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!!!!!! 

Not a Good Fit

A daughter of a breast cancer survivor has asked Victoria's Secret to make and sell bras that will fit prosthetics for women who have had mastectomies, according to this article.

All I can say is in typing that sentence, I can't see how Victoria's Secret fits with mastectomies and prosthetics. It just feels wrong typing it.

Absurd, even. But then I'm not a well-meaning daughter of a survivor, I am a woman who had breast cancer, had a mastectomy and had to find bras that would hold my breast form for two years, until I had reconstruction.

Let me just say I don't trust Victoria's Secret with the job of building a functional, comfortable bra for women who have had mastectomies. It's not their niche, and I would prefer they didn't co-opt it in the name of making more bucks.

Helping me post-cancer is really not as simple as letting me spend my money on a frilly bra.

No, that's entirely absurd.

And, speaking of the article, please say it with me again: "No one can know they've beaten breast cancer until they live a long life and die of something else."

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.

Things That Make This Much Sense Should Just Happen

A fabulous post urging that 30% of breast cancer funding should be directed toward researching metastatic breast cancer, the only breast cancer that kills.

The other 30% figure signifies the percentage of women who get breast cancer that will see it spread at some point in their lives.

As the article points out, this is now my fight. Like others who have already been diagnosed and treated, prevention and detection efforts, which receive the lion's share of funding, are of no use to me.

Seriously, if great progress can be made on the metastatic bc research front in ten years with adequate funding, I say let's start yesterday.

It's a no-brainer for me to say that if my cancer ever does come back and/or spread, I'd want some good research, some cure, out there for me.

Wouldn't we all?

Thanks to Nancy's Point for steering me toward information about this effort.

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.

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.