Monday, June 2, 2008

Eff a Tumor


With Senator Kennedy’s diagnosis all over the news, tumors have been getting a lot of attention lately. It has encouraged me to detail a bit of my own story. I hope my experiences can provide some insight for others, as well as educate people on a rather mysterious topic.

The other night I caught a bit of the Discovery Health special called 200 Pound Tumor. It got me thinking more about tumors and how the difference between a benign diagnosis and malignancy can be rather slim. A fast growing benign tumor may be self contained, and not spread out or eat away at other parts of the body, but it can grow like wild fire and steal resources from the rest of body just as well. Not to say that supposedly benign growths may also morph into malignant tumors without too much warning. The key part is, that regardless of the nature of the tumor, they are usually annoying, uncomfortable or quite painful. Having experienced a few surgeries to remove tumors from my own body already, the 200 lb tumor woman, Lori, peaked my interest. Her story reminded me that I still was not clear on what the final diagnosis was for one of my last surgeries in 2004. I decided to dig up my medical records and look more closely at the terminology.

Just a few months ago I had a very pesky swollen lymph node removed from the left side of my groin area. I had originally thought it was my second enlarged lymph node occurrence, the first being in my chest back in 2004. However, a knowledgeable doctor informed me that the location of the scar on the left side of my right breast was not in a spot with nodes. With that revelation I realized that I did not know what the mass was that was removed from my right breast in 2004. Making it a habit not to dwell too much on my life’s medical issues, it would make the day rather depressing, I kept putting off digging back into my medical reports to take the complicated terminology to heart (aka do some quick Google searches)

Having already previously experienced two incidences of fibroadenoma excisions in the right breast (one in 2001, one in 2002), I was already aware of how to distinguish that kind of benign breast tumor. Those masses showed up clearly during ultrasounds (as illustrated in the top image). Their edges appeared very smooth and they were easily distinguished from the surrounding tissue. They were both very fast growing and bothersome tumors though. The second one was even quite a bit of a pain at times. Unlike my past experiences though, the 2004 mass did not show up on ultrasound, indicating that it was not the tumor I expected. All I knew was that it had to go. Since fibroadenoma was ruled out, I chalked it up to a swollen lymph node at the time. However, I should have paid more attention to doctor’s words when I was still half drugged on anesthesia, as it seems the mass removed was actually intraductal papillomatosis. That is what is listed in my medical records, along with words like sclerosing adenosis, hyperplasia and microcalcifications. It really helps to keep copies of your own records, something I hadn’t been doing until more recently. It has really helped me understand my own issues and has given me the ability to articulate past experiences accurately to different doctors. Plus, then you can spell things correctly for Google research purposes.

Doing a bit of internet research on the subject I have seen that an intraductal papillomatosis tumor consists of benign growths in the milk ducts. Symptoms for the condition appear to consist mainly of nipple discharge, but I did not experience that part. I experienced the debilitating pain part, which isn’t really a noted symptom. I will touch more on that later though. Without my own body’s pesky warning system, and my acute athletic awareness, it was apparently a condition that might have turned sour if it had been left undetected for too long. I am glad my body insisted on nothing short of a surgical excision. I have also learned threefold on the importance of breast exams. You know your body best and if something feels off, then it probably is! Relying only on tests to find abnormalities is not an ideal method. In my time I have had to keep prodding in order to get straight answers to my ailments. With my enormous family history and all the complicated medical terms indicating that I have a significant increased risk for developing breast cancer, I know not to let any little bump go unquestioned. Also if anything prohibits me from functioning as I wish to on a day to day basis, I want it gone!

When it came to the intraductal papillomatosis, it was a pretty rough and tough experience. At the time I was in my senior year at USC and I was competing on the swim team. I was hoping to improve after coming back from shoulder surgery (one among a few others…). I had an extremely tight schedule between living off campus, training and studying mechanical engineering. The last thing I wanted was to deal with a significant health issue. Maybe I was being too selfish in wishing for my body to allow me to make it one year through college without sending me under the knife. Anyway, the first symptom I experienced was mild chest pain while breathing. The pain radiated all over my chest too, left and right sides. I had a lot of trouble pin-pointing its source, at least while the pain was in a fairly mild state.

After I felt the initial onset of pain, it did not go away within a couple days, so the USC trainers suggested I had an intercostal muscle strain. I started icing down my chest after workouts, but I only got worse. Chest x-rays revealed nothing wrong with my ribs or lungs. An MRI did not hold specific clues either. After all those angles turned up nothing, somehow I knew it was related to breast issues. I kept poking around, but I couldn’t find a mass. All the while, the more I swam, the more pain I took on. It eventually came to a point where I ended up curled into a ball on the pool deck after climbing out of the water because my chest felt like someone was stabbing me with knives. It was not how I wanted my last semester of NCAA eligibility to go down. I spent a lot of time bent over in the shower and in the training room with ice pilled on my chest. I could hardly sleep because any time I tried to slightly twist my torso, sharp pains radiated through my ribs. Driving my manual transmission Civic was also quite a challenge. Just breathing was uncomfortable.

I believe it took me about a month’s time to finally discover the pea size tumor in my right breast, just around the area where the ribs met the sternum. I couldn’t believe that relatively tiny thing could cause such discomfort. I had to completely lay off all activity for three weeks for the pain to subside. Then I had to maintain a minimal training level in order to manage the discomfort. Swimming breaststroke caused me great misery, but I got through it regardless, just not at the best speed. I eventually accepted the fact that there was nothing I could do to help my situation in any timely matter, so I enjoyed what little swimming I could get through.

It was January ’04 when I first experienced chest discomfort. In the end, it was May ’04 before surgery was scheduled. The months in between were filled with searching for answers, monitoring of the situation, scheduling availabilities and medical tests. Even though it compounded the situation, I found solace at the pool. The USC swim team was pretty great. For the shy new transfer that hadn’t spent much time with them, they were very understanding. I had teammates accompanying me to the doctor and a coach who forced me out of the pool when I was too beat down. I like to think that maybe my passion to continue was a bit of an inspiration… although, at the time, I really felt like I was letting everyone down.

I am still thankful for Mark Schubert for being a tough, but understanding coach when I really needed one. I went to USC from Kenyon College where the coach couldn’t seem to grasp my issues. He had discussed with me his desire that I leave the swim team due to my health issues, at that time the breast hadn’t even come up yet; I was just dealing with inflamed tonsils. When I walked on at USC Schubert had other swimmers to worry about. It was an Olympic year and there was a lot of medal potential in that pool. Regardless he could still see when I was pushing myself too much and when I needed stern encouragement. In the summer of ’04, when I was coming back from surgery, he still let me hop into his workouts even though my eligibility was done and I was still fighting through pain. The atmosphere in the build up to Athens really strung me along. In the end though I had to step back and slow down my recovery. It took about a year to get back to feeling normal. I watched a lot of people I once shared a pool with pick up a lot of hardware at the Athens games though, no tumor could ever take that away.

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