Paul's Heart

Diagnosing Lymphoma – Why Is It So Hard?

Hodgkin’s Lymphoma is considered a rare cancer.  It makes up just 1% of all cancer diagnosis.  Its rarity is what makes it so difficult to diagnose in a timely manner.  Yet, timeliness is critical in treating Hodgkin’s as this particular cancer has a cure rate of over 85%.  Case in point.

At age 22, I was a healthy and fairly fit young man.  I did not contract colds or the flu.  The only time my family doctor saw me was to deal with a seasonal allergy.  But one day, while sitting at my desk at work, an itch on the back of my neck caused me to reach back to scratch at it.  But instead of a simple itch, I was shocked to feel a massive lump.  There was no pain, and more importantly, there were no other symptoms.  As I said, I rarely get sick, but I was not going to take any chances.  I went to my doctor.

He had told me that I probably just had some sort of infection going on, perhaps even a minor cold.  He was not concerned that this was a swollen lymph node because of its location.  He said that if it were located a bit higher he would be more concerned.  He prescribed an anti-inflammatory drug and antibiotic, and told me to get a lot of rest.  This was asking a lot of someone who exercised every day and was heavily involved in sports.  But I did as I was told.

After two weeks, the swelling did in fact go down and I resumed back to my normal activities.  Talk about being frustrated.  I had never been on any kind of injure reserve status before.  I jumped right back to the gym and resumed my workouts right where I left off.  Not smart at all, but I just felt good doing it.

Two days later, I developed a pain under my left arm pit.  When I extended my arm, I felt a pulling sensation.  I thought for sure I had strained something.  A co-worker had recommended that I see his doctor because he specializes in sports injuries.  I have only had two doctors in my life at that point, and though I had no reason not to go back to see my family doctor, I took Steve up on his offer to see his doctor.

Another family practitioner, he questioned why I was seeing him.  And I explained to him that I hurt myself exercising.  He felt under my arm, and examined the shoulder area as well.  Then he asked what I had been doing prior to the injury.  I told him that I was being treated for a cold, took a couple of weeks off and had just gone back to exercising, clearly using poor judgment going full tilt right away.  But as I told the doctor about that, he immediately felt around my neck and found the swollen lymph node I had just taken medication for.  The swelling had returned in just the two days off the medication.

He recommended that I see an oncologist – note – I had no idea what that was at the time, because he was concerned about the lump.  Me, I was concerned about the injury.  Long story short, and six second opinions later, including an oncologist, I was diagnosed with Hodgkin’s Lymphoma.

I hate telling this story, because the first thing that happens when I mention a swollen lymph node, everyone goes into a panic when they have one.  A swollen lymph node is doing what it is supposed to, handling bad stuff, sending it through your body to be handled and disposed.  However, it is when something is too much for that lymph node, everything goes wrong (I simplified that by a mile).

Bottom line, if you develop a swollen lymph node, let the doctor decide and diagnose.  But the trick is, you have to remember everything that you have been feeling up until that visit.  I am certain that I had more symptoms, but in general I am not a complainer.

The Facebook page Lymphoma And Hodgkin’s Disease Awareness And Survivors Club posted a list of symptoms to look out for, to tell your doctor, and to urge you to get the necessary diagnostics done, such as X-ray (although HD did not show up for me on x-ray), CT scans, or PET scan.  The diagnostic tools when looking for Hodgkin’s are much better than they were 25 years ago, but still require the patient to fill in the blanks so that the doctor goes in the right direction.

Here is they list of popular symptoms of Hodgkin’s Disease (and I must stress, having any of these does not mean you have Hodgkin’s – I am a horrible sweater):

1)  swollen lymph node in neck area, armpit, or groin

2)  abdominal pain or swelling

3)  chest pain, coughing, or trouble breathing

4)  fatigue

5)  fever

6)  night sweats

7)  weight loss

8)  itching

9)  alcohol pain following consumption anywhere in the body

10)  loss of appetite

I only presented one symptom to the doctor.  It is no wonder I was misdiagnosed.  But I do not fault him.  Hodgkin’s is a rare cancer, and unlike breast cancer which most family practitioners can at least have an idea of what to look for, most GPs do not, even to this day.

Standup2Cancer

This evening a special annual telethon was held, Standup2Cancer.  It is a one hour, uninterrupted telecast, broadcast on nearly every network.  The goal of the program is to raise money for the accelerated research programs for cancer cures.  This has become such a huge event, that “watch” parties are now being held.  Tonight, here in Naples, a special watch party was held by the local Relay For Life committee at a local establishment, Bokamper’s.  I was invited to be a guest speaker during the program before the telecast.  Below is the speech that I gave:

“I want to thank the American Cancer Society for inviting me to speak a few words as a cancer survivor. I am so excited to be here tonight. No, really, I am really excited to be here tonight, as anyone who has ever battled cancer will echo those sentiments. But I am really excited tonight because tonight is about an opportunity to Stand Up 2 Cancer.

We are so close to curing so many cancers. But just like the saying goes, “close only counts in horseshoes and hand grenades.” One of the main obstacles that stands in the way of finding cures for cancer is funding for research. There just simply is not enough money to fund research for all cancers, and so, many people will never get an opportunity to stand in front of you to tell their stories as cancer survivors.

So how close are we to finding cures? Conversations are no longer dominated by terms such as life expectancy, but now include the words prevention.

In 1988, I was diagnosed with a rare form of cancer, Hodgkin’s Lymphoma. This particular cancer makes up just 1% of cancer diagnosis. Yet today, it remains one of the most treatable forms of cancer with a success rate of over 85%. But you see, it still is not 100%. And that is where we need an organization like Standup2Cancer. Standup2Cancer raises funds with 100% of all monies raised going to accelerated research programs to help find cures for cancer, when other moneys for research just are not available. Funding for research for Hodgkin’s Lymphoma barely exists and is rarely questioned because of the success rate of current treatments and the rarity of the cancer. But for 15% of the people who do not survive HD, this is unacceptable. 15% means there is still work to be done. But the money for research has to come from somewhere.

Of all the struggles I have dealt with as a cancer survivor – severe late physical side effects, financial, relationships, fertility, discrimination, employment, emotional – survivor’s guilt has been the worst for me. Why do I get to stand in front of you, when so many I have known and met over my life, do not get to stand in front of anyone? Cancer has decimated my family. My grandmother died from 2 separate battles with breast cancer and ovarian cancer. I lost my sister to Leukemia. This past May I said goodbye to my father after battling lung cancer. But for me, no greater guilt exists for me, and pales in comparison to the pain and sorrow felt by the mother of a friend of mine, who lost his battle with Hodgkin’s Lymphoma this year at the age of 24, because the current mode of treatment, while curing 85% of the people, just was not safe enough for him. He received no radiation therapy and half as much of the chemotherapy that I received. This 15% is not acceptable to me which is why I proudly support the efforts of Standup2Cancer. We are so close to finding a cure, not just for Hodgkin’s Lymphoma, but safer treatments as well, and cures for other forms of cancer.  And it all starts with you.

I am living proof. The first time and the only time I ever heard the word cancer was when someone died. That was over 40 years ago. I was treated with enough radiation, that I could have eaten off the floor of Three Mile Island after the meltdown and not have been exposed to as much radiation. I was treated with a drug that was used by a middle eastern dictator to kill his people, but it treated cancer. Physically, my body has its share of late effects that came about in exchange for me surviving cancer. But I am here to tell you, progress has been made in the 24 years since. It just simply is not good enough. But after tonight, we get closer to a better and safer cure because of each and every one of you. And in memory of my friend Michael, I thank you.”

Faces Of Lymphoma

September is National Blood Cancer Month, National Lymphoma Month, National Childhood Cancer month also.  These three annual recognitions actually tie in with one another, as lymphoma is often recognized as a childhood cancer.  Of lymphoma, and which I can personally speak of, Hodgkin’s Lymphoma is such a rare cancer, it makes up only 1% of the cancer diagnosis.  Strangely, it also boasts one of the higher cure rates for a cancer, yet it is also one of the most underfunded cancers.  Imagine, to be so close to finding a cure for everyone, yet it is not a priority for research because the current cure rate is acceptable.  I strongly disagree.

My story, like so many other long term survivors, have long medical histories of maladies that have struck us, and will effect us the rest of our lives.  It was our trade off for beating cancer.  For many of us, we often wonder if it was ever worth it.  Today, better and safer treatments, yield similar success stories without the severity of the side effects like many face, however, recurrences of their lymphoma are more frequent, and for some, still not successful.

My case in point.  The story of Alese Coco.  A television commercial aired several years ago which caught my attention.  To be honest, it was quite graphic.  And as a Hodgkin’s survivor, initially I felt offended at such a graphic commercial.  But then the reality hit me.  This commercial was the truth.  Please view the following link for the actual commercial:

http://www.shootonline.com/top-spot-week-alese-coco-fight-2-win-foundations-fight-2-win-out-draftfcb

Now if you are sitting there thinking, that is awful, and you really do not want to see more, that is where you could not be more wrong.  The truth is, any illness capable of taking a life, needs to have a cure found.  Sometimes it takes putting a face to a disease makes it hit closer to home.  As it stands right now, you have two faces, my face which is on the front of “Paul’s Heart” and Alese.  We are just normal people, not famous by any means.  So let me make lymphoma famous.  Here are a list of several celebrities who have battled lymphoma, and yes, even with the fame and money, still could not win their battle:

Paul Azinger – professional golfer

John Cullen and Saku Koivu- professional hockey players

Mario Lemieux – professional Hall Of Fame Hockey player and owner of the Penguins

Andres Gallaraga – professional baseball player for the Braves

Arte Johnson – famous comedian from “Laugh-in” days

Leshon Johnson and Carl Nelson – New York Giants football players

Lauren Hart – singer for the Philadelphia Flyers pregrame

Charles Lindgburgh – famed flyer died from Lymphoma

Charles Lowe – father of actors Robe Lowe and Chad Lowe

Mickey Mantle – famous New York Yankee

Roger Maris – Hall of Fame baseball player died from Lymphoma

Jackie Kennedy Onassis – former First Lady died from Lymphoma

Joey Ramone – Rock N Roller

Dan Rowen – comedian from Laugh-in died from Lymphoma

Fred Thompson – actor and US Senator

Arlen Spector – US Senator died from complications of Lymphoma

Mr. T. – actor from the A-Team television show

Gene Wilder – comedian and actor (wife Gilda Radnor died from Ovarian cancer)

Vivian Campbell – guitarist for Def Leppard (just completed treatment for a recurrence of Hodgkin’s Lymphoma)

Andy Whitfield – actor who portrayed “Spartacus” in the Starz mini-series died from lymphoma

Having been a fan of that mini-series, it struck me as odd that someone so physically in shape and strong, could have faced such a fate.  So now I have put a lot of famous faces to Lymphoma.  Imagine, but chances are you know more than 1% of the people I listed, yet the statistic is what it is.  Now imagine 1% of the people in your lives.  Imagine the 1% of the people in the world.

So, let us meet another non-famous person, teenager Roxanne:

https://www.akronchildrens.org/cms/meet_roxanne_hodgkins_lymphoma/

For me personally, I have met hundreds of cancer patients, not just lymphoma patients.  They all have faces.  They will never be famous.  But I will never forget what they have gone through, and for many, what they have lost.  So if you are reading this, you know at least one person who has battled lymphoma.  And I am telling you, we are so close to finding a cure for Hodgkin’s Lymphoma.  And that is why I am making every effort I can, during this month of September, to make everyone aware of Lymphoma.  You can donate to the Leukemia and Lymphoma Society, the American Cancer Society if you wish.  But more importantly, share this article.  Help me to help others put a face to Lymphoma.