World Lymphoma Awareness Day (or, all that you wanted to know about lymphoma and more!)

Every September 15th is World Lymphoma Awareness Day, nestled in Blood Cancer Awareness Month. September is all about awareness –  blood cancer, ovarian cancer, men’s cancers, thyroid cancer, and childhood cancers (which gets the most attention for obvious reasons). And in many ways, it’s the calm before the Pinkwashing storm. 

I was surprised to learn how little some people know about lymphomas. According to a Lymphoma Coalition survey in 2008:

  • When asked if they know their nodes, only half (49 per cent) of people said they know what nodes do
  • Although most respondents have heard of lymphoma, 52 per cent of people know very little or nothing about it
  • Two-thirds (67 per cent) of respondents did not know lymphoma is a type of cancer and that it has one of the fastest growing incidence rates worldwide
  • 90 per cent of people do not think enough is being done to fund lymphoma research

When asked if they know their nodes, only half (49 per cent) of people said they know what nodes do

scription: Diagram of the lymph system

Our bodies have a network of lymph vessels and lymph nodes that moves watery lymph fluid and filters out debris (ie. germs and sometimes cancerous cells).  This network drains the body’s tissue outside the bloodstream and then dumps it back into the bloodstream after it has filtered through the system. Lymph vessels are a lot like the veins that collect and carry blood through the body.

This system extends throughout the body (see left). Some lymph nodes can sometimes be felt (in the underarm and neck) in even healthy people. Lymph nodes that swell around the collar bone are ALWAYS cause for concern, though are not always the result of cancer. Other nodes are never palpable, such as the nodes located in your chest.

The nodes themselves are tiny, kidney shaped structures that can swell in response to illness, including cancer. Lymph nodes are also referred to as “glands”, particularly in reference to swollen lymph nodes in your neck in response to strep.

Within the nodes are immune cells that are meant to attack and destroy germs and disease. They are very sensitive to the presence of unwanted substances, which is why they swell. Lymph nodes also scar, so people with repeat strep throat will often have “shotty” nodes, or nodes that feel like buckshot beneath the skin. My type of Hodgkin’s lymphoma, nodular schlerosing, causes scarring and I can still feel several of my nodes. Nodes that have swollen in the past often swell much easier. My lymph nodes blow up every month around my period (so I deal with PMS combined with relapse paranoia) and with even the smallest cold.

If 100 people go to the doctor with a swollen lymph node, 80 will be sent home with the diagnosis of some kind of illness. 10 will be sent for a biopsy following bloodwork, antibiotics, and “watching and waiting” (ie. waiting to see if the node goes down on it’s own before an invasive procedure). 2 will have cancer – either lymphoma, leukemia, or a cancer that has spread to the lymph nodes. As you can see, there are a million reasons for a lymph node to swell that has nothing to do with cancer.

Although most respondents have heard of lymphoma, 52 per cent of people know very little or nothing about it

Lymphoma is a blood cancer that effects the lymphocytes, a type of cell that makes up the immune system. Typically, lymphoma presents as solid tumors around the lymph nodes, but can also spread to the spleen, bones, lungs, and other organs. Some  forms of non-Hodgin’s lymphoma are cutaneous and effect the skin.

While lymphoma is used as an umbrella term, there are many, many kinds of lymphoma. They are split between Hodgkin’s lymphoma and non-Hodgkin’s lymphoma. Hodgkin’s lymphoma makes up only a small portion of those diagnosed with lymphoma (about 8830 in the US in 2011, including me!) and is distinguished by its presence of the Reed-Sternberg cell. Within Hodgkin’s lymphoma, there are classical types and nodular lymphocyte-predominant. The former is more common and is treated by either ABVD (which I was treated with) or BEACOPP, sometimes followed by radiation. (As an editorial, if I was to do it all again, I would fight for BEACOPP. My insurance company would not cover it, but it is THE best, most effective treatment for advanced stage Hodgkin’s lymphoma and is the standard in Europe’s national health systems.) The latter is treated with a different protocol that is more similar to NHL.

Non-Hodgkin’s lymphoma includes a wide array of lymphomas including Burkitt’s lymphoma, precursor T-cell leukemia/lymphoma (the most common in children), follicular lymphoma, large B-cell lymphoma, MALT lymphoma, and mycosis fungoidis (cutaneous lymphoma)… and quite literally dozens more. Some lymphomas are indolent, or slow growing, so the treatment protocol often calls for years of watchful waiting until the disease is no longer stable. Others launch straight into chemo and radiation.

All together, lymphomas make up 5.6% of all cancers and 55% of blood cancers. They disproportionately impact children and young adults. At every young adult event I go to, there is an overwhelming population of people impacted by lymphomas. While Hodgkin’s makes up less than 1% of cancers worldwide, there is almost always at least one other person represented at any cancer event because it peaks so strongly in your 20s.

Two-thirds (67 per cent) of respondents did not know lymphoma is a type of cancer and that it has one of the fastest growing incidence rates worldwide

On several occasions, after I told people I had Hodgkin’s lymphoma, they responded with, “Oh, I was so worried! I heard you had cancer!” In fact, many doctors refer to Hodgkin’s as Hodgkin’s disease – eliminating the lymphoma relation entirely. But yes, lymphoma is very much a type of cancer that will spread if not treated.

Hodgkin’s lymphoma has sketchy at best connections to causality. The strongest connection is to Epstein-Barr virus (the virus that causes mono). However, the lymphatic system is especially sensitive to chemicals and it is no surprise that there is a jump in lymphoma rates following chemical spills and the like. There have been numerous articles speaking about the increased rate of lymphomas in NYC following 9/11.

Many in the cancer world have begun to focus on diet as a way to prevent initial incidence and relapses of cancer. And I’m not just talking about healthy, balanced diets high in vegetables and lean protein and low, if not eliminated, processed sugars. Rather, many of us are looking at the way we eat genetically modified frankenfoods that are bred for transportation and not nutritional quality or flavor. We are also looking at the use of pesticides and herbicides in our foods. While I fail at it on a pretty regular basis, I am trying to be more cognizant of the source of the foods I eat rather than just what I eat. “Real food evangelist” Robyn O’Brien gave a wonderful TEDxTalk in Austin linking GM food to the increase of food allergies. She makes reference to the increase in cancer rates to the increase in GM food. Other resources that come to similar conclusions include the China Study.

Organic-eating, local-shopping, vegan marathon-runners still get cancer, and especially (by my very anecdotal observations) these types seem to get Hodgkin’s lymphoma, so I’m in no way saying diet is going to prevent cancer. However, as an aggregate, ALL cancer rates (and especially lymphomas) have increased over the past 50 years. So has the explosion of industrial food.

90 per cent of people do not think enough is being done to fund lymphoma research

All cancer needs more funding. All of them. Without fail. More money will help support more researchers and more studies. This is true of any disease. But unfortunately, blood cancers do not have a catchy hook to drive awareness campaigns. We don’t have a tragically low survival rate like prostate cancer. We don’t have the awareness power that breast cancer has. We often have to resort to using the high rates of childhood cancer for lymphomas to get funding.

Getting funding for cancer research often breaks down along two lines – which are the most common and which are the most deadly?  Lymphomas are neither among the most common at 5% of cancers, nor are they the most deadly with most forms of lymphoma having over a 60% 5 year survival rate.

Hodgkin’s in particular struggles to get funding because it is a fairly uncommon cancer with high survival rates. But for the 10-15% for whom frontline and secondary treatments have failed, there are less options. Recently, we’ve had a great breakthrough with Adcentris, a chemotherapy to use after a failed auto-stem cell transplant for Hodgkin’s patients. Drug development takes a LOT of money, so while progress is slow moving, Hodgkin’s is considered among the most well-funded cancers per death (cervix ($18,870) and breast ($14,095) and on Hodgkin lymphoma ($12,791)). But when you consider that only a little more than 1000 people in the US die of Hodgkin’s a year, that is a teeny, tiny piece of the pie.

The Leukemia and Lymphoma Society is one of the best places to give to increase both research funding and patient assistance.

Posted in Lymphoma Info
2 comments on “World Lymphoma Awareness Day (or, all that you wanted to know about lymphoma and more!)
  1. Caroline says:

    Thanks for the great description! Its very helpful.

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