Aug 13, 2013 - 12:43 pm
Hi. My name is Emily. I am a 26 year old teacher living in PA. I had a partial nephrectomy on the right side 2 weeks ago today. My doctor told me the 2.3 cm mass turned out to be a chromophobe. Everything has happened incredibly fast and I've found myself at a loss for how to process it all. Here's my story.
About two years ago, I was undergoing some routine testing when I got a phone call from my doctor saying that my liver values were extremely elevated. I went through a battery of imaging and testing only to be told that there must have been a lab error as there was nothing wrong with my liver. But the radiologists did find a small lesion on my right kidney though it was nothing to worry about, probably a cyst, but would be monitored. My gastroenterologist ran all the tests and passed the information onto my general practiioner urging her to follow up. At the time, I had been so worried about the results in regards to my liver that I don't think I fully grasped the situation and certainly didn't feel comfortable asking questions. I don't think I even felt the need to ask questions as noone seemed too concerned.
Fast forward to July 2013. I saw my gastroenterologist again for a regular check up. I wasn't planning on sharing any new complaints but as he asked me questions I realized I had been experiencing some new pain in the middle of my abdomen, right below my chest. My doctor, concerned about gallstones, sent me to have an ultrasound where the technician found, no gallstones, but that the lesion on my right kidney had grown. This of course launched a referral to a urologist along with additional testing.
The urologist told me before I had an MRI that there were 3 possibilities: a cyst, a blockage, or a tumor. Once the MRI ruled out the other two options, he said that because of the complexity of the tumor's location he would have to remove the whole kidney but that he wasn't comfortable doing so without a biopsy which is apparently risky as it can spread cancer cells to other parts of the body and is done by a radiologist, not the doctor. This was the first time in the process I began to feel emotional. He is telling me that it's a very small tumor, if it's even a tumor at all, and yet in the same breath he's talking about removing the whole kidney? Don't get me wrong, I would've done it in a heartbeat if it was going to save my life but something about the doctor, his treatment plan, and his overall demeanor made me uncomfortable.
At this point I saught a 2nd opinion from a doctor in NYC that was recommended to me by a friend. He was wonderful. He told me given my age and the small size of the tumor he would do everything he could to save the kidney and we planned for a partial nephrectomy. I had surgery on July 30th. It was rough. I had a reaction to the morphine so I had to be taken off of it a few hours after surgery. The pain was so intense that everytime I was asked to move, my blood pressure and heart rate would go way up. I was on oxygen for the first 24 hours and my blood counts were all over the place. I had a catheter and a drain and I was miserable. And all they kept asking me to do was get out of bed, walk, etc. In retrospect, I understand. Being more active did get me out of the hospital sooner and it did help my recovery. But at the time, it was just awful.
Now I just have so many feelings and emotions about the whole thing. It's an incredibly strange feeling to have been told for 3 weeks that you may have cancer and then all the sudden they say well you did have cancer but now it's gone. I'm just trying to catch up mentally and emotionally. I don't really know what this means in terms of the rest of my life. I know that this particular type of cancer has a low reoccurence rate but I wonder if I'm more likely to develop other types of cancers. I've kind of been through this before as my little sister is a survivor of Hodgkin's lymphoma, diagnosed at 17 years old. But she went through surgery and chemo, lost her hair, gained a bunch of weight. I kind of feel like a cancer "fraud" in comparison. And then there's my poor mother who can't help but wonder how she ended up with 2 kids with cancer. It's all just...a lot.