First, I just wanted to thank everyone for their support through comments on the blog and Facebook and messages/emails. I was hesitant to actually post it anywhere, so I’m excited to have such great feedback.
A lot of you expressed concern for how I’m actually feeling. I plan to write about side effects (including hair loss – the biggie!) in the near future, but I can assure everyone that I’m feeling relatively good. In fact, other than being bald, you probably wouldn’t know I was sick if you saw me in person. Except for the few days after a treatment, I don’t feel nauseous and I have a lot of great meds to help keep that all in check.
I thought it might be helpful if I shared some information about non-Hodgkin’s lymphoma and the sub-type that I have, diffuse large B cell lymphoma, before I go into too many details about my treatments and side effects. In my mind, the disease becomes less scary if you know more about it. This also gives me the opportunity to share information about my prognosis, which is quite good as far as cancer is concerned.
As an aside, this is the first time since I’ve been diagnosed that I’ve looked up specific prognosis/cure rate information for myself. Up until now, I’ve completely believed what my doctors have told me without fact checking them too much, which might be surprising to my biologist friends. While I know many of you would run to the scholarly journals, I have steered far clear of them and just placed my faith in my doctors telling me the truth as they know it to be. My rationalization for this is that it really does me no good to dig deep into the literature. I have cancer – reading tons of papers and about abnormal cases wasn’t going to cure me, but I believe being positive and putting trust in my doctors would. I did do some reading on basic websites to make sure I understood everything and I was also given tons of literature in the hospital, so that sufficed for me. To each their own, I suppose.
Warning – I’m about to go all science geeky on you. I’ve tried my best to avoid too many technical terms. Most of this info was summarized from the Leukemia and Lymphoma Society webpage, which is a great resource on blood cancers, and the Cancer Research Center of the UK, which states their information quite clearly and in an organized fashion (typical of Brits).
Cancer is basically a situation where the cells in a specific area of your body go rogue and begin to divide at an uncontrollable rate with damaged DNA. Not to scare you, but these rogue cells exist in everyone’s body all of the time. Fortunately, the human body has mechanisms to identify rogue cells and kill them but the mechanisms of identification and/or killing in specific areas can be damaged. If that system fails, your immune system should take over as a backup to isolate and kill rogue cells, but as you’ll see below, non-Hodgkin’s lymphoma is a cancer that attacks your immune system, so that was a non-starter in my case. The abnormal cells will continue to divide at an alarming rate, eventually forming a tumor and will spread to other areas of the body if not treated.
Lymphoma is a blood cancer, specifically originating in the lymphatic system, whose role is to protect against disease and infection. The lymphatic system includes lymph nodes and vessels, the spleen, bone marrow, and blood plasma among other things. The lymph nodes contain white blood cells called lymphocytes that kill diseases and infections that might enter the body. The nodes are connected to one another by lymph vessels and those lymph vessels also connect to your blood vessels. This is how lymphocytes enter the blood. There are three different kinds of lymphocytes, including B cells that produce antibodies to fight infection.
There are two main types of lymphoma – Hodgkin’s and non-Hodgkin’s (NHL). NHL is the 7th most common cancer in the USA, with aggressive (fast growing) sub-types making up 60% of all NHL cases. Diffuse large B cell, the most common form of aggressive NHL, is diagnosed in half of the NHL cases in the country, so I have a lot of company.
For those of you who are Curb Your Enthusiasm fans, you will know Hodgkin’s lymphoma as the “good Hodgkin’s” (http://youtu.be/Zd-AEkvmg54), because of its higher cure rate than non-Hodgkin’s. As you may have already sensed, Jeff and I cope with pretty much everything in our lives, especially my cancer diagnosis, using (often irreverent) humor, so when I told him the definitive diagnosis of non-Hodgkin’s lymphoma, we were both quiet for a moment and then I asked, “Is that the good Hodgkin’s or the bad Hodgkin’s?” This was one of my many times throughout this process that we both knew I was going to be just fine.
After my oncologist spoke with me about my specific diagnosis, the first question out of my mouth was, “What is the prognosis?” The prognosis for most cancers depends on a number of factors, including your age, health prior to the diagnosis, whether the tumor is localized to one area or has spread, and your stage. The diagnosis rates of NHL increase with age generally, with most patients being 55-60 or older, but my doctor informed me that diffuse large B cell lymphoma of the mediastinum (chest cavity) is one of the most common cancer diagnoses in young women between the ages of 20-40.
Fortunately, he said that diffuse large B cell lymphoma is highly curable in people of my age group and health profile when diagnosed in the early stages. I am relatively young, was in good health prior to the diagnosis, the tumor is localized to the chest cavity, and since my blood work wasn’t showing much other than usual tumor markers, he knew I was in an early stage. I had no idea that oncologists even used the word curable. I had always heard of cancer going into remission but never thought about being cured. I suppose I just thought cancer survivors lived in a permanent state of remission. (Perhaps this is because most of my family members who have had cancer either passed away from it or are living with it as a chronic condition.) “Curable” seemed like a forbidden word when talking about cancer. When my doctor said “curable”, I thought it was like the secret word in Pee Wee’s Playhouse and everyone in the oncology ward would scream if they heard someone say it.
To clarify, when you are declared cancer free after your last treatment, you are in remission. In the US, you are considered to be “cured” if you are cancer free for more than five years. I’ve read in several European studies that they measure cure rates after 3 years cancer free. Whether you’re European or American, cure rates for young women with diffuse large B cell lymphoma are 85-90%, perhaps even slightly higher depending on what studies you read, so the odds are definitely in my favor.
When I was in the ER and the resident told me that I had a 12-13cm mass in my chest, my first thought was lung cancer. Looking back on it now as a biologist, I know that was a really unlikely diagnosis since primary organ cancers are typically slow growing, while diffuse large B cell is described as fast growing and aggressive, and primary organ cancers are often detected on the millimeter (not centimeter) scale. I had an X-ray 15 months prior that showed no sign of anything, so it was unlikely that lung cancer appeared as a large tumor in less than a year. However, when you first find out you have a giant mass in your chest, logical thought flies out the window. I did know, however, that the prognosis for lung cancer is not good as in most cases when lung cancer is diagnosed, it has spread there from somewhere else. At that point, survival rates are quite low (less than 10%), and even if it was localized, survival rates are still pretty low (25% or so).
Most of the doctors told me from the start of my stay in the hospital, well before even my biopsy, that if I had a lymphoma as they strongly suspected, most are highly curable in people of my age. The news that this was likely a lymphoma of some kind, as opposed to lung cancer, was then a huge relief. It’s funny how your perspective changes quickly in situations like this.
I would like to think that my positive attitude would be the same if I had some type of primary organ cancer with a different prognosis, but I’m not going to lie – knowing that the cure rates for the type of cancer I was diagnosed with is so high makes it easier for me to be positive and full of jokes. I also refuse to believe I’m in the 10-15% of people who aren’t cured – it really hasn’t even entered my thoughts as a possibility.
And (spoiler alert!!), this whole situation has gotten a lot easier since my mid-treatment CT scan revealed that my once 12-13cm mass is now down to about 5cm. It hasn’t been easy getting there, but it could be a whole lot worse.