ricevermicelli | (no subject)

Thank god there are only two days to a weekend. I don't think I could take more.

Today, my parents came over, and we reminded Danger Lad! to ask his grandma about stethoscopes. I feel confident that continued use of this strategy will allow us to plug the gap that is the BPS elementary school science curriculum. Grandma also introduced Hotspur to the notion that you can eat your peas still frozen - she very much prefers them that way.

And then DL! agitated for all the dessert in the world, and Hotspur put her head down on the dinner table and sobbed that she was not tired, and everyone took showers and went to bed, except for me. I tried some more knitting, I found a sweater pattern I adore, and I have so much spare yarn that I decided I could go ahead and get started even if my final bust measurements are anyone's guess.

The kids are doing great with everything, but they're terrible at remembering not to bounce on my right side. Athletically affectionate parenting doesn't jive well with surgical sites. Anyway - the kids are mostly matter of fact about what's going on, and a giggly level of grossed out about surgical sites and drains. I'm hoping this is all it will ever mean to them (because unless something very unexpected arises in pathology, my prognosis is "sorry about your shitty year," not anything longer lasting). However, when it comes time for them to write admissions essays, I will encourage them to present this shit as traumatic.

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From:

rufinia.livejournal.com

However, when it comes time for them to write admissions essays, I will encourage them to present this shit as traumatic.

That's the spirit.

I have been sending good healing thoughts.

From:

beth_leonard

I am so relieved to hear that your prognosis is good. I'd been too timid to ask.
--Beth

From:

ricevermicelli.livejournal.com

Sorry - I've been over the existing pathology report so often that I forget that other people don't have it memorized. The basic drill is that breast cancer is very treatable at early stages, and mine is most likely stage 1 (DCIS and microinvasive carcinoma at </= grade 2, tumors on ultrasound under 2 cm, no evidence of metastases to lymph nodes). (Sidebar: There is actually such a thing as stage 0 breast cancer.) The pathology from the mastectomy might turn up far worse news - if the core biopsy samples were atypical, if the unbiopsied abnormal tissue contained malignancies, if the flash biopsies were false negatives - but these are not the most probable outcomes. Our current understanding is that this is "sorry about your shitty year" cancer, not "oh my god you're gonna die" cancer. I will die, eventually, but probably not from this.

From:

beth_leonard

Did you find it with a routine mammogram or some other way? At our age it's so rare that they don't usually do routine mammograms this young. My breasts are somewhat lumpy to begin with so I never know what I'm looking for with a BSE.

--Beth

From:

ricevermicelli.livejournal.com

I discovered I have breast cancer because my nipple started leaking bloody discharge.

(Caps lock alert.)

HOWEVER, back in January, I did think I found a lump in my right breast, which was constantly sore, and I brought it in to my doctor to look at. My actual doctor was on vacation. I was examined by a nurse practitioner who said that she thought it was probably just cystic breast tissue, no big deal. She'd check with the doctor who was in (I see a doc at a group practice), and see if they wanted to do an ultrasound. The doctor thought not. GUESS HOW MUCH I WISH I HAD INSISTED. I should have at LEAST demanded that an actual doctor come in and have a feel. We could have treated this bastard FIVE MONTHS AGO. Probably not soon enough to save the breast, but still! If not for the bloody discharge, this would have gone unnoticed until it pretty much killed me. Because I would have told every doc ever that I had been examined by someone who thought my weird-ass right breast was "just cystic."

Bloody nipple discharge will get you seen in a hurry. The internet says not to worry about it, it's probably not cancer (NB: the internet doesn't say what it probably is, which is a pretty big omission.) Other things to be aware of include changes, and asymmetry. It's all well and good for your breasts to be lumpy - some breasts are - but if they're suddenly lumpier (I know it's hard to tell), or if one is lumpy and the other is not, investigation is called for.

From:

beth_leonard

I had my first mammogram at age 28 for bloody discharge. Actually it was leaking a grayish sort of fluid which tested positive for blood. Eventually they decided it was "internal bruising" from my horse sports (see new icon.) I'm very glad it was nothing more than that, but at least now I've got a baseline. I became pregnant several months later, then breast-fed for the next 5 1/2 years, and have just started having regular mammograms again.

My maternal grandmother discovered a lump in her breast almost 2 YEARS before being diagnosed with anything, and by then it was too late. She passed away just after turning 34. An aunt and cousin are currently 5+ years free and clear after having had breast cancer in their mid 30's. Unless you've got a family history, doctors just don't seem to believe it can happen to women this young.

--Beth

From:

ricevermicelli.livejournal.com

That's one king hell of a family history - have you been tested for BRCA gene mutations?

From:

beth_leonard

I did 23andme a year or two ago when they had a sale for $99. 23andMe only looks for 3 of several hundred BRCA mutations, but I didn't have the 3 they were looking for. I've been treating my life as though I might have bad genes for it, but hoping for the best. My mom has been clear so far, although she's been to the biopsy/aspirate stage several times, and I've been called in for a second more detailed mammogram last summer. The cousin who had it, her mom didn't have it either though, so you never know.

--Beth

From:

steuard.livejournal.com

Hearing your story brings back vivid memories of my knee experience. It took five months, three doctors, and a physical therapist before someone thought to take a simple X-ray to diagnose my mysterious pain. I still wonder how fast my tumor was growing, and if I might be in a better position today if I'd opted to wait an extra week to see the sports medicine specialist for my first appointment rather than winding up in her office five months later.

It's hard not to harbor some frustration about all that. But in both my case and yours, the good news is that we somehow managed to figure out the problem in time anyway. And that's what really matters in the end.

From:

catling.livejournal.com

Thank you, thank you, thank you for the in depth report of your prognosis. Like

beth_leonard I too have wondered and been too shit scared to ask. I'm sorry for being a coward. I'm relieved to hear that your prognosis is good.

*love*

Let me know when you're up for a visit. Can bring my wee'un over so she can play with DL! and distract him for a while. We were massively overdue for a visit even before all of this.

*gentle hugs and loads more love*

From:

ericakeithley.livejournal.com

Up until two months ago, I would have been totally with you about not knowing what to look for in a breast exam. But one night at 2 am while breast feeding I just happened to notice a lump. As my GYN put it, the value of doing a monthly exam is that you know what your breast normally feels like, and consequently, you will probably notice if something changes. In my case it appears to have been a false alarm: the breast cancer specialist couldn't find the lump on an ultrasound, and based on it's position, texture, and mobility they decided that it's not cancer, just some breast feeding annomally that could straighten itself out after the baby is weened. I wish that they had been able to see the darn thing on the scan, so that I could feel more sure that it's not some tricky form of cancer (since I have a lot of breast cancer history in the family), but that's the way it is.

From:

beth_leonard

A friend of mine had a lump that went from nothing to huge really quickly, but nothing at all turned up in an ultrasound or mammogram. The tech told her, "I'll bet that when the doc comes in he says it's a case of breast tissue detachment" and sure enough it was, much to everyone's relief.

--Beth

From:

ericakeithley.livejournal.com

Interesting! That possibility wasn't mentioned to me. I'll have to look that up. The interesting thing to me that came out of all of my experience is how little meaningful information I had prior to seeing the GYN. For instance I was totally shocked when she said that 9 out of 10 lumps that they refer on turn out to be non-cancerous and that her best guess was that mine was not cancer based on where it was, how it moved around, etc. I'm guessing that my previous ideas about breast cancer were formed by popular media, and it makes sense for the medical community and media to make women alarmed about breast lumps. Better to be checked and know that the truth than to lull yourself into assuming you're in the 90% and not get checked. That said, I would have slept much better if I had been in possession of better info on the probabilities in my situation.

From:

beth_leonard

/steps on soapbox
One of the things that really annoys me about politicians / other people making decisions about someone else's healthcare is how they weigh various factors. I don't remember the details now (and shouldn't take the time to look them up) but there was a serious proposal a year or two ago to increase the minimum age for recommending mammograms, and reducing the frequency from 1 years to 2 years, "to reduce the feelings of alarm that false positives cause" or something like that.

My mom has been through so many false alarms, and my mother-in-law through at least one, and I've even been through the "second round mammogram" that I want to scream at them. False alarms are a far better outcome than missing something important! Unfortunately there's such a .... I don't know the words to use ... societal taboo about talking about breast cancer scare call-backs that people don't know how common they are, and when they get them, they fear the worst. It's somewhat like miscarriage -- people have no earthly idea just how amazingly common it is until you start asking around, because people just don't talk about it.

Then the politicians's wives or mothers get a call-back or have a scare, and they're all "let's not do these tests that have high false positive rates but low false-negative rates, it scares people too much!"

Yes, I'd prefer a perfect world where we could tell the first time during the routine screening what was wrong so you didn't have to wait days or weeks in fear to find out, but stopping testing isn't the right answer. Upping public awareness that these things happen, and frequently, is a much better campaign to wage.

/gets down now.
--Beth

From:

ericakeithley.livejournal.com

Amen! I agree that a false positive in medical testing is much to be preferred to a false negative. False positive = worrying (usually for a short time) about something that doesn't happen. False negative = people don't get needed treatment and can die. I also agree that more available information is what is needed. I think that if I had been in possesstion of more complete information before my experience I would have dealt with it better. That's all. Didn't mean to trigger a rant. :) I think we're on the same side.

From:

zuleikhajami.livejournal.com

That's not what happened at all. What happened was that one of the major medical advisory bodies (I believe AMA, but that could be wrong) proposed changing the recommendations for what age a woman with no family history of breast cancer should start getting mammograms and how frequently based on looking at how breast cancer detection and survival rates are actually affected. The proposal would have had the US match Europe's recommendations. It wasn't some crazy uninformed politician thing because someone had a relative with a scare; it was evidence-based medicine.

From:

beth_leonard

I'm all in favor of evidence-based medicine, as long as it's based on the correct evidence. I can't find the original article I read criticizing the recommendation, but I found the recommendation from the U.S. Preventive Services Task Force here.

The harms resulting from screening for breast cancer include psychological harms, unnecessary imaging tests and biopsies in women without cancer, and inconvenience due to false-positive screening results. Furthermore, one must also consider the harms associated with treatment of cancer that would not become clinically apparent during a woman's lifetime (overdiagnosis), as well as the harms of unnecessary earlier treatment of breast cancer that would have become clinically apparent but would not have shortened a woman's life. Radiation exposure (from radiologic tests), although a minor concern, is also a consideration.

Adequate evidence suggests that the overall harms associated with mammography are moderate for every age group considered, although the main components of the harms shift over time. Although false-positive test results, overdiagnosis, and unnecessary earlier treatment are problems for all age groups, false-positive results are more common for women aged 40 to 49 years, whereas overdiagnosis is a greater concern for women in the older age groups.

I find the document sorely lacking in actual evidence, it is merely a meta-analysis of death rates from other studies, and doesn't include any numerical figures for the negative health benefits they list. The best that study can do is say, "the 'number needed to invite for screening to extend one woman's life' as 1904 for women aged 40 to 49 years and 1339 for women aged 50 to 59 years." It never clarifies if that's how many actually get screened or not, only that received the recommendation.

They only analyze whether you live or die, not how bad your year is, or how much breast you save. And if you're over 75, they don't care whether you get breast cancer or not, because on average you're going to die from something else anyway. It doesn't take the person into account at all. Hopefully the individual physician would, but with the way things are trending, that may not be an option in the world of the future.

--Beth

From:

damascene.livejournal.com

Empathy on your shitty year. Yeah, no evidence of metastases to the lymph system is major good news. Hugs.

From:

ricevermicelli.livejournal.com

Actually, I have to back off that. Got a call from the surgeon this afternoon - there are mets to the sentinel nodes. Meeting up to discuss treatment plans tomorrow - more surgery is a possibility, and radiation is now on the table, along with chemo. Although we still don't have the full pathology report from the mastectomy.

From:

damascene.livejournal.com

Gaaah. (And you've already had a shittier year than mine, but we knew that.) Not as great, but still "sorry about your year", though, not you're-gonna-die. Feh. Congratulations on the new knitting pattern.