Paul's Heart

Enough Is Enough

There were a couple events that occurred recently, which is prompting this post. Actually, I have written about the issue many times before. But this time, I am going to hand “spoon feed” you the information that will hopefully and finally convince you, protect you, and perhaps, save your life. If there is one post that I want SHARED SHARED SHARED, this will be the one.

There are many things that an oncologist will tell a cancer patient; survival chances for the particular cancer, options for treatments, and what your immediate future will entail. Hopefully, the cancer patient will hear the words, “you are in remission.” And the final thing that a cancer patient will “hear”, and that is in quotation marks on purpose, “you are considered ‘cured’ after five years without a relapse,” which a cancer patient hears as, “I am done with cancer.”

And this is where, even after my nearly 33 years as a survivor of Hodgkin’s Lymphoma, nearly all oncologists leave out the most important thing to tell a cancer patient. Although you may be in remission, or “cured,” a patient, or survivor, is never really done with cancer. And this is where too many oncologists fail their patients. The truth is, a patient, or survivor, even if considered “cured” after five years, still needs to be followed up for the possibility of the development of late term side effects from the treatments.

Please, read this statement very carefully. The one thing that every cancer patient cannot wait to happen, is to be “done” with cancer, put it behind them, never to think about again. It is understandable that we want to make it a goal to never set foot in a doctor’s office ever again, like other non-cancer people get to live their lives. And who can blame any of us for feeling this way? Going through a cancer experience sucks. But you know what sucks as bad, if not worse? Learning that while you were busy going through life, acting as if cancer had never happened, damage caused by the treatments that gave you that cure, have the potential to progressively develop serious health issues, many undetected, until it is too late. This is what happened in my case, and many other survivors, some who already knew their situations, and others, who never saw it coming, sometime with fatal results.

Listen, it is not a bad thing, to be followed up by a doctor. It gives early detection for something that at one time or another, had been unknown. For instance, those of us treated in the 50’s, 60’s, 70’s, and 80’s were literally experimented on with our treatments for Hodgkin’s Lymphoma. There were no studies on long term side effects. All that mattered was the current treatments worked for remission, no matter the physical cost.

Look carefully at this photo. It is the actual record from my radiation therapy back in 1989. In particular, look at “item 2, ” where it states “medicine is not an exact science and that no one can prevent all of the acute, sub acute, and chronic changes or injuries…” And then just below, it lists other potential complications: muscle, bone, neck, pericarditis (an inflammation of the heart) or other infection. That’s it. Why is that? Is it possible that it was just because, cancer patients were not expected to last longer than five years, even if in remission? Why is that? Did no one think to study the late effects of what exposures to high dose radiation therapies and chemotherapies that could develop, should someone actually live past the five year mark, spoiler alert, there are thousands of us living decades longer?

Thanks to a few pioneers in long term cancer survivorship studies, some of us have finally gotten the help we need. But the majority of survivors do not. They do not live near a major cancer network that might actually have a survivorship clinic. Insurance may not cover the unusual and unexplained health maladies being dealt with. And other than some peer to peer social media support, there really is nowhere for a long term survivor to turn to, if they can even figure out, that their health problems are even remotely related to their cancer treatments.

Which is what makes it so maddening to me, that just as a friend wants to, and rightly so, celebrate reaching their five year milestone, here I am unable to simply just say, “that’s great.” I have to follow my congratulations with “but…”. If I am going to rain on someone’s parade, I am going to back up and present what I know and have learned. One of those resources comes from the Children’s Oncology Group, which is committed to childhood cancers. But here is why this resource is important to you, because it has information that does not matter if you had a childhood cancer. Because the information inside the guidelines contains therapies often used with other adult cancers. And it demonstrates the necessity of having to be looked at, long after that magical five year mark.

This is the link to the survivorship guidelines: http://www.survivorshipguidelines.org/ . It lists information from the modes of treatment and the different medicines, information to gather to make better surveillance plans, diet issues, fitness issues, educational, emotional, affording health care, long term survivorship recommendations, dental, cardiac, endocrine, gastrointestinal, musculoskeletal, neurological, pulmonary, reproductive, sensory, other cancers, and urinary. Go back, and look at the picture of the potential concerns I was warned about. And if you have followed “Paul’s Heart” long enough, you know the extensive health issues I have to deal with, not just the few conditions listed on my picture. Yet this list is what is currently exists. And do not be fooled, Hodgkin’s may be a “childhood cancer” per se, but you can still be diagnosed with it, like I was at age 22, or in your 70’s. The concerns with the treatments will be the same.

I provided the link for a reason. The actual guide of treatments is over 200 pages long. If you do not have access to a survivorship clinic, and you are left to advocate for yourself with your primary care, help your doctor out. As I am about to show you, simply note the pages that affect you to spare your doctor’s time. Let them know, what needs to be looked at. They can and should be able to determine your care from there.

http://www.survivorshipguidelines.org/pdf/2018/COG_LTFU_Guidelines_v5.pdf . This is the link to the full document. The first few pages list the panel of experts that were included in creating these guidelines, and how to use these guidelines. Starting on page 31, references ANY cancer experience, and yes, that means not just childhood cancers. Concerns of psychological and quality of life concerns are listed here. On page 36, sleep issues and fatigue concerns are mentioned. The guidelines address if you were exposed to any blood products during your treatments on page 38. Then comes the big info starting on page 41, chemotherapy issues and continues through page 82. I would like to share just one page in particular as it applies to me, and perhaps those with different cancers, but got this same particular drug.

I received the chemotherapy drug, Adriamycin, listed on this chart as Doxorubicin. We cancer patients and survivors refer to this drug as the “red devil,” and for good reason. Reflect back on that page near the top with my possible risks. Do you see the difference between the years1988 and 2023? Like I said, this drug is not just used to treat childhood cancers, but adults as well with cancers such as breast cancer and stomach cancer and more, and is still one of the main drugs used today. But the toll it can take on the cardiac system, if not monitored closely, literally, can be fatal. This information matters to you as well! Allow me to show you another.

This is another drug I was given, and is still used today, Bleomycin. This has a huge impact on the lungs. Another?

Anyone treated long term, with high dose steroids, including cancer patients, run the risks listed above. One final slide, and I think you will get the idea.

This page demonstrates the potential risks for radiation, and clearly is an issue with the higher doses used decades ago as was with my case. I just selected the cardiac page concerns, but I promise you, there are many more pages including for the lung, thyroid, and more. But again, reflect back to that page at the top, only a few concerns were listed, and there was no plan to follow me up after five years. Thirteen years later, eighteen years from my remission, I was diagnosed with a fatal issue, a blocked LAD, main artery to the heart. Blocked does not really describe the situation. Radiation, which remains in my body today, continued to scar that artery, until it was almost completely closed off. Again, NO ONE WAS MONITORING ME. Since that surgery, I have had two more heart surgeries, another main artery, and my aortic valve, all to the point, it needed to be done. They know this concern now.

So, why are not enough doctors and oncologists informing their patients, that while, YES, celebrate the five year mark, but we are still going to have to watch you, the rest of your life for the possibilities that these things could develop. Not definitely, but could. And it would be far better to catch the issues early on, instead of waiting until someone is ready to drop dead like in my case.

Please, I encourage you. Go through the rest of this guideline, save the pages that pertain to you. And if you cannot see a long term survivor clinic, take these pages to your family doctor or general practitioner. And if for some reason they will not hear your concerns, find another. These issues and concerns are very real, and I can literally back them up with the voices of over 1,000+ survivors who I know have gone or are going through these similar issues.

And finally, as I said in the beginning, share this post. Share it often. While there are many cancer conferences and other doctor gatherings, these concerns are still not being discussed enough. The medical community is not educated in these issues, how to look for them, or how to handle them. My fellow survivors and I are doing all we can, with just our small number, to inform everyone that we can. We even have an organization called Hodgkin’s International to help raise these concerns for those that look for the information. But as I said, this information can be helpful to cancer patients of all ages, regardless of what cancer you face.

https://www.hodgkinsinternational.com/