Lymphoma is a real cancer

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The lymphatic system runs throughout the whole body. It is very real!

I have cancer, hence why I am writing this blog. My actual diagnosis is Grade 2 Follicular Lymphoma, a type of non-Hodkin’s lymphoma. Even before I knew what all of that meant I thought it sounded bad. Over the last couple of months I’ve come to find out that some other people don’t think it sounds as bad as it is. I will expand upon that in this post.

I should mention the origins of this post actually came about due a support-group conference call I was on earlier this afternoon. A group from Illinois invited me to attend their teleconference and speak about my experiences blogging. I enjoyed the chance to interact with other cancer patients and hear other stories. One topic that came up during this teleconference was dealing with people who perceive blood cancers, especially lymphoma, as a “fake cancer”. This wasn’t the first time I’ve heard the term. Actually it comes up a lot in various support groups. Blood cancer patients, again especially lymphoma patients, are often treated differently from other cancer patients. It is an odd occurrence I probably would not have believed if I hadn’t seen it first hand.

One of the problems I believe is that the average person simply cannot relate to lymphoma. Lymphoma is categorized as a blood cancer, but it is the actual lymphatic system which is infected with cancer. How many people (other than doctors) actually know what the lymphatic system is or what it does? I’ve come to find out very few people do. When people think of cancer they think of breasts, lungs, prostates, or some part of the body that can be identified. I’ve had people give me blank stares when I told them I had multiple lymph nodes which had become swollen due to cancer. Actually more than once I’ve had people say “oh you have one of the good cancers” when I try to explain my condition. Every time that leaves me silent. I still haven’t come up with a good response to that. But I remember most people really don’t know what the lymphatic system is and they really don’t know how to relate.

Another problem is that most lymphoma patients, including myself, usually look pretty good. Even after four rounds of chemotherapy I have had multiple people tell me I look great. All of my pain and scars are on the inside. There aren’t any scars or physical signs advertising the fact that I have anything major going on with my body. Actually in my case I probably look better than I did prior to starting chemo due to the lymph node that was restricting my breathing. Now that I can breathe again I’ve been told my color looks better than it has in months. Unless I tell people that every bone in my body hurts, especially my shoulders and lower back, they don’t realize I even have any pain. I do a good job of trying to hide that pain.

I have found a way to get more people to understand I have a “bad” cancer. All I have to do is say the cancer has spread to my bones, which it has. Actually that is probably what is causing most of my pain. As soon as I tell people the cancer has moved into my bones they will say something like “oh my gosh, I’m sorry” or “oh wow, you really do have a serious cancer”. Like I mentioned above people need something to relate to, and bones are definitely something people have heard of.

Don’t get me wrong, I am not writing this post to complain. I do think my situation could be a lot worse. But I think it is important to let other lymphoma patients know they are not alone in how their diagnosis is perceived by some people. I really don’t think any of the people acting as if lymphoma is a lesser cancer are trying to downplay the cancer. Instead I think they have problems relating to the type of cancer we have so instinctively assume or hope it is better than other more well-known types of cancer.

Lymph nodes

109694570For today’s post I will tackle a reader question. This question comes from Angela:

Ken. What does lymphoma mean? Someone I work with has lymphoma cancer like you.

That is a great question. Lymphoma is cancer of the lymphatic system. A nice easy answer. But I think I’ll go a little bit more into it and explain what the lymphatic system is.

The lymphatic system is part of the body’s immune system. On the University of Rochester Medical Center website I found a really good definition of the lymphatic system:

It helps the body fight disease and sickness. The lymphatic system consists of a series of thin tubes and clusters of lymph nodes throughout the body. These tubes carry fluid, called lymph, through the lymph nodes and back into the bloodstream. This colorless, watery fluid is rich in white blood cells. Lymphocytes are the main type of cells. They help the body fight off infection. A lymph node is about the size of a pea and has large numbers of lymphocytes. Groups of lymph nodes are found in the stomach, chest, groin, and neck. Some of the body’s internal organs are also part of the lymphatic system. These organs include the bone marrow, spleen, thymus, and tonsils. Other organs, such as parts of the digestive tract, also contain lymph tissue. Lymphoma can start in any part of the body where there is lymphatic tissue.

The picture I have attached to this post is an old artists rendering of the lymphatic system. As part of their normal operation lymph nodes will swell as needed. For instance if the body determines more lymph cells are needed to fight a throat infection, the lymph nodes in the neck may swell so they can create more lymph cells for the body to use fighting that infection. In the case of lymphoma there is also likely to be swelling of lymph nodes. In my case I had many (probably dozens) lymph nodes which were swollen. One difference between normal swelling of the lymph nodes and my cancerous swollen lymph nodes is their hardness. Normally even swollen lymph nodes are squishy. My cancerous lymph nodes felt like a hard rubber.

From my PET scan I was able to see that my lymphatic system is well infected with lymphoma. My spleen and bone marrow are also infected, both of which are part of the lymphatic system. Actually I have had major digestive issues over the last couple of years. I now wonder if this isn’t somehow due to the lymphoma.

The most common lymph nodes people probably hear about are probably the tonsils. Many people, including one of my sons, have their tonsils removed due to childhood illnesses. Also you have likely had doctors check your lymph nodes or the lymph nodes of you children. I know recently I had to bring my children in because of a virus. One of the first things the doctor did was feel their necks, just under the back jaws. This is one of the places where lymph nodes are accessible from the outside. A swollen lymph node could give the doctor an indication the body’s lymphatic system has become active to fight infection.

In a future post I will talk more about lymphoma and the different types of lymphomas. For now though this is a good primer about lymph nodes to help people understand them. I’ve also included some of my personal examples dealing with the lymphatic system.