Hello,

I am a soon-to-be survivor of inflammatory breast cancer.  I take the time to tell my story in the hope that someone else will benefit from early detection and treatment.  I was forwarded an email chain by an e-friend in April last year telling the story of a young mother's fight and eventual loss to inflammatory breast cancer.  It was a sad story that brought a tear to my eye, but more importantly outlined the symptoms of the disease.

I was young and bullet-proof, and I deleted the message.  A month later, I started a new job in a department of all women.  At lunch, the department supervisor announced she was going for her annual mammogram and that it was time for us all to do a self examination.  That usual announcement got me thinking and I checked.  There was a lump - small, slightly tender and elliptical - on the side of my right breast.  I showed it to my husband, who commented that he had noticed that week the tissue around my nipple was slightly thickened. We also noticed a small area of rash rather like a light sunburn around the aureole.  No itch, no sting, no soreness, just slightly redder than normal.

I made an immediate appointment with my doctor.  She sent me immediately for a mammogram, and in the meantime suggested this might be mastitis or some other type of infection.  She gave me a course of antibiotics in the meantime and we waited for the mammogram results.  The mammogram results indicated an area "believed to be benign".  I went back to the doctor.  She sent me to a surgeon, who told me he had seen inflammatory breast cancer and this wasn't it.  He did a skin biopsy, with the results being "inconclusive" and prescribed an anti-inflammatory for a "non-specific inflammation".

At the end of that medication, with no change except increased reddening, another stronger anti-biotic was prescribed.  Finally, the surgeon sent me for an ultrasound of the breast.  The radiologist immediately biopsied the lump, gave me all kinds of reading material, and sent me back to the surgeon for another skin biopsy that same day. 

The next day, as I was packing for the annual family vacation, the surgeon called with the diagnosis. My husband was out running a few last minute errands, and I was alone with my youngest daughter, 15.  I managed to stay standing, but had to lean on the counter for support as he started talking about how bad this form was.  My daughter overheard and came running.  In a role reversal I hadn't thought would come for decades, she held me while I cried and gave me her treasured teddy to hug.

My parents left on an extended mission for our church the day after my diagnosis.  I debated not telling them until they were well away, but decided it would be easier for them if my disease was part of the package while they were away. We cut our vacation short, taking a week to go "home" so I could be with my family and take a couple of deep breaths before diving into treatment.  Two of my aunts and a cousin are recent survivors of other types of breast cancer.  Their love and support was wonderful, as were their examples of determination to fight their disease.  My husband spent his time trying to keep me from seeing how devastated he was, and keeping the less sensitive relatives from driving me crazy.

We got home and went straight to the oncology department where I was scanned and x-rayed and poked endlessly.  The result of that being the good news that no other cancer was discovered.  So on to chemotherapy - Adriamycin, Cytoxan, 5FU and Tamoxifen with a 5FU booster a week later.  Those months, I remember in groups of 2 weeks of sleeping, followed by a week of marginally "OK", repeated 4 times.  Veins gave out, I had bad experiences in Emergency rooms, and started having hot flashes. A couple of weeks off to regroup, then surgery.

The mastectomy itself was not the worst thing, but there are a few things about it I would change if I could.  The worst thing about this whole experience was being left alone before the surgery.  My first and strongest instinct was to run screaming from the hospital, and here I was being asked to walk myself in under my own steam, and of my own volition lay down on a table and let someone cut off my right breast.  I had never felt ill because of the cancer, only because of the treatments. How could this be right?

There was a delay in starting my IV, and my husband was not allowed back to wait with me until the IV was in place, so instead of 10 minutes or so, I was alone with these thoughts for over an hour and a half.  After the surgery, I was encouraged to go home before I had been there even 18 hours.  I was lucky in that I had good help at home.  If I had it to do over, I would stay another day at least.  It is too difficult to care for your own chest drains when your right arm doesn't work. 

The pathology reports from the surgery were the best possible.  No cancer found in the breast or the 17 lymph nodes removed.  On to the next round of chemotherapy.  I reacted badly to the first Taxotere treatment - my left arm turned purple from wrist to elbow and remains so 3 months later.  I finished off chemo on Taxol last week.  Next week, I start radiation therapy for 6 weeks.  After that, I am being kicked out of the oncology department...hopefully for good. 

Through it all, the most wonderful things have happened.  My daughters, aged 18, 16, and 15 and my son, 9 have learned they are capable of doing a great many things for themselves.  My husband has learned that he is the most important person in my life.  The children have seen how much their parents love each other.  They have learned (without losing me thank goodness), that life is sometimes short and always precious.

We have found many friends, new and old, who have stepped up to help in many different ways. These good people have fed us, given chemo treatments, driven us where we need to be, entertained us, waited with us, prayed with us and for us, cried with us, laughed and celebrated with us. At Christmas, we received an anonymous visit from Santa, who brought bags of gifts obviously chosen with each individual in mind. The only note stated simply that Santa was aware that Mom wasn't up to shopping much this year, so he and the elves had decided to help out.

Our family has been permanently changed by these kindnesses.  Our children are looking forward to being the ones who help now that they see how important it is to those in need.  No one does this alone.  My husband and I have grown closer and more in love and more patient with each other and the children, and more inclined to speak out when we feel the cause is important.  We take nothing for granted any more.

This battle isn't over yet, and may never be. We will always be aware of the threat of recurrence, but that will not stop us from enjoying the second chance we have been given.

Roberta

Thanks so much for sending your moving story. I find that recent survivors' stories are so full of emotion, much more so than others'. I am 34, and a 2 year survivor. Mine wasn't inflammatory, they called it "extensive, invasive, ductal carcinoma" and I had 8 of 13 positive lymph nodes. I also had mastectomy and chemotherapy and radiation (let me tell you, radiation is absolutely a breeze compared to everything else!)

And you're right, something good always comes out of hard times. My cancer has brought my whole family closer together.  It's also amazing how many people seem to help in so many ways.