the doctors

So far in our misadventures with cancer, the doctors we have seen seem to have a pretty lax attitude about it. The surgeon here in town has pushed hard for the least invasive surgery to remove the least amount of tissue, chemo and radiation have been discussed, but my questions about recurrence have not been answered - the concerns underlying said questions all but ignored. "Your life expectancy doesn't change" has been their mantra. Since this is the crux of their beliefs about my treatment, they have also said that the treatment does not change much based on how aggressive a cancer I have, which seems all sorts of backwards to me. The surgeon has been the worst; it's like talking to a tornado. She has assumed that because I am young, my biggest concern is breast preservation. Sometimes I think that after she made that decision for me, she thoroughly shut her ears to me telling her that, actually, that's barely important at all. What is important to me is not having cancer again. My options, according to her, seemed limited to either prophylactic double mastectomy, which would only take place if I were genetically predisposed, or lumpectomy. The idea of a single mastectomy was never on the table.

I'll take some responsibility, I should have asked more and pushed harder; conversely, she should have let me get a word in edgewise. It feels embarrassing to admit, but something about interacting with her made me feel like a little kid. You know when you encounter someone who talks so fast and so much and isn't hearing you that you give up on trying to squeeze your voice into the conversation? That is how I felt when talking to her. When I told her that we were going for a second opinion and that part of that appointment would be meeting with a surgeon, she was obviously irritated. Now that we have had that second opinion, I am obviously irritated with her. I am also curious to find out her reaction to me cancelling my appointment for surgery with her to go elsewhere.

 A few weeks ago I got a call asking me to go in for more biopsies and Jason and I both wrote about that: What could be worse than cancer? More cancer. On June 19th that seemed like the worst possible news other than metastasis. As it turns out, it isn't always the worst thing you can hear. It is far worse to hear doctors making assumptions about the care you would like to receive and unable or unwilling to answer your questions.

Yesterday we went to the University of Michigan cancer center for a second opinion and learned that it is worse than we thought, but all I could think as they told us the frightening reality of my situation was, "thank god. thank fucking god that we are here. that these capable, experienced doctors are looking at my case and telling us what is really going on." I am certainly scared. Hearing what we heard yesterday was a big blow - this is more serious that I had first imagined and until yesterday we were about to proceed with a grossly deficient plan. In a way I think I needed this to make the sorts of lifestyle changes I've been dragging my feet to implement - mainly exercising. I talked to a friend of mine pretty early on in this whole process and tried to explain that until we knew more, it was entirely possible that the cancer hadn't spread anywhere, would be removed by a lumpectomy and might not be followed by chemo or radiation - a total dream scenario - as she said, "a root canal." This is no root canal.

What we knew on our way to U of M:

1. The tumor is 1.7cm in diameter which means it can be removed with a lumpectomy.

2. No one can say much about how aggressive the cancer is until the whole thing has been removed and analyzed.

3. I had serious questions about the reliability of a lumpectomy in terms of recurrence rates which no one could tell me anything about.


What we knew when we left:

also the size of this little cutie

1. Most of the stuff we thought we knew when we got there was wrong, or at least incomplete.

2. The tumor is 3.5cm in diameter including the areas around the primary tumor where the cancer has spread. That means that instead of being the size of a grape, it is closer to a fig or an apricot, which is an easy way to imagine its parts. The most solid part of the tumor that I can feel is like the pit (but bigger), but it doesn't have clean edges; the edges bleed out into the surrounding tissue which is like the fruit.

3. The "mystery spot" that showed up on my first MRI and could not be located using the ultrasound machine or reached during the attempt at the MRI-guided biopsy was found easily by the U of M radiologist. It is a large pre-cancerous lesion. i.e., if we did a lumpectomy and removed the known tumor, this area could soon be a new cancer and we'd be back to the beginning of this ordeal.

4. The two spots that were discovered in MRI and successfully biopsied in June are not (as those biopsy results indicated) cancerous. They are, however, likely pre-cancers because of their structure and the amount of calcification. These spots, too, must go to prevent recurrence.

5. The cancer is grade 2, which means it is totally mediocre cancer because the scale goes from 1-3. Stupid mediocre cancer. Really what this means is that it is neither the least nor the most aggressive, but it is pretty aggressive. The doctors we spoke to yesterday said that for seeing a case like this, they try to get patients through surgery within 30days.

6. Because there are four areas, including the tumor, that must be removed, I am not a candidate for lumpectomy; there is very little tissue that can be safely spared. Not a single person at U of M's review board thought it would be safe or acceptable for me to have a lumpectomy. I will have a mastectomy and reconstruction at some point.


7. My options for reconstruction are largely dependent upon whether or not there is cancer in the lymph nodes, so I will have a biopsy of what is called the sentinel lymph node. Lymph nodes are in a strand and they collect cellular waste and filter it. Because they are in a strand, there is one node that is the first to receive all cellular waste that flows through any particular region of the lymphatic system. If there is cancer in any nodes, it will necessarily be in this one first. The surgeon will identify this node by sending dye through my system (which will make it look like I have a giant blue bruise for up to two months!) and also a mildly radioactive substance. The radioactive substance will be tracked with what is basically a tiny Geiger counter and that is where they will operate. The bluest node they see when they open me up is the one they will take for testing.

This new diagnosis looks like bad news, and I guess it is. The cancer is more aggressive, has spread more, and threatens more tissue than we realized. But the enormous relief that comes with having that identified, with having a set of doctors who listen to us, who knew how to answer our questions, and who are treating this with seriousness, capability, and a need for immediate action completely outdoes whatever fear I might otherwise be feeling. Well, completely is an overstatement, but it comes close.

Here is the thing that is sticking in my brain: I didn't think a lumpectomy was good enough, but was close to letting myself be talked into it when my instincts said no no no. My instincts were right. That feels both reassuring and shocking. Shocking because cancer feels like a bodily betrayal, like this physical form I inhabit is a foreign place that cannot be trusted. But I still know my way around it.