Tag Archives: Breast cancer

What I Learned about the Future of Breast Cancer Detection from Joining a Clinical Trial

16 Jun
Helping other women lets me get in touch with my inner goddess (thank you, Wikimedia Commons and the ancient Minoan culture!)

Helping other women lets me get in touch with my inner goddess (thank you, Wikimedia Commons and the ancient Minoan culture!)

Because I just love living dangerously, I am a card-carrying member of the Sloan-Kettering Special Surveillance Program for women who are at a high risk of breast cancer. That means that every six months, as I did yesterday, I pop in to the famous cancer hospital for a mammo or an MRI and a little hands-on quality time with the wonderful Dr. Mangino who runs the program. I call it my Semi-Annual Sloan-Kettering Day of Beauty.  I’m lucky, because I still don’t actually have cancer. And anyway, today I want to tell a happy story. It’s a story about how I got to see the future of medicine.

One of the benefits of being an “interesting” patient who has the good luck to be treated at a teaching hospital is that I have the opportunity to be asked to participate in clinical trials. Last winter, before I went to my last S-K day of beauty, I was asked if I would, in addition to getting my usual MRI, get a special kind of mammogram for this study:

https://clinicaltrials.gov/ct2/show/NCT01716247

“Comparison of Contrast Enhanced Mammography to Breast MRI in Screening Patients at Increased Risk for Breast Cancer.”

According to the information provided by Sloan-Kettering via the National Institutes of Health, the purpose of the study is “to determine if Contrast Enhanced Spectral Mammography (CESM) will be able to detect smaller/earlier breast cancers as well as breast MRI can.”

What that meant was that instead of just having a plain mammogram, I had an IV needle placed in my hand filled with a special dye. As it circulated into my breasts, it made the contrast between different types of tissue clearer.

Honestly, except for the slight annoyance of the initial pinprick and the tangle of the IV line, it wasn’t a big deal at all. And after it was over, a young scientist working on the study spent time talking to me and showing me some of the preliminary results of the study. He showed me pictures of regular mammograms and contrast-guided mammograms. The results were remarkably different. It looked as if the different areas of tissue were limned in dark gray in the contrast-guided mammos, whereas the regular ones looked much more pale and indistinct. I felt sorry for radiologists who had the terrifying—but boring-looking—job of trying to find suspicious pieces of matter on such a vague field of off white. It looked very easy to miss a cancerous lump in such cases. After I saw that result last winter, I went home feeling very pleased that I had been part of something bigger, something that might be useful someday.

And yesterday, I was even more pleased, because the lovely Dr. Mangino told me that the next time I came, I would be getting a contrast-dye mammogram for real. “The study results are looking great,” she said. “I wasn’t convinced at first. But I’m impressed.” At the front desk, the young receptionist told me that Sloan-Kettering is still one of the few places—if not the only place—in the nation where contrast-enhanced mammograms are done. Yet. But if they’re as good as they look as if they are, they’ll be coming. And when they do, they’ll save lives. And I’ll know I did at least a tiny little bit to help.

Do you have any interest in joining a clinical trial of any sort? You can find out more at ClinicalTrials.gov.

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Sloan Ranger

9 Oct

This is breast cancer awareness month and don’t think I don’t know it. Today is my Memorial Sloan-Kettering Day of Beauty. I will get an MRI and an exam as from the lovely Dr. Mangino, head of the Special Surveillance center for high risk patients.  Don’t get me wrong. It’s a very nice place. They get it. They have a beautiful modern building, a seat on the elevator, and snacks! Oh yeah—and so far, I haven’t had breast cancer!! But I have had Atypical Ductal Hyperplasia several times, and I’ve had enough surgical biopsies that if I ever cheat on my husband, my partner in infidelity is going to think I spent my former life as a not-very-good pirate who got in a LOT of duels. You should see the other guy ha ha ha.

Anybody who has read the book Brightsided by Barbara Ehrenreich knows that breast cancer is a disease that gets a way-disproportionate amount of funding, but is also probably a cash cow for companies who want to sell anything pink. And it’s also a disease where people are looking for role models. If you have pancreatic cancer, people don’t expect you to be jumping out of airplanes, kicking your feet up on the beach, cuddling a basket of puppies or doing any of those hyper-enjoyable activities that bring to mind ads for constipation or erectile dysfunction products. But breast cancer, oh no, your job is to inspire everyone else on the planet.

The funny thing is, I have a very dear friend with breast cancer and she actually is one of the most inspiring, positive, interesting people I know. And her loving husband is just as inspiring as she is. They had a big party on their 19th wedding anniversary because they didn’t think she’d make it to her 20th. And now, thanks to her fighting to be in an experimental drug trial and various other things, she’s planning her 25th. So here I am, ruining my storyline.

Anyway, the reason I wanted to write today is that I know that a lot of people are afraid of MRIs, and I want to tell you that there is nothing to be afraid of, and if you ever have the opportunity to have one, here are my tips. (My own dear husband has never had the pleasure.)

Okay, first, you get changed. Take off all your metal items—earrings, etc. You can keep your gold rings. You have to tell them if you have metal inside you (titanium markers or things like that are okay). Because that sucker is magnetic and things will go flying around. Nota bene: If you ever considered having a tattoo with any kind of metallic element—people sometimes do this with tattooed eyeliner for instance—don’t. Because then you can’t have an MRI and you may need one.

Then, you lie on this skinny table. This is the time when you get into your inner zen state. One of the gifts of raising children for me is that they tired me out so much that for the rest of my life, whenever I lie down, I can instantly drift off into a dreamlike state. Now here’s my special trick: ASK FOR A BLANKET. They always have blankets, but they don’t always remember to give you one. Sometimes the blankets are heated. Heaven! Sometimes they give you earphones, sometimes they pipe music in if you want it, and in your hand they place a ball to squeeze if you’re in distress. Then, in you go. Now, some people get claustrophobia, My advice is to reframe this thought. Remember in the 1990s or sometime back in the day, they had these special napping places in big cities where you could take the perfect nap for like 20 minutes? To me, that’s what it’s like. It’s your pod. Only, instead of costing $20 or whatever the ridiculousness was, it costs $1000 and you get pretty pictures.

Oh, that reminds me. Sometimes they put in an IV and give you contrast fluids so they can see certain areas. (Sometimes MRIs are WITH contrast, sometimes WITHOUT). The IV is no big deal especially if you ask the nurse questions when he/she is putting it in because I love nurses and they’re all interesting IMHO. Then, when they put the fluid in (usually sometime in the MIDDLE of the MRI—they might take you in and out several times), it may feel a little cold or warm, I can’t remember which. But it’s not a big deal. At certain points, they warn you that it’s going to make some loud noises. It does, but for me, I’m still happy because I lovvvvvvve lying down so much and it’s so much better than fishing pennies out of a two year old’s mouth or toy cars out of a toilet, or, say, work. All you have to do is lie there and think dumdedumdum, sing along with the music in your mind, think about clouds or that super romantic vacation you took on the beach or creative ways your enemies shall come to no good end that you have no hand in causing or whatnot and in about 20-40 minutes it will be over and you will be sad, because you have to rejoin the land of the sitting and standing again. You were all cozy in your little magic pod and now it’s over.

My other piece of advice for MRIs, and this is a big one my friend, is please make sure it is precertified by your insurance company. Or then you will be crying, big time, when you get the bill.

Happy Breast Cancer month! Pink balloons and ribbons and bunnies and bears and NFL mouthguards and cars for all!! XOXO

Writing Spark: What’s a medical procedure you’ve had and would like to explain to others, telling us whether it’s not so bad or worse than you thought. 

Everything I learned today I learned From the September 2012 Ladies Home Journal

29 Sep

DToday I had a two-and-a-half hour, completely pointless wait for an MRI. [They neglected to tell me when I told the genius receptionist I was checking in for my 1:00 appt. that it was actually at 3:00—ooooh, I was STEAMING..).Combined with two hours of Divorce Court being played at top volume, my powers of concentration were low, low, low. I was totally distracted by whether or not 42 year old Curtis should get a divorce because he wanted to be a stripper. “Who’s going to want to see that big old belly of yours?” scoffed his wife. But let me tell you, Curtis was quite the charmer, and the wife wasn’t giving him, um, how do I say this delicately, “any.” And Curtis was plainly not the ascetic type. So by the end of the episode I was pretty much a Curtis woman. I was pretty damn sure I’d have a few bucks for Curtis’s golden Mankini so he could live out his dream, big old belly or not.. . .

Although I didn’t quite have it in me to do anything constructive, I did manage to make a thorough study of the Ladies Home Journal, September 2012, and so I bring its wisdom to you, just in case you don’t have to spend all of eternity at the mercy of MRI establishment receptionists:

  1. 1.    You don’t have to put a tip in the tip jar at Dunkin Donuts.
  2. 2.    “Life is precious and you shouldn’t waste a minute of it with someone who isn’t reliable,” says Julianna Margulies, who plainly spent plenty of minutes with men who weren’t reliable.
  3. 3.    You’ll feel better if you dress up with some nice heels than if you wear your old sweatpants from college. (did they get my mother to write this?)
  4. 4.    Yes, you CAN get the new rotating, color-changing Airwick candle in “Fresh Snows and Sleighbells” scent—but only at Target.
  5. 5.    Breast cancer sucks.
  6. 6.    Foods that are good for your gut: appples, pears and berries, quinoa, nuts, psillium, water. (How is “psyllium” a food. Or water, for that matter)
  7. 7.    “”Taking probiotics may not urt you but there’s n guarantee they make you any healthier,” says Dr. Something Lee. (Really? Damn, says the woman whose diet consists of 75 percent Greek Yogurt)
  8. 8.    76 percent of American women have used their cell phones in the bathroom. Eeewwww.
  9. 9.    Delicious recipe idea: cake truffle rats. Also, eyeball cake.

10. 11. Fear of new foods is called food neophobia , or “Avoidant/Restrictive Food Intake Disorder.” (Hold the snake etouffe)

11. Burgundy is the hot color for fall. (Crap, I thought it was oxblood—are all my accessories going to clash?)

12. Yes, that marriage COULD be saved.

13. 85 percent of people think a healthy smile can enhance connections we make. The other 15 percent never leave their darkened computer dens.

14. It’s good to embarrasss your kids. (Evidence? None. The author just liked describing how she embarrassed her kid.)

15. Pumpkins, shmumkins. Avoid the mess and bother by decorating “Funkins.”

16. If you want to know how quickly your system works, eat a piece of corn and look for how quickly the kernels “exit.”

 

Prompt: What would you name the article in which #16 appears? And, who’s right: Curtis or Mrs. Curtis? Also, what kind of really mean letter should I write to the MRI place? Or was glowering sufficient?