Friday, March 22, 2013

Post-Op News and Blues

Altes Museum Berlin
There is a reason that radical surgery is recommended for vaginal cancer, many cancers; the surgeon cannot see all the cancer cells, and if they leave just one behind it can turn into another tumor or travel and create a metastasis somewhere else in the body. There are many reasons why radical surgery is not always the best option; patients are not just surviving cancer treatment, we are living long lives and we have other priorities beyond pure survival. Like sex, for vaginal cancer patients who may live another 60 years.

I'll qualify by pointing out that throughout this process we have chosen treatment options that prioritize success and survival over everything else, but with an eye for options that make sure I'm not being over-treated.

For example, the pathology post-op showed that one of the removed lymph nodes tested positive for cancer cells, which means I have to undergo pelvic radiation. This would be true no matter how many organs were removed. More surgery is not always better, and for me it would have been a waste.

My surgeon removed the obviously cancerous tissue in the vaginal wall, knowing that I would most likely have to undergo radiation because there's no guarantee he'd get everything. He said later, only to Joshua, that during surgery he knew that the textbook thing to do would be remove everything (vagina, cervix, uterus), but he just couldn't do it. He wanted to give me a chance, and that is a phrase he said to me many times. Not just a chance to survive, but a chance to live.

The cancer treatment textbook is still being written and re-written all the time, especially for rare cancers like vaginal cancer. During the 1950s and '60s, surgeons went farther and farther with radical surgery until they were disabling people. It took a long time for them to realize that the success of surgery has more to do with the stage of the cancer than how much tissue is removed.

While I was recovering from surgery, I was not told about the pathology report. Poor Joshua was, however, and he suffered to keep it a secret so I could heal in ignorance. My surgeon also suffered while he kept it a secret and he would stop by, ask how I was doing, and rush off again. Both of them were visibly relieved when we finally talked about everything.

When I was mostly better, I had a visit from an oncological psychologist. She was smart, funny, sensitive, and just the way you want a psychologist to be: a concerned friend with no investment in anything but my recovery and health. She helped me to clarify some things, even before I knew they'd need to be clarified.

After my first weekend back at home, we went to the hospital and my surgeon finally sat me down and told me about the results. Besides the one lymph node, pathology post-op revealed that there were definitely additional cancer cells in the vaginal wall. They call this "no clear margin", which refers to the edges of the tissue that was removed. If there are no cancer cells towards the edges of removed tissue, there's a clear margin of where they had grown and where they were not. I had a clear margin on one side, but not the other. The surgeon said I could have the rest out in another surgery plus radiation, or opt for radiation and low dose chemotherapy. Option 2, thank you.

DRK-Klinikum-Westend (surgery hospital)
I asked my surgeon if he'd be writing a paper about me. He said that, yeah, if I go for one year without a recurrence, he'll get his PhD from me. I told him I wanted my name on that paper as a contributing author and he gave me a high-five. It's good to have post-cancer treatment goals.

He also told me that my fertility was likely to be compromised by pelvic radiation. He said there was still a chance I could get pregnant, but that I might want to freeze some eggs. I had never imagined wanting to do such a thing. Poor little frozen egg, popsicle potential babies. We went home to think about it. We didn't have much time, because the egg producing and freezing takes about 2 weeks, and I needed to get moving on the radiation planning as well.

I always thought that if we wanted to have kids, Joshua and I would be able to. Last year we talked about trying to get pregnant this year. At the same time, I never thought of myself as someone whose life would be incomplete if I didn't have babies.

So I was stunned to find myself completely breaking down at the thought of not freezing some eggs, just in case. I could not handle the thought of letting go of that option. With everything that had happened, it was too much to decide that we'd just wait and see if we could have babies later on. Egg freezing was the only choice we could make.

Our next meeting was with a radiologist, and it was tough. His bedside manner was not the gentle and sympathetic manner we were used to. Instead he gave us a grim picture of the situation. The most fascinating thing was that he didn't tell us anything new, it was just the way he said it. He implied that freezing eggs wouldn't be worth it, because there was a good chance that we wouldn't be able to use them, except with a surrogate, which is illegal in Germany. He reminded me that the only thing that mattered was that I live, so I should just forget about having children and focus on cancer. And he seemed to think that having radical surgery was the best option. I'll live, who cares how I'll feel?

He also told us that we could always just adopt, as if that's no big deal and a perfect substitute for having a baby myself. I've always thought about adoption, Joshua and I talked about adoption before we knew I had cancer. But that's a different conversation altogether. I'm going to write a whole blog post just about adoption, no doubt about it. But after that comment about adoption, I felt like this was a radiologist I never wanted to see again. He was insensitive, the way he talked about possible problems felt like he was making threats, and he did not think about anything but 'kill the cancer'. This is the attitude that all oncologists used to have, and I plopped him into the part of my brain where I store depressing relics of times past. Go be with the leeches. Good bye.

Many rides on the U-bahn
However, he did do us the favor of referring us to someone else to talk to, an oncologist who knew about my case (all these doctors work together to come up with treatment plans for cancer cases at the hospital). Our meeting with this doctor was altogether different. Again, he gave us the same information about the situation as the surgeon and the radiologist, but it came across so differently that we left feeling like he'd given us the opposite news. The only difference, besides his attitude and manner, was that he gave me equal odds with either treatment option, while the radiologist had given me slightly better odds with surgery.

Essentially, we're looking at a very good chance that after either procedure - surgery/radiation or radiation/chemo - I would be cancer free (80-90%). There are no guarantees, of course, but this is meant to be curative treatment. My fertility would be compromised, but nobody would say to what extent. The fact that my ovaries had been moved out of the way was great. Frozen egg insurance left lots of doors unlocked, at least. But my uterus was another question altogether.

Charité Virchow (radiation/chemotherapy hospital)
For the next stage of treatment, I had to decide whether I wanted to have the pelvic radiation in a different hospital than where I'd have a more focused radiotherapy called brachytherapy. I could also have chosen to have chemo at the oncologist's office. Instead we opted to do it all in one place, which meant a big hospital where everything is grey and cement and slightly dingy looking. The good news is that it meant my radiologist would be a woman of a different generation of radiologists than the last guy. Phew!

Again, vaginal cancer treatment has no standards. Not even the staging is widely agreed upon. I am part of the giant cancer experiment going on all over the world. There is a place in Texas called MD Anderson where they are trying to get a better idea of what is the best option for women with vaginal cancer. My surgeon had seen their information. He was also talking to someone at Sloan-Kettering in New York, to see if they had more information or other ideas. I have had, quite literally, a multi-national team of gynecological oncologists contributing to this treatment plan. I may be a rat, but I am one picky rat with high expectations.

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