September is National Hodgkin’s Lymphoma Awareness Month. Here are some facts. This coming November, will have been 34 years since I was first diagnosed with the rare form of cancer, called Hodgkin’s Disease at the time (I guess someone felt it was less scary to drop the “disease” and put “lymphoma” in its place). Hodgkin’s Lymphoma is also considered one of the most curable forms of cancer for decades, with a remission rate of up to 94% according to the American Cancer Society. The barbaric diagnostic methods done to me back in 1988 are rarely used anymore, such as the staging laparotomy and lymphangiogram, because of advances in technology. It would be awesome if I could end this post right here. But there are two other facts pertaining to Hodgkin’s Lymphoma that need awareness, and get next to nothing.
As mentioned, Hodgkin’s Lymphoma has a high remission rate (if you like to use the word “cure”, you are free to do so). That means, you should be expected to live a long life. Well, cancer treatments way back when I was treated and beyond, were not studied for “long term” or “late term” side effects, because the priority was to put you into remission and honestly, probably never expected survivors to live long enough to develop any other issues. And here is the kicker, there was no plan to follow up Hodgkin’s survivors beyond five years (I am limiting this comment to Hodgkin’s as I must admit to not knowing follow up guidelines for other cancers, but the cynic in me wants to say it is likely the same.).
Well, as a reader of “Paul’s Heart,” you know that survivors of Hodgkin’s Lymphoma can live a long time, decades long. And that means that I have lived long enough, to discover the late developing effects of both the chemotherapy and radiation therapy that were used to treat me.
If you have ever gotten a vaccine, you have likely received an information statement about potential side effects. Before my treatments began, I was given a similar warning, as written in my chart, the potential for a secondary cancer (such as leukemia) and pericarditis (a swelling of the heart muscle). And that would be all well and good, but remember, this was based on using five years as a survival statistic. This is what they knew could happen within five years.
Boy did medicine miss that mark. Here is the list of just my diagnosed late developing side effects, attributed to my treatments (in no particular order of importance):
- left anterior artery damaged (one of the main arteries of the heart) – open heart surgery
- right coronary artery damaged (another main artery of the heart) – stent placed
- aortic valve damaged – artificial valve placed
- mitral valve damaged – waiting for correction
- diagnosis of congestive heart failure
- restrictive lung disease (no treatment available)
- multiple unidentified spots on my lungs (watching for development to cancer)
- lower left lobe of lung described as “dead”
- Barrett’s Esophagus (pre cancer of the esophagus)
- Zenker’s Diverticulum (an issue with my throat that causes other problems with my digestive tract)
- carotid artery damage – stent placed
- radiation fibrosis and muscle loss/atrophy in my upper torso
- facet joint arthritis in my lower five vertebrae of my spine
- and multiple health events and immunity issues caused by these conditions and being asplenic (no spleen) from my diagnostic days)
Wow, did medicine miss the mark in 1988 with what could happen to Hodgkin’s survivors. Surely medicine has learned that survivors need care beyond five years, hasn’t it? Nope, well not really, or not good enough. In 1988, I had no internet, hence no support groups to navigate my way through treatments and survivorship. In the late 1990’s, I learned of the internet, and something called a “list serve” (an email list), that had me in communication with other survivors, only a couple of hundred of them, who seemed to be dealing with unexplainable issues, that could only be attributed to their treatments for Hodgkin’s Lymphoma. In 2008, with my first heart surgery, caused by radiation damage to my heart, I learned of so many others who had similar health problems, yet nowhere near the potential numbers of survivors who have no idea why they are experiencing what they are. And worse, dealing with a doctor who does not know the treatment past of their patient or ignorant to believe the relationship between the treatment past and the current malady, or because the patient does not know it is relevant.
Okay, here comes another fact. According to the American Society of Hematology as of 2011, there were 31,500 Hodgkin’s survivors in the United States. I personally question that number’s accuracy since again, there is not any real lifetime follow up plan as there should be. But even go with that number, why seemingly, is it likely that less than a thousand Hodgkin’s survivors are even aware of this potential, or worse, actually experiencing issues? That’s right, on one particular peer group of survivors I belong to, there are 934 of us, out of at least 45,000 survivors. Web sites of cancer organizations now at least list possibilities about late effects, but THERE IS NO PLAN FOR SURVIVORS!
As one friend and fellow long term Hodgkin’s survivor named Gloria put it, “I remain beyond words appreciative that Dolly (another long term Hodgkin’s survivor who passed away several years ago) connected me with this well established resourceful tribe of folks, who like me had “successful cures” for our bouts with childhood or young adult Hodgkin’s Disease but now 20-40 years later, found ourselves having subsequent cancers, heart & lung diseases, radiation fibrosis and other not do so fun conditions that no one could’ve seen coming nor expected.
According to oncologists, due to advances in treatment, our treatment related maladies should be a blip in medical history as what screwed us up, cobalt radiation, isn’t used anymore.
While I fail to agree, what this really means is for our tribe of first generation long term survivors, there are no predecessors nor history to consult. Our tribe has had to figure out for ourselves what tests we need and what conditions to watch out for as we navigate our way into old age. The Hodgkin’s long term survivor FB groups and Hodgkin’s International, which grew out of the online organizing, have literally saved my life by publishing guidelines and recommendations that appear nowhere in the conventional oncological world where they stay so busy with the newly diagnosed they have no time for long term survivors.”
Gloria could not be more spot on, which is why I asked if I could use her quote from another online post. Some of us are fortunate to have found doctors that do “get it” as far as our issues. But out of the less than a thousand of the dozens of thousands of long term Hodgkin’s survivors, an even smaller number have access to those doctors. Our “tribe” as Gloria refers to, actually spans the globe, whose survivors actually learn from us, only to get frustrated with the lack of care and knowledge in their countries, whether it be England, Taiwan, New Zealand or elsewhere.
Gloria is also correct, and again with due respect to the doctors that do care about us, there are too many who are just too busy treating newly diagnosed, or refuse to be told by their patients, information that can possibly save their lives. The fact that our bodies are so compromised from this damage, shortening our lifespans considerably (as in averaging my age for mortality), we are to be grateful enough for having lasted 30, 40, even 50 years. So why bother medicine to make things better, right?
Before I go, there is one more thing that I must bring up, again, another fact. As mentioned at the beginning, the success rate of 94%, that means 6% do not survive. This is a frustrating statistic. Because having a successful cure rate, has caused an apathy to find any new treatments that could push to a 100% cure. Why is this such a big deal? Because while the toxic treatments I was exposed to are no longer used, treatments today still are toxic and still occasionally cause life threatening side effects. And in spite of this, oncologists do not use the tools or protocol to at least prevent the progression and development of these issues. And this is known and documented (in my series back in January of 2017 the links posted below, YOU WANT TO READ THIS REGARDLESS IF YOU ARE A LONG TERM SURVIVOR OR A CURRENT HODGKIN’S PATIENT):
As Gloria pointed out, we survivors finally have an organization established to help, support, and guide fellow survivors in Hodgkin’s International, ( https://www.hodgkinsinternational.com/ ). Unfortunately for the most part, only if you are part of our “tribe” are you likely to even know about it. And this is why September is so important to Hodgkin’s Lymphoma survivors. We do not get the attention that breast cancer gets, or lung cancer gets, or colon cancer gets. But our issues of survivorship are real nonetheless and need the awareness.