That Lingering Risk Thingy

I can't say how much this just aggravates me. You get breast cancer. You get treatment and then they say we will see you once a year. You are NED (No Evidence Of Disease) for now. If you are hormone receptor positive (ER+/PR+) you get to take a little pill (tamoxifen or aromatase inhibitors) that should help you stay that way.

But there is always that lingering risk of recurrence. That's the one thing none of us want. A new study which looked at data from 88 different clinical trials over more than 20 years found that the risk of recurrence lingers after the AIs are ended.

"Researchers from the Early Breast Cancer Trialists' Collaborative Group analyzed data from 88 clinical trials involving 62,923 women with ER-positive breast cancer. The patients all received endocrine therapy for five years and were free of cancer when they stopped therapy.

Over the next 15 years, however, a steady number of these women saw their cancer spread throughout the body, as late as 20 years after the initial diagnosis.

"Even though these women remained free of recurrence in the first five years, the risk of having their cancer recur elsewhere (for example in the bone, liver or lung) from years five to 20 remained constant," says senior study author Daniel F. Hayes, M.D., Stuart B. Padnos Professor of Breast Cancer Research at the University of Michigan Comprehensive Cancer Center.

The risk of recurrence was directly tied to the original cancer's size and characteristics, and to the number of lymph nodes that were cancerous.

Among patients who were recurrence-free when they stopped taking endocrine therapy after five years, the highest risk of recurrence was for those with originally large tumors and cancer that had spread to four or more lymph nodes. These women had a 40 percent risk of a distant cancer recurrence over the next 15 years. Women with small, low-grade cancers and no spread to the lymph nodes had a much lower 10 percent risk of cancer spreading distantly during the following 15 years."

Isn't this comforting? On my part, I had a relatively small, moderately aggressive, and one positive lymph node. So that must put me in between the 10 and 40% risk of recurrence. Also, I am on the schedule for AIs for up to ten years. Maybe I will ask if I can continue them? But being on AIs only lowers your risk of recurrence, does not remove your risk of recurrence.

However, I do put a lot of credibility into this study as it reanalyzed data from so many studies. This is the kind of research that is the 'more research that was needed'. This just aggravates me that in this day and age, we still do not have a cure.

There goes my warm fuzzy feeling for the day. And you wonder why I deal with stress, depression, and anxiety.

I still think there is something else...

I know I have chemo brain. I had chemo and my brain has gaps and I cant remember things. I know I have fibro fog. I have fibromyalgia and now I can't remember names or words for things.

But now I know I also have 'cognitive decline from breast cancer hormone treatment' due to my Femara treatment.

""Decline in cognitive function is common in patients receiving adjuvant therapy for early-stage breast cancer," concluded Dr. Rugo, director of the Breast Oncology Clinical Trials Program at the University of California, San Francisco. "Ongoing hormone therapy appears to be a risk factor for worse cognitive function."

I'm doomed. I can't remember anything these days.

But I still think there is something else that I can't remember....

The femara dilemma

With breast cancer there is diagnosis, stress, depression, surgery, more stress, lymphedema worries, chemotherapy, baldness, neuropathy, weight gain, radiation, peeling skin, fatigue, stress, tamoxifen/aromatase inhibitors, slightly less stress, and through all of this is the ongoing care of your oncologists, surgeons, and other doctors.

I was diagnosed at the end of May 2007. I had surgery in both June and July. I started chemo on August 1 (some dates just stick in your brain) and finished chemo in mid December (where I bought myself an expensive watch as a gift), had a bad MRI and had more surgery (benign but stressful). January 2008 I began radiation and ended at the end of February. In about January sometime I was put on Tamoxifen for 2+ years. June 2010 I switched to Femara for another 2+ years. In September this year when I saw my oncologist she discussed going off Femara at my next visit to her which is next month.

As I filled up my weekly pill boxes I contemplated the fact that I don't have enough Femara tables to get me to my next appointment which is a paltry 15 days away. I have been going back and forth on this one. I know this is an emotional decision. There are no real benefits to taking Femara longer. But this is my last breast cancer treatment - that's it. No more. None. I just go to visits with doctors periodically where they will poke and pry and ask me how I feel (and look for potential rogue cancer cooties).

But emotionally am I ready to 'pull the plug' on all my treatment? I know this is why my medical oncologist brought this up when I met with her last fall. She wanted me to get prepared for this. At first I thought it was no big deal. But it is.

I have been waffling on this and caved in. This morning I placed a mail order to refill my Femara. It should arrive here just before I run out. Which will be a few days before my appointment. I would be happy to take fewer prescriptions but this is the last means of support against the evil cancer cooties.

I think at my appointment I will discuss my emotional attachment to Femara with my oncologist. My inner wimp is prevailing here at this point. Maybe I'll bring my refill with me and turn them over to her if I can't cut myself off.