"Inflammatory what???"

"Inflammatory what???"

-By Ruth C, Michigan, USA

I am a mother of 2 sons, teenagers now.  Where did the time go?   2 weeks before all hell came down, I received an e-mail from my sister with an article about IBC, inflammatory breast cancer. She asked me if I'd ever heard of this.  I had but only as a very rare and distant BC.  When I read the symptoms and the resultant treatment, I thought, "wow hope no one I know ever gets that". I immediately wrote back and asked my sister if she was having these symptoms, and she said no, she just wondered what it was... I am an RN and know about these things you see... 

Two weeks later I am helping my husband Roger put up the display tent for our pottery, as we had 2 hrs to set up before the art fair begins.  I felt a pain in my rt breast and thought, "That’s funny, hope I don't have one of those funny fatty things again."  Ten yrs before I had had a fatty lump removed from that breast.  It was just that, fat, but  the pain of its growing felt like the pain I had now.  I went to one of the portable potty things and had a look.  What I found was a shock! There was this quarter sized red and bruised area where the pain was, and my nipple was inverted!  It was not like this when I took my shower..what had happened?  I didn't hurt myself, or get bitten.  What was this?  My mind then went immediately to the article my sister had sent about IBC and I was scared!

I didn't tell my husband but it was the hardest, longest day of my life!  This was on a Saturday and the Doctor's office wasn't open until Monday.  I tried to tell myself it was nothing to worry about really.  Cancer doesn't hurt, I thought, I'll be fine.

By Saturday night I could feel a ridge about and inch long and the red area widened.  It was now very sore and throbbing.  I finally told my husband about the pain and redness but not about the article or my fears.  He was concerned but when I reassured him that probably a bug bit me or something he let it go.  On Sunday I awoke with pain and now the redness was all in my rt side of my breast, swollen and very tender to touch.  The ridge was now as long and wide as my middle finger, and the nipple was very inverted.  I wasn't running a fever though and I knew this must be IBC.

I was able to see my doctor first thing Monday morning.  He scheduled me for a diagnostic mammo and an ultrasound of the breast.  I had already scheduled myself for a regular mammo in 2 weeks, but when they got the order from my doctor, they put me in on Wednesday.  They took so many pictures and I was in tears from the pain.  The tech said, "we are having a hard time seeing anything on your films because its very cloudy and fatty." The cloudiness I found out later is what IBC is characterized as when they talk of "sheets".  I did have large breasts but they could see everything on my left breast, only my right one was trouble.

The Ultrasound was not much better, but here they found a "structure" on my rt breast in a duct, and my lymph node leading from the breast was solid, where it should be hollow and fluid filled. Based on the structure in the duct though, I was referred to a surgeon (not a breast surgeon, which I didn't know until later).  His conclusion was that it probably wasn't cancer, and all this manipulation must be making my breast sore and don't worry you're too young..blah blah, blah...He was the one too young, cocky and said " It can't be IBC, you don't have peau d'orange"  At the time I was scared enough to just go with what they were saying and just get a lumpectomy, biopsy.

It was done 2 weeks later (now 4 weeks after I discovered the spot).  I had stitches and bruising and was swollen still.  My surgeon took this time to go on a trip.  The results were sitting there on his desk the next day, but he was gone, and the nurses weren't allowed to tell me the results.  As a working RN at the hospital where I'd had this done,  I decided the risk of being caught was worth the knowing what I had.  I looked up my results, and found that I had adenocarninoma of the duct and invasive to outside tissues.  There were  many MANY undifferentiated abnormal cells throughout the tissue and no clear margins.  I was ER/PR positive and Her2 negative.  When I saw all this I broke down in the office where I worked and cried.  My colleagues came in and and comforted me; I had told them of the adventure so far and they had tried to tell me that cancer doesn't hurt and this was just a blip in the road.  Then I showed them the results because by now, in for a penny, in for a pound.  One of my colleagues got on the phone right then and called our oncologist colleague/doctor and asked her to look up the results of my biopsy.  She would call me later when she could look at the results.  I was a basket case and they sent me home...

This kind doctor called me at home and looked at the results right as she was talking to me, explained what all the results meant and then said "you need more surgery to get clear margins and you need a sentinel node".  She asked who my surgeon was, I told her and there was silence. Then she said well I'll call him with my recommendations, and I asked her  right then if she would be my oncologist and she agreed.

My surgeon was angry that I had gone behind his back but scheduled another lumpectomy.  When he saw me before thi he was surprised at how much more area was swollen with bruised areas all over.  He scheduled a nuclear scan before the surgery to be sure he could get all the margins.  He injected my breast with dye (God that hurts!)and told me to massage it.  I did in spite of the pain and when they took the picture the radio dye hadn't moved.  He was miffed at me as if I hadn't massaged it enough.  But I thought, "yeah well, when you have IBC the pathways are blocked! Doesn't this tell you something?"

The regular blue dye made it through though, and my sentinel node was found.  This doctor took half my rt breast with the nipple and the rest of the duct along with the two beside it and then started on the nodes.  In all he started with 12 nodes that were looking bad, then took them all. All four of the first nodes came back grossly positive, and a little in many of the others.  I had drains and half a breast left and he didn't want to keep me in the hospital, but my doctor said she stays. and that was it.  When I went back to have my stitches out and the drains removed, he told me the biopsy report said IBC, but he didn't believe it because "You didn't have peau d'orange.".  He said see you when you want the mastectomy, and I thought "it'll be a cold day in hell!" and left.

This long short story is to tell people to be vigilant, persistent in their own care, and don't take no for an answer!  Educate your doctors, show them the information you find.  I even had to educate the insurance company, which to their credit looked up my info and approved all the tests afterwards. You can choose who takes care of you,(at least in the USA)and when you have an IBC diagnosis, the ones caring for you should have training and knowledge of how to treat the disease.  My oncologist consults with MD Anderson IBC clinic frequently, and presents at oncological conferences regularly.  She is currently caring for 6 IBC patients, all of whom are doing relatively well.

I had 4 rounds of adriamycin/Cytoxan every other week and then taxotere every 3 weeks for 4 rounds.  I had surgery after chemo, a double mastectomy by a breast surgeon I felt good about, and then 33 days of radiation.  Since January of 2007 I have been NED, no evidence of disease.

My Story: The Worst or the Best Gift?

My Story: The Worst or the Best Gift?
-Brenda, North Carolina, USA

On June 20, 2009, my world - my life - began to slip away from me. That was the day I realized that the large, red "bug bite" on my breast was not going away and that, in fact, my breast was getting redder. That was the day I called Nancy, a breast cancer survivor, and asked her if the odd redness sounded like anything to her.

"It sounds like inflammatory breast cancer," she said. "You need to get on the Internet and look it up, and on Monday you need to get to the doctor."

Eight years earlier I had had a breast cancer scare that wasn't a scare at all. I just knew that the lumps in my breast were no cause for concern - that everything was OK. And it was.

But that day when I spoke to Nancy, I immediately knew just the opposite. Everything was not OK. And it would never be OK again. June 21st is my birthday. I thought that either I had just received the worst birthday present imaginable - or the very best one. It all depends on your point of view.

Ten days later I had a confirmed diagnosis. Nancy was right. It was IBC - a rare and very aggressive form of breast cancer with a poor prognosis.

How do I tell the story of the nine months that followed?

There were the normal fears and anxieties that people have when they are told that without prompt medical treatment they will surely die (and soon) - and that even with the treatments they might still die anyway.

There was the attempt to wrap my head around the fact that the treatments being recommended to me were unbelievably brutal - not the kind of things I would voluntarily do to my body in a million, jillion years. But if I wanted to have just a chance to live, I had to submit to them.

There were the anxiety and then the anger at feeling as if all decisions about my care had been decided before I ever walked into the exam room - that I was not really an active part of my treatment team. This was a feeling that was reinforced many weeks later when one of my nurses told me that my oncologist would not even consider doing something that I wanted to discuss with him, because, "after all, he is the captain of this ship." My body, my life, my potential death. But my treatment team did not think of me as being at all in control of what was happening to me - my oncologist was.

There was the need to be constantly vigilant on my own behalf - to make sure that the treatments we agreed upon happened as we discussed them. Sometimes, I wasn't able to be vigilant enough.

There was the anxiety and anger of realizing that the official ASCO surveillance guidelines for detecting the recurrence of breast cancer do not include any kind of blood work or imaging work EVER.unless the patient becomes symptomatic first. The reason for this laissez faire approach is because:

If we did find a recurrence, the official guidelines for treatment say that I cannot be cured. I will certainly die. So why try to find a recurrence early? The goal of treatment, at that point, will be to help me live as long and as comfortably as possible - not to cure me. Upon recurrence, the
Medical Establishment will abandon me to my death.

There was the resurrection of deep, deep traumas I suffered during a six-week hospitalization fifty years earlier, when I had almost died from hepatitis at the age of 5. This monster has raised its head and caught me by surprise. It's made everything much more difficult - including my efforts at survivorship.

But in the end, I have survived. As of March 10, 2010, I had survived both the cancer and the cancer treatments. I responded well (physically, anyway!) to my treatments. I have as good a chance as anyone with my diagnosis of living for many years to come. In fact, I probably have a slightly better chance than many people with my diagnosis.

I found out that the depths of peoples' caring and compassion were surprisingly great. The people who came forward to stand with me in all sorts of ways, at this most horrible time in my life, surprised me. It was a gift I did not expect. It has humbled me.

I was surprised at the people who didn't reach out to comfort me, help me, cheer me, or cry with me. It was a disappointment.

Most of all, I was pushed off-center in my heart and in the deepest reaches of my soul. I have become completely disoriented - a stranger to myself. I am still trying to regain my footing. To figure out who I am, now.

That's what I've been doing since then: Trying to make sure that the news I got on June 20, 2009, turns out to have been the biggest gift I could have received.

Picture Daze -By Marti S

Picture Daze
- By Marti S

I posted this originally on September 16, 2011, one calendar year from the day I discovered the "sheet" in my right breast and my life changed forever. Today is picture day at my school, AGI. I am still out because of my fairly recent right mastectomy, but this day has put me in a reflective mood. It's ironic in a way that today is the first day after my surgery that I have been allowed to take a real, honest-to-goodness shower. That's because exactly one year ago today while I was taking a shower I found that "sheet" in my right breast. I was pretty darn sure that this weird "thing" had not been there the day before.

I'm lucky in that I never went through the denial phase - at least not the part that makes many women initially avoid medical treatment fearing the worst. I wanted to be seen THAT DAY and thanks to a great PCP here in my hometown, I did get seen that very day.

He didn't think it was cancer for a few very plausible sounding reasons - early cancer is usually not painful but yet I was quite tender over the sheet, I'd had a routine screening mammogram just the Feb. prior which had shown no changes over the prior 3 years, etc. etc. He said, though, that ANYTHING in the breast needed to be investigated and set me up for a diagnostic mammo, ultrasound, and a consultation with expectation of a biopsy with a local general surgeon.

When I saw that surgeon about a week and a half later, he said words that I will never forget: "Well, you hear of Inflammatory Breast Cancer." That was news to me. While I haven't practiced in over 20 years, I hold a BS in nursing from Texas Woman's University and at least remember some things medical. I certainly had NEVER heard of such a thing as IBC!

Even though his words convinced me I needed to find someone with actual expertise in IBC - I fairly quickly found Dr. C - you can't find much more of an expert than he - my sister feels the fact that that surgeon said those words constituted the first miracle in my year-long journey toward NED.

Today, I'm still experiencing post-op pain and now with both drains finally out, I actually, literally can hear myself slosh when I walk. But I'm here - alive, feeling better all the time, and very hopeful for the future.

I'm triple negative and I know at least something of what that means. I know full well that the road ahead may carry with it many "speed bumps" but I've got a chance. I want to get back to work doing what I do best - helping kids with learning problems believe in themselves enough that with the right approaches they can start making up for lost time, learn to read, understand math, and become active, contributing, happy citizens of this amazingly wonderful country of ours.

I am completely humbled by the outpouring of support that I have experienced over the last year - this group, my family, my wonderful friends and colleagues at my school, my church including our amazing associate pastor who has visited with me when fears of infection have kept me away from Sunday services, and the many prayer groups of a wide variety of demoninations and faiths who have held me up to God in prayer.

Today will pass, I'll continue to recover from my surgery, and for the most part I'll go back to living my life more or less "normally."

If given the choice would I "pass" on this IBC journey? In a heart beat! But I have learned some things that I probably would never have learned in any other way, and for that much I am grateful.

I've never set up a blog but from time to time, I've let FB notes serve that purpose. Thanks to any and all who read this note and thanks so much more to ALL who have supported me. My journey isn't over but what a milestone today represents for me! God bless you all.

Inflammatory Breast Cancer: A Mother's Journey

Inflammatory Breast Cancer:  A Mother's Journey
-By Patti B

As I drove up the gravel drive to my little girls home, my stomach, and mind were churning, both with anxiety and fear of what lay ahead. I turned the car towards the big cattle gate and saw her standing there, and could tell immediately she was in intense pain. Her five Labrador sat quietly by her side as she motioned for me to get out of the car. Normally, she would have opened the gate, but not today. She couldn’t. My own heart was pounding so hard I could hear it in my ears....I wanted to bawl, to run to her, to cry, but knew I couldn’t. I had to be strong. Oh Lord, I will never forget that moment as long as I live.

Standing in the hot sun in the dust of the farm swirling around us, Tina said, "Do you want to see it? Not waiting for an answer she opened her blouse and showed me her doubly swollen right breast with blood still oozing through the bandages where just hours before three separate biopsies had been taken. "I can’t lift my arm or take a deep breath it hurts so bad". I wrapped my arms around her, and there we stood. Two human beings, five dogs, and a sea of emotion that only I feel today the dogs could feel at that moment. They were still. Standing quietly. You don’t ever see that.

Thus began ‘our’ journey through the maze of Inflammatory Breast Cancer. Tina had laid out all the documents she had received from her oncologist. Places for her to sign, places for me to sign so the doctor ‘could’ talk to me (the wonderful HIPPA law you know). The ‘trial’ documents explaining that the drugs she would be taking were a "trial", were Carboplatin, Taxol, and Herceptin. The side effects sounded brutal, but my little girl made a statement that day that carried her forward, and she never looked back.

"Mom, these drugs are either going to cure me or kill me. It’s already in my liver so....."

The very next day she was sitting in a recliner in a private room starring wide eyed at me. She didn’t take her eyes off of mine, because in my heart I knew she was waiting to see my reaction to what was going to begin. "I have kept my body away from drugs all my life and look at this. Look at all the poison." Bending down, I kissed her forehead and told her I loved her, and she was strong. As the first of the drugs began to trickle from the overhead bag, one shiny tear slid down her face...."I hope I can be, but more, I hope you can be strong." My inner voice was screaming "Why not me God, why my little girl? Please! I know I am being selfish, but Please don’t take her from me".

Tina had begged me the day she was diagnosed, "Mom, if you never write another word, you have to write about Inflammatory Breast Cancer. Nobody has heard of it, and that is just stupid. So, I began to write. But, even though my lifelong reporter connections were strong, no one wanted to print anything about IBC. "We don’t want to scare people...." was the constant reply. Anger took over at that point. My years as a reporter told me that maybe it was time to step up to another medium. Television. Totally out of my comfort zone, I marched into studio after studio in the Seattle area, only to be met with the same...." we don’t want to scare people".....until I found KOMO TV and the staff that have since made history with there continuous stories on IBC. The biggest one, which went viral on the internet, was picked up by CNN, MSNBC and Good Morning America, was "The Silent Killer". The national reaction to that piece took down KOMO’s servers and 20 million hits later they had to bring in more servers to pick up the overload.

We were off and running. That was May, 2006. Yes....it took a year and a half of constant badgering (between staying with Tina while she fought the effects of the chemo) before the nation started waking up. Women started waking up I should say, but not the medical community sadly.

In June of 2006 I received a call from Dr. Massimo Cristofanilli, a Houston doctor who said, "we need to talk. Your story has opened the flood gates, and I think we have an epidemic of IBC". I quickly replied, "no kind sir, it isn’t an epidemic; it’s just that women from all over the ‘world’ have found there is "A" doctor who they can turn to. All the women he began seeing had been either mis-diagnosed or diagnosed correctly but then not treated correctly and were in a very bad way by the time they got to him.

"I am going to start an IBC clinic," he said that day. And he did. In October of 2006 he and, Dr. Tom Buchholz began a journey which was the first Inflammatory Breast Cancer Clinic in the world.

My beautiful daughter was fighting for her life. Eight months of chemo and then the news the cancer couldn’t be found on a PET scan in April of 2004. We were ecstatic to say the least. During those eight months we had taken a dream cruise, just the two of us to the Mexican Riviera. "One bald chick and an old broad" she said laughing on night one of our sea extravaganza....."and next stop we swim with the dolphins".

I would like to say here, now, I don’t have to tell you a mothers feeling that her daughter might die from a condition you have never heard of, is an emotion no one should have to live through. But, the readers of this piece need to know how deeply that emotion is, even if you, the doctors cannot see it. It lies beneath a plastic exterior that most see past. Mothers and Fathers ‘feel’ they have to be strong, showing little emotion to bolster the child that watches for any little crack in the only armor they have, which is their parents, their support system, whoever they are. In this case, it was me. Thank God for my Icelandic heritage of stoic outward composure. Be very afraid when you see that, for if it crumbles, it may come out in a fury that you would not want compromised.

My outward calmness was shattered in February of 2005 when Tina started saying, "my shoulder blade hurts so bad...can you rub it for me." The liver mets had returned with a vengeance and back on full chemo she went. Only now I knew more. I had researched, read until my eyes blurred, and knew Tina needed the best doctors who had treated many cases of IBC. I found them. But, Tina rejected my plea of getting a second opinion. Her oncologist was trying *off the wall* treatments that not one specialist had ever heard of. My Icelandic armor got stronger. I stepped in where I felt I had to. But was not met by indulgence from her doctor. I was met by confrontation, by indignation, by pure unadulterated pride. Who was I to question her opinion? I immediately became an outsider and my hands were tied. The doctor wouldn’t talk to me, and Tina felt I had overstepped my bounds. At a loss ... I turned my anger and frustration to other women who might benefit from what I was learning. Which at that time is when Dr. Cristofanilli came into the picture. Inwardly I prayed if I told Tina about what I was learning, she would lean on me and listen. But, it wasn’t to be, although I shared everything I learned.

I told her about the doctors across the country that were misdiagnosing women for months and months, then sadly the women died because they waited too long...they didn’t wait too long, their doctors did. One woman was told, "You had a double mastectomy 4 years ago, you can’t possibly have IBC, you have no breasts"....another young nursing mother was told, "you are too young and this will clear up after you quit nursing"....(she died before she quit nursing). An eighty-year old woman called me crying one day and said, "I can’t possibly have mastitis, I haven’t nursed for 50 years"....she only lasted six more months from her first phone call to me.

What motivates me today many ask? Why do I stay and what pushes me forward?

The misdiagnosis of over half the women that I talk to is still happening. Trying one antibiotic then another, then another to stop the swelling, the blisters, and the bleeding in some cases, still continues. The biopsies (if they are even done) are not read correctly, and come back "unknown etiology," thus wasting precious time, and sadly lives in too many cases.

With the advent of so much availability on the internet, women are learning what the signs and symptoms of IBC are and they take there findings to their doctors. Some, but not all doctors, blow away these concerns, and tell them, "get off the computer, you will only scare yourself"....(sound familiar?)

I am not exaggerating when I say constantly I hear from women, and sometimes their loved ones who say, "how do I get the doctor to listen to me? Three rounds of antibiotics and I /she is still so swollen she can’t move". If the women and their loved ones can find the information on the computer....HELLO...why are the doctors digging their heels in and shutting their minds to what they are seeing up close and personal. This has to stop. Please hear us, all of you in the medical community. Women are dying at an alarming rate, and not because (as the medical journals say) they wait too long to get medical advice, but because the very people they put their hope and life into the hands of...the doctors, are not listening to them.

This reminds me of earlier days, which I do remember because I have lived long enough to be a part of the "early days"; if women had an ailment, any kind of ailment, the doctors would say, "calm down, take a pill, relax, it’s all in your head." I can personally attest to my first time in this arena with a blood clot in my groin (iliac) and was told by the physiatrist they brought in, "There isn’t anything wrong with you. The pain you are experiencing is probably stress related."

Physicians, listen to your patients. With Inflammatory Breast Cancer, even if you don’t believe its possible, RULE IT OUT FIRST. Take a biopsy, have it read by a pathologist that knows he might see IBC. Pretend its your car and you are going on a long journey. Don’t you check the brakes before you leave? RULE OUT THE WORST FIRST.....not last. Then you never have to look in the rear view mirror and wonder if you made a bad choice.

I lost my beloved daughter Tina on August 29, 2007. She worked right up until three weeks before she passed away. She left us the same way she had dealt with everything she had been through, with her chin in the air and always saying, "I hope what has happened to me, and the drugs I have taken, will help science."

And one last thing she asked, I will continue and keep my promise. "Science and research are great Mom, but do something to help the women, if you can." I promised.