YEEP.

So it's been an exciting few days, schoolwise. I'll write more about some of the rest of it tomorrow (I hope) but last night I posted over on the EC Ning asking if anybody else was interested in a book discussion of Notice & Note, by Kylene Beers and Robert Probst. And by the time I went to bed there were five people who'd already replied and said yes!

This will be the first time I've facilitated such a discussion. I'm kind of nervous (see photo!) because I'm not entirely sure what to expect. I don't know what problems might come up. Well, except for one - I'm kind of afraid that I'll start things off... and get crickets!

I just (like 45 seconds ago!) put a notice up on twitter, which I haven't been on, like, all summer. I'll probably retweet it a few times over the next couple of days, see if it gets any traction. I really hope to get a nice-sized crowd and some good conversation and idea-sharing back and forth. The lasting connections that you can form with people who share your purpose and your passion... that, to me, is the best part of the internet.

Then again, I feel like I've kind of neglected those connections this summer - at least professionally. I've been away a lot, for one thing, and for another I've really tried to focus on my writing and along that line been much more active on tumblr as a new platform.

So once again I find myself reaffirming my commitment to Epic Adventures here. I feel like I'm at some kind of professional turning point; I've developed confidence in what I'm doing as a teacher but at the same time -- or perhaps as a result? -- I feel like it's time for me to develop My Thing, to craft some sort of niche for myself that can be my area of expertise. It's a very nebulous, uncertain sort of feeling, though, and I'm not at all sure that I'm up to the task.

But oh well! I suppose the fact that it's "uncomfortable" just means it fits in completely with my "professional theme" as it were, haha... because it's definitely going to be an adventure!

 Stock image

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What I Know So Far, Part 4

Yesterday at school I told the other members of my department (well, the ones who are helping out with summer studying) about my diagnosis. I'm so fortunate to have coworkers who are caring and supportive!

I need to call to find out how long my MRI will take, because I want to go out to eat afterward and I'd like to see if anyone wants to come along. But I don't know what time that will be yet!

One of the other teachers mentioned that I'd probably get my reconstruction right away because radiation damages the skin, so they don't like doing reconstruction afterward. So I might get my new bod sooner than I'd thought! But, really, I just won't know until Monday or so.

"I'm afraid you'll just have to wait."

"... I hate waiting." :P

So, anyway.

An unpleasant surprise in the path report was that they found a SECOND tumor just in some of the flesh that they scooped out with the primary one. Now, the good news on this one is that it's DCIS, the non-invasive kind. So it's not gonna kill me - especially now that it's out! The not-so-good news is... what are the chances that the only other tumor I had just happened to be the one that they found in that tissue sample?

I'm thinking that maybe it's better than the possibility of successfully navigating an asteroid field (3720 to 1, in case you were wondering) but probably not by much.

Now, hopefully tomorrow's MRI will be able to pinpoint the rest of the little buggers (that one was 2mm, which is maybe a bit smaller than a lowercase o). I'm really really hoping that the MRI can see things all the way down to, like, micrometers. I'm not sure how small a micrometer is, but it sounds near-invisible.

This might be something that's best handled with radiation therapy. I really don't know; surgery might be a better option. Guess I'll find out on Monday!

The last really important thing from my path report is that my primary tumor grows really well when it's "fed" by estrogen and progesterone. This means that if we can reduce or remove those hormones, it (and any cancer cells related to it) will be a lot less dangerous to me.

These hormones are produced by the ovaries. So I can have my ovaries removed... or I can take drugs that prevent production of those hormones or suppress them or something. I'm really leaning forward to the surgery because it's a once-and-done thing. I think I'd have to take the drugs pretty much forever. And it's the sort of thing that you HAVE TO REMEMBER... and I'm not so good at that!

Plus? The idea of never again having to buy tampons or waking up in the middle of the night with cramps or feeling sick to my stomach and aching all over... ooo, I like that idea a LOT. It'll also reduce my Aleve consumption, and all that sodium probably isn't good for me ;)

Finally, because I'm so young, there's also a fairly strong possibility that I'll have a "prophylactic mastectomy" on the other side. Prophylactic means preventative (that's why sometimes condoms are called prophylactics). So even if the MRI shows that my left side is clear, my risk factors are high enough that it should be taken care of just to be safe. And one really really awesome thing about that is that I wouldn't EVER have to wear a bra again! And I won't sag! Not ever!

There are different possibilities for reconstruction, but after thinking about it for awhile, I'm leaning toward getting another implant. A lot of that is that I know I don't want to have to fuss with prosthetics - with reconstruction, once it's done, I won't have to do anything special. And implants mean less cutting me up than other forms of reconstruction (there are other methods where you actually use your own tissue). Finally... well... implants come in different sizes, and I'm kind of hoping to be able to maybe pick whatever size I want!

So that's pretty much all there is to it. So far, anyway. What concerns me most at this point is that I'm not sure what the best way to keep tabs on things is. I really wish there was some way to be sure we could catch any tumors before they got to this stage, but I can't imagine that an annual MRI would be feasible. That's something I'm going to need to ask on Monday, I guess.

The cancer panel meets tomorrow and they're going to discuss my case. I'll be interested to see what everybody had to say!

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What I Know So Far, Part 3

I don't want to say this isn't a big deal, because it kind of is, but... hm. I'm not sure how to put this to have it come across right. I don't want to say "I don't want your sympathy!" because I'm not, like, anti-sympathy or anything, but... You don't have to feel bad for me. I mean, sometimes I feel guilty because my life is pretty frickin' awesome. My family rules. I love my job. We go to Disney World. We have a Jack Russell terrier that doesn't bark unless we tell him to. Seriously. It's ridiculous. This is just kind of the universe's way of telling me I gotta pay my dues. ;)

Anyway, one of the good things about this is that I certainly won't have to worry about finding something to blog about for the next several months! I'll be giving regular updates about what's going on and my reactions to it as my treatment progresses. I've added the tag "new adventure" to mark the posts in the series.

So, to summarize my path results:

What I thought was scar tissue was a malignant tumor. Malignant means that it's growing, which is bad. I'm not sure what the effective difference is between "malignant" and "invasive." Invasive means that it's growing out into the surrounding tissue, but... well, it has to be growing in order to do that! I guess maybe you could have a malignant tumor that was in sort of a protected area ("encapsulated" is the word for that) and was growing, but hadn't spread out past it. So I think maybe invasive is like one step worse than malignant. (Mine's both, so, that's not good either way!)

There was evidence that the tumor had just started to send its cells out through the blood, lymphatic, and nervous systems. This is how cancer spreads throughout the body, which is REALLY REALLY REALLY BAD. That's why breast cancer can kill you. I mean, if it just messed with your boobs, you're not gonna die. It's when it attaches to something you actually need to survive and gets in the way of necessary body functions that you have serious problems.

Quick note on the lymphatic system. I think it removes waste from cells and... well it takes care of it somehow; I don't know really. But I think maybe that's the more common route for cancer to spread. I'm not sure, but I remember from doing a bit of internet research during my first occurrence way back that if your cancer is at a stage where it can spread, they'll often do a... uhoh, I can't remember what it's called...

STOP! Google time. ;)

Aha! A "sentinel node biopsy." See, this is where it's cool to be an English teacher, because I know that a sentinel is like a guardian, which makes me think of the monster that guards the entrance to the World of Adventure, which is one of the stages of the Hero's Journey, which is just cool. And I know what a node is because of World of Warcraft - it's a particular spot where a mineral will appear.

Anyway, so what I think this means is that even if the cancer gets into your lymphatic system, before it can move to another part of your body, it has to get past the guardian spot. In the case of breast cancer, it's up in your armpit (the "axilla"). So a sentinel node biopsy is where they take out some of those and check them to see if the cancer is there. But removing lymph nodes means that section of your lymphatic system doesn't work as well, which might make the limb that extends from it swell up. It's called lymphadema, and it really sounds pretty miserable.

So what I'm hoping is that because I'm so young, we can kind of skip that test and go right to chemotherapy. I mean, I've heard that chemo is pretty nasty too, but it's temporary. There's no cure for lymphadema - ever.

The way that chemotherapy works is that your body is flooded with chemicals that kill anything that's growing (specifically, it targets rapid division). Now stuff I need - my heart, my lungs, my brain, etc. - mostly, they're not growing. But the cancer is. So these chemicals are good at killing cancer cells. Some of the normal parts of your body that have rapid cell division (and are therefore harmed while you're getting those chemicals put in you) are your hair follicles (which is why your hair falls out), your digestive system (which I think is why it can make you nauseous), and your bone marrow (why it makes you tired).

I'm going to pause there because I've already gotten pretty wordy, but to sum up so far - I think chemotherapy will probably be necessary, but I'm hoping that based on what we already know, and my age, I can dodge a biopsy up in my armpit and go right to the chemo.

Image thanks to http://bluraymedia.ign.com/

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What I Know So Far, Part 2

Guess what! I CAN SEW! I had a pair of pants with a wide cuff, and I had taken the hem out and wanted to re-hem it without the cuff to increase the inseam.

It was way easier than I thought. I went home & put them in the laundry. Now I'll just need to iron out the old hem-fold.

• Positive margins for invasive carcinoma - margins refers to the border around the tumor when it was cut out. Positive margins means there are some areas on the "slice" where the tumor goes all the way to the edge, indicating that some of the tumor was not removed. (This is bad.)
• Negative margins for in situ carcinoma - this is the opposite; there is normal tissue entirely surrounding the dcis tumor, which means they were able to remove the whole thing.
• No evidence of superficial dermal lymphatic invasion - dermal invasion would be it spreading to the skin, which would be really bad. But it didn't, so that's good.
• Angiolymphatic invasion - present, focal. angio = blood, and lymphatic = kind of like a cleaning fluid. Both of these are fluid-based systems that flow throughout the body. So if cancer invades those systems, that's one way it can spread. So that's not good. Focal = little bits, not a lot, though, and that's good.
• Perineural invasion - present, focal. Same type of thing; the cancer can apparently also spread through the nervous system. I didn't know that. Stiiink.

Another tangent - because of the possibility that the cancer has spread to these systems, it's quite likely that I will need to do some chemotherapy. These are drugs that kill cells that are growing, so it targets the cancer cells. That's also why it makes your hair fall out.


• Microcalcifications present in association with DCIS - micro = small, calcification = gritty buildup; these are a symptom of DCIS (which I already know I have anyway).
• Malignant tumor receptors strongly positive - estrogen 89%, progesterone 78%. Malignant means that it's growing. This means that estrogen and progesterone make the tumor grow more. Therefore, lowering the amount of these hormones in my body is one way we can fight this cancer. There are two ways that have been suggested - I can get my ovaries removed, or I can take medicine that would have a similar effect. I'm leaning toward the surgery. After all, "oopharectomy" is just fun to say!
• Malignant tumor HER-2/neu overexpression negative. HER-2/neu is some kind of chemical or enzyme. I really don't know. But it's used as a way of determining what's likely to happen. Cancers that are HER-2/neu positive tend to be a lot more aggressive, so it's good that mine showed a negative reaction.
• M.T. Ki-67 proliferative index intermediate. Same kind of thing. It's like saying if your soda is dark-colored, it's more likely to have caffeine in it. Anyway, this one is a "middle" reaction, so not terrible, but not great either.

On to page 2! yay!

• Gross description - this is where they describe what the specimen looks like. And it IS pretty gross... the tumor itself is a "slightly gritty creamy white nodule" - kind of makes it sound like the gunk inside a pimple! UGH!
• Tumor Profile
  • Lymph node sample - none present. They didn't examine my lymph nodes because nobody knew they'd need to! But that's one way that they can check to see if the cancer is spreading.
  • Details on specimen - size, location, etc.
  • Tumor focality - single focus of invasive carcinoma. I have no idea what this means.
  • Skin - invasive carcinoma directly invades into the dermis or epidermis without skin ulceration - I think this means the skin is not inflamed, which is good.
  • DCIS present, no extensive intraductal component. Yay! The DCIS is limited. Last time I had these they were speckled all throughout my ducts. So that's good.
  • DCIS size 2 mm - not sure if that's good or bad.
  • Tumor histology - invasive carcinoma with ductal and lobular features. Histology is the study of tissue. So this is about the features of the tumor. What's interesting is that it has lobular features; there's no note about what those features are. I want to check that.

Most of the rest of it repeats the summary from before.


Next - summary & upcoming decisions.

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What I Know So Far

So a couple of days ago I met with my new best friends (thanks to this unpleasant surprise) - the plastic surgeon said my incision is healing well and he'd be working with me on any new surgery or reconstruction if I liked, and the surgeon scheduled me for an MRI of the upper torso. That way they can look at the affected area, and my lymph nodes, and even my other breast.

No - wait - that was yesterday. Holy hell, that was just yesterday. See, this is what happens over the summer - I don't have a regular schedule, my sleep cycles get completely messed up, and I can't keep track of the days! But still... wow. It feels like ages.

Mostly, that's because one of my major coping strategies is to find out as much as I can. For me, feeling informed is comforting. So, even though I felt a little silly asking - I mean, I'm not ANY kind of medical professional! - I did get a copy of my pathology report.

So behind the cut is what it means, as far as I can tell.

Okay. Page one. Kind of funny - up at the top it says "This report may not be the final report" and five lines below that it says "--- Final Report ---" Ooookay.

• Excisional biopsy - this means they got the specimen by cutting it out of me.
• Moderately differentiated invasive ductal carcinoma [IDC], overall grade 2 of 3
  • Differentiation means how funky the cancer cells have gotten. Well-differentiated means they are still mostly like the normal cells they came from. Poorly-differentiated means they have turned into what I think of as "neutral" cells. I think this affects the cancer's ability to spread. The more "neutral" a cell is, the more it can try to attach on to a different part of the body and mess that up, whereas cancer cells that are still mostly like breast cells are more likely only going to affect other breast cells.
  • Invasive means it's growing past the border of where it originally showed up. Yes - apparently, you can have mutant cells show up in your body and it doesn't count as an invasion as long as they stay under house arrest. *grin*
  • Ductal is one of the two classifications of breast cancer - it originates in the milk ducts. The other kind is lobular, which starts in the tissue around the ducts.
  • Carcinoma = cancer in medicalese.
• Tumor size 1.4 cm - one of the ways they decide how bad you've got it is based on your tumor size. 1.4 isn't too bad. I'm really hoping there aren't any others floating around in there. Hopefully the MRI will catch anything even if it's really tiny.
• DCIS, cribriform subtype, nuclear grade 1 of 3, with focal necrosis
  • DCIS stands for ductal carcinoma in situ. *sigh* Hell. Hell hell hell. I am JUST now realizing that this is in addition to the primary tumor. But lemme 'splain first. In situ means "in its original place." It's a very low-grade cancer, and it's noninvasive - it grows, but it doesn't spread to other parts of the body. I guess it's even possible that the DCIS they found was actually there from before, because I had it very extensively.
    
    Slight tangent - I don't know whether or not it's known if DCIS develops into IDC or if it's just that having DCIS is a sign that you're also at risk for separately developing IDC. Kind of like weight and type 2 diabetes - you kind of hear it said that being overweight "puts you at risk" and there's an implication that it's causative, but it's quite possible that a separate factor causes both weight gain and diabetes, and the weight gain is simply the result that's easier to see, while diabetes is more subtle.
  
  
  • Just as 'ductal' is one of the subtypes of breast cancer, 'cribriform' is one of the types of DCIS. Here, the difference is based on how tightly the cancer cells are packed into the duct. Papillary is the lowest grade, with cancer cells sticking in from the edge of the duct like little wavy fingers. [Tangent - or like caterpillars; the French word for butterfly is papillon!] Cribrifom is more like a spiderweb or swiss-cheese form, where there's a network throughout the cell. And then the highest grade is either solid or comedo (I'm not sure on this) but it's where the duct is filled up with cancer cells.
  • Focal necrosis - okay, this I don't like. Necrosis means there's dead tissue floating around inside the duct. Focal means there's not a lot of it, but still. I couldn't find a lot of explanation on this, but I figure there's two possible reasons. One is that the cancer is killing off other cells. I don't think that's the case, though, because that sounds pretty "invasive" and DCIS isn't supposed to do that. I think it's more likely that it's cell poo that can't be flushed because the DCIS has things clogged up.

I'm going to stop there for now because (a) it's late, and (b) this is already pretty long. Also (c) I have cramps and I'm going to run a hot bath and go soak. Maybe do some reading.

I'll probably pick up where I'm leaving off, though, so if you read this and it bored you... well, now you know not to bother with the next one. ^.^

I'm also going to print out a copy of this post to give to the surgeon when I go for my next follow-up, so that he'll know what I'm thinking.

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Don't Nobody Bring Me

Twelve years, six months, and eight days. That's how long I was cancer-free.

It'll still be several days before the pathology report comes back, but given that what I thought was a callus or scar tissue was apparently a TUMOR, that means it's probably stage III, which is NOT good.

It just makes me so mad.

And I'll probably have to have chemotherapy, and goodness knows what else. It's probably premature to be making any of these guesses, but I can't help it.

I did what I was supposed to do - well, mostly, anyway. I had the whole damn thing cut out and I got mammograms on the other one regularly. Then it comes back on the original side?? WTF, people?!

It feels unfair. I know that "fair" has nothing to do with it, but, well, feeling isn't rational.

I'm incredibly frustrated.

ETA: The surgeon came in to talk to me while I was in recovery - apparently I was more out of it than I thought! The Hunk said that he'd told us the lump was UNDER the skin, NOT attached to it. Which is WAY better than the other way around!

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Bummed

I've got surgery tomorrow. I'm really not looking forward to it. Actually, the only thing I'm looking forward to is it being OVER. Worst of all, they're calling it a "biopsy." I'm fairly certain it's scar tissue, based on the way it's behaving and how it developed and whatnot. And I understand they have to check it out, but... yeesh! Did they have to use That Word?

So now I'm all twitchy. :(

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