pink torrent

Today I’m going to volunteer my time in a local mall sitting at a table for two hours. (Westroads Mall – my shift is from 2-4 if anyone wants to come by!) The Komen people are hosting some kind of event there and have allowed our group, the Community Breast Health Navigator and Cancer Support Program to have a table to introduce ourselves and our services to people. The event will be held from 10am til 7pm I believe, but we’ve only got three of us to cover three two-hour shifts today. We’ll be there from 10-4.
I’m hoping that women and men will stop by and ask questions or share their stories. I’m hoping that I can be living proof that there is hope for people diagnosed with breast cancer. I’m hoping that our name will become well known so that when a woman finds a lump in her breast, she’ll call us for help before going to see a surgeon!

I’m hoping that this one small act on my part will become a droplet which helps form a flooding torrential movement that rescues women from unnecessary fear-based surgeries.

You see, most women when they find a lump, if they get the proper kind of needle biopsy, will find that they don’t have cancer, but a cyst of some sort. If they do find it is cancer, most surgeons won’t tell them that having chemotherapy first to shrink the tumor will allow for a relatively simple outpatient lumpectomy, saving the patient physical trauma, expensive hospital care and their breast.
Having chemo first will allow for two important things to occur. First, it will show the doctor and the patient if the chemo is effective. If the tumor shrinks, they’ll know that it’s working! Then, if the tumor shrinks, that means that the breast won’t be completely disfigured and she can save herself all the discomfort of a mastectomy and subsequent reconstructive surgeries, (not to mention time and money and her own body part!)

Yah, yah, I know, nobody wants chemotherapy. Believe me, I get it. I’ve had it twice! I’ve been bald twice and have lived through both times and now have long lovely hair. What I don’t have is my breasts. Hmmmmm, hair or breasts. Hair that grows back or breasts that don’t.

Let me tell you also, that despite what you may think, reconstructed breasts, no matter how close to the real thing they might get are still not the real thing. They have scars bisecting them. They don’t have the same feeling/sensation ability. They look pretty good under clothes, but that’s about as good as it gets. Don’t fool yourself into thinking that it’ll be the same. It isn’t.

Well, I got off track a bit. There I go again, getting passionate and running with it!

Hope to see you at the mall!

Kris

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Action and Indecision

As I’ve interacted with women who learn they have breast cancer, I’ve noticed two main responses.

Initially, of course, every person responds with shock. Then they go numb. I’ve experienced this myself twice! It’s like the room gets dark and silent and you’re all by yourself, mind racing, and the world has stopped. But once the frightening news begins to sink in, this is where there is such a difference in responses.

Some women go into a frenzy to rid themselves of this hated alien invader. Their only thought is, “Get this out of me now!!!!!” They take immediate action. Moving as quickly as they can, they rely on their family doctor for a referral for a surgeon and that surgeon’s referral for an oncologist and boom, they try to get the problem solved pronto. No questions asked.

There are obvious problems with this approach which have been mentioned in previous posts. Action is good, but uninformed haste may lead to regret. It usually does.

The other way of responding I’ve noticed is the exact opposite. It’s the denial and paralysis response to the shock of learning you have cancer.  It’s the “if I pretend this isn’t happening, then it really isn’t” approach. While there is usually no need to rush, it’s vital to stay engaged. You can’t pretend the problem away. I know it’s hard, but try to separate your overwhelming fear of the unknown from the action points that need to be taken. Yes it’s nearly impossible, but it can be done.

The first action point for both the action oriented person and the fear-paralyzed person is to stop everything! Stop your racing thoughts. Don’t take any action until you’ve done at least two things.

First, call someone you trust. Share your shock and sorrow. The comfort of unburdening with a friend really helps. Knowing you’re not alone is vitally important.

Second, get online to the Komen Foundation and see all the kinds of support they offer. You can find information to answer your questions, find a number to call to talk with someone, and you can find out about doctors in your area. Click on the pink box that says “I’ve been diagnosed with breast cancer” and find information to help you.

Here in Omaha, you can get online to the Breast Health Navigator and Cancer Support Program and at the bottom of the page click on the pink box to request a navigator to help you. The site is very helpful. It’s worth exploring.

Before you choose a doctor or a plan of action, get information. If you just can’t make yourself, have your friend call and talk with one of us. We aren’t going to tell you what doctor to choose, but will help you know how to choose a good doctor. We will help explain terminology that may be difficult to understand. We can even go with you to your doctor’s appointment to help you understand what was discussed.

Just learning you have cancer can be absolutely overwhelming and exhausting both physically and emotionally, then add the doctors appointments and decisions to be made and it can seem impossible. That’s why it’s important to have a good friend and a navigator to help you.

Remember, the right information plus the right doctor means you’ll get the best outcome possible for your particular situation. The main thing is to stay engaged. It is your health; it is your life, and you’re worth it!

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Jill’s Story

My post the other day had some of the facts wrong about “Jill’s” story. She graciously wrote to me and gave me more insight into her story and as I read her email I wept. She has given me permission to post her email here, although I’ve changed the names of her family members. I hope it touches you deeply and inspires you to do everything you can to stay up to date and to be proactive with you health and the health of those you love.

“Couple of facts about my story–but not necessarily necessary to the point of the piece:  my mom died of BC at 36, I was 15 months old. There were 4 of us, 3 girls and one boy.  In 2002, my younger half-sister died of inflammatory BC–which really rocked our worlds because she wasn’t genetically related to our mother AND she had this form of BC we’d never heard of!  She left 4 children–the youngest is a senior this year.  Anyway, it was just after her diagnosis that genetic testing became available (at least to me) and I opted to have it done. I was so sure there was a genetic link somewhere (my mother, her mother, 3 of my aunts)–but except for my mom, all of the others didn’t present until after age 50. When I did genetic testing, my two full-biological sisters were already in menopause and it was believed (or recommended) that they didn’t need genetic testing–if they got cancer is was “bad luck” not “bad genes.”  And when I came back negative for BRCA mutations, it seemed like we’d somehow escaped.

One year after my younger sister died, my oldest sister (Cheryl–just to avoid confusion) was diagnosed with BC. It was very small, etc, and she was living in another state and very BC informed, and her doctors were the best, etc.  So she had a lumpectomy and radiation and went on Tamoxifen.  Five years later, I’ve moved to Nebraska and have started to see Dr. Silva; he’s very interested in my genetics and basically tells me to get rid of my ovaries–they can’t do anything but become cancerous at this point. Cheryl thinks this is ridiculous–none of us has used any meds to assist us through menopause because we know they cause cancer and now I’m electing to plunge into menopause–blah, blah–just the younger sister…Cheryl always knew best, a real take-charge kind of person.

The same week that I had scheduled to have my ovaries removed despite Cheryl’s opinion, she finds out she has ovarian cancer. All of the warning signs were there and she’d JUST been through all those “five year out from BC” doctor appointments and been declared cancer-free!  What the hell?  And THEN they decide to do the genetic testing and sure enough–she’s positive.  Why wasn’t she tested sooner?  If she had been, she should have been advised to get those ovaries out!  She was 60 years old.  It was so senseless.

It took serious convincing for our middle sister (Lisa) to get tested–and even then she didn’t really want to know!  I practically forced in to get her ovaries removed.  I’m the one who has pushed and prodded her to alternate a mammo and MRI yearly.  And to top it off, my brother is BRCA positive, too–and both of his daughters (aged 32 and 25). They, too, have been told to alternate a mammo and MRI yearly and to get their ovaries removed as soon as they’re done with them.  Now we have this new info about mammos for young women!  It makes me sick…I feel like we’ve been blind-sided every time in spite of our diligence.  And as the ONLY one who does not carry the gene mutation, I feel overwhelmed with trying to “help” my family.  And now these other women we’re trying to navigate–who don’t “need” us or even want our information!  It’s breaking my heart–I can’t stand to do it and I can’t stand NOT to; to keep trying, because if there’s even ONE–wouldn’t that be better? Wouldn’t that be one family that doesn’t have to live like this?  With regret and sorrow…

So I don’t think you have to change the details of my story–they don’t really affect the point you’re making…which I totally “feel your pain.”

P.S.  There’s a fabulous book called Motherless Daughters you might want to get.  It really helped me!

J.

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September Sorrow

Yesterday, 9/11/12, was a day of remembrance for our nation. Eleven years ago our country experienced our most egregious attack and thousands of people mourned the loss of loved ones, stolen from their lives forever. Our losses and their effects have forever changed our lives.

September is annually a time of grief for me for another reason. It was 19 years ago this month that my mother was taken from me, my family, my children and our lives, forever. The cost of this loss of her precious life is incalculable, and try though I may, I will never get beyond the heartache of life lived without her.

Monday night, I attended a class of a group of women who have met together monthly for a year, learning and preparing to help navigate women through the maze of information and procedures involved with breast health and breast cancer treatment. The program is called the Community Breast Health Navigator and Cancer Support Program.

We were sharing stories of women we’ve spoken with, advocated, navigated, and encouraged. Sadly, nine times out of 10 it seems, regardless of the information given them, these women opt for a mastectomy even though in most cases the much less invasive lumpectomy would take care of things. We were discussing two causes for their poor decisions: Fear and Ignorance. Ignorance not only on their part, but quite often on the part of the doctors these women choose.

These are topics for future discussion, but what struck me last night was the heart ache that we all carry, but seldom reveal.

I was chatting with a friend I was sitting next to, I’ll call her Sue, and casually asked her about her mother. Sue shared how her mother had fought and won a battle with esophageal cancer. Stupefyingly, in the myriad of doctors appointments this woman had, no doctor ever checked to see if she’d had a mammogram. So at the age of 69, sixty-nine, she got her first mammogram. And wouldn’t you know it, there was a lump which later she learned was breast cancer. In less than a year, Sue’s mother had died. This is a tragedy of negligence in medical care – slipping between the cracks. A hero who fights and wins an impossible nearly incurable disease, falls prey to a very curable one afterwards. It was September when she died.

I asked my friend if she feels the grief every September. She said she didn’t think so, but that every time she heard the National Anthem sung, she’d lose it. Her mother had a beautiful singing voice, and was always the one asked to sing the anthem at various events. As my friend told me this, her eyes welled up with tears and she said maybe it effects her more than she realized. September is a difficult month for her, and hearing a song sung that used to bring her delight, now brings only sorrow and the reminder of her loss. Untimely, wrong, death by oversight.

Another friend was standing across the table from us. She said September is a very difficult month for her, and it showed in her face. She told us that her mother had died of breast cancer at the age of 39. Unbelievable. That’d mean my friend, let’s call her Jill, was probably in middle school. There were 4 sisters, all left without a mother. Sadly, that’s not the whole story. These girls grew up motherless, yes, then one died of cancer, young. This prompted Jill to find an excellent doctor who encouraged her to get genetic testing. All the sisters were tested. Jill was the only one who tested negative for the gene. Unfortunately, Jill’s sister didn’t have as good a doctor. He wasn’t as aggressive or quick to respond. Her sister listened to his advice and died of breast cancer within the year.

Jill told us how she’d teach Monday through Friday then catch a plane to spend each weekend in September caring for her dying sister; her eyes welled with tears, but she held them in check. This is the second September since the death of that sister and she grieves her colossal loss. She’s angry, and rightly so. She’s angry at the disease, and she’s angry at the lackadaisical ineptitude of some doctors, particularly the one treating her sister. With hardened face and red-rimmed eyes she swore under her breath as she walked away from us. “Damn waste.”

My mother died at the age of sixty. She’d gone to the doctor several times over the course of a year complaining of a ‘fullness’ in her abdomen. Her doctor told her to lose some weight. He told her she was imagining it. He finally relented and ordered a test – by that time the tumor on her ovary was the size of a grapefruit. During surgery, they accidentally broke it open, spilling the toxic waste throughout her entire abdomen. They ‘did their best to get it out’ and sewed her up. Rounds of chemo and hours of pleading with God for her life, she made it through – for almost five years. Another situation with that doctor finally motivated my mother to find another doctor who mis-interpreted her scan results. She picked them up and took them to a third doctor who gave her the news she’d suspected. Yes the cancer was back, and it was bad. Too little, too late and a husband and five children and 8 grandchildren were left without the warmth and love of the only wife, mother and that special one-of-a-kind grandmother they’d ever have.

My son had just turned 5 and my daughter 1 when we attended my mother’s funeral.

I think about the twinkle in her eye they’ll never see again and the warmth of her soft skin that they’ll never feel and I ache.

If all the stories of bad medical care were recounted, we’d have a murderous mob rioting at hospitals around the country. But most of us suffer our sorrows silently, doing nothing to promote change.

Don’t get me wrong. I’m extremely thankful for medical professionals. I’m indebted to a great many myself. If only every doctor was like the excellent ones I’ve found throughout my own cancer journey. Kind, compassionate, extremely intelligent, full of integrity. It isn’t these doctors I have a problem with. It’s the ones who are proud, ‘comfortable’ underachievers, willing to continue practicing using an outdated formulaic approach. The status quo is their friend.

I have met three doctors in my 50 years that I would nominate as “Best” doctors. Dr. Edibaldo Silva, Dr. Nagi Ayoub, and Dr. Jimmy Khandalavala. They don’t have an attitude of arrogance or complacency. They are learners. (To be a learner, one must be humble, because wanting to learn automatically expresses the acknowledgment that they know they don’t know everything there is to know. I’ve met some who actually believe they do know it all and I should feel lucky to be in their presence!) Best doctors are always reading, studying, keeping current on the latest studies and procedures, pioneering new methods and treatments. That’s the reason they get amazing results. These doctors are continually striving to improve, to hone their skills, perfect their practice and challenge the status quo. If only all doctors could be so excellent.

That’s why the medical profession is called a practice. It’s a place where they are learning and growing and practice is supposed to lead us toward perfection. Sadly, many doctors, once they get their credentials rest on their laurels. The women who go to them for treatment don’t receive the best care and consequently don’t experience the best outcomes either.

That’s why my friend ‘Jill’ is angry. That’s why Sue is sorrowful. That’s why we are a part of this fledgling group trying to advocate for women and bring about positive change.

We want to educate women before they find a lump. Before they’ve made up their minds (because of fear) to ‘just get them cut off and be done with it’. Our country has a campaign encouraging women to regularly examine their breasts and get a mammogram, but what is a woman to do once she finds a lump? Subject herself to an unknowledgeable or unscrupulous surgeon who will be happy to remove those problem breasts?

There are new procedures. New options! Mastectomies aren’t even necessary most of the time any more!!

I have said it before, and I will say it until I have no more breath. THE RIGHT INFORMATION + THE RIGHT DOCTORS = THE BEST OUTCOME!

Please, tell the women you love, think before you cut. Become informed, ask questions, challenge your doctor, and get a second opinion, or a third if necessary! It’s their life at stake. And it’s your future, spent enjoying the women in your life, or grieving their loss.

And stay tuned in here as we will bring articles and information that will empower you and those you know to make the best decisions and receive the best care possible.

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2 Important Points

I just spoke with the friend of a woman who found out this morning that she has breast cancer. She doesn’t yet know what stage it is, whether or not it is estrogen receptive or any other vital details. But even if she’d been told, she probably wouldn’t remember anything except those horrible three words: YOU HAVE CANCER.

Thankfully, her friend is a two-time breast cancer survivor, like myself. Let’s call the friend Marcy. Wisely, Marcy knows that things change rapidly in the medical arena and that she shouldn’t rely on her experience as the gold standard to judge medical care. That’s why she called the Community Breast Health Navigator and Cancer Support Program to get in touch with someone to help her find the most current information.

Marcy will be going to the surgeon with her friend tomorrow morning. (That seems to be the way it is. Day one, you learn you have cancer; usually over the phone. Day two, you meet with the surgeon and come up with a plan. The plan should really be made in community with other specialists, namely, the oncologist, but sadly, that doesn’t always happen.)

By the way, don’t ever let your friend go to the doctor by herself. It’s crucial to have a friend or family member go along with her to listen, write down the information shared and even help ask questions. It’s amazing how much information you can hear and not comprehend, or think you understand but then by the time you get home it’s all jumbled and doesn’t make any sense or you’ve forgotten most of it. Marcy will go with her friend and take notes as well as ask for clarification or a simplified explanation if her friend’s eyes glaze over.

As I spoke with Marcy today, I reminded her of two main points to stress to her friend. They are wise words for any one facing cancer, or any medical need for that matter.

Main Point #1 – Never be in a hurry. Other than immediate life and death situations, even the person with a very aggressive tumor has a minimum of a few days or even weeks to make their decision. If a surgeon tells you that you need to get the tumor out immediately (as in that very day or the next), tell him thank you and leave and never go back. It is vital that you know you have options and that cutting is not always the right choice. There are so many variables involved in cancer treatment, that despite your understandable knee-jerk reaction to “get this cancer out of me,” remind yourself that it’s better to take a deep breath and find out your options. The more information you have, the better decisions you can make. This leads us to the next point!

Main Point #2 – Always get a second opinion. You wouldn’t buy a house on the spot without looking at other houses. (Or making sure to have it inspected.) You wouldn’t send your child to a daycare without checking out several and seeing how they function. This is your life and health we’re talking about!  Just because the person has the abbreviation ‘Dr.’ in front of their name doesn’t mean they know everything. Not every doctor is up to date on the newest treatments and procedures. Not every doctor has integrity or wisdom or knowledge or skill. Find one by referral or use Google to your advantage.  Read up on several doctors and read the ratings by other patients.

Make that appointment for a second opinion and without telling doctor number two what doctor number one recommends, see what doctor number 2 has to say. See if what he recommends is the same as doc number one. If not, get a third opinion. Yep, that’s right! Don’t worry about offending the doctor. It’s your life you’re talking about! Getting a second or third opinion is always wise, and if he’s a great doctor, he’ll be the one telling you to get a second opinion! Great docs are confident enough in their grasp of your situation to urge you to get it confirmed. If he gets upset that you want to consult another doctor, then that should tell you what you need to know! Leave him and find someone else!

Well, I’m anticipating a call from Marcy in a day or two. I’m hoping for the best possible news for her friend.

I leave you with this motto which sums it up:

The right information + the right doctors = the best possible outcome.

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Olympic Gymnast Shannon Miller

Hi there! Long time no read! I apologize for my long silence but want you to know I’m newly inspired and ready to roll! Be looking for posts from the women in the Community Breast Health Navigator and Cancer Support Program I’ve been a part of over the last year, as well as information that will help you or the women you know make the right health decisions. Good, current information plus the right doctors can mean the difference between dying, surviving or thriving! More on that in later posts!

Recently I received this email from a reader. I appreciated her taking the time to share this link to an article with me. I thought you’d enjoy reading the article about Shannon Miller’s victory over ovarian cancer as well. Feel free to pass it along!

. . . I came across your blog and . . . I was wondering if you would help me to spread the word about the silent killer. The Mesothelioma Cancer Alliance did an interview with former Olympic gymnast, Shannon Miller, on her recent battle with ovarian cancer. With the Olympics underway, I think this is the perfect opportunity to shed some light and increase awareness of this disease. I was wondering if you’d be willing to post a link to the interview:http://www.mesothelioma.com/blog/authors/staff/from-olympic-gold-to-ovarian-cancer-our-interview-with-former-us-gymnast-shannon-miller.htm

Let me know if you decide to post it! I think we can really shed some light on ovarian cancer with this being so current!

Thanks,
Heather

Thank you, Heather, for sharing this article. Hopefully it will help raise more awareness, funding, and a cure!

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a doctor’s insight

My last post received a response from a doctor that was kind and insightful. I thought I’d copy it here in case anyone doesn’t read other responses. I don’t want you to miss his input! Here is his excellent advice:

“As a doc, I am sorry to hear about your truly shocking experience. It definitely sounds horrible. In reading it, I had a few ideas to help others find good docs as well.
1. I agree if a doc ever says, “I do not need your business” You can be sure he has not put your needs 1st, and getting out of there is a good idea.
2. All doctors, but maybe surgeons more, have issues – too much life and death stuff on their backs – The good ones have found a way to deal with those stresses before they come to the patient room…. If your doc consistently appears stressed or angry, it might suggest he has not figured out his issues.
3. I recommend to all patients that they become experts in their illness (particularly chronic or serious illnesses) No one is as motivated as yourself in getting good care as yourself, and the information is widely available. While some of the jargon is hard, the “conclusions” at the end of most medical journals is pretty straightforward. There are also pretty good websites out there. I love it when a patient informs me of late breaking news on their meds.
4. Even the best docs have bad days, I know I am pretty short with patients if I had someone die that morning… But consistent poor communication skills, defensiveness, and lack of empathy should be red flags that its time to find another.

Warmly,
Josh”

Heartfelt thanks to Dr. Phillips for his gracious response and wisdom!

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biopsy experiences

I want to begin by expressing my gratitude for many amazing medical professionals who have helped me immensely through my two-time battle with breast cancer.  My goal in writing about some of my unfortunate and unnecessarily painful experiences is to save you from going through something similar.  With a little knowledge and the advocacy of someone who knows about cancer and it’s treatment I feel your experience, although not pleasant because of what cancer is, can be less intimidating and painful.

This was my experience. I don’t share it to badmouth anyone or to elicit sympathy, but to illustrate the importance of being informed and therefore well-equipped to face cancer head-on.

Biopsy experience #1:

In September 1999 I found a lump in my left breast. I was freaking out inside because the thought of cancer terrified me. My grandmother died of breast cancer and my mother of ovarian cancer. Rather than panic, I decided to wait until my regular ob/gyn appointment which was already scheduled for October. I didn’t tell my doctor, figuring she’d find the lump during the exam. She didn’t notice it, so I pointed it out. She said it probably was no big deal and to take Vitamin E pills daily for a month and to come back.

I dutifully followed her advice and returned a month later, with the lump. She then referred me to a surgeon for a needle biopsy. He wasn’t able to draw any fluid out, so he scheduled me for a surgical biopsy. I asked about doing the surgery in such a way that there wouldn’t be an unsightly scar, and he said he couldn’t. (I should have gotten a second opinion before scheduling the biopsy.) After the results came back I learned I had ductal carcinoma in situ (cancer), as well as a significant scar.

I selected an oncologist and at my first appointment she recommended I switch to the surgeon with whom she worked. When I met with him, he was upset that Surgeon #1 left a scar and an indentation in my breast. He said he could have done the surgery where no scar would have shown and I would have been pleased with the results. As you might have guessed I felt out of control at this point and disappointed. Surgeon #2, also scheduled me for a sentinel node biopsy, a procedure where they inject dye into the area of the cancer and follow it to the lymph nodes. (This was one of the tests I had asked Surgeon #1 about and he said no one in town was doing them and it was “still experimental,” validating the importance of getting a second opinion.) Surgeon #2 performed the SNB on me, a procedure he told me he’d been doing for years. (This was my introduction to the varied opinions of medical professionals.) Once injected, the first node the dye enters is the sentinel node, and the ones that it feeds are secondary. The dye helps the doctor locate the nodes. He then removes the sentinel node and just a few of the others to be tested. If they are cancer-free, then the patient is spared the discomfort and troublesome issues that come with having all their lymph nodes removed. Thankfully, my sentinel node was ‘clean,’ so I was able to keep my remaining lymph nodes.

Biopsy experience #2:

Five years later, I found a large lump in my right breast. I’d been having mammograms every six months since my first battle with breast cancer. It appeared quickly and was aggressive. I made an appointment with Surgeon #2, since my oncologist was out-of-town.

By now I’d learned that doctors weren’t in fact infallible, a disappointment for sure, but I was still a very loyal and trusting person.

In my first appointment (of the second cancer) with Surgeon #2, he brought up ‘Mary’ (name changed to protect her identity), a woman I had referred to him several months earlier. He asked about her and I said I hadn’t heard anything. He informed me that she had decided to ‘go to Tulsa’ and had chosen a different course of treatment. I got the impression that ‘Mary’ choosing a different doctor really bothered him. Then he did a needle biopsy on me, without any anesthesia. (FYI, It’s never a good idea to have an angry doctor do any procedure on you.)

A week or so later at my second appointment with Surgeon #2, I walked in the room and the nurse said to undress from the waist up. I said there must be a mistake, that I’d already had the biopsy and the doctor examined me at that time. She basically said, do it anyway, and left. I was really irritated and my husband tried to calm my nerves. I looked over to the counter and noticed some scary-looking medical implements laying there. I proceeded to undress and put on the gown which was tiny. What is up with one-size-fits-all hospital gowns? Isn’t it humiliating enough that you have to undress and have your breast probed and poked, but you can’t even keep yourself covered?!  I rummaged through the drawers under the examination table to find something bigger. No luck. (FYI, when you’re facing cancer and numerous office/hospital visits, even minor things can become enormous irritants. Emotions become strained and fragile.)

I sat on the cold, exam table clutching my too-small gown and Nurse Nancy (not her real name) and Surgeon #2 walked in. He sat down and told us the pathologists tested the tissue from the needle biopsy but hadn’t labeled it cancer. They said only that the cells ‘looked suspicious.’ He said, “They won’t say it’s cancer, but I’ll tell you right now, I’ve seen this hundreds of times and it’s cancer.” We talked and I asked if there was any possible way to avoid chemotherapy. He got pretty intense and said loudly, something like, “You are still a young woman! What is your deal with not wanting to go through chemo again?” (Um, probably because I’d gone through it already!) Then he got angry and said, “You’ve got a look in your eye! If you think you’re going to run down to Tulsa and have some doctor tell you what you want to hear, give you a pill or some herbs . . . if a pill could help, I’d have given it to you.” Then, shockingly, he said something like this: “You know, I don’t need your business. I have more than enough, but if you think you’re gonna run down there. . . .”  I couldn’t believe what I was hearing! It was like he was taking his frustration over ‘Mary’ and his bruised ego out on me! (That should have been my exit cue, but foolishly I stayed.) Incidentally, that was the first time it ever occurred to me that a doctor saw me as income. Duh, was I ever naïve! I thought the reason he became a doctor was to help people! Sadly, I believe I was mistaken. Thankfully, not all doctors behave so badly.

Then Surgeon #2 stood up and told me he needed to do a core biopsy so the pathologists could have more information to work with. I’d never heard of a core biopsy, and he didn’t explain it.

Les asked if he would numb me first. He said he would, but that it couldn’t numb all the way into the lump. I don’t think he gave me enough local anesthesia because I felt everything. (Again, if I had to do it over again, even at the risk of him blowing up in a rage, I’d ask him to numb me more.)

What happened next was sheer torture. I look back in disbelief that this happened to me. Watching Will Tippin on Alias be tortured the night before was eerily premonitory of this moment.

He cut me with a scalpel and inserted a long metal tube into my right breast. Then he slid some kind of long needle down inside the tube and pulled a trigger which grabbed and pulled my flesh. It hurt like hell. I was shocked to feel such incredible, searing, burning pain, but I focused on the relief that it was over. It wasn’t. Surgeon #2 went on to do that three more times! Each time it hurt worse – like yanking all the way down to my abdomen. I had tears streaming out the corners of my eyes, running down my neck, the back of my neck and hair wet in a pool of tears. I gripped Nurse Nancy’s hand with my left hand and the table with my right. My husband was standing at my feet, looking on in horror, unable to help me. I had to shake my left leg vigorously in an attempt to distract myself from the excruciating pain.

Surgeon #2 dropped the bloodied metal implements into the sink and quickly exited the room without saying anything. Nurse Nancy followed. Les and I were left in the room, blood dripping down my breast, onto the table. My teeth began to chatter, my body shook uncontrollably, as I slipped into shock. I was so cold. No blanket. No ‘sorry I had to hurt you like that.’ No ‘good-bye’ or ‘I’ll be right back.’ Only a little band-aid that didn’t stop the bleeding.

If I’d known what they would be doing, I could have taken something in advance to help offset the pain. They knew and should have told me.

After waiting for a long time, Les went out in the hall to ask for some assistance. A pain pill perhaps? He washed the blood from me with a few paper towels he found near the sink holding the bloody instruments. My dear husband helped me dress and Nurse Nancy came back with a pain pill and a prescription. She seemed surprised that I was shaking uncontrollably, but showed no compassion, only icy indifference.

The next day I called my oncologist to tell her about this experience and she didn’t “understand what the problem was.” I finally realized it was time to look for a new team.

(I had nightmares about this for over a year afterward. It felt brutal and violating; indeed, it was the most barbaric experience I’ve ever endured. There is no excuse for medical treatment like this anywhere. Ever.)

We put the word out that we were looking for a new surgeon and oncologist. Dr. Silva came highly recommended and agreeably fit me right in to see him. His nurse, Sue, was kind and friendly. (Ever since, I’ve referred to her as, “Sue, the nurse that I love,” because of her ready smile and good-natured approach.)

Examining me, Dr. Silva was shocked at what he saw. I had such terrible bruising and swelling after the core biopsies that there was no way to distinguish the tumor from the knotty contusion. He was swift in ordering other tests to learn as much as possible and determine a course of action.

When I went in for an ultrasound, the doctor performing the ultrasound asked me several questions, one of which was, “Did [Surgeon #2] use an ultrasound to locate the tumor before doing the core biopsy? I said no. “An x-ray?” No. She was appalled! (Maybe he was punishing me for ‘Mary’s’ resolve to go elsewhere? All I can say is, ‘Mary’ definitely made the right decision!)

I hope that my horrific experience was one in ten million. I would never wish it on anyone! Please, allow my misfortune to motivate you to find a doctor, as I finally did, who shows genuine concern, is patient with your questions and is open to you seeking a second or even a third opinion.

I’ll end this post with a few suggestions, lessons I learned in my process:

~ A second opinion is always wise. Sometimes a third opinion is necessary.

~ Never go through with any procedure if you are uncomfortable or unsure about it, or

if you are not fully satisfied that all of your questions have been answered. It’s vital

that you understand what the doctor is going to do and why.

~ If your doctor doesn’t want to explain himself/herself, or doesn’t encourage you when

you mention getting a second opinion, then I believe you you need to find another

doctor.

~ There is a tendency in many of us to attribute almost God-like characteristics to our

doctors, especially if they have helped us through past illnesses. It’s important to be

courageous, (after all this is your body,) and realize you have a role to play in your

own process. Even the best doctors can’t know absolutely everything.

Posted in advice, Breast Cancer, Kris's story | Tagged , , , , , | 7 Comments

Killer Cancer Comments (and bluntly honest advice)

When I joined that unfortunate group, people with cancer, I began to encounter folks who had plenty to say about it. All of a sudden people become uninhibited. Everyone had a cancer story, and they wanted to tell it to me! I think it’s similar to when you’re pregnant and everyone has their birthing experience to share and they feel the right to pat your tummy too. It’s really quite odd.

I don’t know why people who had never spoken with me before, suddenly acquired the freedom. Maybe they thought their words would encourage me, but often they had the opposite effect.

I’ve had every sort of comment spoken to me. One woman told me it was my deodorant that caused breast cancer. She actually sent me some Tom’s deodorant all the way from California!

Several ‘thoughtful’ people let me know that it was some fault with my diet, and wouldn’t you know, they just happened to be selling the very nutrient of which I was deficient! How nifty! What a coincidence! (Did I mention I never asked them for any advice?)

Unsolicited advice is never good, especially with people facing cancer. (I realize that here I am giving unsolicited advice! But you clicked on my blog! =)

A lady at church came up one Sunday and told me, “Everyone I know gets cancer and dies. Everyone who has cancer that I pray for dies!”  My bubble was saying, if this is your track record, don’t pray for me, don’t touch me, don’t talk to me! I was too timid and didn’t want to be rude but I wanted to say, “What exactly is your point?!” I finally had to take her hands off of me, to literally pull away from her and say “Well, thank you for that,” as I walked away. (No, I don’t know why she had her hands on me.)

Similarly, we got a phone call from a family member, “We’ve really been praying for Kris. You know, my good friend’s wife was going through this and we really prayed for her. She just died. But I want you to know we’ll keep praying for Kris . . . .” For real! For Real!

Some of the best advice I learned from my mother decades ago especially applies here:  “If you don’t have anything positive to say, then don’t say anything at all.”

One cold and windy afternoon I was at Sam’s Club pumping gas into my car. I noticed a man looking at me. I looked away. (Sometimes I felt like a giant pink C –  circa Nathaniel Hawthorne’s Scarlet Letter – was sewn on my top for all to see. I usually tried to avoid most eye contact because I was living with my own little life-sentence.) Seeing movement in my periphery, I glanced up and noticed the man was coming towards me. Since I didn’t recognize him, I figured he was coming to the pump opposite me. He walked up to me, stuck out his hand and introduced himself. Then he asked how my tests came out! Now, I know he meant well, but he didn’t know me personally, and did he really think I wanted to discuss my private, personal test results with him?  It felt very nonchalant, like “how ‘bout those Huskers!” I know he meant well, but it was horrible for me. I got in the car and cried.

The better thing to have done would have been to offer up a quiet prayer on my behalf without even bringing it to my attention, or smile and wave and leave it at that.

Another woman tried to ‘comfort’ my husband when she learned I’d had a double mastectomy, “At least she didn’t lose anything she needed,” she said. What?! What is that supposed to mean? I’m still shaking my head in disbelief! I have no words for that stupidity. Seriously.

Whether it was too much dairy in my diet or not enough vitamins, or there was some deep dark sin for which God was punishing me, I think I’ve just about heard it all.

Friends have told me they feel awkward when they’re around someone who has cancer. All of a sudden they don’t know what to say. They panic. They don’t want to say the wrong thing. They feel like there is a giant in the room and either they pretend it’s not there, or they say something, and it’s usually stupid. If this is how you feel, here are some thoughts to help you:

Remember they are still your friend. That hasn’t changed. The only thing different is that they are facing the toughest days of their life. They will need your patience, empathy (not pity), understanding and help. The best thing to do is to tell them privately, that you ache for them, that you’re praying (if you are) and that you’re just so, so sorry. If you aren’t that close, but you want them to know you care, send a card with those sentiments. If you feel and act awkward, they will feel like they have to comfort you. That’s not the outcome you want.

Resist the temptation to speculate. Believe me, the person facing cancer has done plenty of that already! You can bet they will discuss those things with their doctor. Trying to find a ‘reason’ may help you feel better, but it actually places blame on them. Like the people I knew who mentioned using deodorant or eating dairy, what those people communicated was, “You caused your cancer.”  That’s terrible to do to someone. Sometimes there are no answers. Period. Leave it at that.

If you’re not sure what to say, then keep quiet. You don’t have to say anything at all. You’re not obligated to keep a conversation going. You don’t have to fill empty air. Quiet is really ok. Sometimes just being present is the best thing.

I received a letter from a woman when I learned I had cancer that I have treasured ever since. It was exactly the right thing to encourage me! In her card, this woman wrote that she’d heard I’d received some troubling news. She shared the story of her mother who was diagnosed with breast cancer as a 26-year-old, and she wanted me to know that her mother was now in her 80’s! She’d never gotten cancer again and she was living a full and healthy life! That was a story I needed to hear! That was a story I held onto! I still do! If you have a story that end’s well, then by all means, share it! Good news brings hope and hope promotes healing!

Five years later, when I learned I had a different kind of breast cancer, my friend Anne called sobbing. She said she’d just heard and was so sad, so sorry and she wanted me to know. We held our phones to our ears and cried together. Her tears were a gift.

Another friend called and said, “Kris, I am so sorry. I don’t know what else to say. I’m just so sorry.” Their words were medicine to me.

Often, during the months of my cancer treatment, I wouldn’t even answer my phone. I was home, but I was just too exhausted to have a conversation with someone, anyone. If this happens to you, don’t take it personally, don’t get irritated if you can’t make the connect even though you’ve tried several times. The person has cancer. They are sick. They don’t feel well. Their energy is sapped and their emotions are spent. “They got nuthin.” If you’re tempted to be offended, remind yourself, it isn’t about you! It’s about them! They feel like crap. Remind yourself of that. Take a deep breath, exhale slowly and choose patience. Give lots of grace, as much as you’d want to receive when you’re at your worst.

In closing, the best advice I can share is the simple phrase we all learn at a young age: think before you speak. Consider how it might make you feel to have those words spoken to you. Then, edit them or just smile and say nothing.

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Unnecessary Breast Removal

Welcome back to The Breast Blog Ever, where Dr. Silva and I present relevant topics about breast cancer diagnosis, treatment and anything breast cancer related. My name is Kris Beauchamp. I’m a two-time breast cancer survivor. During my cancer journey, I found Dr. Silva, who is one of the most intelligent, informed, skilled yet humble and kind doctors I’ve ever met (and I’ve met a lot, believe me!) It’s been six and a half years since the second diagnosis, and I’m happy to say that with all the factors thrown in, I’ve got less than a 3% chance of recurrence and I’m regularly under his watchful care.

Dr. Silva and I have a genuine desire to help people who are facing breast cancer.  We want you to be informed so that you can make the best decisions possible and achieve the best outcome. We had discussed the possibility of collaborating on a blog for women, and we are delighted to be up and running! This is his first article. He has written it in ‘lay terminology’ but it may still be a bit mind-boggling, so I’ve provided a list of terms as well as a brief summary and closing comments.

Please remember, we are not giving you medical advice, just providing information for you to become more informed. We want you to be equipped to find and receive the best medical care possible and to ask good questions to your doctors so that you may make the most informed decisions for your own health and well-being.

We welcome your questions or comments. Now here is Dr. Silva:

Why are women with a single early breast cancer having their opposite normal breast removed also?

In 1991, a National Cancer Institute Consensus Conference endorsed breast conserving surgery (BCS), defined as lumpectomy with post-operative whole breast irradiation, over mastectomy as the preferred treatment of early stage breast cancer (ESBC). In 2002, with more than 25 years of follow-up, renewed examination of all the studies which made this recommendation possible revealed the same results. Over the years this led to a decrease in mastectomy rates. By 2003 BCS rates in the USA approached 69%. Recent reports have demonstrated that in the US this trend is decreasing despite the fact that breast cancers in the US are increasingly smaller at diagnosis. More alarmingly, many women who have no established genetic predisposition or increased risk for developing a cancer of the opposite normal breast are opting to have it removed also.

Among the reasons documented for this tendency is the introduction of MRI in breast diagnostics. Its use coupled with incomplete assessment by clinicians of any real genetic risk has led fearful and uninformed patients with ESBC to unnecessary preventive removal of the opposite normal breast (CPM). Many patients, young and old, opt for CPM based on a questionable MRI finding without a biopsy to prove it is cancer. The standard of care requires that no decision be made about such a finding without a biopsy proven diagnosis of cancer.  Multiple distressing reports have shown an increase in CPM from 4.2% in 1998 to 11% in 2003. In one report 8.3% of these women were age 60 or older at the time of CPM. In these women’s normal expected lifetime, the odds of developing a cancer in the other breast are near zero. Among women age 18-49, where a larger proportion could be at increased genetic risk, 25% opted to have their other breast removed. These reports also show that the CPM rate increased with MRI use. Often, the reason for CPM was physician’s advice regarding the risk of cancer in the normal breast. This negligible risk has been documented since the days of the radical mastectomy and demonstrates how inadequate informed consent can be very damaging. This risk is well established as 3% at 5 years. Furthermore, it is decreased by 50% in patients using tomoxifen and 20% in those treated with chemotherapy. These are frequently used to treat their initial breast cancer. Clearly, preventive removal of the normal breast can have no impact on the survival of a patient in whom the stage of her known cancer is the primary determinant of survival.  At present, there is no question that increasing utilization of MRI by physicians not familiar with all of its limitations coupled with patient’s inordinate fear and inadequate risk assessment lead to very difficult and hurried conversations.  Many specialized cancer surgeons find that all this information is hard to convey at a single visit as it may require discussion about reliable alternative surveillance strategies, prevention strategies, accurate genetic risk assessment and its limitations without resorting to removal of a normal breast. The explosion in our knowledge about breast cancer, the selective testing of individuals at genetic risk and the prudent use of MRI requires the use of evidence based algorithms within specialized multidisciplinary breast centers to care for what is the complicated problem of breast cancer.

Edibaldo Silva, MD, PhD, FACS

Terms:

  • LUMPECTOMY = surgery to remove the lump and surrounding tissue
  • WHOLE BREAST IRRADIATION = radiating the entire breast area
  • MASTECTOMY = surgically removing the entire breast, surrounding tissue, and some lymph nodes
  • RADICAL MASTECTOMY = a mastectomy where underlying muscle is removed as well (rarely done any more because the cancer is dealt with before it gets to the muscle)
  • ESBC = early stage breast cancer
  • BCS = breast conserving surgery
  • CPM = unnecessary preventive removal of opposite breast

Summary: After 25 years and a follow-up of initial studies, a National Cancer Institute Consensus Conference drew the same conclusions: lumpectomy followed by whole breast irradiation is the preferred treatment for ESBC. Yet, in only 5 years, the women opting for unnecessary breast removal jumped from 4.2% to 11%! It nearly tripled!

Why has the number of women choosing breast conservation decreased? Why are they choosing to have both breasts removed even though it isn’t necessary?

Some possible reasons:

  • having tests, specifically breast MRI, done but not having the results evaluated by someone specially skilled to do so
  • only receiving partial information
  • fear
  • patients rush to make a decision without even having a biopsy first to see if it is cancer

Kris’s closing comments:

When facing cancer, there are so many variables to consider. Just one visit to the doctor doesn’t provide enough time to unpack them all. Too often though, a decision to remove both breasts is made without all the facts.  (I remember the knee-jerk reaction I felt of “just get it out of me!” Thankfully, my doctors responded that I didn’t need to rush, but had time to make an informed decision. They were right! Even though it’s difficult to wait, an informed decision is always better than a hasty one.)

A person facing breast cancer needs to have a qualified (experienced, knowledgeable and skilled) team of doctors helping them make the best decisions for their particular situation. Their doctors will want to discuss surveillance strategies, prevention tactics, genetic risk assessment, as well as treatment options and timetables. The team will need to discuss the best course of action for you before bringing to you their recommendations. It’s excruciatingly difficult to wait, but it’s worth it.

Fear is never a good teacher. It is an even worse doctor. If you or a friend or family member are facing breast cancer, Dr. Silva and I urge you to go to a specialized multidisciplinary breast center. (And for what it’s worth, from my perspective, a teaching hospital is going to be the most ‘cutting edge’ – pardon the pun – they’ll have the most up-to-date information as well as doctors who are leading the way.) Remember, you can win a battle that you are well-equipped to fight!


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