Dana-Farber Cancer Institute — Attraction in Boston

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...

I went here for a third opinion and had surgery which turned out well despite the uber obnoxious & arrogant H&N surgeon, Dr. Ravi Uppaluri, whom I do NOT recommend--plus, post surgery the nurse practitioner kept pressuring/harassing me every week or two to have radiation & chemo--which I, thankfully, had the good sense to refuse. And despite their dire predictions, no signs of cancer nearly a year later! It was truly a demeaning experience to be a patient in that cold place where I absolutely didn't feel respected by the doctors; plus, they misinformed me that there would be no lymphedema after lymph node removal (neck dissection) when I asked about it--which is totally false as I definitely did have lymphedema and it's to be expected after major lymph node removal!! Furthermore, they didn't tell me about the One to One program though I had begged to speak to patients who'd had similar diagnoses (I learned of it months after my surgery, not beforehand, when I really could have benefited). They rushed me in and out and didn't take the time to explain everything I needed to know.

In spite of major issues with Uppaluri's rude and dismissive manner, Dr. Donald Annino was kind and much more helpful--and is truly a world class reconstructive H&N surgeon. And the Zakim Center for Complementary Therapies at DFCI is a wonderful resource available to patients.

Nevertheless, my experience at DFCI was negative on so many levels--and when I complained officially about these & other issues, the chief medical officer responded with what was, essentially, a caustic pro forma letter in which he attempted to dismiss and deny the numerous serious and valid concerns I had raised which felt like a further assault! As a result, I plan to go elsewhere for follow up after this year. The MD's "expertise" is not enough if he (a male physician, in this case) is abrupt, arrogant and doesn't listen to his patients or give complete and comprehensive information about the procedures he...

I've been a patient since 2004, I received notification from my medical that they require me to obtain additional medical and would only pay 20% which is a different fight all together. I had an upcoming Petscan which was cancelled along with my Drs visit. I called Patient Financial Services and explained the situation. I also explained that the metastases is believed there to have spead to the thoracic lymph nodes and the best way to insure activity is through the Scan. I explained this was a deciding factor to my treatment and to not do anything puts me at extreme risk. They told me they can't do anything it's their policy by being in RI, I would have to either pay for it, make financial arrangements, or get a rejection letter from the RI welfare dept. I asked the girl, so what am I going to do sit here and die and her response was sorry it's our policy. Dana Farber has received over these years close to 2 Mil from the insurances I have fought to stay alive and now I have to wait when they knew this was extremely critical since I just had surgery to rule out one type of cancer. They were a great hospital back in 2004 until they were taken over and merged. If something happens to me this is their fault as I was asking for some help why I get this mess straitened out. It's now just a pharmaceutical profiting hospital who does not care at all for their patients just their bottom line. Now I get a generic respone from Dana Farber that goes out to everyone that disputes them with no way I...