t like to use the word ‘cured’, I prefer ‘remission’.” Well I prefer the word “cured,” so…
If the goal is to have the cancer gone forever, does it matter which word gets used? Technically, yes. Remission means that there are no long signs or symptoms of cancer remaining, especially per labs and scans. This means that the cancer is not expected to return. But, it does not mean that there could not possibly be any remaining cancer cells left, which could result in a relapse. And while the oncologist may be confident in the treatment, they are not willing to bet their house the cancer is guaranteed to be gone. So then what good is the word “cure?” Cure means that the cancer is permanently gone. What does that mean exactly? How long does it take to declare “permanently”? After all, I am in remission more than 35 years now. It will be 36 years in March. Shouldn’t this count as being cured? Isn’t 35 years long enough? The truth is, remission has been so ingrained into my thinking with survivorship, I still only refer to myself in remission.
Ok, regardless of the tomato/tomahto argument of remission versus cure, hitting that five year mark is a good thing. We all want that. But is that all that there is? Science and media seem to think so. The magic five-year mark is still the only benchmark being discussed. What does this mean to the cancer patient/survivor? After five years, don’t expect anything? Tomorrow could be it? Don’t make any long range plans? Do you see where I am going? I wrote a book referring to a “35 year cancer survivor”. Cancer patients and survivors do live well beyond five years, and hardly anyone ever talks about it, or is willing to. Sure, I constantly discuss this, but you do not hear of it from the science and medicine community, and you definitely do not hear it from the media. BUT WE ARE HERE! WE EXIST! LONG TERM CANCER SURVIVORS LIVING 10, 20, 30, 40, EVEN 50 YEARS AFTER CANCER! WE EXIST!
When it comes to numbers of survivorship in years, I am most familiar with those dealing with Hodgkin’s Lymphoma since that is what I had. But I do know, other cancers treated just as successfully have to have long term survivors like me, and just as with Hodgkin’s, it just does not get talked about. Responses on social media to the ABC and NBC articles proved that. Responses covered a range of cancers, even those once thought as incurable:
Acute Lymphocytic Leukemia (ALL) – 28 year survivor
Kidney – 19 year survivor
Breast – 26 year survivor
Colon – 9 year survivor
Cervical – 10 year survivor
Lung – 7 year survivor
Stomach – 8 year survivor
Ovarian – 15 year survivor
And of course there are the hundreds and hundreds of Hodgkin’s survivors I personally know, many with more years than me in survivorship. One of my closest friends will close in on the fifty year mark next month.
But we are here, the long term survivors of cancer. And we know things that need to be shared with cancer patients, and those survivors going for the five year mark. Too many doctors are not having the discussion that needs to be had, with life after that five year mark, that time period when an oncologist is likely to release their patient, go on with life.
First, understand, there is a whole lot of life after that five year mark. And while the cancer may be gone, things have changed for you. Things are not the same for your body and your mind as they were five, six, seven years before. And you are not likely to be able to get back to that life, and perhaps not even want to. But you have gone through an enormous trauma, that does not just go away. Yes, you can go on, happy as can be, just know, it is likely going to be different. Some of us refer to this, as a “new normal”. And that is okay. Because you are in remission. And that is what matters most.
Even before you hit the five year mark, your life will have begun its path toward the rest of your life, and hopefully well past that five years. If what you want, you will likely find that career, have that family, travel, record a hit record, whatever, you will have whatever opportunities that you want to make and take. There is just one thing you need to do, to increase your chances to make that happen. And it is not a big deal. But to those outside of your cancer, they may not understand.
There is no “just getting over it” with cancer, emotionally or physically. It is one of the scariest times of our lives, our lives threatened by something we know may have killed someone we know. And yes, there is an innocence that gets taken from us. And not getting over it, or not forgetting about it, does not prevent us from a long and happy life. Quite the contrary. I know that I had a deeper and stronger appreciation for the little things, friendships meant more (especially those who stood by me), and an understanding that I would take one day at a time. But there was one thing more that I needed to do, take better care of myself. My body was “scarred” by the cancer and the treatments I went through. My body took a beating, and needed to be looked after, if not by the oncologist, then my primary care doctor.
If you recall back in the beginning, prior to treatment, you were informed of potential side effects, not guaranteed, but possible. They were short term and long term. Chances are the short term were spot on, hair loss, nausea, etc. And we dealt with them, and recovered from them. As we reached remission, the cancer “gone,” we no longer thought about side effects. And as the years progress, we forget about the “late side effects” that were mentioned in the beginning. And the truth is, not everyone will get them, unlike the short term side effects. But for those that do develop late side effects, knowledge and treatment/intervention is critical to long term cancer survivorship.
Thanks to long term cancer survivors like me, and those before me, who were unfortunate to be someone who developed late side effects, medicine is now aware of the care cancer patients should have long term. There is only one problem. The information is so slow to get out there, which is why I fault ABC and NBC for not doing a more thorough story. Because it is not good enough to just say living with cancer past five years increased to 70%. The goal should be a lot longer, and some survivors are going to need help doing that. But which ones, and how? There is no way to know who will end up with late side effects, because no data base exists or was ever created. We were not supposed to live this long after cancer. And if you have not developed any late effects, or worse, are unaware of the odd and unusual things happening to you medically, your medical team is at a loss. But if you are someone like me who has followed the advice and guidance of fellow long term survivors, and the need to follow up on health after cancer, there is a long life ahead. And I am counting on many more years.
Whether you are just reaching the five year mark, or are years passed that, you MUST have a relationship with a primary care physician, someone who knows your cancer and treatment history. With information provided by several oncologists and other cancer advocates on the Children’s Oncology Group (ignore that it has “children” in the title, as much of the information pertains to radiation, surgery, and even some chemotherapy drugs used in other cancers), there is a PDF called Long-Term Follow-Up Guidelines for Survivors of Childhood,
Adolescent, and Young Adult Cancers ( https://www.survivorshipguidelines.org/ ). I also provide the link on the site. Here you will find a listing of treatments, conditions, and chemotherapy drugs, and their potential impacts on particular systems of the body. This information is invaluable to a PCP as it tells them what to look out for with you, based on how you were treated. All the PCP needs to do is a simple baseline on the system impacted (chest CT for radiation and the lungs, an echo for the heart, etc.). Hopefully everything is good, and the next tests would be scheduled years later. But, BUT!, if something were found, your PCP would be able to refer you to the necessary specialist to follow up and follow their plans, whether more surveillence or other corrective action. The key is to stay on top of anything that could develop. Again, not that it will, but just in case. We have no idea if we are going to be the lucky ones who do not have any late issues or unlucky and do. This is why we need our PCP’s especially after the five year mark.
Please, do not hang your head over this. Do not let others tell you, “that must suck having to still think about it after all these years.” No, it doesn’t suck. Do you know why? Because for the last 18 years of my 38 year survivorship have relied on having skilled and knowledgable doctors, and following their recommendations. And that is the difference between me typing this now, or being dead on April 18, 2008 from a massive widow maker heart attack. 2026 for me as a long term cancer survivor is going to be one of my best years yet, as I will see my youngest daughter reach her major adult milestone age, and I will get to witness my older daughter graduate from college.
Cancer survivorship is not just about getting through treatments and reaching remission. There is a new life, a new normal that needs to be built and worked for. And in the end, I will tell you, it is so worth it.
Paul's Heart 