Doctors nonchalant after treatment care ...

I apologize in advance for this being so long-winded, but I need to vent. I'm so glad I found this place, didn't even know it existed til today!

I was diagnosed in 11/08, stage 2B, ER+, in ductu left breast – because of my Mom’s breast + colon cancer and my large, dense breasts, I underwent a bilateral mastectomy with reconstruction on 12/30/09. I had 2 nodes involved – cancer was also outside of the nodes, so they removed 15. I was told that they “got it all”. I underwent chemo 2/09-5/09 as a precaution, and also had radiation treatment 11/09-12/09. I tested negative for both BRCA’s.

I’ve had three reconstruction surgeries, ending with a DIEP flap 11/10 + 2/11. I am very happy with my new and improved body, my labs come back normal routinely, but psychologically, my fear of recurrence seems to be getting worse.

I feel I had excellent medical care, all through Westchester Medical Group, now known as WestMed. I was very lucky to have intelligent, informed, compassionate doctors who listened, but were also honest and direct - but I am increasingly troubled by their seemingly laid-back aftercare recommendations for me: basically, no scans are needed, just CBC bloodwork – no tumor markers - and physical examinations every 6 months. But I am very concerned about this "wait and see" attitude, especially since I know my body knows how to make cancer. I am also 30 lbs overweight, which puts me at risk for recurrence, and I’m trying to remedy this, but I sort of suck at dieting and exercising. My primary care physician, while thorough with meds and tests, just keeps advising that I should “diet and exercise” more - she’s weak on giving specific help.

Three oncologists and two breast surgeons so far have told me that, statistically, the survival rate of women whose breast cancer (and breast tissue) was 99% surgically removed, and who get regular scans, tumor markers, etc, isn't any better than women who get scanned when symptoms finally crop up ... I DO get this. One well-known, well-respected breast surgeon told me: "If I thought a sonogram would be an effective diagnostic tool for you, I'd do it in a heartbeat." Which made sense, at the time, when she was explaining it to me. Then I go home and obsess and realize, no, this isn’t how I want my aftercare to be. I really think I need to KNOW what’s going on in my body. I realize that there will be stress due to false positives, I know the chances of false negatives are high … but the NOT KNOWING is just as stressful for me. The beginnings of my breast cancer were probably missed by the radiologist who read my mammogram a year (to the day) prior to diagnosis, and my CBC was normal one month before I was diagnosed. I know full well that tests are not perfect. Then again, if I had been having yearly sonograms, perhaps my outcome would’ve been a lot different. Hindsight is fifty-fifty, and I do not blame anyone. I’ve never thought “why me”? Not once. I went through this fiasco with grace, dignity and (probably too much) twisted humor. Why am I now becoming a basket-case? And why aren’t my doctors taking into consideration my mental health?

It doesn't help that all 4 oncologists in my group somehow "missed" that I’ve been on sertraline while on tamoxifen these past three years, and zoloft is not the antidepressant of choice for tamoxifen patients. I know my records are lengthy, I know doctors are only human and make mistakes, but my meds are on the top of my chart, you’d think that that would’ve jumped out at someone at some point early on. Thankfully, I was weaning off properly and can now go cold turkey, but this also doesn't help my anxiety level.

So, my choices are: 1) seeing the 3rd oncologist in my group, the one who I only saw once (due to his ice-cold bedside manner) but who is very experienced + well-respected; 2) shopping for a new oncologist, and perhaps a new breast surgeon (and how easy is that going to be, when I’m no longer an emergency patient?) and probably a new primary care physician; 3) stop looking for trouble, be thankful my labs just came back normal, do more yoga and seek counseling.