The long awaited visit with an oncologist finally took place yesterday. It was like any other doctor visit lately full of questions with half answers that really didn't answer anything. He did however give me a look at the Pet Scan of my body every other doctor has been fussing over since May. I have to admit that when it was explained to me that usually the brightest spots are cancer... I was indeed a bit frightened and alarmed by the body image on the computer screen. I have been saying 15 lymph nodes... I think one doctor threw that number out there at me..... it was an understatement. I tried to count quickly as I was looking but just too many and too clustered together. I basically lit up like a Christmas Tree as you have heard some say. My Pet Scan looks like I have Lymphoma... my body is acting like I have Lymphoma, but since we know for sure that a few of the chest lymph nodes are sarcoid we need to treat the Sarcoidosis first and see how the lymph nodes all respond. There were lights around my kidney, liver, lung, ...not good as I see it and explains why I feel lousy... and my liver is enlarged. OK... I will go with that... I am not game for jumping into cancer treatment if I do not need to....now the key is what treatment for Sarcoidosis will I use? The standard is Prednisone or Methotrexate and I am guessing it is going to be the Prednisone simply because it is probably the one covered by insurance. So in order for these lymph nodes to reduce I have to start treatment. If by some weird chance the other lymph nodes that were not biopsied are in fact lymphoma, then they will continue to grow and multiply in spite of my treatment and then a different treatment plan would go into action... so for now the diagnosis at hand... Sarcoidosis! As for my treatment.... I have to wait until my return trip to the Pulmonologist in September to begin any treatment. On and on this story goes... I wonder if I will ever feel any better or if this disease is going to take over my entire body?
I was told many times over the past twenty years that my "mystery" disease was probably some type of rare auto immune disease. Well I am now fifty-one years old and have finally made the list! The list on the National Organization of Rare Diseases. If you go to their website and search Sarcoidosis you will find it amongst the other rare diseases listed. I was just thinking on all of the many doctors I have seen over the past twenty years and all of the many different theories that I was given. Here are a few of them...."you may have Lupus,or Multiple Sclerosis, or Lyme disease, or Lou Gehrig's disease, or Hodgkin's Lymphoma", or......on and on the list goes. I had one doctor tell me that my body was really not "text book" and he couldn't even think of a disease that would fit all of my symptoms! Wow. So now here I am with just a few simple lymph node biopsies and have a diagnosis for this rare disease! I had never heard of it and probably some of you never have either! It is indeed classified as an autoimmune disease that causes the body to attack itself. It causes granulomas or small lumps to form in the organs, especially the lungs, heart, liver, and can affect the eyes, skin, brain, nervous system and lymphatic system. It can cause you to be more prone to infections or other illnesses. It causes chronic fatigue, joint and bone pain, muscle pain, and basically makes you feel lousy all of the time... at least this is how it is for me. Sarcoidosis can have a more mild form that some people get that comes on suddenly, is treated and never comes back again but these people usually do not have any involvement with the lungs or other organs. I happen to be one of the "lucky" ones I guess, and it seems to be the chronic form of the disease which is more complicated. I have this other complication thrown in of having way too many lymph nodes involved besides just the normal chest ones that are usually involved with Sarcoidosis. But ...hey... I feel special... my disease made the list! I am indeed a rare bird!
You've heard of people wearing many hats...meaning they have many different ways they present themselves or many different functions they perform. I am finding out that this rare auto immune disease that I have had for my entire life that just recently was given a name...also has many "hats" so to speak. My Sarcoidosis was diagnosed after I went through a month of terrible bronchitis like illness in my chest and went to the doctor for antibiotics. I was given a pulmonary function test which I did very poorly on. I then was sent to the hospital for a second pulmonary function test which I also did poorly on. It was then determined that I needed to see a Pulmonologist. A few days later I was in his office and he sent me for a chest x-ray which showed two lung nodules in my right lung and he of course was concerned. Immediately he sent me next door to the hospital for a Ct scan which showed in more detail two lung nodules, lymph nodes in my chest enlarged and of course this raised some red flags. A Pet Scan was ordered for the next week. Pet Scan was done and the results were phoned to me and didn't sound too promising. I was told that fifteen lymph nodes lit up as well as the lung nodule in the upper right lobe of my lung. Whenever anything lights up on a Pet scan of course there is the suspicion of Cancer. The next step was an Endoscopic Ultrasound with Fine needle aspiration to biopsy some of the lymph nodes in the upper chest area. This was done and the result was that there were no cancer cells present in those particular nodes however granulomas consistent with Sarcoidosis. Next was a visit to the Pulmonologist who then referred me to the surgeon ...the Thoracic surgeon who would do the lung surgery to remove the wedge of my lung in order to biopsy the lung nodule. This was one of my most painful surgeries ever. I have had about ten surgeries so I do know what I am talking about. It has now been about six weeks since my surgery and my ribcage still is so painful when I inhale. The lung nodule turned out to also be consistent with Sarcoidosis granulomas. Thankfully it was not lung cancer, and I am thankful since that is a very aggressive cancer; however what people don't realize is how insidious this disease is and can be also! Sarcoidosis causes blindness, joint and bone pain, chronic lung disease, liver problems, kidney problems, skin problems, headaches, chronic extreme fatigue, infections , the immune system basically attacks itself! And yes ...we are more prone to have cancer than the general person. Sarcoidosis in itself feels like, and mimics cancer. In talking with some other Sarcoidosis patients online I have found that most of us have at one time been told we may have Lymphoma, but it usually turns out to be the Sarcoidosis showing its ugly hats and mimicking it. However, there are Sarcoidosis patients who develop Lymphoma so there are no real answers as to why this happens. This last year I know my body has acted and felt as if I have cancer...I do not know at this point if the Sarcoidosis is solely responsible or if I indeed do have both. Usually Sarcoidosis patients do not have the lower abdominal lymph nodes light up on the Pet Scan and mine did so we will see if I am just one of those rare Sarc patients or if I indeed do have Lymphoma along with it. I go to the Oncologist on Tuesday of this next week and I hope I will come home with some concrete answers so I can begin some kind of treatment plan to help so I can at least begin to feel decent again.