In Our Own Words – What You Can Do For Me by Trisha T.

Trisha battle IBC for 10 years (5 with metastasis).  This is an essay she wrote that I thought still might be of interest.  Suzanne L.

In Our Own Words – What You Can Do For Me

by Trisha Tester

I am a metastatic breast cancer patient. Although this means that I am almost certainly going to die of this disease (barring a miracle), I am not a victim. I don’t like that word, and I would prefer that you never use that word around me. I am a regular person, who happened to be standing in the wrong place at the wrong time, and I got whacked with the cancer stick. I have noticed that people don’t always know what to say to me any more, or what to do to help. Most people are loving, caring souls who really do want to help, but have no clue what I need. To try to help you help me, I have made a list. Please keep in mind that this is purely a subjective list. I have tried to include other viewpoints, but I don’t want you to think that all things work for all people. We are wonderfully, excitingly unique human beings. And so, of course, our needs will be different. You will have to judge which suggestions you feel would be appropriate, and what you would be comfortable with.

1. If I want to talk to you about what life will be like after I am dead, DO NOT under any circumstances give me that fake, terrified, cheerful smile and say “Oh don’t talk like that. You will be fine.” There is every likelihood that I will not be fine, and it is very comforting to me to know that you will tell stories of me to your children (and my children!!), and will always hold me in your heart. It is incredibly comforting to hear that you will include my children, who are much too young to lose their mother, in your life in a much greater way than now, while I am still here for them. You can not depress me, by acknowledging that death is probable, or even imminent. I am all too aware of it. As a matter of fact, if you put on that fake cheer, all you are telling me is that you are not able to be “there” for me for my needs. If that is the case (and I won’t fault you if it is), don’t even try to pretend. Just give me a quick hug (there is nothing about me that is contagious), and tell me you care, and skedaddle. I don’t have the time to waste on fair weather friends.
2. Don’t give me the standard offer, “If there’s anything I can do for you, please don’t hesitate to give me a call.” Most of us are used to being strong and capable people, who have taken care of ourselves (and usually others) for decades. It is very uncomfortable to be in a position of not being able to do for ourselves. I would suggest that you drop in for a visit, pick up a broom, and sweep. Ask me if I have any plans for dinner, and just start making it. I won’t ask you to do these things. I am not used to asking for help. I am not good at it. If it is an emergency, I will call out for help. But if it is the little day to day nonsense that piles up until it feels like it is going to consume me, I will probably not ask for your help (but I will be eternally grateful if you just come and do it). Be assertive. (But never mean!)
3. Talk about old times often. This has come as a surprise to many people when I have suggested it to them. They say “But Aunt Nellie will think that I think she is about to die if I talk about old times.” HELLO!! She is about to die. I am about to die (although I hope it is prolonged by long periods of relative wellness). And I love reminiscing. It helps me to remember fabulous times in my life that I may have forgotten. It brings me a smile. It helps me to remember that even if my life is cut much shorter than planned, that it has still been a good life. It gives me a better sense of wholeness.
4. (Actually, corollary to 3.) Take some time to organize the photos into albums. I don’t know a person alive (well, maybe one) who is really on top of their photos. Put everything else aside, and devote however much time it takes. Get the photos in albums, with captions, and stories. If you have a videocam, just set it up and let it go. If you just have a tape recorder, that would be great too. Not only will your loved one have a superb walk down memory lane, generations to come will bless you. If I had only done this with my mother…
5. Don’t ever, ever feel guilty for enjoying life. When you find yourself having a great time, and you happen to think of me, do not feel bad – not even for a microsecond. Life is short. For all of us, whether we live to be 10 or 105. Enjoy the hell out of it. I would if I were in your shoes. Heck, I do now. My favorite cliche du jour: Your life is a bag of coins to be spent any way you choose. But you can only spend it once. (Spend it wisely, my friends.)
6. Don’t be afraid to be afraid. If you are paralyzed with fear (and believe me, I have been there – as has my family!) it’s ok to tell me that you are afraid that I am going to die. I am afraid too. Sharing that fear really does in some way make it easier to handle. Denying it seems very very false. I need real. I have no use for false. Once we have shared the fear, amazingly enough, we can set it in back of us again and move on. If we don’t do that, it will block our paths at every turn.
7. Chances are that my bills are a pile of unorganized paperwork in a box somewhere. Cancer is an incredibly overwhelmingly expensive proposition. All the charges are mind-boggling, and intricate. Insurance companies (in my experience) are incompetent and potentially fraudulent bozos who screw up all the time. I don’t know if they could really be that incompetent, or if perhaps they are encouraged to be so, hoping that you will throw up your hands in confusion and pay some of the things that they “forgot” to pay. At any rate, I would be enormously grateful if you would come by some day, without judgement as to what kind of a mess I have made of the pile, and help me straighten it out. Maybe make a few phone calls. Maybe write a few letters. You wouldn’t believe what a difference it would make.
8. Say, “I love you” a lot. Depending on who you are, that may come out as “You are the funniest person I have ever met,” or “In the history of mankind, there will never be another person as __________ as you,” or simply “I love you”. But this is your chance. Don’t blow it. After a certain point, there is no going back for makeup credit.
9. Be very conservative in what perfumes/colognes you wear. Chemotherapy often makes for incredibly sensitive olfactory senses. Perfumes can be overwhelming and nauseating. And by the same token, be especially sensitive if you are a smoker. (Unless the patient is a smoker – I wouldn’t know about that situation.) If you do have to smoke, please go outside. Even if I say it is OK. And hang out outside for an extra 5 or 10 minutes to air out. You wouldn’t believe how much vile aroma clings to you.
10. Make plans, not offers. Instead of asking if I want to do lunch sometime, ask me if next Tuesday is free. Then tell me, “Great! I will be by to pick you up at 11 so we can go out to lunch. Maybe we could do a little window-shopping if you are up to it.” Of course, you will have to be flexible, in case Tuesday is one of those days that I feel like I have been run over by a Mack truck ..
    .
11. When you ask me how I am, please remember that I am much more than my disease. I know that people ask out of concern, but I get a little tired of reciting disease progression or regression, treatment updates, symptoms, etc. Remember that we really did have things we used to talk about BEFORE I got whacked. Those things are still important to me.
12. Please be aware that “looking good” has NOTHING TO DO WITH IT. Don’t worry – I even do it myself – tell my friends how good they look as if it meant that the cancer must be under control… No such luck. Until the very very end stages, cancer itself frequently doesn’t cause any distress at all. Usually doesn’t hurt. Often you can’t even feel it (which is why so many of them go undetected for so long.) The treatments, on the other hand, can make you want to die, even when they are saving or (at least prolonging) your life. This doesn’t mean I want you to stop telling me I look good. I just want you to realize that it really doesn’t mean diddly-squat.
13. I need you to realize that this experience has changed me in several ways. I am still the person I have always been, but I am different, too. For one thing, I am tired. You know how tired you are when you are sick? Imagine having that be your new “normal”. Be sensitive to my need to rest often. And don’t expect me to be able to go as long or as fast as I used to do. I also don’t have the memory I used to. Treatment has taken things from me that I will never get back. Now I feel like I am slogging through marshmallow goop, both physically AND mentally. Another change is in attitude. Some things just don’t seem important to me any more. (Hopefully, I don’t yell at my kids quite as much.) And other things have become more important. For example, I talk to strangers more often now. When I have something to say, I say it! Don’t be surprised if I start dancing in the aisle at the grocery store. It can be a little disconcerting. If I embarrass you, you are free to walk away and pretend you don’t know me. But please don’t try to limit me. Let me spend the rest of my life doing exactly what I want to do!
14. Don’t edit me. Yes, it’s true – I do have “a lot on my plate”. But it is not your job to withhold bad news from me. I’m an adult. I don’t expect the bad stuff in the world to stop because I am fighting the cancer war. I don’t want to be left out of the loop. As long as I am alive, I deserve – and need – to live a full life, which includes knowing even the bad news, being able to share your pains as well as your joys. My body is failing me, but my spirit needs to support YOU in whatever way I can, for as long as I can. I don’t need protection from truth.
15. Go to the doctor’s appointments with me. Sometimes my poor “chemo brain” drops important information. It is very companionable to have someone with me in the various waiting rooms (maybe someday doctors will operate in a timely fashion…….nah, never mind -it’ll never happen!). And it’s great to have someone to talk to during an infusion drip. It is a good idea to have a pre-written list of questions. Again, a tape recorder can come in handy. And if the doctor is a little short or brusque, dig your heels in and be assertive. Help me to remember that although I am but one file in the doctor’s toppling stack of workload, I am the single most qualified protector of MY LIFE. I have every right to as much of the doctor’s time as I need. He (in my case she) certainly keeps me waiting long enough!
16. (Actually, corollary to 15.) If I don’t like the doctor’s advice, or manner, remind me that there are plenty of doctors out there, and I deserve a second (or third….) opinion. Cancer treatment – especially for metastatic disease, is not even close to refined yet. There is so much “art” and doctor’s judgment to it, that I should never be coerced into a treatment I don’t feel right about.
17. Respect my decision. There may come a time in this journey that I decide to lay down beside the road and stop fighting. If I make this choice, I know that you will be disappointed and dismayed. Maybe even furious. Please remember that it is my battle, and my decision. I know that you love me. I know that you want me to fight. But if that day ever comes, please understand that there is simply no more fight left. I promise you that I will never ever make that decision lightly.
18. If I am walking around bald from chemo, take the plunge. Shave your head! You would be surprised how refreshing it is to stick your head under a faucet on a hot summer day. (Don’t worry. I will not be in the least surprised if you “pass” on this suggestion. I can say in all honesty, I doubt if I would do it for you! )

I hope that these suggestions help you to understand what is TRULY helpful, in dealing with a friend or loved one who is battling a life-threatening illness. Of course, the most important thing you can do is to just be there. Listen. Perhaps your heart will hear what needs to be said or done. Bless you for caring, and may there be miracles enough for all of us!
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http://www.ibcresearch.org/left-side/ibc-in-our-own-words/what-you-can-do-for-me/
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My journey with IBC, by Barb

My journey with IBC

-By Barb

When I read about Inflammatory Breast Cancer I just knew it was too late, they had done everything wrong.  I had already had surgery – a bilateral mastectomy.  To top it off I didn’t have any chemotherapy prior to surgery and they had started reconstruction at the time of the surgery.  As I became educated about IBC, I was sure I was going to die and it was going to be soon.

My oncologist wouldn’t actually say the words “Inflammatory Breast Cancer” to me until two weeks after my surgery.  When I asked him what they had found when I was in the hospital after the surgery, he said we’d discuss it in his office.  When I saw the Surgeon a week later, she said they found a “sneaky” cancer.  I was concerned and confused.  What was going on?  Why wasn’t anyone being up front with me?  There is nothing I hate more than someone who doesn’t come to the point, just say what is on your mind, especially my doctors.

Finally at my two week appointment my oncologist tells me it is Inflammatory Breast Cancer.  He gives me some statistics, something about how aggressive it is and that we’ll need to begin chemo soon. I went home and straight to the internet.  Then I became really upset.  I felt like my doctors had completely failed me.  They had done everything wrong.  Why didn’t they know that this cancer was different from my last two cancers?  I told them that this time it was really itchy.  I told them that it looked like my nipple had been swallowed by my lumpectomy scar.  Why didn’t they really look at my breast?  I had asked for chemo before surgery because I had read that some Triple Negative cancers (which I have) respond better to chemo prior to surgery.  Why didn’t they go along with that?  Then I began to feel guilty.  Why hadn’t I taken on a stronger role in my care?  Why didn’t I look up the signs?  Why did I put all my trust in the doctors?  I should have been a better advocate for myself.

Then I had to get to acceptance.  That was the hardest part.  I had to accept that I had IBC that my treatment was not ideal for IBC, but it was what I had.  I had to accept that there was nothing more I could do.  But I couldn’t. I would seek out the expert in IBC to get a 2^nd opinion and if there was something more I could do, more chemo, more radiation, anything, I would do it.  I wanted to do all that I could in the early stages of my disease.  Now that I knew I was going to fight!  I found the expert, Dr. Cristofanilli in Philadelphia and my youngest daughter and I went to see him.  He confirmed that my doctors were negligent in diagnosing IBC.  They should have been able to see symptoms from the MRI – my right breast was twice the size of my left and they could see the tumor had clearly invaded the skin.  He said it is unfortunate but at this time too many doctors and patients are uneducated about IBC.  By the time I saw him, I had been through all my treatments, including 4 months of chemotherapy.  Dr. C (as his patients refer to him) told me we knew IBC was in me, we just had to find out where.  The fact that I was Triple Negative meant that it was highly likely I would have a recurrence.  Not great news, but at last a Doctor who was talking strait to me.  I finally had acceptance.  At this time there was nothing else I could do.  No other treatment.  Just wait.

With acceptance came peace.  I don’t worry about dying near as much, I enjoy living each day.  Yes, I have a new normal.  My body has been forever changed my cancer, chemo has taken a toll on me, but I’m here and I appreciate every new day.  I’m happy, full of joy and love.  I was never alone for any of my chemo treatments, my daughters were with me for all but one.  The one they missed, my Pastor came with me.  The treatments were never depressing they were times of fun and laughter.  My daughters are very well versed in IBC, thankfully I do not carry the breast cancer gene and they are aware of the new guidelines for their own screenings.  I don’t obsess about another recurrence; if it comes back then I’ll deal with it then.  I refuse to live each day in fear.  I have a beautiful granddaughter to spend time with; I’m going to be around for a long time!

A few more steps, By Elizabeth

A few more steps

-By Elizabeth D.

I was diagnosed with Stage IIIC Inflammatory Breast Cancer in February of 2007.  I noticed a little pink patch on the underside of my left breast, and got in to see my doctor.  She wanted me to get an ultrasound.  In the two weeks it took to get in, my entire breast turned red and the nipple inverted.

I had an ultrasound on a Friday, and the Dr. H did an immediate needle biopsy.  She was very compassionate and direct.  She told me that this was "very possibly" a cancer, and that the good news was that we were going to get all the information needed with that biopsy.  She made me an appointment with Dr. JB, a first rate oncologist and breast specialist.  She told me, "If I'm wrong, you can cancel it, but I don't want you to have to worry about setting that up.  Let's just get it done for you now." During the needle biopsy I was shaking and weeping.  The technician held my hand.

Now, knowing what I know, I can imagine being a fly on the wall and hearing,

"Hi Dr. B, HB.  I've got an IBC here, we need to get her in treatment right away.  How soon can you see her?"

In four days Dr. B called me.  By then I had resigned myself, mobilized my support system, and I was ready for the news.  Six days after the biopsy I was in Dr. Brown's office getting my full diagnosis, and ten days after my ultrasound I began chemotherapy.  Dr. Brown laid it out clearly for me.

"You have an aggressive cancer, and we're going to treat it aggressively.  I'm optimistic because I think you will be able to handle these treatments".   Ok.  Got it.  Handle the treatments.  Don't let them be interrupted, keep on truckin' till we're done.  I am not #%& leaving the planet, what do we have to do?  Let's do it.  I was a single parent of a 7 year old girl and a 9 year old boy.

I was dismayed that we couldn't just "get it off me".  It was inoperable, and I would need to do chemotherapy first.  The PET/CT scan that we did just as we started treatment showed an 11 centimeter sheet across my left breast, and two tumors of at least two centimeters under my left arm.

In less than a week I was beginning dose-dense chemotherapy: 8 infusions, at two week intervals instead of the standard three.  I received four infusions of Adriamycin and Cytoxan (A/C) and four infusions of Taxol.  For the last four infusions we would integrate herceptin, the relatively new (at the time) miracle drug for Her-2 cancers.  I would have that for a full year.  Then I underwent a modified radical mastectomy, which means the entire breast and all the primary lymph nodes under my left arm were removed. The sheet across my breast had shrunk to less than half a centimeter.  My doctors described my response to chemotherapy as "phenomenal”. 

The day after my surgery, I just felt so unbelievably blessed and fortunate!  I tried to express what was inexpressible with a Sharpie pen.  How fortunate that I am right-handed!  It was over a year later that I finally finished it with watercolor.

After that, I had a few weeks to recover and began six and a half weeks of radiation.

On the second day of my first round of chemotherapy, I hosted a head shaving party.

When I began the first leg of my pilgrimage (that's how I decided to see it) I got out a Sharpie and made a checklist with little boxes.  I marked out every treatment, every day I was affected by it (Wacky Wednesday, Tired Thursday, Bleak Friday, Lazy Saturday, and Comeback Sunday).  Then I checked off the boxes as I went.  Part One was Chemotherapy.  Part Two was surgery.  Part 3 was Radiation.  Then I added the extra herceptin infusions.

I began my "2007 Ironwoman marathon" in February of 2007, and I got my last dose of herceptin in May of 2008.  Today, in November of 2010 I am cancer free.  Certainly that could change, and part of me is superstitiously afraid that I am tempting fate to continue blogging if there is any possibility that I will not remain a "success story".

So what's that anyway?  I could go anytime in a number of ways, cancer being only one of them.  That's true of all of us, whether we're aware of it or not.  Perhaps it's closer to me than to most people.  It keeps me motivated to treasure, use and enjoy every moment I am blessed to be here.

Today I feel successful because I believe that I have completely transformed my life.  I invested a lot of energy in doing that, and a lot of tenderness. Now I do the things I love, my children are happy, I married the best husband in the world, and I am making a positive contribution to the world around me.  I write to provide hope and resources, any chance and any place I get. I am approaching landmark five years from diagnosis, and the longer I get to stay here on the planet, the more I want to give back. 

Currently I write for Associated Content, my own blog The Liberation of Persephone, and a blog for Everyday Health.  There can never be enough voices to get the word out and be heard.

Thanks for reading.

http://theliberationofpersephone.com/

http://www.everydayhealth.com/blogs/thriving-after-inflammatory-breast-cancer/enough-pinkwashing-make-october-face-the-facts-month

http://contributor.yahoo.com/user/919524/elizabeth_danu.html

My IBC story, by Claudia

MY IBC STORY
-by Claudia N.F.

How many times have we heard our doctors say: "check your breasts for lumps" and "have your yearly mammogram"?  What we don't hear and aren't told by our doctors is "check your breasts for ANY changes and tell your doctor when you notice them" and "there's a form of breast cancer that usually doesn't have a lump or show up on a routine mammogram”. Ever since I saw a slight pinkish‑red blotchiness on my right breast in early July 2007 and after doing online research with my daughter-in-law, I had the feeling that I had IBC (inflammatory breast cancer). 

In July 2007, at age 65, I contacted my doctor's office about some blotchiness on my right breast, suggested that it might be IBC (Inflammatory Breast Cancer) and was told it was an infection (mastitis). After three 10‑day rounds of antibiotics, in early August,  I was given a diagnostic mammogram, specifically looking for the sheeting or nesting of tumors in Inflammatory Breast Cancer. What is recommended is one 5- or 7-day round of antibiotics. If they don’t get rid of your symptoms, you should keep pushing until you get a proper biopsy. The results of the diagnostic mammo got me the biopsies I needed to finally get my diagnosis of IBC on August 10, 2007. Since it was finally confirmed that I had IBC (the highly aggressive and most deadly form of any breast cancer), I knew that my life was forever changed because of what was ahead of me in the way of treatment.

After consultation with an oncologist, I actually started chemo in early September. Unlike many others, I breezed through my chemo treatments and finished chemo in early March 2008 with little or no side effects. On April 18 I had my right MRM and went home the next morning. Due to a couple of disagreements with my surgeon, I only saw him once after he removed my drain a week after my surgery.

In June I started my 6‑1/2 weeks of radiation. My only problem with the rads was a slight burn in one area, which they didn't include for a few days and then added the rads there again at the end of my treatment. When I completed the rads and got my graduation certificate, I let out a big sigh.

After my rads, I started taking Arimidex pills to keep the cancer from returning. Arimidex is for post-menopausal women who are ER+ (estrogen receptor positive). For such a tiny little pill, Arimidex sure has a lot of side effects. I know...I’ve had every single one of them over the past 3 years. I had to pay over $300 per month for those pills until a point in 2010 when a generic, Anastrozole, came out. Now I only pay $10 per month for all those side effects. I’ve often said that every day is a new adventure; that I never know what I’ll wake up with: nausea and vomiting, diarrhea, stiff joints, hot flashes. My two favorites (NOT) are sleeplessness and weight gain. No matter what side effects I get, I will continue to take this pill in the hope that it will keep the IBC from recurring.

The thing that amazed me the most throughout my diagnosis and treatment was the lack of knowledge that the general public and the medical professionals have about IBC. I almost cried when a worker with the American Cancer Society told me she had never heard of IBC when I was first looking for information and some local support.  I was told they couldn’t help me at all. They didn’t even mention other ways they could help anyone who had cancer. I knew that even though I had retired at the end of 2007, I had a real job ahead of me. I knew I could make a difference by trying to educate locally here in South Florida. I started volunteering with the Inflammatory Breast Cancer Foundation in 2009. Every time I go to any type of doctor or for any testing, I take along my IBC brochures and my business cards. In fact, they go everywhere with me. Even a telemarketer doesn't escape. I will only listen to them if they listen to me first.

My mission in life now is to educate anyone I can about the signs and symptoms of IBC. I started with my PCP after the biopsies confirmed that I had IBC. I told her that rather than starting with surgery as in "regular" breast cancer cases (and as she told me I'd be doing), I would be starting with chemo prior to surgery. Since IBC is highly aggressive, you have chemo first to reduce the tumor size prior to surgery.

After my mastectomy, my oncologist told me that I might not need rads since there was no evidence of cancer in my breast or lymph nodes per the pathology report. I told him that I would feel better having some rads as recommended for IBC patients in the NCCN Guidelines, even when you have a positive response to chemo and mastectomy. He got a copy of the Guidelines and put them in my file. He asked me how I knew that, and I told my "my online support group". I honestly don't know where I'd be today without that wonderful group of men and women.

As for my surgeon, I no longer see him for several reasons, one being he did not do an axillary node dissection at the time of my mastectomy. His reasoning: he wanted to keep me from having lymphedema. My reasoning for not seeing him again: I'd rather he have followed the NCCN Guidelines and did the axillary node dissection and tried to save my life, instead of doing the sentinel lymph node biopsy he actually did. The axillary lymph node dissection is recommended for IBC patients.

Just in case you wondered, here are the signs and symptoms that may indicate you have IBC:

1. One breast swelling in size or thickening, sometimes overnight.

2. One breast warmer to the touch than the other.

3. Breast discoloration, including an area that is red or bruised.

4. Appearance of a breast bump resembling an insect bite.

5. Change in skin texture, resembling the pitted skin of an orange.

6. Persistent itching that creams/salves do not alleviate.

7. Nipple changes (flattening, inverting) or discharge.

8. Swollen lymph nodes under arm or above collarbone.

You do NOT have to have all the symptoms to have IBC. Most women or men have only 2 or 3.  I only had one symptom: the breast discoloration, which I called a slight blotchiness when I described it to my doctors. The main thing to remember is to give your doctor a call if you get any of these symptoms. If your doctor does not take you seriously, find one who will. It’s your life that’s on the line.

http://www.youtube.com/watch?v=jknpNkIC05c

My story, by Pat

My story

-By Pat, Eastport, Maine, USA

I woke up on the couch one morning in mid April of 2007.  My husband had just had open heart surgery, and still being unable to lie flat, was sleeping next to me in the recliner.

My first thought was that something terrible had happened, but he was sleeping peacefully, the house was quiet...even the cats weren't awake yet.

Then I realized that the problem was with me.  My right breast felt hard, and I could feel the heat of it through my sweatshirt. I quietly got up, closed the door of the bathroom, turned on the lights and was horrified at what I saw.  The breast was bright red and hugely swollen.

In the past decades, I had found two lumps, one in each breast.  Both lumps were benign, and both had been excised. That experience made me a believer, and I religiously did monthly self exams and had annual mammograms.  I knew I hadn't had felt anything different up to now. This MUST be an infection, or maybe I pinched it badly in my sleep on that old couch... but there was this voice inside that said, no - this is bad.

I decided to say nothing for two weeks until my annual physical with my primary care doctor.  Maybe it would resolve itself...maybe not...but it would give my husband a couple more weeks of less stress & more healing.

Meanwhile, I researched the internet, tried my best to run a fever, (this MUST be an infection!), learned everything I could about breast diseases, found the IBC site, looked at pictures, and slowly came to terms with the truth.  I had breast cancer, and it was IBC.

My primary care doc, bless her heart, took one look and did three things: set me up with a diagnostic mammogram at a place where they had the newest digital equipment, made an appointment with a local surgeon who had the first available time slot for a biopsy, and gave me a prescription for antibiotics.  By this time, I could feel a small lump near my nipple, and I was getting shooting pains through both breasts, both armpits and up into my neck.

It took all the courage I had to tell my husband.  He was wonderful...telling me we were just getting all our health issues out of the way this year, and next year will be great.  Thankfully his recovery was going well, and we were back in our own bed!!

They were gentle on the swollen breast, but the mammogram on the unaffected breast hurt so much that I threw up on the technician's shoes. Then it turned out that there was no one on site that could read the results.  I left in tears.

Days later, the local surgeon told me the results of the biopsy.  It was breast cancer, but not IBC, because the skin punch came out fine.  He then proceeded to explain that he had studied under a breast surgeon, and had done three mastectomies himself, and he obviously expected to do mine as soon as possible.  I left his office and called my PCP in a panic.  This was NOT going to go down this way!  She found another surgeon in a large regional hospital, and I waited another week.

The new surgeon biopsied an enlarged lymph node, and set me up with a chest x-ray, a ct scan, a bone scan, and an oncologist...all in 24 hours.  The oncologist had me go for a Muga scan and MRIs on both breasts, and for the first time, I saw my pathology report.  It was invasive ductal carcinoma, tumor grade 3, er-/pr- and her2 positive.  It was in my lymph nodes, and in spite of the negative skin punch biopsy, it was IBC.

It was the end of May. The small lump that I felt at the beginning of the month was now five centimeters in diameter.  I made the eight hour drive to break the news to my 87 year old mother, and to the rest of my family.  On June 1st, I had a port-a-cath implanted, and on June 4th I had my first chemo.

My oncologist had recommended Adriamycin/Cytoxin every two weeks, and I had expected that. Following that, Taxol with Herceptin would be infused once a week for twelve weeks.  Herceptin would continue every three weeks for a year.  Then I would need surgery and radiation.  And that's exactly what happened.

I felt very lucky, even at the beginning.  When my husband got sick, I was unemployed, but decided to buy health insurance on my own - after all, he's just two years older than me - I could get sick, too!  I had a small pension from a job I had years ago, so I applied for that early. It was a greatly reduced amount (I was only fifty-six), but it paid the premiums.  Without that, we would have lost everything to health care costs. I was able to get Social Security disability in five months.

Chemo made me sick, but I felt I had an excellent medical care team: warm, responsive and knowledgeable, and hubby, family and friends were ultra supportive....and hubby COOKS!! 

By October, at the end of chemo, my breast was looking wonderfully normal.  After the mastectomy, my surgeon called to tell me to say that I had had the most miraculous response to neo-adjuvant chemo that she had ever seen. There was just a tiny bit of DCIS left in the affected breast, but nothing else. I cried more that day than I ever did before.

Radiation went fine - no terrible burns - and by the end of that, I was brave enough to expose my newly fuzzed out scalp to the world. I finished Herceptin infusions in July of 2008, and I am now without evidence of disease.

But there were scares!  There was an episode of chest pain that turned out to be costochondritis - after much cardiac testing and scans. I had severe headaches that turned out to be migraines...after yet another scan. 

I've been left with thinner hair, slight lymphedema in my right upper arm, low energy, and painful neuropathy in my feet.  And it seems I have chemo-brain!  Some say that all may improve over time, but I'm loving the time I have right now. We have a new grand child; we have a new (to us) boat, and spend time on the ocean. We're able to travel and enjoy family and friends.  I'm involved in a project to help the elderly stay in their homes longer, and a local committee to find ways of coordinating help for other cancer patients.

And I am so lucky to have access to the internet and the IBC support site.  I can't begin to say how much it helps me cope. All those wonderful people taught me how to survive being an IBC patient.

When rare cancer came her way, she seized life, signed on

When rare cancer came her way, she seized life, signed on

-By Ginny Mason, West Lafayette, USA

After months of pain, itching and swelling in my right breast, I was finally going to get an answer.

The surgeon entered the room looking quite serious, sat down across from me and took my hand. "Not a good sign," I thought to myself.  He said, "You have inflammatory breast cancer. ... On a scale of 1 to 10, this is not the one you want."  I looked at him and, in my typical optimistic way, said, "I didn't know I wanted any!"

His expression didn't change, and that's when I knew this diagnosis wasn't good. I was 41 years old and had no family history of breast cancer, so how could this be?

The surgeon explained I needed to start chemotherapy immediately. Then he led me down a back stairway into the cancer center. Two oncologists looked up when they heard us, and one said, "Is this the woman we talked about last night?"

Again, that feeling of "this doesn't sound good."

I was taken to an exam room where my vitals were checked, then was told about the proposed treatment. As the oncologist finished telling me about the various chemotherapy drugs and the anticipated side effects, he said, "You'll need to call someone to drive you home because one of the drugs will make you drowsy and not safe to drive."

I looked at him in amazement and replied, "I can't call my husband and tell him to come get me because I've just had chemo. He doesn't even know I have cancer!"

I assured the oncologist I would start chemotherapy on Monday but needed the weekend to tell my family about the diagnosis and make some plans.

I don't remember thinking, "Why me?" Instead, it was "Why not me?"

Driving back to work I saw a banner that proclaimed "1 in 10 women will be diagnosed with breast cancer." Great! I'd saved nine of my friends.

When I got back to the outpatient mental health clinic where I worked, I tried to go on as if nothing had happened, although my thoughts were churning. Mentally I sped through all five stages of death and dying made famous by Dr. Elisabeth Kubler-Ross, finally arriving at acceptance.

Before leaving for the day, I checked with my supervisor, a psychiatrist, about taking Monday afternoon off. He was quick to agree and kindly asked if everything was OK, so I shared that I had a medical appointment. He nodded and said, "Nothing serious I hope?"  When I explained I was starting chemotherapy for aggressive breast cancer, tears filled his eyes. It was the first time I'd come close to tears myself, and I said, "Don't do that. I'm barely holding it together."

While driving home from work through a downpour, I rehearsed how to gently break the news to my husband. The oncologist had said that even with aggressive treatment I would probably live only 12 to 18 months.

How could I tell my husband of 24 years this news?

When I arrived home and walked in the door, my carefully planned speech dissolved and I blurted out something like, "I've got this awful kind of breast cancer, and I'm going to die!" Poor guy, he was stunned. We fell into each other's arms.

As we cried, the storm outside gradually subsided. Spent from our tears, we looked up and through the window saw an amazing rainbow. At that moment, we knew that whatever the outcome, it would be all right.

It's what we didn't know that makes me shake my head now.

After an emotional weekend sharing the diagnosis with family, friends and our congregation, I returned to work. I'd gotten my waist-length hair cut the night before in preparation for chemotherapy. Co-workers were shocked to see my short hair, and that opened the door for me to say, "Don't get used to it, I'm going to lose it all with chemotherapy." I wanted to be open about my diagnosis because I had to have the help of my colleagues to manage my workload, and I also needed their emotional support.

People needed to understand that my immune system was weakened by chemotherapy and I had to be careful about infections. They got used to seeing me wear a mask in addition to my array of hats and scarves.

For the next five months my life was a series of doctor appointments, chemotherapy, medical tests and lots of fatigue. I managed to keep working, thanks to an understanding employer. Many meals, lots of prayer and other caring acts helped get us through the day-to-day challenge of living with cancer.

After months of intensive chemotherapy, I underwent a modified radical mastectomy -- the removal of the breast and lymph nodes -- followed by six weeks of daily radiation.

Finally, it was over. It would be three months before I saw the oncologist again. My hair was starting to grow back, and everyone thought I should be excited to be finished. Don't get me wrong, I was excited, but it also was frightening to end active treatment. For the first time in many months, I wasn't under medical surveillance.

What if any remaining cancer cells flared up? What if I didn't notice something important?

I began to worry about every little ache and pain. Having cancer changes people, and that can be difficult for family and friends to handle. For some, a cancer diagnosis is immobilizing. But in my case, I was motivated to seize life.

I had always been a quiet person, not wanting to be in the spotlight or speak in public. But the diagnosis changed something. I began speaking out to raise breast cancer awareness, started a breast cancer support group and went back to school, ultimately earning a bachelor of science degree in nursing in 1999.

While in Alaska to celebrate my graduation and five-year survival, my husband and I arranged to meet a man who had lost his wife to inflammatory breast cancer and had just filed the paperwork to incorporate the Inflammatory Breast Cancer Research Foundation as a nonprofit. As we talked over lunch, it was clear we shared the same vision and passion.

Twelve years ago, I signed on as a volunteer for the foundation. In 2003, I gave up my day job to devote my full-time energies to the grass-roots organization, working from home as executive director.

Just about everywhere I go now I hand out information about inflammatory breast cancer, reminding people that you don't need a lump to have breast cancer and that any breast change that doesn't resolve itself in two weeks should be evaluated by a health care professional.

When I received the cancer diagnosis, I would not have imagined that I would one day stand before large audiences, help develop cancer research projects and clinical trials, serve as a consultant for the Food and Drug Adminstration, or be a part of oncology conferences in the U.S. and abroad. I could not control what happened to me 17 years ago. But I found a life-affirming way to respond.

That's a good sign, right?

To learn the typical symptoms of inflammatory breast cancer, visit http://www.ibcresearch.org/.

Grammy

Grammy
-By Kate, from PA

A pink crescent on my skin near my armpit-what the heck is that I wondered?  It looked like irritation from my sports bra, strange but not worrisome. I had had a bilateral mastectomy just 15mos before after a diagnosis of LCIS in my left breast. With an extensive family history of breast cancer, I went all the way to save myself from cancer. I even had immediate reconstruction using tissue from my abdomen, and was happy with the outcome. So this could not be cancer - right?  WRONG.

The pink rash continued to spread downward into my left breast, which started to swell and become painful as I searched for a diagnosis. I was treated with antibiotics by my family practitioner, and then had an MRI ordered by my plastic surgeon. I went to see him because I thought something was wrong with the transplanted tissue. He wanted me to see a dermatologist, but listened to me when I told him that prescription and over the counter creams were having not effect and I just knew something else was wrong with my breast. He did a punch biopsy, and the next day I had my answer. Not only was it cancer, it was Inflammatory Breast Cancer, something I had never heard about.  With tears pouring down my cheeks, I turned to the internet to read about IBC.  I found out that it is rare, aggressive and kills-sometimes in as little as 18mos.  I was in utter and complete shock......

After extensive testing (PET, CT, and Bone Scans, bloodwork etc) I found I was Stage IV, HER2+++ with mets to L4 and the first right rib. I had been catapulted from successful breast cancer warrior and survivor into IBC land and a death sentence. It was hard to comprehend after all I had done to avoid breast cancer.

Two and a half years later, I am still on chemotherapy and still fighting progressions. My latest progression is a few skin met bumps under the skin near my right scar line. I am told that skin mets are hard to treat, resistant and persistent. This is not good news for someone who has been trying so hard to reach the coveted land of NED, or at least a state of no active disease for a time.

Oh, and I will never be a survivor, unless a cure is found.

"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.