Sunday, January 3, 2010

Well, my little ronin warriors, tomorrow is mastectomy day, and before I begin my new life as a battle scarred warrior, I thought it might be time for another (epicly long) update.

First off - The results from my post-chemo MRI
Well, I still have a tumor, so that sucks. But, it is at least somewhat smaller in all dimensions (and nearly 2 cm smaller in one dimension), so that's good. However, according to the MRI, it's still 5.5 cm in one dimension, which could have implications for staging (see below). There are also fewer enhancements (which, as far as I can tell is a terrible misnomer for parts of the tumor which branch out), and they no longer reach back towards the chest wall. And, the tumor walls, which were convex, are now concave. All of this is good news, and my surgical oncologist was very pleased. Apparently, some patients don't have a measurable response to chemo, which, in my opinion, would be almost as bad as having to watch a badger rape a unicorn.

Another reason for optimism is that a lymph node that was detectable on my pre-chemo MRI can't be seen on the post-chemo MRI. This doesn't necessarily mean that the cancer is gone from my lymph nodes, but it does mean that I have less cancer in that one. In your face, lymph node! Nothing would make me happier than to have clear lymph nodes, but I won't get definitive information on lymph node involvement until the tissue pathology report comes back after the surgery.

A quick overview of breast cancer staging-
After my surgery tomorrow, my tissue will be sent to pathology, where I will get official staging information. While we knew some of the factors we needed for a quick and dirty amateur staging, the only staging that counts is the one that happens after surgery. Staging essentially looks at tumor size and lymph node involvement. My potential stages could be:
Stage IIB - Tumor less than 5 cm, but with lymph nodes involved OR a tumor greater than 5 cm but no lymph nodes involved. (While I originally had a lymph node involved, it only matters whether there is cancer in the node at the type of surgery.)
Stage IIIA - Tumor can pretty much be any size, but lymph nodes are clumped together and sticking to other structures.
Stage IIIB - the tumor is any size AND has spread to the chest wall or breast skin AND the cancer has spread to lymph nodes that are clumped together and/or near the breast bone.
Stage IIIC - Cancer has spread to the chest wall and or breast skin AND to lymph nodes above or below the collarbone AND to axillary lymph nodes or lymph nodes near the breast bone.
I don't have detectable metastases, so I'm definitely not stage IV at this point.

(As a side note, my lump is affixed to the skin, but I don't think that necessarily means that the cancer has spread to the skin. But, honestly, I don't know. I'm sure they'll tell me when pathology comes back.)

As far as I'm concerned, knowing the stage is only really useful to lend a certain gravitas to playing the cancer card. I mean, the higher the stage, the greater the power of the card. And even if I was interested in my stage beyond the persuasive power it affords me, it's not really that informative. Sure, there are survival rates associated with each stage, but they aren't very meaningful. I mean, there are a ton of factors which are important for my survival that aren't captured in staging. For example, cancers that are hormone receptor positive are more treatable than those that are receptor negative. My cancer is extremely estrogen responsive (90% of the cancer cells were ER+) and somewhat progesterone receptor positive (10% PR+). That's great because that means my cancer is can be treated through hormonal therapy (i.e., one additional way to kill the cancer), and the hormone therapy should be very effective. The aggressiveness, or grade, of the cancer also matters. I have a grade 2 cancer, which is only moderately aggressive, so I'm in good shape there. My age and generally good health (besides the cancer, of course) means more treatments are available to me, and I can bounce back from treatments more quickly. So, that's good too. Basically, I could look at the prognosis for the different stages, but they would tell me very little about my personal survival outlook.

Another thing worth noting is that (and scientists that are reading this, you may want to look away now), statistics are basically meaningless to me now. I'm young. My family has no history of breast cancer and a relatively low level of overall cancers. I am already an outlier. Not only that, but even among young women with breast cancer, it is very rare for a woman my age to have a grade 2, ER/PR+ cancer. Most young women develop much more aggressive, much less treatable cancers. So even within my outlier status, I'm an outlier. And once you've been one of those one-in-a-million cases, it's hard to look at probabilities the same way again. So, I'm doing to do what my doctors tell me and take the best care of myself that I can, and otherwise I just don't worry about it.

(A little aside regarding cancer statistics: No one really knows how or when they are going to die. I didn't know that before I had cancer, and I don't know it now. So, I don't see much point in worrying whether or not the cancer will kill me. Maybe it will, and maybe it won't, but I could say that every time I get in a car or cross the street. I don't see any point to stressing about dying just because I have one more potential thing that could kill me than other people. I mean, I could have taken up an extreme sport, and it would have been the same thing.)

What to expect from the mastectomy:
Don and I are driving to Hershey tonight, and I have to be in radiology early tomorrow morning. In radiology, they will place a marker in my sentinel lymph node (a special sort of 'master lymph node'). Then, I go into surgery. For a number of reasons, I've decided to have both breasts completely removed at this time. I'll stay in the hospital overnight, and if everything goes well, I'll be released Tuesday morning. I've been told it will take a week or two before I can return to normal activity, and it will be even longer before I can lift anything.

Going forward:
After the mastectomy, I get a few weeks off to recover, then I start radiation and chemo 2 (electric bugaloo). I'll have 33 to 35 radiation treatments. Basically for 8 weeks, I'll go to the hospital (in State College, not Hershey) every weekday, and get beamed with radiation. I also get some tattoos so they know where to beam me.

Chemo 2
Chemo 2 will last for 30 weeks and begins right around when I start radiation. Every 3 weeks, I'll get an infusion of a single drug, Avastin. The side effect profile is supposedly pretty limited, and I had Avastin as part of my earlier chemo cocktails (although it's hard to figure out which side effects were from the Avastin and which were from the other drugs). My hair should stay attached to my head, and I shouldn't have the nausea or fatigue that "real" chemo caused. Also, since it's part of my clinical trial, I can stop if I want.

Hormonal therapy
Hormonal therapy starts after radiation (I think). This just consists of a pill I take every day for 5 years. The pill basically prevents the cancer from absorbing any estrogen or progesterone. It also makes my hormones all wacky, so with any luck, there will be some monumental bitchiness (or at least, I'll be able to blame the pill when I say whatever's on my mind). It has the potential to be pretty great.

This will happen after I finish Chemo 2 and get around to it. It's just not a high priority right now. However, if you see a great looking pair of breasts on the internet, send them along so I can show them to the plastic surgeon. (DO NOT REALLY DO THIS. That would be weird and creepy.)

Alright, I'm off to pack my bags for the drive to Hershey. I'll try to send a quick update from the hospital once I get out of surgery.

Ninja out.


  1. I can't believe you're being sent home after 24 hours! Did I read that right?! Take your pain meds by the clock for the first 48 hours (at least), whether you're feeling it or not - it helps to stay ahead of the pain. Rest and let other people help you - don't push yourself at first. Best of luck - I hope to be hearing about clear lymph nodes when you feel up to posting!

  2. Best of luck little ninja. Rock the surgery!

  3. from one cancer survivor to another, i am sending love and attention to YOU! and not to be creepy but I had reconstruction surgery after my mastectomy. my doc did a great job :) NO FEARS!

  4. I'm thinking about you today, hope you are doing well, and we'll get a positive report on the other side, and you can say "Today was a good day" (didn't have to use your AK).

    Keep on kicking ass!!

  5. We're thinking of you Helen. Love ya. Kurt and Sarah

  6. "Chemo 2 (Electric Boogaloo)" made me snort.

  7. hope you're well and currently enjoying being loopy as a result of strong painkillers.

  8. I'm sorry you have to go through so much shitty stuff. You're ability to deal with it all is nothing short of amazing. You're definitely in my thoughts.

  9. Best of luck girl ... wishing you all the best.

  10. Good luck with the surgery! FFAF this week will not be the same without you :)

  11. Wow, you are so lighthearted and hilarious! I have deep respect for people like you who are going through such a shitty situation. Good luck!