Breast Investigators

I might be in the minority, but I am okay with Facebook’s decision to censor The Scar Project’s photos of topless women exposing the scars they’ve accumulated in their battles with breast cancer.  Here’s why:

1) Just because I have mastectomy scars and reconstructed breasts does not mean I want to see the scars and breasts of other women. I want the choice and can go The Scar Project’s website if I choose to view the photos;

2)  I’m a business owner serving women suffering from drastic appearance changes.  I understand that while my customers have some things in common, they are unique individuals.  I feel the need to be sensitive to ALL of them.  As a business owner, I understand why Facebook would have policies designed to minimize the number of users offended by Facebook content;

3)  I’m asking myself, should Facebook be expected to promote causes?

I am a supporter of The Scar Project.  I applaud David Jay’s work, his ability to capture our pain, and his willingness to use his talents to tell our story through amazing photographs.  I am aware that many, many, many women find healing and acceptance through his photos, but I am not one of them.  They make me uncomfortable and I suspect that there are other women who like me, have surrendered their breasts and gained scars in a determined effort to beat or cheat cancer, and who are not looking for photographic reminders.  We’re all different.  I applaud the project and I agree with Facebook’s policy to censor the photos and give we Facebook user’s the choice to see or not see photos of other women’s breasts, breastless chests, and scars.

Are you familiar with The Scar Project?  How do you feel about Facebook policies to censor The Scar Project’s photos on their Facebook page?

Susan Beausang, 4women.com

The IBC Network Foundation Funds First Research Project

Lori is a wife and mother as well as a physician.   Her second child was still a babe in arms when she was diagnosed with Inflammatory Breast Cancer, IBC.  Diagnosed only two years ago, Lori currently is a Stage IV IBC patient and is dealing with pleural effusion.  Lori truly is the face of this disease and is one of the reasons The IBC Network Foundation was formed, to educate and fund research in the fight against IBC.   Inflammatory Breast Cancer is viewed as rare, but is the most fatal of the breast cancers, does not have a lump and can strike women in younger years often pre-mammogram suggested age screening.

The IBC Network Foundation will issue funding April 30^th at 10:30 at the Mays Clinic, in Houston Texas.  All are welcome to attend.  The research is under the direction of Dr. Woodward.  Dr. Woodward is an Associate Professor and the Director of Clinical Breast Radiation Research in Department of Radiation Oncology at The University of Texas M. D. Anderson Cancer Center (MDACC). She is a physician-scientist specializing in clinical breast radiation oncology with a lab focused on breast cancer stem cell biology and radiobiology.  We are grateful to the community for their support and as well as Dr. Naoto Ueno, executive director of the Morgan Welch Inflammatory Breast Cancer and all of his staff for their continued encouragement in our mission.   For more info: please see www.theibcnetwork.org or call 281-797-5578

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On Good Friday 2008 four years ago, I was at MD Anderson Hospital in Houston, Texas receiving my  pre-operation  instructions for a double mastectomy as the next step in my treatment for Inflammatory Breast Cancer, (IBC).  On Easter weekend we gathered together for the usual traditions of our family, egg hunts, church services and a family meal.  With one odd event tossed into the mix.  One of my daughters rented what she called the ultimate girl power movie and we watched “Kill Bill”, as a silly, stress relieving way of facing what the immediate future held in store.  Easter Monday I was at the hospital bright and early to have surgery.  I think I am the only breast cancer patient I know who practically skipped into the surgical department. I was so happy to be ridding my body of the breast that had gone from a place of loving comfort in my marriage and nursing babies to something that was trying to kill me. 

The forty days of the Lenten season leading up to Easter can be quite a long walk with Christ, reflecting on suffering, coping and healing and I felt like I was prepared for a very life changing and life giving event.

How odd it is to think, four years later, I am in deep reflection once again on a Good Friday. 

After having a really great response to treatment, I have been NED, (No Evidence of Disease) for what in the IBC world is viewed as a long time without disease.  I am not in a panic, but I do think something is wrong. My right eye has been a little wacky, but I wasn’t worried, but looking back it all is adding up. There were little things I overlooked or made excuses for.  Not noticing something out of my right eye, minor balance issues and a ringing sound that no one else heard.   When I saw the doctor yesterday, she asked me about my face. She asked me to close my eyes and was poking on the left side with something sharp, then on the right side something dull. Or so I thought.  When I opened my eyes, she only had one tool in her hand, and it was sharp. The right side of my face is dulled. Tests were ordered.  Lots of tests, because it seems not only is my right eye a little wacky, there is a little wacky patch on my brain scan too. 

Good Friday is one of my most favorite Holy days. I love the Veneration of the Cross, The Stations of the Cross, and music only played at this time of the year.  Today it was difficult to be in church with the focus so tight on personal suffering, of others suffering standing by helpless watching you suffer and then talk of death.

My holy day had an intruder, as cancer has no holiday, so today started with a long medical procedure, a MRI of my spine in a machine so close around me that I am grateful I am not claustrophobic.  The technician asked if I wanted a pill to relax me.  She said 75% of the patients can’t get through this test with something to calm them.  I am grateful I can, at least so far, produce my own calm.   Years of practice of being on my knees, I can take myself to a place of peace and what is happening around me is not so difficult to deal with. 

I have one more test to go, a spinal tap on Easter Monday at noon. If something is going on with my brain, it is not the end of the world. Two years ago, if this was happening to me, I would be so afraid. I have seen great improvement in treatment for the type of cancer I had/have/hope to never have again.  And the last four years, a lot of time on my knees.  

 

Peace be with you,  

Happy Easter,

by Debbie Woodbury, founder WhereWeGoNow

Number one, like yourself. Number two, you have to eat healthy. And number three, you've got to squeeze your buns. That's my formula. Richard Simmons

After cancer treatments and surgeries, our bodies are definitely changed. Where there once was health and vigor, there is now scarring, tightness, soreness and weakness. While it certainly takes time to heal physically, it often takes longer to heal our battered body image.

Even after our doctor has cleared us for physical activity, many of us are scared to get moving. We've become protective and have a real fear of doing our bodies further harm. Pain is a great educator and we involuntarily shrink so as not to experience more of it.

When my doctor cleared me for physical activity, he encouraged me to exercise. I joined a rehabilitative exercise class, which went at a pace specifically designed for women recouperating from breast cancer surgery. Emboldened by that class, I joined a gym and attended a Pilates class. The instructor told us to lie on our backs and raise our feet up off the floor. My feet wouldn't budge a fraction of an inch. After a TRAM flap reconstruction, my abdominal muscles would have none of it.  I was so overwhelmed by yet another loss of cancer, I wanted to run from the room crying. I didn't run, but I never went back to that class.  

Saturday, at the Survivorship Symposium I attended at Overlook Hospital, I spoke to a survivor who is out of treatment for a year. She experienced exactly the same "run out of the room crying" feeling I did when she attempted to go back to playing tennis. I commiserated with her, but reassured her that I subsequently found yoga and now can very easily lift my feet off the floor. It just took sticking with it and finding an exercise that worked for me.

There's just one thing I won't do anymore after my surgery - go back on a roller coaster. The thought of throwing my body around like that hurts just to think about. The truth is that I was timing out before my surgery, but the surgery put the kibosh on rollercoaster riding for good. That's okay though. Screaming was the only exercise I got riding a roller coaster anyway.

If your doctor has cleared you for exercise, are you up and moving? Studies now show that exercise is not only important for healing, but also for lowering your risk for future cancers. Make sure to find activities that you like and are comfortable doing and get moving!

WhereWeGoNow.com
Twitter: DebbieWWGN
Facebook: WhereWeGoNow as Cancer Survivors
Copyright (c) 2012 Where We Go Now, LLC 
Copyright (c) 123RF Stock Photos  

More and more studies are telling us that breast cancer screens lead to unnecessary treatment.  I think it all boils down to your focal point, population vs. individual.  Medical recommendations based upon population-level outcomes differ from those based upon individual outcomes.  The numbers tell us that the screening often does more damage than good.  According to the latest study in the news, one death from breast cancer is prevented for every 2,500 women screened, while 6-10 women are over-diagnosed, likely undergoing unnecessary, health-damaging treatments as a result.  With those numbers in mind, should we be pushing breast cancer screening to the degree we do?  Now imagine that one life saved by screening is your’s, your partner’s, your mother’s, or your daughter’s life.  Now how would you answer that question?

So long as our understanding of cancers is so inadequate, so long as breast cancer continues to prematurely end so many lives and maim so many women’s bodies, is over-diagnosis followed by life preferable to a missed diagnosis followed by the threat of death?  Who decides?  Individuals, doctors who treat individuals, researchers who study populations?  Researchers are individuals too,  presumably subject to the same odds of developing breast cancer and the same odds of over-diagnosis.

While I understand the position of those looking at breast cancer from afar, those researchers and statisticians trained to focus in on the numbers, I have a better understanding of the individual behind that number 1 in 2,500.  She is my mother, my sisters, and far too many of my friends.  Until that 1 in 2,500 is just a number, a number that very few of us can attach to an individual loved one, recommendations that we postpone and reduce screening will be hard to swallow.

If you haven’t been following such stories, here’s the latest: http://www.bbc.co.uk/news/health-17585735

What do you think about the many recent studies highlighting the inadequacy of current breast cancer screening methods and their associated recommendations to postpone and reduce the frequency of screening?

Susan Beausang, 4women.com

The last day of August 2007 was the first day of college for my daughter, Veronica.   She is a very ambitious young woman and was set on becoming a doctor.  She was not the first of our children to attend a university, but to have a doctor in the family would be a first for either side of our families, and we were highly hopeful for her future.  It was a difficult time as I was not feeling well for months prior to her big first day.  After being bounced around from doctor to doctor, I was finally told the news.  The call I made to her that evening was a difficult one.  I had looked forward to speaking to my daughter after her first day of classes, talking about her studies, professors and some cute boy gossip tossed in for fun, but that was not the conversation we had.  I had breast cancer.  I not only had breast cancer, I had Inflammatory Breast Cancer (IBC), the most fatal of all the breast cancers.  I was in trouble and as hard as it was to tell her, I wanted her to know.  She quickly offered to quit school, come home and be of support to me.  I insisted she stay at school and we would see each other often.  My heart was heavy as I hung up the phone, wondering how we were going to manage college and cancer, even with the scholarships she had received, there was still a lot of uncovered expense and now our family had newly added cancer expenses looming in the future. 

Receiving treatment at MD Anderson’s Morgan Welch Clinic in Houston, Texas offered a multitude of blessings that I didn’t fully realize until later.  Breast cancer was really not in my world.  I had a few friends who dealt with such a diagnosis.  Sadly, one of them did pass away, but most seemed to do well. “A bump in the road” was a phrase I heard often.  But IBC seemed different.  Most people have never heard of this form of cancer without a lump, one not typically discovered by mammograms.  But the ones who had heard would go pale, often saying, “Oh, that’s the bad one” before they realized they actually said it aloud and quickly stopped.  Inflammatory Breast Cancer was not the stuff of pink ribbons, post-care boob jobs and that sister club I had in my mind.  It was lonely.  I had a disease no one I knew had ever heard of, was highly fatal and required really aggressive treatment for any hope of survival.

I live in the Houston area, so I naturally headed straight to MD Anderson for care. This is where the blessings came in.  Because of the rareness of the disease, I was able to meet women who travelled far and wide to receive care there.  As sad as it made feel to see others fighting this disease, it offered me a strange comfort.  I was not alone.  Maybe some of them could live.  Maybe I could live too.  I wanted to do something.  I wanted to give them something to connect us in those moments of fear, to give encouragement, but how?

One day at a book fair I happened to walk past a booth featuring handmade custom rosaries, and this was the first step in what I hope to become my legacy to IBC.  The rosaries were made of real pearls and were stunning.  The weight of them, the pretty pink color; an idea came together in my mind so fast.  Pearls are formed from pain.  A “bump in the road”, covered by layer after layer to create a beautiful scar, but a scar nonetheless.  People can do the same. They can overcome hardship and have beauty even after a difficult illness.

Looking back I wonder what the rosary designer thought about this crazy woman standing in front of her, with words tumbling out so fast. I am sure she had a difficult time following what I was saying.  What it all boiled down to was simple, “Will you help me?”  I wanted a necklace, something small, but meaningful, a single pearl on a chain, and maybe a second pearl too.  Mary Leano, the woman behind that booth, was my angel that day.  She listened.  She cared about what I was saying and together we came up with an idea: a necklace I could give to women as I met them, to remind them they were not alone, and to offer encouragement.  The IBC Sister Necklace was launched.  This necklace is made of a single pearl drop to represent the woman alone in her battle, and set in the antiqued finished chain is a stationary pearl, to represent all those, seen and unseen who fight for and with her.  Mary made dozens of them for me to give to women.  It filled my heart to see the faces of the women as I gave them the necklaces and explained the reason for the design. Hope was born. Hope begets courage. Again I ran to Mary, and again asked for her help. She was emotionally invested in what I was doing, and very willing to become even more involved. I thought back to my daughter’s first day of college, and realized hope was needed too for whole families, not just the women with the disease. Mary agreed, and together we came up with the Pink Pearl Project, a jewelry line from which all profits will go to support college scholarships for families impacted by IBC.  We got to work.  Due to Mary’s lovely designs and community support, we will award the first scholarship this summer.  The more jewelry sold, the more scholarships we can award in the future.

The pain I felt as a mother on my daughter’s first day of college made me worry that my cancer might not only rob me of my future, but hers as well.  As for my daughter, she graduates this May, with a double major in Biology and Spanish, from Texas A&M University.  (Whoop!)  She still loves medicine but is now considering medical ethics and law, and has accepted a summer internship in Washington DC as she continues planning her future dreams.  Update on me?  I will celebrate 5 years with no evidence of disease, (NED) May 2012.  

Hope always,

Terry Arnold

Survivor and founder, The IBC Network and the Pink Pearl Project

It was like someone slapped me. A simple post on Facebook, “I’m in a relationship, yes, I am dating again!” I shook my head, as if I could clear the words from my mind, reread the post, and have it make sense. Shaking my head like it was a Magic 8 Ball didn’t change anything. The post read the same, but now it was followed by happy tidings for the future.  

Why was I so upset? Why was this so personal to me? The poster’s wife of many years had passed away due to Inflammatory Breast Cancer three months ago. Too soon to date?  Not too soon to date? Not even casual dating, but a “relationship”. I was not judging, just stunned.  

Just like cancer comes without rules, life post cancer is just as confusing. And everyone has an opinion, a suggestion and a horror story, sometimes all rolled into one. What is a surviving spouse to do? There are no clear cut answers. It is common to hear that the now alone spouse, after a long and happy marriage living “when two become one”, finds this new state of singleness as unnatural as the day is long.  

I am living with a fatal cancer currently at bay. I have told my adult children that if the cancer returns and overcomes, to be supportive of their father if and when he chooses to date. After 32 years of marriage, he is used to living in the community that married life offers. I have explained to my children that he will be ready before they are ready. Even though they would have lost me and would have experienced a deep sense of loss prior to my death, he would have experienced something different, a sort of pre-death loss. When one is ill for a period of time, as rich as that time can be, the marriage does change. Mixed in the blessings are losses that only someone walking that path can relate too.  

I have also told my husband that if and when he wants to date, to wait. Wait a little longer that he might feel ready; to give our children time to be ready too. Their loss, although significant, is different. They are not alone and will not feel the same type of emptiness as he will. Their lives will have different distractions, demands and responsibilities that will naturally remove their focus from loss. But for him, he would be living in that void. So a little time will make it easier for our family to heal. And time to grieve is important. To process loss is important because pain post death seems to come out in layers or more like waves, like your heart can’t give it all out at once and not just be broken forever. Then as he moves forward, although I will always be with him, I can be a memory and not a shadow.  

I tell myself, I am stunned, worried that my friend is moving too fast, and could be hurt. A little more time to process would be good. But if I am honest, I would have to say, I am being forced to mourn myself. As much as I would not wish my husband to be alone, I mourn the losses that we have been forced to live with in my illness. Mourn the loss of us growing old together, after what is now 32 years of married life. Mourn not being with him, for his final days, as the sun sets on a long life.  

What the future holds for us only Heaven knows, so give love today as tomorrows are precious and fleeting.

www.theIBCnetwork.org
 

Everyone! 

We have all seen it, something cute or just silly can go viral on YouTube and the world is talking about it.   Can't we do that for IBC, Inflammatory Breast Cancer?  I think we can.  For a radio program, I  interviewed Dr. Ueno of the Morgan Welch Inflammatory Breast Cancer Clinic in Houston, Texas.  Dr. Ueno liked the interview and on his own put it to a slide show.  

This is an important interview and we need people to hear this. Thank you again Dr. Ueno for your support and generous nature to those fighting IBC.

Let's get IBC to go viral on you-tube! See part 1, 2 and 3 and share, tag, post, twitter, or get on the phone and call those folks who don't have Facebook.

Part One:


Part Two:


Part Three:



Hope always, Terry Arnold

I’m not sure exactly why the topic of metastatic breast cancer is so neglected. Obviously, it’s a tough topic, but that doesn’t mean we shouldn’t talk candidly about it. We can’t just sweep it away or dress it up nicely in pink.

For clarification purposes, recurrence and metastatic breast cancer are not necessarily the same thing. A recurrence can be local, regional or distant.

A local recurrence means the cancer has come back in the breast, or in the scar (in case of mastectomy).

A regional recurrence indicates the cancer is in the lymph nodes of the armpit or in the collarbone area.

Metastatic breast cancer means the cancer has spread to other organs of the body, typically the bones, lungs, brain or liver. This is also referred to as distant recurrence.

A diagnosis of any of these is, of course, devastating though treatment and outcomes are not the same for all.

When you hear the words, “You have cancer,” you might think you’ve heard the worst three words you could possibly hear in regard to your own health. In reality what’s far worse is hearing the words, “Your cancer has come back or your cancer has metastasized.”

Roughly 25-30% of women diagnosed with breast cancer, will have a recurrence at some point. Each year around 40,000 lives are lost to metastatic breast cancer. The fact remains that two years, five years, ten years, even twenty years passing does not guarantee that a woman (or man) is in the clear for good.

Despite these statistics, words like recurrence, metastatic breast cancer, stage IV and incurable often remain unspoken. They are "heavy" words. Even bloggers like me often hesitate to write about them.

Why is this?

The biggest reason in my view is fear.

Facing a recurrence or metastatic cancer of any kind, even as a possibility, is scary and hard; but this is also exactly why we do need to talk about it.

Perhaps subconsciously we feel if we just keep quiet, it won’t happen to us or our loved one. Of course, we all know this isn’t true, but the mind works in mysterious ways.

Another reason might be because we don’t want to offend those already living with metastatic breast cancer. There is a certain amount of guilt involved when you know others who are living with mets and you are not. Again, this self-imposed guilt makes no sense, but that doesn’t mean we still don’t feel it.

One huge reason many of us hold back and don’t speak of recurrence or mets is to protect our loved ones. Facing cancer once is bad enough for everyone. No one wants to think of putting loved ones through it a second or third time.

Another discussion barrier is that people automatically equate metastatic breast cancer with a death sentence. While it’s true there is no cure, mets is treatable. It doesn’t mean the person will be gone in X number of days, weeks, months or years.

We can’t just “write these people off.”

And while this is true, it’s also true that talking about metastatic breast cancer might force us to grapple with the topic of death, and in my opinion, society doesn’t want to touch that one with a ten-foot pole.

One thing I do know is this:  just because recurrence and metastatic breast cancer aren’t discussed much, it doesn’t mean those of us with an initial diagnosis aren’t thinking about them.

Anyone who has had a cancer diagnosis thinks about recurrence and metastatic cancer, even if they never speak of it. Keeping quiet doesn’t equal not thinking about it.

This is not to say we dwell upon it, are pessimistic or live life in constant fear. That’s not the case at all.

In fact, this potential for recurrence is the exact reason so many people say they have been transformed (for the better) by cancer and live differently after a diagnosis. Perhaps this is even why some (not me!) go so far as to call their cancer a gift.

On a related note, one of the biggest reasons so many of us in the breast cancer realm are dissatisfied with all of the October madness and the prevalent pink ribbon culture with its almost cavalier attitude, is because the mets community doesn’t seem to be included enough, or even at all.

Metastatic breast cancer doesn’t fit in with pink very well.

Metastatic breast cancer doesn’t fit in with the “everything’s going to be OK” message that is often conveyed via all the well-intentioned pink hoopla.

Metastatic breast cancer is not the reality October wants to “talk about.”

Still, metastatic breast cancer is a reality to many. There are about 155,000 men and women living with mets.

We owe it to them and to all those lost to talk about it, even if it’s hard.

Not talking about it is just plain wrong.

For more posts on mets and other topics, please visit my blog at www.nancyspoint.com

 

 

“Just go get some itching cream” stated the nurse as she headed for the door. The patient sits there, stunned, thinking “Now what?”

What you just read is a conversation relayed to me on regular basis by women trying to sound calm after placing a call to The IBC Network Foundation.  Usually they have never heard of Inflammatory Breast Cancer, IBC, until  they find The IBC Network Foundation site in their internet searches on what to do for an “itching” breast. The reactions to the information are as varied as the women who read about IBC which is touted as one of the most fatal forms of breast cancer. Even the most informed women rarely have heard of IBC prior to their first symptoms or their own personal diagnosis. Most have never heard of a breast cancer that does not have a lump, is not commonly picked up on a mammogram, can strike women under 40, and does not have any means for early detection. If this is a woman’s first time to do an internet search while seeking relief from an itching breast, the facts on IBC can be motivating to set an examination as soon as possible. However others are often really confused, conflicted and bewildered as to what should be the next step. They may be the ones who noted some changes in only one breast and got a mammogram followed by limited or unsatisfactory results.  Do they push for more tests? And if so, what tests? Or should they just give their bodies time to resolve the problem? For many years we have talked about the importance of monthly self-exams and mammograms. As important as those good breast health practices are, IBC does not present the same symptoms for detection of traditional breast cancer.

I was inspired to write this today after speaking to a woman in Atlanta, Georgia. She has not been seen by a breast specialist. Her family practice doctor referred her for a mammogram due to her complaint that only one of her breasts was swollen and itching. Normally a size D, one breast was now too large to fit in her bra, and she had a small silvered patch that itched all the time. After the mammogram, the nursed relayed the all clear sign, and she was sending the patient on her way. The doctor never laid eyes on her or her breasts in the flesh, only via a mammogram scan. My caller told me she was sitting there, stunned, and was told, “Just go get some itching cream” as the nurse was heading for the door. The patient stopped her, “What about IBC? What about Inflammatory Breast Cancer?” The nurse looked at her blankly and said, “What is that?”

Please talk to your doctors, nurses, friends and family about IBC. Yes, there are many wonderful medical caregivers who are very informed about this disease; however just as the general population is not well educated on Inflammatory Breast Cancer, many in the medical community are not as well versed as they could be. Together we can change that. We need to talk about IBC.

Inflammatory Breast Cancer Network-
IBC Network Foundation
http://www.theibcnetwork.org