Medical Decisions and Outcomes: How Satisfied Are You?

Medical Decisions and Outcomes
Decisions about treatments-sometimes the results are good, and sometimes not so good....
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What is DCIS?

by Marion L. Head

I have a 12 inch, jagged purple scar that goes from under my arm pit to my sternum where my right breast used to be. My arm and chest feel as though I am wearing skin that is a size too small and binds whenever I move. Beneath my right arm it feels as though there are claws dug into my skin that grab and hold every time I try to extend my arm. Six weeks after my mastectomy I still don’t like to look in the mirror and I go to massage therapy weekly to try to get back the range of motion in my right arm. I still don’t feel as strong as I once was or as energetic. I really just don’t feel like myself.

A year and a half ago I was called in by the radiologist after a routine mammogram and shown the digital image of my right breast. So began my journey with DCIS, or Ductal Carcinoma In Situ. All I saw on the computer screen were tiny white dots, as though a small amount of sugar had been spilled. The radiologist said they were calcifications and could mean DCIS. She ordered a biopsy which confirmed the presence of DCIS. I was then treated with a lumpectomy and radiation and told I would be carefully monitored every six months for a reoccurrence.

What is DCIS? I was told it is abnormal cells that are in the milk ducts and technically are not cancer but pre cancer and if left untreated could possibly break out of the milk duct and becomes invasive cancer. That was enough to make me a believer--I don’t have to hear the “C” word more than once. I felt lucky that I had only had a lumpectomy and a week of radiation. I even put up with a lot of pain after the lumpectomy which no one could explain until I went to a massage therapist who loosened the muscles wrecked by the surgery.

I went in for my one year mammogram and once again got the call back from the radiologist. More white specks, another biopsy. The biopsy showed the DCIS was either back or had been so microscopic as to be undetected after the first surgery. I met with my surgeon and mastectomy was the call. I agreed but began to wonder.

I started researching DCIS and it became obvious that while it is now one of the most widely diagnosed breast “cancers” due to digital mammography no one really knew much about it or has done much research. No clinical trail has yet to be done in which treatment was withheld from women with DCIS until it was large enough to be felt, so no one really knows for sure how often it would become invasive breast cancer. It’s strictly guess work and surgeons are being overly cautious and recommending mastectomy when DCIS reoccurs.

What’s most troubling from my standpoint as a patient is that DCIS gets lumped together with all other kinds of breast cancer and yet it does not follow the normal path of cancer by metastasizing and is basically not life threatening. But my treatment option, mastectomy, was the same as invasive cancer because of the chance, some say 14%, others say 50%, that it will become invasive cancer. Do I have breast cancer? Can I wear my little pink ribbon with pride or am I a victim of a lack of research? And does it really matter because I still only have one breast?

On the day of my mastectomy I said to me surgeon, ‘I bet in ten years you won’t be doing this for DCIS.’ And she replied, ‘Probably not.’ I can’t help but fantasize about the time in the future when someone discovers that DCIS is not a cancer threat and all of us who had mastectomies will be vindicated in doubting the decision. In the meantime I have to look in the mirror every morning for the next 20 or 30 years.

My Struggle With Vitiligo

By Ronel Rupnarain

I was on vacation when I discovered it. I stared at it. It looked weird, usual and a little disgusting. If it were not on my skin, I would have thought it never existed. What was it? I stretched my right eyelid to get a better look at it. It was a small white patch, about the size of a crayon tip, peeping through the rest of my brown skin and it itched like hell. I frowned. Could it be a rash of some sort? It didn’t look like a rash. It looked like the colour of my skin was wiped away and its bare canvas was hideously laughing at me.

“You have a rare skin disorder called vitiligo,” the doctor said gently. “I have what?” I asked. “Vitiligo. A disorder that causes depigmentation in patches of skin, those patches are usually white and itchy, they tend to grow over time.” His explanation kept going on and on but I was just anxious to get my medication and leave. “Alright doc, can it be cured?” I asked quickly before he could launch into other confusing medical lecture.  “Right now, no. Unfortunately, there is no conclusive evidence that proves it can. But there are treatments that might be able to help.” I had barely listened after no….

The vacation soon passed and it was time to go back to school. I remember staring at my vitiligo; it grew so much that it covered my entire eyelid. As I stepped into the schoolyard, I hoped no one asked me what it was. I walked around with dread in my heart and a plastic smile on my face. Is she looking at my vitiligo or me? What if she thinks I am a freak? Don’t look her in the eye look at the floor; yes, the floor won’t stare back with curious, nauseating eyes. “Hey Ronel, I just wanted to know… Err, what’s that white stuff by your eyes?” Oh my god, she asked me about it. She is sickened by it; she won’t be my friend anymore. Everyone is ganging up on me. Everyone thinks I’m ugly. I am ugly. I’m going to vomit. “It’s…. it’s nothing.” I said running off to the girls’ toilets, knocking everyone out of my way, passing the entrance, into the closest stall and vomited.

I refused to go to school the next day, I couldn’t deal with my friends and other students staring at my disease anymore. It was quickly covering my face and the treatment that I was using did not help improve it either. I was beginning to lose faith in myself, my confidence was down the drain, every move was an uphill battle and everyone’s stare was of pure disgust. I felt like I was drowning in a sea of emotional turmoil alternating between rage and unfathomable sorrow. I had hit rock bottom for sure, but you would never hear me say that. I was determined to fight this disease on my own. It was my battle. A battle that seemingly had me beat.

Sensing my deep depression, my mother had taken me to the dermatologist for one more try. I remember walking into the white room in the doctor’s office; the walls were covered with info-charts and bland paintings. Why would anyone hang paintings in a doctor’s office? It didn’t help me feel better. I spotted an Indian doctor behind his big, wooden desk, which was laden with papers. I had never seen this doctor before; I guessed he was new. I sat down in the uncomfortable leather seat and thought, “This feels like déjà vu. Whatever this new doctor says, it’s not going to work, don’t kid yourself.” I spent the visit looking at my nails, my shoelaces, trying to read the papers on the doctor’s desk and wondering what was on TV. I couldn’t care less about what the doctor was saying, honestly, his vacant words meant nothing.

He prescribed Protopic; a new treatment for vitiligo suffers. I detested how the doctors termed me a “vitiligo suffer”, he had no idea what suffering was. Apparently, this medication worked fast and showed significant improvement. Had I not heard that lie before? I was alone in my room, staring at the treatment. I remembered the look in my mother’s eyes; did this treatment have the power to change it? Maybe. What if didn’t work? I had nothing to lose. The directions said I had to apply it twice a day, every day. I squeezed the white ointment onto my index finger, took a deep breath and applied it….

It has been nine months since I started using protopic and I am elated to say that I am cured of vitiligo. It so happened, that doctor was right, protopic helps. My attitude has changed.
My struggle with this disease has given me more than it had taken. I now have an inner strength that can propel me to accomplish anything; it has taught me never to allow anyone to crush my spirit and never to give up in the face of adversity.

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