Thursday, January 03, 2008

Gee, Thanks

I understand why people made this video, and why others send it around. But, man, do I ever wish I hadn't gotten this particular "send it to all the women you love!" email a few months ago.

I'm talking about inflammatory breast cancer, Google at your own risk.

Bottom line: if I suspect that I'll be dead before next Christmas, is that making me a better, happier person, spouse, or parent right now? Answer: As it turns out, NO.

And, yet, oh the panicky hours and many late nights I've spent quietly freaking out about this.

In my opinion, the target audience for this sort of piece should be primary care physicians and other front-line health care practitioners. So at my next well woman check up, if I tell my doctor that my left breast itches like crazy and my right breast has its own issues (two bouts of clogged duct/mastitis in the past six months of nursing, one experience sleeping on a hot pad and getting a terrible blister that looks disgusting and is not healing well) my doctor will know if I need further tests or not.

See, this is a type of breast cancer that forms in "sheets" and produces no lumps visible via standard imaging technology (including mammograms). The only way to really test and diagnose is a biopsy, which can be painful, disfiguring, and incompatible with breastfeeding - not a step to be taken lightly. Speaking of breastfeeding, this is a type of cancer that's apparently not deterred by pregnancy or breastfeeding. And it can strike young women as easily as older women. Oh, and it's usually fatal. Very aggressive, fast-moving, etc. Until recently, the mortality rate was 100%. The current treatment involves a very aggressive regimen of surgery, chemo, radiation, more chemo . . . and that only gives you a 40% chance of being alive in a couple of years. So, yeah.

This is, apparently, a rare type of breast cancer. One site I saw said that 1% of all diagnosed breast cancers is inflammatory breast cancer. Do you know how many women are diagnosed with breast cancer? Unbelievably high numbers. So 1% is still a lot of women. And "rare" means something different to me, a woman who had a baby with Down syndrome while still in her 20's, a woman whose younger sister had a malignant brain tumor. "Rare" translates into "targeted for Sarahlynn" to me.

Still, I'm not usually freaked out by these sorts of emails. Except that breasts simply don't behave normally while breastfeeding (weird lumps, strange sensations, itchiness possibly explained by the ring-around-the-boob fit of nursing bras) so I seem to be exhibiting almost every advertised symptom.

I don't want to die. The thing that paralyzes me? The thought of not being around for my babies as they grow up. Man, I love those kids, and as imperfect as I am as a mother, I know in my bones that they're better off with me than without me.

So, please.

Next time you get one of these horrifying DON'T GET RAPED! or HEALTH RISK YOU SHOULD BE AWARE OF! or YOUR MICROWAVE WILL KILL YOU! SEND THIS TO ALL THE WOMEN YOU LOVE! emails, please wait a moment before hitting "forward."

First go to; check it out.

Then, once you've determined that it's real, think about it for a moment. Will sending this really make the recipients safer? Healthier? Happier? Or will it just freak them out needlessly?

Then reply with a big "fuck you" to your book club friend's mom's great aunt who sent it to you, and hit "delete."


Jonathon said...

I am SO with you on this one. I am constantly panic-stricken about my breasts. I am also nursing and every time I get an itch or a lump I dwell on it until it makes me feel sick. I love BFing but I will almost be relieved when I am finished because I will no longer wonder, "Is it a milk duct? Is it mastitis? Is it cancer?"

-Two Lines On a Stick

Beverly said...

Maybe you could google statistics on how breastfeeding reduces the chance of breast cancer.
The last "send to everyone" e-mail was about how if you take your kids to "The Golden Compass," then you're an atheist. That seemed like a weird one.

Amanda said...

My OB (yeah, your old one) said that mastitis needs to be treated or bad things can happen. She's a bit dramatic sometimes. However, she was really good about sending me to a specialist when I developed two lumps (years apart). Both were removed and both were benign. One was after Little Man was born and was an inch or so big. That one was really scary (removed Xmas eve). Benign fatty tumor. I've had Uncles and a Grandparent die of cancer. If you are truly concerned you should talk to your doctor and tell him your symptoms and let him determine the diagnosis.

Amanda said...

Oh, I almost forgot. The second one was tiny and the only reason we found it is because I had breast pain which I normally don't have. No lump was felt until I went to the breast specialist. After she removed it, I didn't have any more pain.

Sarahlynn said...

Two lines, usually, breastfeeding makes me feel *better* about my breast health, since I "know" that any lumps are milk-related. But this is different . . .

Beverly, if you read up on IBC, you'll note that it's not like traditional breast cancer, and a woman's liklihood of developing it is not decreased by pregnancy and breastfeeding (see above).

(The Golden Compass panic is stupid, as I've told everyone I can convince to listen to me. The producers caved and took any hint of controversy out of the movie, alas, but the Catholics are still protesting it, despite getting all the changes they wanted, because if people enjoy the movie they might want to read the books! And then they might have questions! In other words, the Roman Catholic Church is behaving exactly like The Magisterium Pullman criticizes in the novels.)

Amanda, that must have been horrifying. I hope that those were two isolated incidences and that you never have to go through that again!

I don't have a significant family history of cancer (two uncles had prostate cancer, but I think I'm safe there, plus my sister's brain tumor) but I don't know of any evidence that this type runs in families.

As my blister (slowly!) heals and a new moisturizer is improving my itchiness and orange-peel textured dry skin, I panic less. I will definitely mention my concerns to my doctor at my next well-woman visit (about 2 months away) but probably won't schedule a special visit just for this.

Still, I would just be annoyed by the occasional blocked duct and itchy skin if it weren't for this PANIC NOW email I got last summer. When you list symptoms that are common, and not typically indicative of cancer (mastitis, dry skin) then you're likely to panic a lot of people needlessly.

Jessica said...

Oh, Sarahlynn....I adore you.

Tracey said...

I have a good mental health policy about these stupid ass 'forwards'. I delete them. All of them. Without reading them. If you're really my friend, you won't clog my already full in box with useless CRAP forwarded email about how good a friend I am, how special I am, or how you want to protect me from crap like this.

But hey, I'm full of sunshine today! :)

Brian said...

Yeah. Most people who get cancer have previously felt itching.

Also, practically 100% of people injured in car accidents have eaten food at some time in their life. If you've ever eaten food, you're doomed to be run over by a bus! Everybody panic! Forward this to all your friends!

Krupskaya said...

Good God, what sloppy journalism that was! The whole time I was like, "But what percentage of breast cancers is IBC? Wait, WHO GETS IT? HELLO? ARGH!"

But I'm totally with you on "rare" meaning "targeting Sarahlynn," except it's actually "targeting Krup. Exclusively."

Krupskaya said...

Also? I loved it where the newscaster was on the phone and says "Inflammatory...breast...cancer. Yes. And it's three words."

"Three words." Classic.

Marty said...


I stumbled upon your blog today by accident. I hope you don't mind a few true facts about I.B.C.

The first thing that you should know is that the rate of I.B.C. is widely considered to be around 4% of the total number of cases of Breast Cancer reported each year.

Of those who do contract I.B.C., 50% will not survive past five years.

I.B.C., according to the doctors who study it, is more than likely to be a genetically based type cancer which does make it more likely to be seen in generations of a family.

You are right that more doctors should be aware of the symptoms, but the truth of the matter is that at this time they are not and a women must have this knowledge to advocate for proper health care.

Peace and Good Cheers

Amanda said...

I almost never forward e-mails. I never forward *warning* e-mails. I have checked some out on before. If I pass anything along it has to be laugh out loud funny and I forward it to the people that forward me all the crap.

Sarahlynn said...

Thank you, Jessica!

Tracey, that's a good policy. I just don't have that much self control . . .

Brian, that was awesome; thank you. Of course, this was some intense itching (and persistent! for months!). But, yeah, your point definitely stands.

Krupskaya, yes, for a minute I wondered if it was a spoof piece, ala the Onion News Network. Then I doubted it, then I Googled it. Serious as, well, cancer.

Amanda, a very good policy!

Marty, I apologize for having some of the specifics slightly wrong. Although I found plenty (!) of information about IBC on the internet, I found it so disturbing to read that I couldn't go back and reread to verify percentages (which is why I qualified them in my original post).

I am slightly relieved to hear that IBS probably a genetically based cancer, given my limited family history of cancer.

My problem is not with the idea that patients should be participants in managing their own health care but rather with this major scare-tactics push listing VERY COMMON symptoms and suggesting that women who experience these very common complaints submit to a terribly invasive test to rule out a condition that's uncommon and likely fatal.