DFCI “assigns” doctors from other hospitals or locations. My breast surgeon has no medical office anywhere (she teaches). The oncologist is from St Elizabeth’s. I never met a radiologist there. Plastic surgeon is from Faulkner. Some team.

I was offered a clinical trial for breast cancer, but after reading my MRI days later, doctor said lumpectomy not possible, only mastectomy. Nevertheless, I was advised to proceed with trial. (I deluded myself that trial could make lumpectomy possible.) After 6 weeks, I came to terms with losing my breast & asked why was I on the trial?? (Neoadjuvant reduces tumor size for a lumpectomy.) I heard gibberish “without neoadjuvant, we can’t offer reconstruction” & the “chances for clear margins would be reduced”. (Mastectomy, historically, has positive margins less than 1%. As far as no candidate for reconstruction, I found no corroborating data.)

So they convinced me to continue trial. A few days later I asked for an “objective & scientific” method to measure tumor’s current size to determine if trial meds were working. (They use a tape measure & depending on who measured, it was 5 - 8cm (2.0 - 3.0”)). I was told it “wasn’t possible” to scientifically measure my tumor to compare with baseline MRI. I sent them articles from NIH (National Institute of Health) showing it WAS possible. So they agreed & I had 2nd MRI. Doctor said she’d get MRI report & call, but it appeared online on my DFCI account, & was signed FIVE days earlier. MRI showed several NEW tumors & existing tumors were same size but were “less enhanced.” I was furious my doctor “forgot” to call. I sent her email at 9:00 pm & within 5 minutes she called, backpedaling. Said it was read the day before (but I can see when it was signed). Anyway, she agreed to do mastectomy, but “it’ll be 30 days.” Oh, ok I’m only fighting for my life here.

Five weeks ago I had mastectomy & guess what? I’m WAY WORSE than anyone at DFCI thought. 88% of my “clinically clear” lymph nodes are cancerous. I’m RCB level 3 (Residual Cancer Burden), which is bad. Pathology report said trial had “no effect.” I had cancer in 80% of my breast (hence the need for mastectomy). I was down staged to IIIb in the OR. My expander should never have been placed because intense adjuvant therapy is now needed. I'm fighting for my life and juggling an expander because the PS must've needed $$ more than doing what's best for me.

Three weeks ago, I had baseline bone density test, which the DFCI oncologist “forgot”, even though I complained about shin splints & bone aches the entire trial. It’s RECKLESS to give 64 year old woman drugs that deplete estrogen, making her susceptible to osteopenia & osteoporosis without testing. (BTW test shows I have osteopenia & not sure if I had it all along or was it brought on by trial drugs. The ONLY reason I got tested now is because I asked for it since recently breaking bone in my right foot & breaking my left little toe, within 30 days of each other.) Early on, I’d asked for a CTC test (circulating tumor cells) & genetic testing & was told CTC tests are “unrepeatable” & DFCI doesn’t give genetic tests to “older patients".

When I first questioned the trial (& why not surgery), I asked (several times) for a WRITTEN TREATMENT PLAN. They looked at me like I had two heads. I even sent them MD Anderson’s “Invasive Breast Treatment Plan” but they wouldn’t, or couldn’t, provide one of their own. DFCI is not nearly in the same league as MD Anderson, Mayo Clinic or John Hopkins (#1, 2 & 3 in the country, respectively). It's laughable -- almost.

Why did they suggest a trial & try to keep me on it for as long as possible? I have invasive lobular breast cancer, which is rare (10% of breast cancer). The trial is for lobular cancer. They wanted data! They didn’t care about me, evidenced by the lack of testing, advice to start/continue trial even though I wasn’t a lumpectomy candidate, failure to follow up on MRI, telling me tumor sizes can’t be compared scientifically, etc, etc.

My advice: steer clear of these incompetents.