Saturday, January 7, 2012

My Fibroid Surgery in Japan (Diagnosis, Decisions & Pre-Op)

I've wanted to take some time to discuss my experience with fibroid tumors and having laparotomy (open abdominal surgery) here in Japan. It's been a bit over a week since I came home from the hospital, and I'm finally in a place where I feel I can write this up. I'm going to be as baldly honest as I can. Looking back, I realize I should have been a lot more proactive about this at certain points, and I'm grateful that things worked out as well as they have. Tomorrow, I have my post-op followup appointment with my doctor, where I'm anticipating good biopsy results and to hopefully be cleared to return to work on Tuesday.

A bit of background on Fibroid tumors. These are very commonly found tumors in women. About one in four women have fibriods, and most of the time they remain small and don't require any surgery. Fibroids are 99% + benign. Surgery is required when fiboids (a) grow rapidly (like mine) and/or (b) affect your life by causing heavy bleeding with your period and serious pain. (this didn't happen to me) . Other symptoms of fibroids include frequent urination and eventually a 'pregnant' belly, as the fibroid expands your uterus just like a baby. At the time my fibroids were removed, my uterus was equivalently sized to being four months pregnant.

I was diagnosed with fibroid tumors in August of 2010. This was the result of a general gynecological checkup at a local hospital: the Toyota Kosei Byouin (豊田厚生病院). My doctor, Dr. Yumi Hariyama, as a part of the regular checkup did an ultrasound in the office. There she found one 6cm fibroid as well as a four smaller tumors. At the time, six centimeters was pretty much meaningless to me. I'm crap with metric, and in my mind, I didn't really get this was the diameter of the tumor, which I'm guessing was about the size of a clementine orange. (I do prefer the American way of comparing tumors to fruits as opposed to just giving measurements.)

Even though I really didn't get how big my large tumor was, because my mother has a history of fibroids and uterine cancer, I was understandably concerned and scheduled surgery for the following March. Dr. Hariyama was on the fence at the time as to whether surgery or watchful waiting was a good solution, but she agreed to the surgery. At the time, I scheduled to have laparoscopic surgery to have the tumors removed. I ended up canceling the surgery due to a number of reasons, both rational and irrational. I told my doctor that I was going to attempt having the surgery done at home in the States, but due to insurance reasons and the general business of my life, this wasn't possible. I had a followup appointment with Dr. Hariyama in November, where she said the tumor appeared to have shrunk.

After that appointment, I was supposed to return in six months for another followup, but this followup didn't happen until the following August, 2011. This was entirely my fault. Having too much fun, my tumor was asymptomatic, and my doctor had originally seemed on the fence about the necessity of surgery at all (I'd pushed for it): all of these things made me less concerned about solving the problem as I ought to have been. At my November appointment, my doctor also recommended I stop all oral birth control pills. As I had run out, this wasn't difficult to manage, but I was concerned if this recommendation was medically necessary or due to the tendency in Japanese medicine towards fearing birth control pills. I resolved at this point to see a doctor in the States to find out if it was really necessary for me to stop birth control pills in order to keep the tumor from growing.

As my fibroid was mostly asymptomatic, the only symptom a gradual increase in the frequency of urination (ie: I had to go to the toilet more often, which was annoying) I basically forgot about it until July, 2011, when I noticed that if I laid flat on my back on my futon, I could feel a mass in my abdomen. At first I panicked, but then I wondered if possibly my fibroid tumor had gotten larger. I was due to return home for the summer, so I scheduled an appointment with a doctor at Planned Parenthood, partially to look at the mass and also to discuss what kinds of birth control I could take.

Looking back, I probably should have panicked more and ran straight to the doctor when I felt the tumor, but I hadn't been in the habit of palpating my abdomen, so I figured it was more the tumor had always been like that or maybe grown a little rather than it had almost doubled in size. I think this was a bit of denial on my part as opposed to rational thinking. In retrospect, I should have been more proactive about things, which I will be in the future (though hopefully I won't need to be, lol).

When I saw the Planned Parenthood Nurse Practitioner at home, she palpated my uterus and said that I most likely had a very large fibroid, and that it was similar to as if I was four months pregnant. She had actually given me a pregnancy test without my knowledge before proclaiming I most likely had a fibroid. I mentioned that my Japanese doctor had told me I had fibroids, one being six centimeters. I asked her if she thought I needed surgery and she said not to rush into it, but that my fibroids were rather large so surgery was a possibility. I also asked about birth control. She agreed with Dr. Hariyama that birth control pills were not a good idea because of the estrogen, but that I could do the three month Depot Shot. I did this while in the office. She suggested that I do a followup appointment with my doctor when I returned to Japan. I agreed.

While centimeters did nothing for me, four months pregnant scared the hell out of me, so when I got back to Japan at the end of August, I went in immediately for a followup appointment with Dr. Hariyama. She did another ultrasound and immediately scheduled me for an MRI. After the MRI, she said my tumor had grown significantly. This is where the language barrier went a bit awry, (she speaks excellent English, but there was a mistake somewhere) because I thought she said the tumor had grown from six to seven centimeters, but I found out two months later that she'd really meant that my tumor had grown from six to ten centimeters. Thinking about fruit, ten centimeters was somewhere between 4-5 inches, which seemed like a grapefruit to me. Yikes!

At the time of my MRI, Dr. Hariyama also dropped another bombshell on me: instead of doing the 'easy' laparoscopic procedure, the growth of my tumor and the fact that I now had five more meant that she wanted to do laparotomy. Open surgery! The thought terrified me!

When I was in the ninth grade, my mom had open surgery for fibroid tumors. She had an incredibly difficult recovery. Watching her go through this made me never want to experience the same thing. Now, not only was I possibly going to have to have open surgery, but I was going to have to do it in a foreign country! I asked Dr. Hariyama if laparoscopy was totally off the table, or if she could try it. She said she could try, but it would depend on if the shot (Lupron) that I would receive for four months prior to surgery succeeded in shrinking my tumor. The size, location, and volume of tumors made it very likely though that if she went in to do laparoscopy that she might have to switch halfway to laparotomy anyway.

At this point, I was hell bent on having the Laparoscopic procedure. I was desperately worried about the recovery, and having witnessed my mom go through open abdominal surgery twice, I really didn't want to go through that hell. At the same time, I was worried because my doctor, while willing to try laparoscopy, didn't really seem so convinced it would do the trick. I decided to try the shot and see if it worked. I was optimistic about the Lupron shot's efficacy though because I'd had one shot prior to my November appointment, and the tumor had shrunk from that.

I received monthly Lupron injections for four months before my followup MRI. In the intervening time though, I'd received a second ultrasound (at my request) because the tumor had felt like it was growing when I palpated it. The ultrasound (much less reliable than an MRI) seemed to show the tumor had shrunk. This turned out to be in error, as I found out on the followup MRI. My tumor had not shrunk at all! It had gotten a bit more fluidy, but that was it. Now I was faced with the very real possibility of having open abdominal surgery.

Dr. Hariyama restated that she was willing to give Laparoscopy a try, but there was a 50% chance that during the surgery she would have to change her mind and do Laparotomy. At this point, between my own personal terror and the hormonal issues that the Lupron was giving me (I had no real physical symptoms beyond some very minor joint pain and occasional hot flashes, but my ability to cope with stress or surprises was greatly reduced on the medication, and it also killed my short term memory), I had no idea what to do! I wanted to discuss it with my mom, but my mom's experience with abdominal surgery as well as the fact that she was recovering from a resurgence of breast cancer (which she hadn't told me she was dealing with until halfway through the process) made me very reluctant to tell her anything that would stress her. Because my decision making was totally a mess at this point, every time I sat in Dr. Hariyama's office, I assumed she needed a decision right then, so I just kept waffling, driving both her and me insane.

This brought me to December. A lovely and amazing volunteer (Sachiko-sensei) at one of my schools volunteered to go with me to the hospital the day of the surgery and to offer me any translation help I needed in advance of the surgery. She's Japanese and had lived in the US for over 15 years. She said she knew how difficult it was to have surgery in a foreign country and wanted to do everything she could to help me. I am so incredibly grateful to her for all of her help. She was incredible, and absolutely saved me both emotionally and physically as I went through the pre-op process.

I brought her with me for my final pre-op visit with Dr. Hariyama and also to help me translate with the anesthesiologist. (Dr. Hariyama speaks English but the anesthesiologist did not). At this time, they also took 500ml of blood to bank for me prior to the surgery, so if I had blood loss, I could receive my own blood back. I asked Sachiko-sensei to just touch base with Dr. Hariyama in Japanese to see what she really wanted me to do, because Dr. Hariyama gave me a 50% chance on the laparoscopy and kept insisting that it was my decision about what to do.

After our three way conversation with Dr. Hariyama, I learned some critical pieces of information (that I'd probably been told before, but my tendency to burst into tears at the idea of open surgery I'm sure wasn't helping my retention of information). First: the laparoscopy would require five hours on the table, while the laparotomy would only take two and a half hours. Dr. Hariyama believed that as I would be asleep, the differences in surgical time would mean little to me, but I didn't like the idea of being under anesthesia any longer than I had to, so the idea of a shorter surgery really appealed to me. Second: she also said that if the laparoscopy didn't work, she might have to do a vertical incision as opposed to a bikini cut to do the laparotomy, which would mean a more visible and difficult scar. (and three other small ones). Third: she said that the most likely reason why she'd have to switch would be due to the possibility of extreme blood loss. Fourth: I had until the day before my surgery to make a final decision.

The fact that she stated that I had time to actually do research and make a real decision (why I didn't think of this on my own, I don't know) really settled my mind. Even so, just from our brief conversation, I was beginning to change my mind about laparoscopy. Open surgery was looking like the better choice. I asked Sachiko-sensei what she would do, and she said if it was her she'd do the open surgery. Over the course of the next week, I discussed the problem with friends, and emailed two of my friends in the States who are doctors. My one friend is a General Practitioner, who forwarded my very detailed email to a colleague in OB-Gyn. His colleague responded to me in less than one hour recommending the laparotomy. My other friend, currently an ER physician but who had previously done a partial residency in OB-Gyn, sent a more detailed email basically stating the same thing, further adding that if it was her, she'd do the open surgery.

At this point, I decided that open surgery was the way to go. Three out of three doctors agreed, as well as all of my friends I discussed the surgery with. Once I made the decision, my stress about my surgery dramatically reduced. Because I didn't want my mom, who had had surgery 2 weeks before my scheduled surgery, to panic about my having open surgery, I decided not to let her know until after I was done. This was a very difficult decision for me, but it was the right one. I was also very fortunate because while I was in a foreign country, over the past year and a half, I have made many wonderful friends who went out of their way to help me in so many ways. Fellow ALTs, teachers from my schools, friends my company, friends from Sunshine conversation group, and so many others really rallied to my side. My cup overflowed with offers of help, prayers, and good wishes.

Even as I write this now, my eyes are stinging with unshed tears at about how amazing my friends here have been to me. I also had the incredible support of my best friend Steph, who listened to me cry and stress about what surgery I was going to do, helped my mom out with her post-op recovery, and basically did everything that an amazing best friend could to support me half a world away. Thanks to the internet, Skype, and smart-phones, the world is so much smaller. I was able to call my mom through her surgery and mine, and that also made a world of difference.

In short, my surgery was a wild success. I will write a followup blog going through the nitty gritty of the surgery process and aftercare, and a final blog about payment, but as it is almost 2am, and I have to go in for my Post-Op followup tomorrow morning, I'd best be going to sleep.

If you are facing surgery in Japan, especially fibroid surgery, definitely send me an email or comment. I will be posting more in the upcoming week on my surgery.