Caution: MD Anderson

tx_mermaid

I wanted to warn anyone considering going to MDA for breast cancer. I've had a horrible experience. I was 1st diagnosed in 2014 with Stage I bc. I had a bi-lateral mastectomy / no treatment but took tamoxifen. After mastectomy I had scar tissue nodule just outside my left breast. Around this same time, unbeknownst to me, my oncologist, Dr. Litton, transferred my care to a nurse that had 1-2 years working experience. Apparently Dr. Litton preferred to spend her time with patients she deemed 'higher risk' (I later found out). For a year and a 1//2 I was NOT SEEN BY A DOCTOR, and was seen by nurses and examined by approx. 18 nurses during this time frame who (1) NEVER documented the existence of this scar tissue in my med file and (2) never once suggested evaluating it. In the fall of 2017, the scar tissue skin turned red. I made an appointment where a nurse questioned if my body was rejecting an implant. She never once brought a doctor in to examine me. My recon doc informed me I still had a port in - so I needed surgery to remove it. They perform surgery and there is no port, but recon doc found a tumor. In recovery, my recon doc informs me it is not uncommon to find cancer in scar tissue. This was the first time I heard this fun fact about scar tissue. So they not only performed an unnecessary surgery on me, they weren't properly screening me or being proactive with my care when I had a nodule that was VISIBLE and PALPABLE at every visit for a year and 1/2 that was just inches away from my original cancer site. I was furious. I questioned by oncologist about my sub-par care, and she suggested I needed to speak to a therapist! When I asked Dr. Litton why I hadn't seen her in a year & 1/2, her response was "if I saw every tamoxifen patient, the doors to my practice would have closed long ago." So she was callous and uncaring. This made us even MORE FURIOUS. I escalated to patient advo and the director of the breast center. The Director of the breast center was argumentative and rude at a time when she should have shown empathy. She even brought up 'patient responsibility', like BLAMING ME for the situation! Well, we live in Houston and know many people who work at MDA. So we told a board member who contacted the Prez, and we got a high-level review meeting. I demanded that an internal review be done on my file. There is false information and MISSING information throughout my medical file. And not a single person ever recorded the existence of the scar tissue nodule. I also requested they tell me what 'improvements' they would be making so that this never happened to another patient that walked through their doors. We are Houstonians and I even used to volunteer at MDA. It is heartbreaking what they did with my care and now the uncertainty with my future health. Please share this information with anyone considering going to MDAnderson. During the year & 1/2 of NOT EVALUATING a nodule on my torso, my cancer grew to 3 cm and progressed to my lymph nodes.

You DO NOT need to travel to Houston to go to MDA for care. There are many institutions that care about you and can provide you quality care. The breast center at MDA is a factory and you will just be a number. Do yourself a favor and seek treatment elsewhere.

edwards750

Wow so sorry txmermaid. I’m sure the vast majority of us have heard nothing but good things about MD Andersen. In fact I was always told when all else fails go there for treatment. It was also thought of as a last resort as well as in you have an expiration date so it was kind of your last hurrah. If they couldn’t fix what ails you nobody could.

Your story is so troubling for any number of reasons not the least of which is the total lack of care and caring in your case but good for you taking your case to the highest level. I would too.

I did have radiation following my lumpectomy and I too was Stage 1b IDC. My sister had a MX but not treatment and took Arimidex. She had ILC. Both of us saw our oncologists for 5 years. I’m stunned your’s shuffled you off to a nurse and an inexperienced one at that. That’s unconscionable. My SIL had scar tissue after her lumpectomy and has continued to see her oncologist even after 9 years so I’m at a loss to understand your oncologist’s protocol.

The missing files speaks volumes. Talk about insult to injury.

Their egregious mistakes don’t help you any. You are paying the price - not them. It’s virtually impossible it seems to hold doctors accountable. They are a fraternity who protect and defend their profession no matter what.

Please try and keep the faith. You will get through this setback just like you did the first time. Keep us posted.

Diane

illimae

MDA is not perfect, no place is but I am truly shocked by the mistakes made in your case and can’t believe they didn’t at least do a chest x ray to confirm the port placement before surgery. I had a bad experience with a nurse at my first chemo infusion, where I had a severe reaction, she panicked and left me in major pain, while waiting for my MO to respond to her email, after 6 pm on a holiday! It was resolved with the patient advocate and I never saw that nurse again per my request.

In fairness though, other than that, I have received excellent care from my team and still do, perhaps it’s because I was stage 4 from the get go at 41 and considered a somewhat unusual case.

Best of luck to you