Answer unclear, try again later

[annathepiper]

When we got in to see Dr. Kohn the oncologist today, she told solarbird and me that she'd been handed my MRI results hot off the presses. Which was pretty good in terms of promptness, but not so much in terms of actual data. Apparently there's another, smaller lump in there (about 1cm in size) that requires further exploration. There's also a yellow flag about the size of one of my lymph nodes; it's not humongous, and it's unclear whether this is due to my still healing from the biopsy or what, but it's at least big enough that they want to look at it further.

Oh joy oh glee. This apparently means the following topics of discussion with Dr. Towbin on Monday:

1. Exactly how much of the big lump he took out and whether there's more of that to get; Dr. Kohn was unclear about that
   
2. Scheduling of MRI-guided biopsy vs. a bigger surgical procedure
   
3. What's up with the lymph node and whether they'll want to do a sentinel-node thing to see if the DCIS is there too

I also discussed with Dr. Kohn the likelihood of taking tamoxifen, which is not likely to cause me any hot-flashy-type symptoms due to my being so young, and I confirmed with her that this won't cause me any issues with my thyroid meds. Should we go in this direction, this would likely be something we'd start me on once all the surgical issues were done and dealt with.

And, as a couple of people have already asked me about, we talked about the idea of genetics screening. I've arranged to speak with a genetics counselor for more data on that and whether doing that test is warranted in my particular situation. I've been given a big ol' questionnaire to fill out about my family's cancer history, and have flung some email at the siblings to rally the familial troops and see if I can uncover any other cancer cases on my family tree.

Dr. Kohn seems to be in the camp of "if it's DCIS, it ain't breast cancer yet." I don't know what I feel about that. She kept calling it "pre-cancerous", which is what they were calling the situation with my thyroid. That seems disingenuous to me. As solarbird points out, the bottom-line definition of cancer is "cells reproducing out of control". Invasive vs. non-invasive is an important distinction to make; with both my thyroid and my breast, it's been non-invasive situations (modulo any unpleasant surprises about my lymph nodes). But I've still clearly got a scenario of cells in my breast failing checksum handling, as it were. Cells are reproducing in ways they are not supposed to be reproducing. If it walks, swims, and quacks like a duck, sez I, it's a goddamned duck.

I was once again confirmed via physical examination to be a generally healthy young person, though Dr. Kohn did also mention for longer-term purposes the sorts of things that are 100% in my control vs. the things that aren't. Things I can do: weight control. Exercise. Low-fat diet. All of which I've been kind of doing already, but this underscores the importance of pursuing this. Aside from that, though, we're still pretty much gathering data.

More data will be gathered tomorrow when I speak with Dr. Hunter, the radiation oncologist.

Comments

[agrimony.livejournal.com]

If you haven't previously had radiation therapy of any sort, and were considering the potential of spawning in the future, you might want to inquire after fertility preservation. Some cancer treatments can be very rough on the gonads.

[agrimony.livejournal.com]

*also adds supportive hugs!*

[annathepiper]

Granted, but it ain't my uterus they'd been shooting at, and I'm given to understand that they're very, very good about focusing the radiation exactly where it needs to go and nowhere else.

However, general fertility issues are already on my mind; I brought that question up with Dr. Kohn today. From what I'm hearing so far, honestly, the fact that I'm pushing 40 is going to be more of a general concern about my chances of any future kids than the breast situation will be.

[annathepiper]

*snugs* Thanks. Hugs are good. :)

[waterowl.livejournal.com]

Lots of hugs

Actually a tumor is cells reproducing out of control. Cancer is when those cells spread their checksum failures about.

[callibr8]

Yeah, pushing 40 is *late* to be trying to get pregnant. If you do attempt it, I wish you the best of luck, but anything over 37 is on the sharp downside of the fertility curve.

[firni.livejournal.com]

I really, really hate this "hurry up and wait" crap that doctors do. I know WHY they do it but come ON. And can't they tell from the MRI how much of the original tumor they got out with the biopsy? rrrrrrrggghhhh

[marzipan-pig.livejournal.com]

Being generally healthy, getting whatever it is OUT, and getting what's left treated are all super great approaches, good for you! So sorry you're having to go through this!

[ghost-light.livejournal.com]

*hugs* I am so sorry you are going through this.

[technoshaman.livejournal.com]

*nods* they can even use the MRI in real-time to not only see where they're going, but they can actually use the MRI to generate the pulses necessary to blast the sucker.. *and* see if they got it, or if they need to shoot again. Surgery is still recommended for something this big, but once they've reduced the mass, they can go in and blast what they couldn't get... I don't know if it's on a cell-by-cell level or not, but pretty darn precise.

Particularly given where it is, it *sounds like* it would probably affect your ability to breast feed, but I'm with everybody else, just the whole pushing 40 thing will probably be as big if not a bigger issue. :(

[technoshaman.livejournal.com]

If it walks, swims, and quacks like a duck, sez I, it's a goddamned duck.

For the purposes of what you're gonna do to the duck, i.e. make like Elmer Fudd on his tailfeathers, I wholeheartedly agree. We can let the patholigists split hairs all damn decade... *after* it's no longer an issue.

[janne.livejournal.com]

Still keeping my fingers crossed. Pre-cancerous sounds hopeful to me, though I totally see that it's not a very major distinction for you at this point. Many hugs.

[poetry-lady.livejournal.com]

     Am thinking healthy thoughts at you right now. Expect a healthy-thought-bomb (in the most positive sense) from me in the near future. {{hugs}} I'm so glad you're taking an active role--someone else said something about that elsewhere in your journal, and it's very true, you have a higher success ratio.

[rosepurr.livejournal.com]

I'm so sorry things are more complicated, Anna. You are in my thoughts every day.

[annathepiper]

Thank you very much, most appreciated.

[annathepiper]

*grin* Healthy-thought-bombs are most welcome. Thanks for the continued support, it's very much appreciated too!

[pauldf.livejournal.com]

FWIW, I've been incredibly pleased with how much less intrusive (and thus, how much more quickly my body healed) imaging-guided surgeries have been for me than larger surgeries. I had two of each during my far-too-interesting hospital stay this past spring; the two that were done as imaging-guided surgeries were the only two where that option even made sense in my case. Obviously, I can't say anything about any of the other tradeoffs involved in actually deciding that, since your situation is quite a bit different than mine was.

*hugs*

[annathepiper]

Thanks much, hon. Extra special appreciated from you right now since you're feeling poorly yourself!

[annathepiper]

Hugs appreciated. :)

And meh, the line between "not cancer" and "cancer" seems to shift depending on who exactly I'm talking to. The surgeon says "cancer". The medical oncologist says "pre-cancerous". Me, I say "GET IT OUT OF ME BEFORE IT BREEDS."

We'll see what the radiation oncologist says today.

[annathepiper]

At this point I'm fairly sure that Dara and I are going to wind up just being childless. Even aside from all the medical adventures she and I have had to deal with the last five years, having a child would be a difficult and expensive proposition for us anyway. With the latest medical complication, I strongly suspect that by the time we've recovered financially again, I'll be too old to make having a bun in my oven a viable proposition.

Eh well, there's always my ambition of being the Eccentric Auntie in the West to my great-nieces and great-nephews. ;)

Good mojo

[prettyshrub.livejournal.com]

*HUGS*

It sounds like it's time to bring out the Mojo Fish!

http://hlgem.deviantart.com/art/Mojo-Fish-23044211

HLGEM is one of my online browncoat buddies on the Original Board. We've used this fish muchly when folks need it. It always helps.

Linda

[annathepiper]

Well, Dr. Kohn started talking about the "margins" around the big lump and how there was some uncertainty based on the MRI results about whether those margins were comfy and cancer-free, or whether there's still some healing tissue in there from the biopsy or what. The way she was talking, she seemed to think that Dr. Towbin had already yoinked out most of it, which contradicted my prior understanding of what he was doing. So I'll be asking him to clear that up for me on Monday.

[annathepiper]

Thanks, very much appreciated. :)

[annathepiper]

*hugs back* Thanks. solarbird and I aren't very thrilled about it either. ;P :)

[annathepiper]

Well, one of the good bits of news from the MRI is that the left breast was confirmed clean. So even if they wind up yoinking out a lot of the right one, or removing it, the left would still be functional.

As I mentioned to cflute elsewhere on the thread, though, I'm suspecting at this point that solarbird and I are just going to wind up childless. Even without the current medical adventure, we've had enough to deal with in the last five years that we are still financially behind and couldn't afford a kid even if I were pregnant right now. Now with the latest adventure to deal with, I'm betting that by the time we're financially stable again, I'll just be too damned old to make pregnancy an acceptable risk.

Eh well, I can work on the Eccentric Auntie angle, and also get baby fixes from jessicac and kathrynt's kids. ;)

[raise-a-jar.livejournal.com]

::hugs:: Thought about you a lot the other day when I couldn't get to LJ. Still got the fingers crossed! Hope things continue moving in good directions.

{{{{{{{{{{{{{Anna}}}}}}}}}}}}}}

[annathepiper]

Exactly! Never mind scientific debate, just pitch it out the escape hatch before it starts taking over every guy in the crew...

Ahem. Sorry, been watching way too much Voyage to the Bottom of the Sea lately. *^_^*

[annathepiper]

*hugs!* Thanks for that, that'll be at least a bit of a comfort if we have to do this MRI-guided biopsy thing!

Re: Good mojo

[annathepiper]

*hugs!* Aw, thank you. Let's hear it for the Browncoats. :) A fine, fine fandom, right along with the Folks What Love Great Big Sea (we still don't have a proper name for ourselves, but we have a hell of a fandom)!

[annathepiper]

*snugs!* Thank you very much. All continued good mojo is most welcome. :)

[awritersweekend.livejournal.com]

we are sending you hugs, too.

(((hugs)))

[prairie-kittin.livejournal.com]

1. Exactly how much of the big lump he took out and whether there's more of that to get; Dr. Kohn was unclear about that

Getting clean margins is extremely important, but the fact that it was in situ is in your favor. If he took out the entire duct, then you should be okay.

2. Scheduling of MRI-guided biopsy vs. a bigger surgical procedure

The MRI-guided procedure is less invasive, but the surgery is warranted if there weren't clear margins. Of course, I am not a doctor, nor do I play one on TV. The key to a good outcome is good communication with your doctors.

3. What's up with the lymph node and whether they'll want to do a sentinel-node thing to see if the DCIS is there too

I'm a bit fuzzy on this... do you have a lump under your arm?

I'm concerned about that other lump... hopefully it's just a scar from the biopsy!!

Did you have surgery on your thyroid? Were you hyper or hypo? I'm hypo and my daughter has Graves disease. She had the radioactive iodine thing done, and now we're both on synthroid. So is my mother. Like cancer, it also tends to run in families.

[annathepiper]

*hugs!* Thank you very much. More news expected tomorrow.

[annathepiper]

What they told me about the lymph node is that according to the MRI, it looks otherwise normal, but a little large. They're unsure whether this is because I'm still healing up from the previous biopsy or what. There isn't any actual lump under my arm, though. I'm going to be asking Dr. Towbin tomorrow whether a sentinel-node check is warranted for me.

Re: the second smaller lump... they just don't know what the heck is up with that yet. It's apparently far out ahead of where the surgical cavity from the big lump is, towards the front of me. All they can tell off the MRI is that there's a richer flow of blood in that area, but they don't know yet whether there's DCIS in there or whether it's just some sort of fibrous and otherwise safely ignorable nodule.

Re: the margins... yeah, I'm going to be asking about that, too. I learned more about my MRI on Friday when I spoke with Dr. Taylor, the radiation oncologist; it seems he was briefed on the MRI too and he mentioned the thing with the margins, too. From what he was saying it sounds like Dr. Towbin got most of the big lump out already, since they're talking about margins now... but this still contradicted my previous understanding of the purpose of the biopsy, so I'm going to ask Dr. Towbin about that directly.

The deal with my thyroid was this. There weren't any obvious symptoms like a visible lump in my neck or huge divergences in my thyroid levels (they were a little off from true, sometimes a little low, sometimes a little high, depending on when I was checked). I was having a routine physical, and my doctor at the time was checking my neck and thought that my thyroid felt a little large.

Since I had already told her about my mother's cancer history, she said basically, "Um, let's do an ultrasound on this."

So I said sure, and the ultrasound came back with, "There are five nodules on your thyroid, and the biggest one is 6cm in size."

And my doctor said, "Um, let's do a biopsy on this."

And I said sure, and the biopsy came back with "intermediate possibility of cancer/pre-cancerous".

And my doctor said "OKAY! Let's have that out then" and I said "RIGHT THEN" and they took out the left half of my thyroid, the side with the big nodule on it.

And the following summer we checked out the other half, and the nodules it had made were getting bigger, so they said "RIGHT THEN let's take that part out too."

So now I have no thyroid at all, and I'm on Synthroid and Cytomel both.

[ssha.livejournal.com]

What you're talking about sounds like gamma knife treatment, as opposed to classic radiation. My radiation was very targeted, but was not gamma knife, so was much more precise than it would have been years ago, but was not at the level of the gamma knife.

Re: Good mojo

[ssha.livejournal.com]

Great Big Seamen? Great Big Folks? Great Big Seafarers?

Re: Good mojo

[annathepiper]

I expect that the female portion of GBS fandom (which, let's face it, is a mighty majority of them!) would object to being called "Great Big Seamen". ;)

I've seen "Seafarers" batted around the OKP occasionally. But I haven't been posting up there regularly in a while, so I haven't seen whether they've decided what we're calling ourselves yet.