Friday, July 8, 2011


Well, I'm finally being given a choice in my cancer treatment. I'm finally allowed to decide what I want. But now I have a new problem.

I don't know what I want.

Or maybe it's better to say that I don't know what's best for me. I've left everything in the doctors' hands until this point. I've done whatever they've told me to do. I've followed all of their instructions. I've suffered through every scan, test and surgery they've suggested. I've questioned them and accepted their answers, whether I've agreed with them or not.

But now I'm in control for the first time.

I finally had my post-surgery follow up with Dr. Leitao today. I was amped up after my discussion with the biochemist yesterday, and walked into Sloan-Kettering with my fighting gloves in my back pocket. I figured I'd tell Dr. Leitao that I wanted to take supplements to help with the chemo and I wanted to skip the radiation, then he'd tell me I'm crazy, I'd put up a little fight, get tired and back down. But that's not the way it happened.

Surprisingly, I was called into Dr. Leitao's office on time for my 1:00 appointment. The nurse - not Lisa - took my vitals and asked a few questions. Dr. Leitao came in shortly, and I'm pretty sure he expected this to be a quick in and out visit. He didn't know I was armed with questions that would force him to stay until I was satisfied.

He complimented my newly darkened hair, checked my incisions, asked me how I was feeling and started to head for the door. "Wait!" I called after him. "Can you go over the pathology again? Dr. Gorsky has such a thick accent, so I want to make sure I understood what she was saying." He turned around and started to speak, "Well, we definitely did the right surgery for the cancer you have. It's definitely small cell and it was in the cervix and the parametria, which is that area around the cervix. It was also in one of the nodes, so I recommend you don't wait too long to start treatment. We got clean margins..." That's what I wanted to hear. I didn't listen to the rest of the sentence, but jumped in with, "So, if you got clean margins, you don't think there's anything left there, right?" He answered, "No, we didn't see anything, but it might be in one of the other nodes." I put on my boxing gloves, "Ok, so the nodes are treated with chemo, because it works systemically, right? Radiation treats a localized area. Since you think you got it all, and there were clean margins in the pathology, is there really a need for the radiation? Isn't it overkill?"

Dr. Leitao stared at me with surprise. I continued, "I'm not arguing with you about the chemo. I understand why I need to do that. But not the radiation. I've been reading and talking to people on a small cell cervical cancer site on Facebook, and the horror stories about radiation are awful. With chemo, there are terrible side effects, but once the chemo is done, they go away. My hair will fall out, but my hair will grow back. The side effects of radiation are permanent. It will shrink my vagina and make sex uncomfortable. I don't want to start a marriage like that. Plus, it could lead to bladder and intestinal damage. What if I say I don't want to do it?"

Dr. Leitao seemed a bit taken aback by my plea. He chose his words carefully and said, "I don't disagree with your concerns. You're right, radiation isn't fun. It's rare that you'd have any serious damage, but it's possible. I can't advise you not to do it because this is how we treat your type of cancer, but I see what you're saying. The problem is, there isn't enough research that's been done on small cell cervical cancer. It's too rare. If you had regular, garden variety, cervical cancer, the treatment that is most successful is radiation. I would insist on it. But the small cell cancer is tricky. It responds best to the platin-based chemotherapy. That's the really important part that you have to do. We just do the radiation on top of it because it's like hitting it with two guns instead of one."

I was shocked. It almost seemed like he thought I was right. He didn't come out and say it, and I could see that he didn't really know what answer to give me because the research isn't there to support him either way. There was definite concern in Dr. Leitao's eyes, and he was torn between letting me make my own decision and doing what was best for my health. The dilemma came from the fact that there weren't even percentages he could give me of women who chose one treatment over both. There just aren't enough people in the world with this type of cancer.

I changed gears for a minute. "On another note, I saw a biochemist yesterday. He gave me a bunch of supplements to take during chemo to help boost my immune system. I brought the list, if you want to see it. Dr. Gorsky was quick to tell me not to take anything, but I want to know what you think." He didn't take the list, but quickly responded with, "I won't know what any of those things are, but I don't have a problem with you taking them if you check them out on the Sloan-Kettering website in the Integrative Medicine section. Type in each name and see what's written about them. If they're ok, go ahead and take them. Can't hurt."

Ok, that was easier than I thought. Back to the radiation discussion.

"So, back to the radiation. I don't know what to do. Can I choose not to do it?" Dr. Leitao shrugged and said, "You can choose to walk out of here and never come back. We can't force you to do anything you don't want to do. We can only tell you what we think is best for your care and hope you take our advice." I asked again, "Do you think I need radiation on top of the chemo?" I could see the poor guy was struggling with the right answer, "As I said before, I can see where you're coming from. The chemo is most important. We don't really know if the radiation is necessary, but with an aggressive cancer like this, we suggest you do it all."

We spoke for a few more minutes without coming to a conclusion, then Dr. Leitao left to see another patient, and my mom, Jimmi and I stayed to talk to Lisa, who had joined us midway through the discussion.

"So, what would you do if it were you?" I asked Lisa. "I knew you were gonna do that to me," she smiled. "I don't know. It's so hard. I know you're young and this really sucks, but you have kids. I would be thinking about my kids and I'd want to be around for them."

Jimmi opened his mouth, "How often will she be checked after everything is done?"

"Every three months. She'll have scans of the pelvis, belly and lungs to make sure everything is clean."

Jimmi spoke again...or maybe it was my mom, "So if she chooses not to do the radiation now, then something pops up on one of those scans, can you do it at that point?"

Lisa answered, "Yes, then she wouldn't have a choice. And depending on what it is, they might suggest chemo again. But if she has radiation now, and something comes back in the same area, she can't have radiation again. It's a one time deal in the same area."

My mom asked, "So if she has radiation now, and then it comes back, how will they treat it?"

"With more chemo or surgery, if possible," Lisa explained.

I wasn't getting a definitive answer from anyone. Yes, I want to be around for my kids. But if the purpose of chemo is to kill stray cancer cells, shouldn't that be enough? If there was anything left over that they could see, I'd understand the radiation, but there isn't. Should I take my chances and opt out of the radiation? Should I play it safe and do it now, then risk further complications from the treatment?

I've been begging to have a choice for so long. Now I finally have one, and I can't figure out what I should do.

If I skip the radiation now, then the cancer comes back, I'll kick myself. But if I do the radiation now and it causes me to lose my bladder or never have sex again, I'll be angry for the rest of my life. But at least I'll have a life. But what if the chemo is enough to have a life? How do I make this decision? I can't even look at statistics, because there aren't any!

Stupid, stupid, stupid, stupid cancer!

How do I decide what's best for me? Who can give me the answers? What if I make the wrong decision? What if that decision kills me?

I'm open to suggestions.

1 comment:

  1. it sounds like you still don't know why you would or wouldn't need radiation..i hate to say this..... but if you give my dad a call, he may be able to better explain to you WHY radiation is used. after all his company is one of the research corps. that started using radiation in their clinical trials. I'm sure he'd be able to help you so you can make a more educated decision. if you're not comfortable talking to him, i can get you his bosses # and the best part of having a outside source is no sales pitch.

    love ya kiddo
    be well