Saturday, October 29, 2011

Women with Cancer


Please join me as I develop an on-line community that supports, empowers and motivates women with cancer
FRIDAY, OCTOBER 28, 2011







There's nothing more energizing than being around creative people. They do what they do because it's part of their DNA. My friend Claire M (her name has been changed) is one of them. Some of her words to live by are on the left.

Right now though, Claire has more on her mind than the next beautiful thing she'll create. Her family health history includes an extensive amount of breast cancer (her mother was diagnosed at 28) and she is a colon cancer survivor. Now, at 37, she's found a palpable breast lump.


There's one more thing: Claire doesn't have any health insurance.

She lives in Harris County, Texas, home of the massive Texas Medical Center, one of the richest, most medically intensive areas in the world. Some 40 institutions make up this city within a city.

Yet according to Shern Min-Chow, co-anchor of CBS-affiliate KHOU-TV in Houston, some 30 percent of Harris County's own residents are uninsured, far from easy access to the Medical Center campuses. That's about 1.2 million people, based on current census data. The national average is 16 percent, Min-Chow told the audience at last week's Seventh Annual Breast Health Summit, presented by the Breast Health Collaborative of Texas.

Women like Claire, with medical issues that are not emergent but ARE pressing, spend days, weeks, even months trying to have one health issue thoroughly addressed. So far it's taken two months to have an appointment at The Rose, Houston's leading facility for breast health services for under-and uninsured women.

First, Claire told me, she needed to have a referral to The Rose from a private physician to have a mammogram. She doesn't have a primary care practitioner, or PCP.  So The Rose provided a referral so Claire could be referred back. Then another few weeks elapsed until she could see the doctor for the referral. This physician, in turn, was alarmed to the extent that she recommended and scheduled a stereotactic biopsy for Claire at The Rose. In turn Claire made arrangements to a friend travel to Houston so she could accompany her for the procedure.

That's where our last conversation had ended. Yesterday morning I thought about Claire while  I was looking through my notes from the conference, so I dropped her an email.  Ironically enough, the panel that Shern Min-Chow moderated was called, "Breast Cancer & Access to Care: The Texas State of Affairs." No one really has a clue. The private insurer pointed to the legislature; the public health official discussed the burgeoning workload; the think tank policy person ...just talked. If you asked anyone in the audience what was said the answer very well might have been, "it's a mess." Access to health care for the uninsured in Texas is a rudderless conversation.

What they needed on the panel was someone like Claire.

She arrived at the The Rose to find the test wasn't free, but cost $65.00. She was told that without the $65.00 she couldn't have the test. And instead of a sterotactic biopsy, where a small bit of tissue could be extracted for pathology analysis, the physician on duty that day said it wasn't on the schedule. After a mammogram, and an ultrasound, he said he couldn't see anything but that her breast were "very dense," a diagnostic problem in many younger women. He did add, as he was walking out the door, that she should probably get some "genetic testing."

And that's where it had all stopped when I talked with her yesterday. Nothing else has happened.  She applied for Medicaid to find that she made $100 too much per month to qualify. She followed the instructions to apply for a Harris County "Gold Card," following the procedure online, only to find out half-way through that instructions have to be filled out and mailed in or delivered.

In the meantime, she says, the lump is still there.

And yes, I know it's October.  We didn't have time to talk pink. We didn't have time.

                                                                            ###

FRIDAY, SEPTEMBER 30, 2011
 "Having breast cancer is massive amounts of no fun." -- Molly Ivins


It's time to upend the ribbon and turn the pink upside down.

October has made me uneasy for a long time.

If you put four women with breast cancer in a circle more likely than not one of them will develop and die of incurable, metastatic disease. Or from the attempt to wrestle devilish cancer cells into a chronic condition, like diabetes or heart disease. But cancer is not like diabetes or heart disease for one obvious reason: chemotherapy, as a way of life, ultimately is not sustainable.

For the other three of us from the circle, the treatment that brought about remission (does anyone say cure?) can leave side-effects that are physical and psychic, not to mention financial. In the past thirteen years I have learned to deal with all but one. The repeated distress of losing that one woman from our circle, the one whose cancer cells were simply uncontrollable, is like losing a limb. Over and over again.

In the meantime, medical sociologists like Gayle Sulik, PhD, in her book Pink Ribbon Blues and sharply observant bloggers like Rachel of The Cancer Culture Chronicles keep raising the curtain on 'pink profiteers' and the 'pinkification' of a difficult disease into something far from the reality most women experience. Money that could be used to fund meaningful research or even funds to directly help affected women is instead diverted into piles of pink "stuff" with the pennies (if that) from those purchases ending up God knows where.

"Breast cancer has made a lot of people very wealthy," Lea Goldman writes in her excellent article,"The Big Business of Breast Cancer." in Marie Claire.  Here's she's not razzing on the health industry but the undersided tactics of several large, national breast cancer charities that employ telemarketing services to solicit your funds. From those funds, these "philanthropists" pay themselves handsomely, and oops, sometimes "forget" to make those donations made to the cause they claim to help.

Read Goldman's article side by side with USA Today writer Liz Szabo's "Pink ribbon marketing brings mixed emotions poll finds.," developed from questions added on to an exclusive USAToday/Gallup Poll about President Obama. What stuck out like a sore thumb: more than 80% of the sample said that they had purchased a pink ribbon product.


So is this what breast cancer - or any kind of cancer - awareness means to the majority of Americans now? Purchasing a product?  What happened to modifying risk factors that can be addressed or helping assure that underserved populations have the same care that those with insurance do? Isn't that part of awareness, too? Without additional surveys and questions directed specifically at the link between the two (and other factors) we can't know for sure.  But I'm not sure that would be far off the mark.
#    #     #

Starting Monday "UPENDING PINK" October on #BCSM with Gayle Sulik, PhD, at 9 PM ET.  Please join the conversation.
MONDAY, SEPTEMBER 26, 2011
Many of you know about the recent loss of a lovely friend and family member to metastatic breast cancer.  She was 55.  Her first grandchild is due this January.
        The cruelty of cancer is relentless.
        My friend had access to great care and the mind-bogglingly expensive 'designer drugs' that did little to stem the tide of her cancer. They didn't improve her quality of life, either.  In fact, treatment further weakened an already impaired immune system and ultimately she died of pneumonia after three weeks in the hospital.
        At her memorial service this past Friday the Seattle sky was cloudless.  Many of us were too warm in fall clothes but there was a lovely patio adjoining the reception area so we stood out there, remembering, laughing, letting tears flow, talking about our dogs and the weather.
        There was a box with programs and next to that, another one with pink ribbons and pins.
        I hesitated.
        The hesitation, in and of itself, infuriated me. I didn't want the politics of cancer to intrude on this quiet, private evening. But that is what a pink ribbon has become: a mixed signal. Where it may have once stood for hope and advancement, it now also represents commercialization and 'branding' (a term I've come to dislike) that has absolutely nothing to do with or for cancer.  That simple ribbon, which I wore proudly when diagnosed in 1998, is now seen to mask the darker realities of cancer: treatments that don't work, the sorrow of lives cut short.
        But the people who put the ribbons out had no idea about mixed messages or health culture.  So I put one on my collar.  And as soon as the service was over I left it behind.
      
Monday, September 26, 2011
SUNDAY, SEPTEMBER 11, 2011






Mastectomy? Know Your Options

A woman came to me for help last week; a small breasted woman with early stage breast cancer. She wanted to discuss her options with me. Her preference would be to have a mastectomy, but she was afraid of the cosmetic outcome. She was embarrassed to admit this concern as her doctor had commented that her cancer should be her first priority. I assured her that cancer treatment with a good cosmetic result is possible. I asked her if a nipple-sparing mastectomy (NSM) with the incision through an inframammary fold (IMF) was offered. She just stared at me.

I explained that in some circumstances NSM was possible and that although there are no long-term studies, the five year studies show no increased risk for NSM over skin-sparing mastectomies. It was possible that she would not have to endure additional surgery to reconstruct her nipples and that the outcome would be more natural looking. I also explained that with an IMF (under the bra-line) incision, the scar can be hidden in a natural crease. The relief on her face was amazing.

Why, I ask myself, do more doctors not offer these procedures. Are these procedures more time consuming, more difficult or are some doctors simply not current on new developments in breast cancer treatments and surgical options? Have they lost sight that there is life after cancer? After all, isn’t life-after cancer the main reason for treating cancer? Perhaps the surgery takes longer or is more difficult? I consulted an expert on NSM, IMF MX, Dr Alex Swistel, of the Weill Cornell Breast Center, and his response was that this approach is more difficult and it requires specialized training as it requires instruments that can reach as far as that in a conventional mastectomy. Many experts that have tried it abandoned it for that reason; however, this procedure is best for keeping blood supply to the nipple without cutting around it and really hides the scar very well. This procedure certainly is not for everyone, but reports are now showing virtually no recurrence in the nipple even after 10 years. (Studies done in Italy seem to have the longest follow-up.)

I recently attended a conference on new developments in the treatment of breast cancer: “2011 Meet the Experts: Breast Cancer Education.” I had the opportunity to hear what is new, and also to ask questions of the panelists. Dr Eleni Tousimis, of the Weill Cornell Breast Center (see new link added below for updated information), spoke at length on the latest technological advances in the treatment of breast disease and on minimally invasive techniques, including the latest on NSM. Dr Joshua Levine, of the New York Eye and Ear Infirmary, spoke about the benefits of using one’s own tissue for reconstruction (autologous breast augmentation). Microsurgery has come a long way since its invention by vascular surgeons in the 1960s. The term refers to any surgery involving a surgical microscope. And it has found one of its best applications in breast reconstruction. Through microsurgery, surgeons are able to harvest healthy tissue from one part of a woman’s body and reattach it to the breast area. Through the careful process of attaching blood vessels, microsurgery allows patients to have natural looking breasts made from their own, living tissue. Another benefit is the minimized impact and injury to muscles, allowing patients to enjoy a faster, fuller recovery than with earlier flap reconstruction. For more information, please view the following link.
http://www.naturalbreastreconstruction.com/procedures.aspx

Many women choose implants over flap reconstruction methods. While breast reconstruction with implants may not always yield as realistic-looking results as tissue-based reconstruction methods, the procedure is less risky and requires less surgery. Generally, implant-based reconstruction results in less scarring and poses fewer risks to the patient than tissue-based reconstruction, making it an attractive option for women who prefer less invasive procedures. I am grateful for my wonderful team, Drs Alex Swistel and Mia Talmor. I chose silicone implants, have my very own nipples and I must say I don’t look as if I have had a mastectomy.

Exciting times in the world of breast cancer surgery. However, one thing I heard at the aforementioned conference was quite disturbing: 30% of all women treated for breast cancer do not choose reconstruction. It is one thing to choose not to have reconstruction; it is quite another to decline it because no one has either offered it or explained that insurance companies are required to cover the costs. Are doctors not discussing this with their patients? Are patients not aware this is an option? Clearly not all options are for everyone, but an informed patient is an empowered one.

I had the opportunity to discuss NSM and other reconstruction issues with Dr Paul Baron, co-founder of the Charleston Breast Center and expert on NSM. He was incredibly informative and I asked him if I could borrow both his knowledge as well as a blog he wrote for The Reconstruction Network: “Who Can Have a Skin-Sparing and Nipple-Sparing Mastectomy and Why”. I have attached the link below as I think you will find it most informative.
http://breastreconstructionnetwork.com/who-can-have-a-skin-sparing-and-nipple-sparing-mastectomy-and-why/

While we are still waiting for the cure, much progress has been made in surgical and reconstructive procedures for breast cancer. Oncoplastic surgical techniques can be used to remove the cancer while achieving excellent cosmetic outcomes. NSM and IMF are not an option for all women, and certainly women will have preferences on reconstruction options. However, women need to know that they have options. Information is power and it has never been more important to be informed and knowledgeable about your medical care. My goal is to get this information to women and to empower them to make choices that fit their own individual needs.

For more information on NSM and reconstructive options, please visit:
http://diepflap.com/nipple_sparing_mastectomy.html
http://diepflap.com/br_treatmentoptions.html
http://aes.sagepub.com/content/31/3/310.abstract
http://talkabouthealth.com/of-the-choices-of-lymph-node-procedures-how-do-you-decide-which-to-employ-and-which-have-you-found-to-give-the-most-reliable-results (this link added 10/29/11)


To locate doctors who perform NAM, IMF, and DIEP reconstruction, email me and I will assist you.

Elyn Jacobs
elyn@elynjacobs.com
http://elynjacobs.blogspot.com
http://elynjacobs.blogspot.com/2011/06/mastectomy-know-your-options.html?spref=tw

Friday, October 28, 2011


Coping with Hair Loss with Style During Cancer Treatment

Q&A with Frédéric Fekkai
Renowned style-maker Frédéric Fekkai is one of the most celebrated names in beauty and hairstyling. Acclaimed for his modern, individualistic approach, Frédéric has made an indelible mark on the beauty and fashion communities with his innovative styling, exclusive salons, and luxurious hair care products. Look Good…Feel Better recently conducted the following interview with the celebrity hairstylist.
Many women say that the most devastating and obvious change they experience from chemotherapy is hair loss. What advice would you give women on how to create a chic, easy-to-maintain hairstyle if they start to lose their hair due to cancer treatment?
I think one of the most important tips at the start is to keep a positive outlook and surround yourself with advisers you trust—whether it’s your hairstylist, a best friend, or your daughter. They can help you make the right decisions. Also know that we have a wealth of amazing beauty resources to help you get through this difficult time, and hair loss is almost always temporary.
For thinning hair or minimal hair loss, try a shorter style with slight layers, which can add extra fullness to the hair. If hair loss is extreme, you can choose from a large selection of stylish ready-made or custom wigs available through salons and wig stores. Today there are salons that specialize in wigs and hairpieces especially for clients experiencing hair loss from chemotherapy. The key is to locate a hairstylist or wig specialist who is skilled in the art of wig styling—someone who will make you feel comfortable, relaxed, and confident. Ask around for recommendations to learn where people have had the most positive experience.
If a woman chooses to purchase a wig to camouflage hair loss during cancer treatment, what should she look for?
There are many options today for women interested in finding a wig, including custom-made to ready-to-wear styles, natural or synthetic fibers, and many colors and styles. The first step should always be a personal consultation with either your hairstylist or a wig specialist. I suggest bringing a photo of yourself from a great hair day. This will give some guidance to the specialist as to what you may want to create when selecting a wig. If you find a wig with the perfect color and texture, a wig specialist can cut it to match your look.
Most wigs look natural—even the synthetic ones, which are less expensive. Keep in mind that human hair requires more care and will have to be washed and reset from time to time, depending on use. The focus should be on finding a style that makes you feel confident and beautiful.
As you consider your options, take the time to educate yourself before you make a purchase, as prices vary.
How should a woman go about picking a color that will enhance and brighten her complexion?
Consult a colorist and pick a shade that will be best for your complexion. I would suggest trying a wig in a shade lighter than your natural color. Some women find that it brightens their appearance and offsets changes in their skin.
What are some suggestions for stylish alternatives to wearing a wig?
If you want to take a break from your wig, you’re running late, or you just want to change your look a little, try a scarf. I love a headscarf on a woman. It can be a very chic look. Think Jackie O and try wearing a gorgeous, richly colored scarf and a pair of oversized sunglasses—a classic style.
There are endless ways to tie scarves. For different scarf-tying techniques, visit the “Beauty Guide” section on the Look Good…Feel Better website (www.lookgoodfeelbetter.org). For additional ideas, visit “Playtime with Your Scarf” on the Hermès website (http://usa.hermes.com). There are also some amazing hats available that can disguise hair loss. Use this time to experiment with your style and have fun. Keep it classic and look online to see how past fashion icons have worn hats and scarves.
Once hair starts to grow back after cancer treatment, what do you suggest for keeping it healthy?
It’s important to moisturize your hair with a light conditioner. Allow the conditioner to sit on the hair for extra time, and massage the scalp to relax the cuticles.
If a shorter haircut is the only option, what styles would you recommend to make it fashionable or trendy?
I suggest a short bob like Halle Berry’s current style or a classic like Louise Brooks’s. Keep it short and all one length to give the impression of more body. Use moisturizing products and do regular hair masks to help maintain healthy hair.
When shopping for wigs, women sometimes want to experiment with fun new styles that they normally would not wear. What guidelines should they follow when picking new styles that complement their face shape and bone structure?
I always believe in keeping it modern and classic. You want a style that suits your face structure and personality best. I would stay away from being too trendy, as you want to try to feel like your most beautiful and elegant self.
The Look Good…Feel Better program was founded and developed in 1989 by the Personal Care Products Council Foundation, a charitable organization established by the Personal Care Products Council, the leading national trade association representing the global cosmetic and personal care products industry. The program is a collaboration of the Personal Care Products Council Foundation, the American Cancer Society, and the Professional Beauty Association/National Cosmetology Association, a national organization that includes salons, spas, distributors, manufacturers, and more than 25,000 beauty professionals. For more information about Look Good…Feel Better or programs available in your area, please visit www.lookgoodfeelbetter.org, call (800) 395-LOOK [5665], or contact the local American Cancer Society office.

Breast cancer causes foot-in-mouth disease in others


By Health writer
msnbc.com contributor
updated 30 minutes ago

When I was first diagnosed with cancer, I was a wreck.  I tried my best to keep it together, to keep a muzzle on my hyperactive mouth, but inevitably some highly inappropriate comment would come tumbling out.

"Would you like paper or plastic?" a grocery clerk would ask.
"I have breast cancer," I'd answer. "They found three masses and now they're saying the masses are tumors and that I have to have a double mastectomy. I didn't even know how to pronounce mastectomy until this happened! Oh ... uh ... paper would be great."
Euphemisms are us 
After awhile, though, I didn't have to worry so much about the inappropriate things I was saying because others were coming up with their own questionable cancerspeak.
Don't get me wrong. My friends and family (and even a few kind strangers) have been there for me 100 percent -- bringing by meals and flowers and homemade pies; taking me for walks and checking in to see how my 173 doctors' appointments went that week.
It's just that getting sideswiped by cancer -- not to mention spending all of your time thinking and talking and waiting for test results about cancer -- can make a body oversensitive.
Not to mention testy.
I certainly was the first time somebody made the mistake of wishing me well on my "journey."
My journey? I wanted to yell at them. I've got breast cancer. I'm not going to Acapulco!
But the euphemism seemed to be everywhere -- on the lips of the medical assistants at the doctors' offices, emblazoned in pink across the top of the breast cancer websites.
1.  9 tips on what to say to someone who has cancer
1. When I was first diagnosed and heard I was going to lose my girls, I was extremely sensitive to anything breast related -- even language. Try to avoid words and phrases like what a boob!, tit for tat, keeping abreast of the situation, etc.
2. Same goes for your girls. If you're extremely busty, be a mensch and rein in the cleavage (ditto for the tight T-shirts). I'm still miffed at the medical assistant who took me back to see one of my docs (two weeks after my double mastectomy) wearing a plunging neckline and no bra. Super sensitive, honey!
3. When you first hear the news, try not to ask questions like "What are your odds?" or "What stage are you?" Instead, ask what the doctor said or how they're going to be treating the cancer. 
4. If you don't know what to say and feel like you're going to say something stupid, just say that. The worst thing in the world is being around people who know you've got cancer, but don't acknowledge it in any way. You assume they don't care.
5. If you know other cancer survivors, definitely ask if your recently diagnosed friend wants to connect with them. I had several people do this for me and came away with invaluable information and tools for my fight.
6. Between the doctors' appointments, the tests, the treatments and the cancer calls ("Hey, I need to share some bad news with you ..."), it's easy to get "cancered out." Definitely check in and ask how things are going, but recognize that your friend may not want to talk cancer 24-7.
7. Because it can be so exhausting (not to mention depressing at times), I asked my friends and family to send me inappropriate jokes or YouTube videos of people tripping -- anything to get my mind off the fact that my name might be on the Grim Reaper's hit list. Others may prefer links to cute kitten pics, choice items on Regretsy.com, or heavy metal videos.
8. Sharing gossip, bad date stories or neighborhood news is another great way to help distract a friend who's feeling overwhelmed. I once got so tired of all the cancer crap I had to deal with that I asked a girlfriend to tell me all about her recent colonic. She cheerfully obliged and gifted me with 20 cancer-free minutes. 
9. Some of the nicest, most welcome things you can say:  Here, let me do those dishes;  I'm taking your garbage and recycling out with me; Put that wallet away -- lunch is on me! 
And cancer wasn't just a journey. It was also a voyage. Or sometimes an adventure (this at least made me feel like I was hacking through a cancer jungle with a machete and pith helmet).  Occasionally, someone would assure me that cancer was a gift (show me to the exchange department!).
Related stories by Diane Mapes:
Others used more military terms. I wasn't a cancer patient, I was a warrior fighting a battle, which of course inevitably brought up the question, "Who's winning?"
The odds-makers 
"What are your odds?" was a query I quickly grew to hate, not just because it made me feel like I was a horse someone was thinking about betting on -- or not -- but because I didn't have a good answer for it.
Sure, I'd seen the five-year survival rates forinvasive lobular carcinoma. And I knew that having chemo and radiation improved those rates.
But in the long run, who knows what's going to happen?
All I know is when you ask someone with cancer what their odds are, the first thing they do is start thinking about those odds, and wondering if and when those odd are going to, well, blow up in their face.
Which I don't believe is the intent of the people who ask this question.
So why the obsession with the most hideous story problem in the world?
(If Diane has three tumors in her two breasts and all are surgically removed, but has cancer in one lymph node and then decides to do chemo and radiation, how long will it take her to arrive in Philadelphia via train? Also, is she gonna die or what?)
"When people ask this, they're responding to the terror that comes from viewing life as a random, uncertain existence," psycho-oncologist Mindy Greenstein told me via phone. "So they want to pigeonhole you. They want to get rid of this business of randomness. Because it's terrifying. It means it can happen to them."
Greenstein, who wrote about her own experience with breast cancer in The House on Crash Corner also reminded me that cancer doesn't just cause anxiety for the patient, but for everyone around them.
And when people get anxious, bone-headed things come tumbling out of their mouths (present company included).
"It reminds me a little of when I was pregnant," she told me. "I can't tell you how many miscarriage stories I would hear.  It was almost like a sitcom."
Caring vs. oversharing 
As it happens, I've lived the cancer sitcom, too, which goes a little like this:
"This guy I used to work with had cancer in his prostate and then it went into his testicles and then they found it in his liver and then it went into his lungs and later his kidneys but then he went through chemo and radiation," some well-meaning person will tell me.
"Did the chemo and radiation help?" I'll ask.
"It did at first, but then the cancer came back in his bones and he had to do chemo again."
"But now he's okay?" I'll ask hopefully.
"No, he's dead," they'll tell me. "Take care now!"
Now my gut tells me that these people are passing along stories like this to show me they're paying more attention to cancer, to show me they care. And that's a wonderful thing.
But as someone currently in treatment (not to mention taking a slew of hormone-bending medications), I'd just like to point out that sharing a cancer story that ends badly is right up there with taking a woman who's just had a double mastectomy out to lunch at Hooter's.
Getting it right 
There are other things that get under a breast cancer patient's skin.
The blame placers who pull you aside to ask if you've considered whether your cancer came about because of the birth control pills you took or the vitamin D you didn't. The miracle cure folks who assure you that you didn't need to have surgery or chemo at all. Magnets or shark cartilage or yoga or praying or even just "positive thinking" could have gotten rid of those nasty old tumors.
But for every odds-maker or blame placer or rude stranger who lets loose with a "Nice hair!" or "Sucks to be you!" (stinkbomb comments that have actually been lobbed at some of my breast cancer buddies), there are those who keep you humble, who get it just right.
Like the guy who came up to me the other night at my favorite watering hole and asked how I was doing, told me I looked great, then paused for a second before saying:
"You know, every time I see you, you've got a smile on your face. You never complain. You talk about what you're going through, but you don't complain."
I'd say that's my cue to shut up.
Diane Mapes is a frequent contributor at msnbc.com and TODAY.com. She's also the author of "How to Date in a Post-Dating World." Her website is dianemapes.net.
© 2011 msnbc.com.  Reprints
http://today.msnbc.msn.com/id/45066393/ns/today-today_health/t/breast-cancer-causes-foot-in-mouth-disease-others/#.TqrE55viGU8