Decision Dilemnas

Somehow I haven't had the nerve to blog lately--either that, or I've been trying to live somewhat of a normal life and by the end of the day there is no energy left to do anything but sleep. Okay, the reality is somewhere between the two excuses and four weeks post surgery I am still wondering what the next step is in dealing with my specific cancer perameters.

Originally we talked about the cancer as this tiny "zit" (Ken's beautifully descriptive word not mine) that maybe we were attacking with the bazooka guns, then after much conversation and research with real breast cancer survivors and Dr's and books and educational materials we came to accept that even a small "zit" of cancer is unpredictable enough to treat as a serious illness. Surgery came and went and now as the incisions are healing and energy is returning the long term reality of dealing with my cancer variables has hit. I have variable which seem to place me directly in the middle of not knowing for sure what the best plan of attack is, but here are the details for you to analyze.

So here are the facts as we knew them post biopsy--1.1mm invasive ductal Carcinoma and Ductal Carinoma in Situ with Cancerization of Lobules, Estrogen receptor positive Her2 negative.
In simplified terms...invasive means the cancer has spread into other breast tissue outside of the ducts, Cancer is early-stage 1 because of small size (good news)and only has 10% or less chance of recurrence. Estrogen receptor also indicates less chance of recurrence and the good news is that Tamoxifen can be taken for 5 years after treatment to block estrogen from promoting new cancer growth in the rest of the body. Her2 negative also points toward lower likelihood of recurrence. Recommendations for treatment: mastectomy of left cancerous breast, followed by radiation and tamoxifen. Double mastectomy chosen just to be on the safe side and not have a repeat case in later years (remember I do have lots of those....I AM YOUNG!!)


THe new and more extensive post Mastectomy and node biopsy reveals: all lymph nodes negative (great!)Estrogen receptor positive (tamoxifen treatment available-good) infiltrative ductal carcinoma with lobular features is 1.1cm (not detected on mammogram or MRI--not so good) cells are moderately differentiated( not so good), margins are not clear (radiation necessary on left breast only) Her 2 status is positive (not so good).

Consultations with surgeons and oncologist suggest that the larger tumor and Her2 status plus the moderately differentiated cells plus my young age are tipping the scale toward chemo--and several types of chemo are offered to choose from. Then one more factor puts us back on the fence--Her2 status is tested with a "fish" test (more sophisticated, more detailed) and Her2 status is bumped back to negative. So that makes the chemo my choice--benefits of having chemo are not know for sure--neither are benefits/risks of skipping the chemo.

Is anyone else feeling confused right now??--I sure am!

Ken and I weigh all the offered chemo options: CMF course is once every 3 weeks--6 sessions--pros: hair thinning more likely than total hair loss, less nausea, Cons: menopause, fatigue. AC chemo is once every 3 weeks, only 4 sessions--pros: shorter, reduces risk 1-3% points more than CMF. Cons: total hair loss, small chance of permanent heart damage. After much debate we lean toward CMF course of chemo just as a precaution in case some undetectable cancer lurks somewhere in my body--remember I'm shooting to be a 50 year cancer survivor!

So we meet with surgeons to double check mastectomy healing and with the Oncologist to schedule....Plastic surgeon wants two more weeks to let scabs heal...Oncologist agrees to ten days--December 4th is the scheduled beginning of chemical torture (my description..not the Drs!) and the second round can be bumped by a day or two to let me have the second round the day after Christmas instead of just before. Everyone seems happy with the decision to move forward--the only test that isn't back is the ONCOType DS--some sophisticated way of looking at the cancer cells and predicting what the chances of recurrence will be. Discussion between the Drs at tumor board was that all the Onco Type tests that have come back up to this point always categorize the cancer as mid-grade ( medium risk of recurrence)...so everyone debates the worth of test vs cost ($3200) which is not always considered an eligible insurance cost--we opt to go ahead with the test and we all agree that if test comes back mid-grade on the lower end we can reevaluate chemo efficacy...if on the higher end of "mid-grade" we'll keep the chemo as scheduled.

So I'm busy mentally gearing myself up for the next step--calling fellow cancer warriors to see how their experiences have been...gathering info and processing. And today Ken calls from his in house call duty to say that the ONCO type test is back (30 minutes after the Oncology secretary calls me to say test isn't back...we'll talk on Monday) and for the first time we have a low score to present to the Oncology team--so here we go into the holiday weekend back at the beginning.....recovering from the original surgery--grateful we did both breasts at once (did I mention that the larger tumor increased my risk of recurrence on the other side to 30%?) knowing we need radiation for sure...but back on the fence about chemo. Have I mentioned that I'm happier when there is a plan????

So I'll end my confusion for the night with a list of the things I know I'm grateful for at the moment--inspite of the uncertainty of what to do next: caring, compassionate, knowledgeable healthcare providers that work as a team; warm cinnamon rolls brought by caring neighbors; phone calls of concern; emails and cards that keep proving (as ken says) that I'm the most popular person in the house (we can actually say the we get more personal correspondence than bills these days--silver lining!); Lots of hugs and kisses from my husband and kids; the ability to drive 70 mph on the freeway after 4 weeks of no driving; a walk through the neighborhood with a friend who listens while I talk and talk and talk; friends who get my kids off to school while I head to Dr. appts; friends who pick my kids up from school while I'm still at appointments; warm, yummy dinners that appear in the kitchen just in time for me to feed the family after waking up from my post-appointment naps; laundry that disappears from my laundry hampers and comes back washed, dried, and ready to put back in drawers; neighbors who help pull garbage cans out the curb and back to the house when all my able-bodied family members are at work and school; cute hats just in case I have to go bald; pints of haagen-das icecream to eat straight from the container for an afternoon snack with the kids; beautiful flowers and yummy edible fruit bouquets; lots and lots of chocolate; house elves that show up and put the house back together--or run the house for days without letting me lift a finger. The list could go on forever, but I think we all get the idea!! It's hard to feel sorry for myself for very long when I start counting my blessings and realizing what an amazing outpouring of love and support that our family is experiencing. And most of all thanks for your prayers--from all ages and every denomination your faith and prayers continue to lift and sustain our family. We love you and hope you all have as many blessings to count this Thanksgiving as we do!