My Personal Experience Recalled
Part 1 of 5
All material on this blog is provided for information purposes only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, Readers should consult appropriate health professionals on any matter relating to their health and well-being.
The medical information and opinions expressed here are believed to be accurate, based on the experience, memory and best judgement available to the author, and readers who fail to consult with appropriate health authorities assume their own risk of injuries & consequence. This content is intended for entertainment purposes only. LRBF Jan.17, 2011
A Little History..
Thirteen Years Ago
Biopsy No. 1
I didn’t have cancer. I had LCIS ~ three times.
LCIS is Lobular Carcinoma In-Situ... "Abnormal cells within the lobule that don't form lumps. They can serve as a marker of future cancer risk."
(from Dr. Susan Love's Breast Book by Dr. Susan M. Love, 5th edition)
Lobular: Lobules produce the milk / Carcinoma: Cancer that begins in the skin or other tissue that cover or line an internal organ / In-situ: In its original place
About thirteen years ago, around the time of my first of 3 biopsies, there wasn't a great deal of information on the subject of LCIS. Doctors weren't sure that it was even a 'true' pre-cancer, because the research indicated it wasn't capable of becoming invasive, so erring on the side of caution, a bi-lateral mastectomy was sometimes recommended, if there was a strong family history of breast cancer. Not the direction I intended to go.
But, by the time I was diagnosed with LCIS the first time, they were recommending the option of close monitoring that included a mammogram every 6 months for about a 2 year period. I was informed that LCIS wasn’t cancer or even a true 'pre-cancer.' However, they felt it needed to be watched because it was a high-risk marker for developing cancer during my lifetime. Uh huh..
In the ten years between my first biopsy and what hopefully, was my last surgery 3 years ago, there was a 10 year study that indicated LCIS was capable of breaking out of the lobules to become ‘invasive.’ In the final phase of this post (5 of 5) I’ll elaborate on why this update was so important. Meanwhile, they were still only recommending close monitoring for LCIS.
Dr. Susan Love's Breast Book 5th Edition: Chapters/Indigo: http://www.chapters.indigo.ca/books/Dr-Susan-Loves-Breast-Book-Susan-M-Love-Karen-Lindsey/9780738213590-item.html?ikwid=the+breast+book+dr.+susan+love&ikwsec=Books
To look inside the book, go to this site:
Dr. Love's Research Foundation
Three Years Ago
I'd just had breast reduction surgery (to be explained in subsequent Part) less than a week ago and had missed the surgeons follow-up call regarding the biopsied breast tissue. I was re-playing his message and wondered.. was he choking up? He was definitely upset and I was responding accordingly. When you believe your surgeon might be upset, while he's instructing you to call his office right away, then I was pretty sure I should be a bit upset too.
“I’ve been a surgeon a long time. This pathologist is even older and he’s never seen anything like this. I have to fly out of the province today so please call the office asap and get my instructions. I’m so sorry I'm unable to talk with you now, but I do have to leave shortly (long pause and a sigh). Please call right away.”
It’s true when they say you aren’t likely going to hear the rest of what the doctor is telling you once the ‘C’ word registers in your brain - which is why it’s recommended you take someone with you to an appointment. An unanticipated phone message didn’t allow for that luxury, and while he never actually said, ‘Cancer’ that’s what I heard between the lines. What else could he be so upset about?
By the time I was able to call his office he was gone. I was told that he’d arranged an appointment with a breast surgeon for Monday. This was Friday and that was too damned fast to be reassuring. The fear sitting in my brain was spinning. I asked for the details of the pathologist’s report, but because I didn’t have a fax number and she didn’t have a scanner, I asked her to please type out the vital information on the report and send it in an e-mail, immediately.
With 3 biopsies behind me in the preceding 10 years, I knew what most of the terms associated with a biopsy meant; atypical hyperplasia, sinister, calcifications, clear margins, involved margins, clustering, in-situ, malignant, non-malignancy, lymph nodes, ductal hyperplasia, fibrocystic, etc.
But, the rest of my experience with LCIS is to be told in the 5th of 5 posts on this subject...
The Beginning and Worth Repeating
Ten years earlier and within about a 2 year period, I had undergone 3 breast biopsies. Two of the three, had followed mammograms that showed ‘sinister cells’ gathering inside a breast lobule. They'd been diagnosed as LCIS.
At the time, LCIS was considered to be a pre-cancer without evidence that it would ever become invasive - so not really a 'true' pre-cancer. Prior to this, LCIS dictated a bi-lateral mastectomy because they just weren’t sure what its' capabilities were in regard to breaking out of the lobule to become invasive cancer. By the time of my first biopsy, they'd decided that the best thing to do was close monitoring. This meant 6 month check ups with the oncologist, my GP and a mammogram.
The first biopsy went well.
Prior to arriving at the hospital for the 'day surgery' procedure, I was required to meet the radiologist at the imaging centre very, early in the morning for a final mammogram. The purpose was to insert a 'guide wire' via a fine needle, into the breast and pin point (for the surgeon) exactly where the 'cluster' was located, while my breast was flattened and viewed on film. This would enable the surgeon to easily locate and perform the excisional biopsy. Because he was dealing with a micro-calcifications and not a lump, this would prove to be very helpful in eliminating any guesswork.
Unfortunately, for my poor breast it meant being subjected to the usual 'flattening' process. While I stood with my breast firmly attached between the plates, the radiologist and technician went back and forth, from me to the film, in an effort to determine the precise location. After several tries they were successful and marked my breast with ink and inserted the needle, leaving a length of the 'guide wire' hanging from it - X marks the spot, as they say.
I very gingerly got myself dressed and my husband Terry, drove me directly to the hospital. Upon arrival, I was instructed to change into a surgical gown, hat and booties and was escorted to a gurney, alongside other surgical day-patients. I grew more tense with the waiting. It was well past my designated surgery time and my growing anxiety level wasn't helping me relax. I kept checking the clock on the wall, while my husband sat patiently by my side, holding & stroking my hand.
Because the surgeon was behind schedule, he ordered a sedative to help me relax, delivered by way of a needle in my hip. That served to keep me 'chilled,' so to speak, until he was ready for me.
They finally wheeled me to the OR where the surgeon discussed exactly what he would be doing, while the nurses and anesthesiologist set up. It had been decided that I would go under a general anesthesia and allowed to sleep it off before being sent home. Although, mostly these days, a local anesthetic is used and the patient is able to go home much sooner. Not to mention the potential danger and after effects of going under a general anesthetic for any procedure.
My breast had been clearly marked with a pen and the guide wire, so I felt secure that they would serve, adequately as his road map and I would not have to worry about losing something that hadn't been scheduled for removal.
He was a very serious man and though I’m the type who will make witticisms in these situations, he forged ahead unsmiling, describing how he would remove the lobule that held the ‘sinister cluster of calcifications’ along with some surrounding tissue to ensure the margins were not involved. Still feeling pretty relaxed from the pre-op shot he'd ordered for me, I smiled up at him, nodding and agreeing. When I woke up, I expected to be back in the out-patient area but because they'd been so backed up, the out-patient was closed, so they'd put me in a private room.
Terry was sitting by my side and asked how I felt before calling the nurse to let her know I was fully conscious. By the time she came to the room, I'd fallen fast asleep again. When I fully awoke a few hours later, I was instructed to make a follow-up appointment with the surgeons office to remove the stitches in one weeks time.
My overall experience from beginning to end that day, had been relatively easy, certainly comforting. I felt taken care of... looked after, and I believe that because of this feeling, my recovery was quick and uneventful. Now all I had to do was face the biopsy results.
One Week Later
After removing the stitches, the surgeon asked me to get dressed and join him in his office to discuss the biopsy results. I noted his usual, somber demeanor as he shuffled papers on his desk, waiting for me to take a seat in front of him.
"You have LCIS. Lobular Carcinoma In-situ.” He continued, intending to clarify what he just said. What I heard was, ‘Cancer’ which I'm sure he saw by my face. He quickly assured me it wasn’t cancer and described what LCIS was, in detail. But, I felt no sense of relief and more than a little afraid - though I tried to put on a braver face than I was feeling.
I knew I would have questions. I wanted to be in control of this. I had been doing my own research from the time I knew that ‘sinister’ looking calcifications were lurking inside my left breast. I'd read everything I could find in books and on the internet about breast cancer in general. Now I would find out exactly what LCIS was.
Dr. Susan Love's Breast Book
My 'default' resource for information was ‘Dr. Susan Love's Breast Book’ (refer to link at top of page). Dr. Love is an American, breast surgeon who has written a quintessential book on the breast. She's a frequent, featured guest on the subject of breast cancer, appearing on the major, morning talk-shows. Her book (updated again in the current (5th) version) is considered the single most authoritative guide to breast care.
I was comfortable and confident in Dr. Love's Harvard credentials, her commitment to breast cancer research and her overall experience on the subject of breast cancer. I felt armed with the kind of information I would need in order to carry on an informed discussion with the medical professionals I was about to deal with.
Take Charge ~ Be In Control ~ Question Everything
What I also learned in this process, is that some doctors don’t want you to ask too many questions. Apparently, there’s an enforced restriction on the number of questions you are allowed to ask, and I apparently reached it with one of the specialists I had been referred to in the process. Obviously exasperated with me, he closed my file, stood up and held the door open for me. "Buh Bye.." I offered, as I smiled past him.
What I've Learned And You Should Know
The most important lesson gleaned from my personal experience is this; you need to be in control of your own health care. Be your own advocate.
In addition to being brave about asking questions in the face of being removed from my doctors office, I knew I needed to pay close attention to my intuition and really listen to it. I cannot stress this enough, because it is my feeling (I will illustrate this in another phase of this continuing story) that your 'inner voice' will tell you when something is wrong with your body.
We (especially women) tend to dismiss this 'voice.' We are also inclined to believe everything we are told by authority figures, like our doctors. But, a truly informed doctor will allow his/her patient to explore and ask questions. Encourage their 'intuitive' feelings about what's going on in their own bodies. Who lives in your body? You do. No one else knows it like you do. You are sensitive to it's changes, what works, what doesn't. Ideally, a doctor should be open to incorporating traditional and alternative medicines if it makes good sense and presents no danger or risk.
Clearly, medicine is not always black and white. Do not be bullied into passiveness and/or inaction when it comes to your health care. Find your voice.
A Glutton For Punishment
At the risk of being humiliated again, during my quest to discover all of my options, I unintentionally raised the ire of another doctor, who announced rather in a rather hostile voice, “You don’t have breast cancer, so stop all this research!” I can tell you that I did not take his advice and because of the kind of information I uncovered through research and questioning, a decade later I was able to use that information in combination with a subtle 'nudge' that came from my innate intuition. I believe it saved my life.
Treatment Or Follow-Up
I was referred to an oncologist and scheduled to see him and my GP every six months. These appointments were co-ordinated around my mammograms and sometimes, if warranted an ultra sound was included. One of their concerns was the amount of radiation I would receive within such a short amount of time but there didn't seem to be a better alternative, so I went along. It seemed a better alternative to 'let's just watch it for a while.'
First Six Month Follow-Up
It was time for the first, follow-up mammogram. I sat on a hard bench inside the narrow dressing room, wrapped in a thin gown, staring at the floor. I was wondering what was taking so long to confirm my film was okay. I just wanted to get dressed and go. This is a very stressful thing to live with ~ all this waiting, and not knowing when something might show up ~ LCIS or perhaps a lump that meant full-blown cancer.
Finally, the technician called my name. I drew back the privacy curtain to one side.
"Yes, I'm still here." I answered.
"I'm afraid we need more pictures ~ the radiologist isn’t sure about one area."
And there it was. After more squishing and waiting, the radiologist appeared to tell me there was definitely a small area on the left breast (opposite side this time) and that she would need to consult with the GP and the surgeon, who would likely want to schedule another wide-excision biopsy. I was stunned.
The second biopsy in less than a year was scheduled for several weeks later. No urgency. After all I didn't have cancer ...
The second biopsy in less than a year was scheduled for several weeks later. No urgency. After all I didn't have cancer ...
To be continued, in Part 2 of 5