The Top Three

So now what? I was told I had this "in-between" pre-cancerous marker called LCIS; I read about what it was, what it did and what it means through medical journals but, in all honesty, what do I need to do next? It kept coming back to three options:

1) Take Tamoxifin ( a chemo drug) for five years to lower the probability of getting invasive breast cancer.

2) Be vigilant and do an MRI once a year with a mammogram at the sixth month mark- every year.

3) Have a preventative bi-lateral mastectomy with reconstructive surgery.

Since my breast surgeon immediately suggested the Tamoxifin route, I made an appointment with an oncologist at the Joan Karnell Center at Penn Hospital to discuss putting poison into my body. Are you getting the feeling that I am ruling that one out even before I meet with him? I mean, I am a person that refuses to take aspirin for God's sake and now I am going to put a drug into my body where the side effects include blood clots, strokes and uterine cancer. Oh..and add in that it throws your body into menopause (lovely) for an onset of hot flashes, nausea and skin irritation among other fun symptoms. Of course, not everyone experiences those side effects but I will guarantee you that I would be one of the ones that do. Guarantee it!

I brought Bob with me since I read that you are supposed to bring someone to listen to what the doctor says in case your brain begins to wander or you freak out. I am pretty level headed so I knew I wouldn't start to cry or not listen but I wanted him to hear what I heard so he could be a sounding board later on. After explaining that Tamoxifin had been tested in 10-year studies and that it had significantly reduced the risk of breast cancer in patients, the doctor pointed out that the studies are unsure of what happens after the ten year mark. Does the risk go back up? I would only be 57 and, remember, my mom died at 56. He then looked straight at me and said, "Arlene, you would be a good candidate for prophylactic mastectomy. But first get the BRCA 1/2 gene test done to see if that helps in your decision process."

I also needed to add that while I was in the waiting area, I was next to the area where women (and men) were receiving their chemo treatments- some in wheelchairs, others not. I flashed back to my own mother and how sick she was during that period of her life. Yes, of course, this was in the 80's when she went through radiation and chemo and the drugs have been much improved over the years but I was so scared thinking about having to do that. I honestly think deep down that, if I had to, I could summon up the courage to go through all of that but it would take a lot to find it. I don't think I am strong enough. Wow..that was really hard to admit.

Which is why the second option- be vigilant, exercise and eat right- seemed more passive than aggressive. And I am not necessarily a passive, laid-back individual to say the least. Add in that if (or when) you found cancer, now you would be older and less healthy to endure chemo and/or radiation plus the possibility of THEN having to go through a mastectomy. Why not head it off at the pass while I am still healthy and young (er)? I am not one to take a wait and see attitude so it seemed that the mastectomy route was best for me. Where I kept wavering was the fact that my breasts would be removed and that I would not have any feeling in them- for ever. Plus..maybe, just maybe, I might never even get invasive breast cancer. Would I do all of this for no reason? What happens if I get hit by a Philadelphia crazy taxi driver and die after enduring the pain of a mastectomy or I get stomach cancer instead of breast cancer? What if.......?

At this point, I had already scratched off option 1. My strategy was to meet with a genetic counselor to take the BRCA 1 and 2 test and then meet with the plastic surgeon. My thought process was that the gene test would either add an additional risk to the already elevated risk factors while the plastic surgeon would inform me of what I would look like after the surgery. I also thought it would be great if I could speak to someone who went through a mastectomy so that I had a better idea of what it would entail. Now...where would I find that person or persons???

From the beginning...

Until recently, I had forgotten how much I loved to write. As a retail business owner for the past eighteen years, the only opportunity I had in terms of writing was filling out contracts and composing memos to my employees which weren't always written in a professional manner- especially during the last years of owning the business. You see, I was at wit's end in terms of stress and it was evident in my mannerisms, speech and even through my facial expressions. I felt that I no longer owned the company and, instead, it ruled me and controlled my life. Luckily for me, my husband was quite perceptive and agreed to put the business up for sale through a broker. Luckily for us, we sold it in 2006 before all hell broke loose with the economy. So now, here I am for the past year and a half...in Philadelphia...(of all places) after leaving idyllic Half Moon Bay, California to return to school and complete a one-year accelerated masters program in Sustainable Design.

And this is how I discovered that I loved to write. Going back to school after twenty-four years was certainly a challenge but having to write papers and then, add in, the seemingly unending 97 page thesis forced me to rediscover what I used to love to do...which was to write. Therefore I decided that, even if I was the only person to ever read this blog, writing would be the vehicle to get me through this ordeal. Who knows? Maybe by writing my story, someone else may gain insight while trying to make a hard decision.

Five days ago, I turned 47. I know, huh? Ugh! However, there was nothing I could do about it or I would have...trust me. I also found out a few months back through a biopsy that LCIS was discovered in my right breast. Lobular Carcinoma In-Situ. "What the heck is that?" I thought to myself. The word "carcinoma" certainly cannot be a good sign since we all know what that means...... C-A-N-C-E-R. The phone call from my breast surgeon, Dr. Sataloff, was pretty routine in that there was no cause for alarm and she just wanted to talk to me about options going forward.

When we met at her office near Pennsylvania Hospital, Dr. Sataloff strongly urged me to see an oncologist to consider taking tamoxifin as a preventative measure since my risk factor of having breast cancer had increased by 25%. Normally, a 25% risk factor is of slight concern but adding to that the fact that my mother was diagnosed with breast cancer at 49 and died at 56 and the fact that I chose to not have children, that I had my period before I was 12 and that both my sister and I had dense and cystic breasts, the risk factor was now elevated to a 65-70% chance of getting invasive breast cancer. Wow! Now what?

I immediately switched into "research" mode so that I could be prepared before I met with the oncologist. Since I had just completed my thesis, I was able to access the university library online and thumb through the medical journals to learn more about LCIS. Interestingly enough, I found that it was an "in-between" cancer in that some considered it pre-cancer while most considered it a "marker" for getting breast cancer at a later date. Hmmmmm. As a very black and white person, this made the decision process more complicated in that I now had to weigh all the alternatives carefully because, technically, I was in purgatory somewhere between heaven and hell.