Breast Investigators

I am a firm believer in being one’s own staunchest advocate. This is true for all areas of your life, but it’s vital if you want to receive the best medical care.

This is not to say you shouldn’t have trust and faith in your team of medical care providers, but you do need to feel free to speak your mind, have your opinions heard, ask questions, stand up for yourself and ultimately make the final decisions.

Perhaps most importantly when something is being discussed and you don’t understand it, ask and then keep asking for clarification until you do.

Actually doing these things is much easier said than done, especially when faced with a serious diagnosis like cancer. 

When you receive a cancer diagnosis, you are initially in a state of disbelief. You feel as if the words “you have cancer” must be describing someone else. I remember quite vividly the afternoon I received the phone call confirming my diagnosis and the disconnection I felt to those words.

I couldn’t believe they were describing me. It seemed impossible.

After receiving a cancer diagnosis, a person is in a very vulnerable state of mind, to say the least. Yet during this period, you are suddenly faced with the harsh reality of seemingly countless appointments and procedures.

In addition, you are trying to absorb volumes of new information while also attempting to make life-altering decisions. At times it all seems just too overwhelming because it is.

Yet this is the time when you must advocate for yourself most diligently.

In order to do this effectively, I believe one must take the time to step back, breathe; slow things down a bit and think things through.

Too often decisions are rushed.

While this need to hurry up, get the cancer “out” and just get on with it is understandable, it might not be the best strategy. Of course, taking too long isn’t good either, but generally it’s ok to take some time.

Usually a cancer diagnosis is not an immediate medical emergency, even though it certainly feels like the emergency of a life time. My doctors kept reassuring me most cancers have a “window” of six weeks or so. During this time frame, tumors don’t generally change enough to impact decision making.

Therefore after a diagnosis, there is usually time available to absorb, process and adjust to your new reality. During this period of days or even weeks one can mentally prepare, gather information, compile lists of questions and hopefully put together a plan.

By taking this extra time, you will undoubtedly become better informed, feel mentally more prepared and ultimately feel more empowered to make better decisions.

You will begin to feel more in control of your medical care and your life.

It won’t be easy. In fact, at times it will seem undoable.

Ultimately, it is your life. It is your cancer. It is your body. The final choices are yours to make.

Isn’t that really what being your own best advocate is all about?

 

 Read more at www.nancyspoint.com

 

As an Alopecian, the hardest part of hair loss for me is that I am assumed to be sick, or more specifically, to have cancer.  Not only don’t I have cancer, but beyond my immune system’s assault on my hair follicles, I am absolutely healthy.  Bummer?  Yes, but life goes on and I choose to move on with it.

A couple of years ago, I conducted a two-part survey exploring the emotional impacts of hair loss.  In addition to an Alopecia Survey, I conducted a separate Cancer Hair Loss Survey.  A whopping 461 women have taken the survey and there is much to be learned from them.  I learned that while the cause of our hair loss is different, we largely agree on the most difficult aspect of hair loss - the public perception that we are sick.  Yes, a cancer patient is fighting a disease, but it’s a disease that is otherwise invisible to anyone not peering at us with the aide of an MRI or CT scan.  Cancer patients desperately want to carry on with life as normal.  Hair loss strips women who are undergoing chemotherapy of their anonymity.  It’s like carrying a neon sign that flashes “I have cancer.”

When I look in the mirror, I am reminded that I have alopecia areata, a disease that causes me to lose my hair but does not threaten my life.  When a woman with chemo hair loss looks in the mirror, she’s reminded that she’s fighting for her life!  When others look at her with fear, pity, questions or comments regarding her status as a cancer patient, she’s reminded that she’s fighting for her life!  She doesn’t want reminders.  She wants to stop cancer from defining her, her life, and her family’s life.  Hair loss can get in the way of that, but it doesn’t have to.

Just because we are bald, we don’t have to look sick.  The trick is to redirect the eyes and attention from what we’re lacking to all that we have!!!  Colors, patterns, texture, eye-catching earrings, facial definition with make-up, fun fashion, a fit body, or a vibrant smile all show that we are and always will be more than our hair, more than a disease.

What strategies have you developed for redirecting their eyes from what you’re missing to what you’ve added?

Susan Beausang, 4women.com

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