What Isn't a Risk?

This article about radiation being a threat to heart health even years after treatment has made the bc rounds. I've commented on it in a few places and knew I wanted to write about it, because the topic is important.

It's not new news that nuking the chest would possibly affect the heart. In fact, it's more along the lines of common sense.

It was a concern of mine as I struggled to make the decision about radiation, which was the hardest decision I made regarding treatment.

Thankfully, my radiation oncologist was also concerned about my heart and tried to design the radiation path to miss as much as he could. Also thankfully, my treatment center used the "gated" machine that this article mentions--one that is synced to zap at a certain point in your breathing to shield the heart as much as possible.

But I'm sure I got the highest dose they mention in the article, because my treatment involved daily regular doses and then weekly boosts of intense doses. I suppose you could say "Just don't give me the boosts," but that would risk losing the full benefit of the treatment. I'm an all in kind of gal once I decide to be all in.

I think getting radiation was a very good decision for me. In fact, I have come to think it might have been the thing that made the difference and is the reason I am still here, cancer-free six and a half years later. I'd love there to be more research on this exact point.

But that doesn't mean I don't have a risk for heart problems down the road. My heart took a measurable hit from chemo drugs and from Herceptin. But time and exercise have reversed that.

I file the heart risk away, along with all the other health ailments I may one day face because I had breast cancer and chose aggressive treatment for it.

It's a long list.

To say I don't worry about those things would be a lie, but it is true that I prefer to focus on something certain. That is the knowledge that I have had more than six years past cancer to mother my son, and I anticipate many, many more years to come.

If heart problems or other complications from cancer--or cancer itself--should come back, it'll have to catch me, because I'm already up to a sprint past that whole noise.

We Compare

This is how it is with cancer. You've never heard of someone before, and then you read they had breast cancer that came back for a second time. Suddenly, you could not be more interested in them, whoever they are.

In this case--and there are far too many cases--Anastacia, who appears to be a singer, is the woman experiencing this terrible thing. This thing I most dread for myself.

I do not read these articles, I consume them. But I never find enough information to satisfy my only question: "Is this me, someday?"

Not all cancers are the same; it could be that no two will ever act the same, so comparing might be pure folly. But it doesn't stop me from wanting to know--

How old was she when she got it the first time?

How many years before it came back?

What was the estrogen and progesterone status?

Was it Her2+

How large was the tumor the first time?

How large was this one?

Was there only one each time, or more?

What stage was she the first time?

What stage is she this time--is this a local recurrence or a stage IV diagnosis?

If it's stage IV, to where did it spread?

Did she get chemo the first time?

What kind of chemo did she get?

What kind of surgery did she have?

Did she have radiation?

How did she find the recurrence?

Clearly, way more information than you'll find in any news story and more than any person should feel they have to announce.

But it's the information I want, and I will compare her case with mine. That's just the way it is.

I wish her luck. I wish us all luck.

Cure NOW!!!!!! 

Who's Looking after the Breasts That Are Breastfeeding?

This article nails it when it says no one is really looking after the breasts that everyone encourages to breastfeed. I asked this question---"Who's looking after these?" when I was breastfeeding my son.

Seriously, if you're doing it right, they're practically smoking from use. The idea of a checkup or tune up on them does cross your mind. Knowing that someone--anyone--really cared or knew more than you did about the whole process would be a start.

The pediatrician looks after the baby. He or she wants you to breastfeed, exclusively and for as long as possible. But they can't field a real question about it. It's clear they don't consider it their area, and as this article points out, they have no way to bill you for that work anyway.

OB/Gyns give the six-week post birth check, but that doesn't include an inventory of the breasts. They also want you to breastfeed, but if you have questions, good luck. They aren't interested, informed or able to bill either.

And lactation consultants, my experience is they are gung-ho breastfeeding supporters and will give you helpful advice but ask a real question--"Why does one breast supply so little and the other much more? Is that normal?" and you'll hear, "Is the baby gaining weight?" If so, it's all fine.

Except sometimes it's not; sometimes it could be indicating a physical problem--like breast cancer. My left breast never supplied what its sister did. And after two years of breastfeeding, the difference between them was noticeable. I discovered the cancerous lumps in my left breast six months after I stopped breastfeeding.

It didn't take me long to theorize that the low milk production in my left breast might have been a sign that cancer was there, growing. Here's the thing, women are at a significantly heightened risk for developing breast cancer after giving birth to a child. Generally women of childbearing years have a very, very tiny risk for developing breast cancer, but after you give birth your chances explode and remain elevated for several years.

It becomes a lottery that anyone could win. I did. All doctors need to know of this risk, take it seriously, tell their patients about it and watch for it--with breast exams and close monitoring of breastfeeding. As this article points out, things can go wrong with it. And those things need to be followed up on and medically investigated, because it can be important for the health of the baby AND the health of the mother.

Take Tamoxifen for Ten? Not Without a Good Surveillance Plan

There's a study out from England that says premenopausal women with ER positive cancer get a benefit from taking tamoxifen for ten years. This recommendation doubles the previous treatment regimen of five years.

I'll probably hear about it at my next cancer followup, and I'll decline because I had a rocky four years on this drug. So much so that side effects eventually made me stop taking it one year early.

I'm very weakly ER positive anyway, so it's unclear how effective tamoxifen is for me. However, when you're young with cancer, they will insist you take everything. And I get that, but experience also tells me when I've reached my limit with something.

I do know one thing, though. If I were to take one more day of tamoxifen, I would insist there be a surveillance plan to make sure I wasn't developing endometrial cancer, a known risk of the drug. After experiencing problems with tamoxifen, which aren't so very rare, I couldn't believe standard of care doesn't include annual pelvic ultrasounds and endometrial biopsies.

I see that as vital for anyone taking this drug for any amount of time; it's beyond mandatory before signing up for ten years.

Reconstruction--Never, Ever a Simple Process

I've been thinking about doing a year-end push to finish up my reconstruction, but it could be that there's not enough time to work out the annoying details.

Two things made me decide to even think about trying this--there is a study about Cook nipple implants with one of the four sites nearby, and our insurance deductible will be much higher next year.

So I've been in touch with the study site, but I'm not loving their emphasis on the financial side of things. They offer a free cosmetic consultation but charge reconstruction patients a consultation fee. They'll refund it if my insurance company pays 100% of the amount they submit. Ummm, we all know that's not going to happen; it's why they insist on the fee in the first place.

Secondly, they are not in-network with any insurance. This is not uncommon for plastic surgeons, but it does make the financials a pain in the butt. I mean to the point it could easily stop you from getting anything done at all.

This place won't just help me secure an in-network exception (since my insurance likely doesn't have another local doctor doing this type of nipple) and then take what that pays them, plus my 10% co-pay under the in-network agreement.

No, they figure a cost that's 20-30% of what they want to charge (not reasonable and customary that the insurance will knock it back to) and ask me to pay that up front, before the surgery. Then they keep my money and whatever the insurance pays.

Not exactly the most honorable process, if you ask me. Clearly they want to pad what they get from insurance patients, from cancer patients. I know we're not nearly as lucrative as cash-paying, elective cosmetic patients, but to be so blatant about it strikes a sour note with me.

Especially since this is a clinical study, where I would think the doctor and his practice are getting money from the biotech company that makes the nipple.

Nah, this strikes me as too greedy. I have calls and e-mails in to Cook and the other study site directors to see how they charge.

I'll keep you posted.

Something I'm Curious About

After you've been treated for breast cancer, does your medical center/health care provider order an annual screening mammogram, or do they order a diagnostic mammogram?

I ask because I recently discovered my new medical home has a protocol of always ordering a diagnostic rather than screening mammogram for yearly followup of all people who have had breast cancer.

I was told that even if a doctor orders a screening mammogram for me, if the person who schedules the mammogram sees that I had breast cancer, he or she will change the order to a diagnostic mammogram. Something about the radiologists preferring it this way.

So what's the difference between them? As it was explained to me and as I've experienced it, with a diagnostic mammogram, the radiologist tech trots the results down to the radiologist, who reads them on the spot and either gives you the all clear and lets you go or keeps you there for further imaging such as an ultrasound or MRI. By contrast, you leave after a screening mammogram, the radiologist reads it when she/he gets to it and your doctor gets back to you with results sometime after that.

The other huge difference is that since 2010, screening mammograms have been covered 100% with no co-pay. That's not the case for diagnostic mammograms--all your deductibles and co-pays and co-insurance apply.

Which is a big deal for someone like me, someone for whom mammograms don't work anyway.

I'd prefer to skip mammograms and their radiation completely, but every health insurance I've ever had makes me get one to prove I have dense breasts, which means you can't tell what's going on in there with a mammogram.

What I need is an MRI, which I can use a failed mammogram to get. But why should I have to pay for that mammogram if there's no reason to? After all, I need to save that money to pay the several hundred dollars I'll still have to shell out every year for an MRI.

I thought we were supposed to be moving toward individualized health care, a protocol like this belies those claims. After all, if a patient tells you mammograms don't work for her but we still need one to get the MRI, why would you order the cadillac version? Just to charge her?

Actually, this is one instance I would call medical waste. A diagnostic mammogram should only be used when there is stong suspicion of an immediate issue. When I turned up six years ago for my first-ever mammogram because I felt two huge lumps, that should have triggered a diagnostic mammogram. Some quick turnaround and followup testing would have been useful all the way around. But I'm guessing I didn't get the diagnostic mammogram because I didn't have any history of disease at that point.

I also didn't know then that mammograms are useless for me and for up to 40 percent of other women.

I know this now and am finding it both frustrating and expensive that medical professionals act like they don't know.

I offered this constructive criticism to my medical providers: The protocol should be always order screening mammograms since they are free, unless specific cases would benefit from a diagnostic mammogram. The health care provider should then have to explain why the person would benefit and then also explain there will be a cost for this type of mammogram over the screening mammogram.

That would at least give me a chance to tell them they're full of it and get what I need.

Mammograms Aren't Always Enough

Now that it's no longer October, I will post my annual awareness message about mammograms and how they aren't enough for many women.

This year when you schedule your mammogram and show up for the test, don't stop there. When you get the little postal card that says you're okay, pick up the phone and call the doctor who ordered the exam.

Ask your doctor or the nurse to send you or read you the entire radiologist report. If it mentions you have dense breasts (sometimes stated as "scattered fibroglandular densities"), ask your doctor if you need a follow up test such as an ultrasound or MRI to actually see inside your breasts.

The problem is that both breast density and cancer show up white on a mammogram. I've heard it said that "you could hide a Buick" inside breast density and never know it's there. So if you have dense breasts (up to 40 percent of women do), it could be preventing a good reading of your mammogram. And, no, density has nothing to do with how large or small your breasts are. It's generally a fact of being younger (premenopausal), though it can apply to older women, too. As we age breast density turns to fat, and fat is easy to see through on a mammogram.

More and more states are passing laws that make health care providers inform women if they have dense breasts, and for good reason--not only does this make reading a mammogram difficult, it also increases your chance of developing breast cancer.

Having to think about, then schedule and get a mammogram every year is not fun, but the fact is if you stop there, there's a chance you aren't getting the effective breast surveillance you might think you are.

This article provides more information and also states that there is contention around the issue, but as one whose two, 2.5 cm cancerous lumps didn't show at all on a mammogram but were revealed by an ultrasound, with a followup MRI showing even more areas of concern, I think you can guess where I come down on this.

High Deductible Plans Not Good News

As more and more companies are moving to high deductible health plans, I have just one question: How are they not discriminatory against people who actually NEED health care?

I get that their intent is to make people decide against "unneeded" care or to shop around to get the cheapest care (as if that is possible; the information to do this is just not available). But all things are not equal on the health care needs front.

There are people who will never need to use the system; others will have to have treatment or tests or medicine and will be faced with a huge deductible--$10,000 or more before partial coverage will kick in.

If you have a family, I can't imagine these plans are a good gamble even if everyone is in fine health. If one or more members actually has health care needs, it's a huge blow to the bottom line--for not just one year but for every year.

I can't see how this is anything else except moving in a very bad direction.

Breast Cancer Awareness Means Hearing the Whole Message

Or at least it should. If you read the comments after the article I liked to in my last post, you're up to speed. I'm betting it's not the story you're hearing on the street.

No, that story is all about finding breast cancer early enough to result in a 98 percent cure rate. The rest of the story is the reason I keep this blog.

The whole story explains it's not a cure rate, because there is no cure yet for breast cancer or any other type of cancer. It's a survival rate, and it's one for only five years out. Not a lot of time by my reckoning, especially not when you're diagnosed at 37.5 years old, as I was. There's also no "early enough," because women diagnosed at any stage and with any statistics going in can one day, any day progress to Stage IV, which is always terminal. This progression will happen to 20-30% of those who get breast cancer.

Myself? Like most who get breast cancer early, mine was extremely aggressive--grade 3 out of 3, Her2Neu+++ and had spread to three out of twelve lymph nodes as well as out of one lymph node and into the tissues surrounding it. I was stage IIB, very close to IIIa, so not early stage. Middle stage.

But there isn't enough research to say if my cancer is going to come back and kill me or if I will die of something else one day. Every single survivor is in this boat of uncertainty.

And we're the lucky ones, because we haven't yet found ourselves in that 30 percent who know where this is all headed. Thirty percent--it's a rate that hasn't changed in more than 20 years!!!!

Cure NOW!!!!!!!!!!!!!!


**Thank you to the women who commented on this article for the statistics I've been searching for, which I've included in this article.