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Topic: Caution: MD Anderson

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Posted on: May 15, 2018 02:08AM

tx_mermaid wrote:

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.

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Oct 23, 2018 11:39AM Danaqtr wrote:

omg. This is really scaring. This hospital has the top ranking in the world as the best in cancer. Where we should go then

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Oct 23, 2018 12:06PM Astrid wrote:

that is a very brave post.

Bravo to you tx mermaid. I hope you find the first rate care that you and all of us deserve. It was appalling to think this happened to you and the responses you received were totally unacceptable. Let's hope your message is heard and brings about change.

2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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Oct 23, 2018 12:41PM Rah2464 wrote:

tx mermaid thank you for your post. I am so sorry to hear about your experience. There is so much we do not know about our disease and we rely fully on our doctors to guide us through the process. There is almost a casual approach perhaps when your BC is caught at an early stage and tamoxifen the only post surgery treatment. I know I am a little concerned that my oncologist has moved me to 6 month reviews after only a single three month post op checkup. Your body is under such strain after that initial surgery and treatment. So thank you for telling us your story it inspires me to advocate more strongly for myself. I wish you well.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 23, 2018 03:26PM - edited Oct 23, 2018 03:35PM by Icietla

tx_mermaid -- I am so sorry about how you were treated there. I hope you have found another Oncology team to take good care of you.

A friend has strongly encouraged me to go to MDA for treatment of my more recently discovered cancer of another type. I have other reasons for not wanting to go there.

------

Rah2464 -- At the Cancer Center where I have been going since my initial (ILC) cancer diagnosis in early 2016, after my first several visits (I think it was after my first year of checkups there) at three-month intervals, I was offered a schedule with longer intervals between visits. I asked to continue with my visits there at three-month intervals, and they were agreeable to that.

https://community.breastcancer.org/forum/78/topics/859993?page=1#post_5085685

https://community.breastcancer.org/forum/78/topics/859993?page=1#post_5140383

https://community.breastcancer.org/forum/78/topics/859993?page=1#post_5086389

Perhaps your solution could be as simple as asking for the more frequent schedule of checkups to be continued for you, for your better peace of mind?

My latest (Stage IVB) diagnosis is almost certainly of another distant primary type. To the best of my information and belief, I am still apparently what we call NED as to breast cancer, doubtless thanks to Letrozole. Dx 2/12/2016, ILC, Right, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal Dx 8/2018, Stage IV
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Oct 23, 2018 04:38PM JoE777 wrote:

I was initially treated at a cancer center in Shreveport,La. my two years standard of care was seeing the oncologist every 3 months. I moved to the Houston area so I don't know when they would have spread out my visits. Sorry for your horror story. Jo

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Oct 23, 2018 04:47PM JoE777 wrote:

Hi tx mermaid, wow!!! I live in Pearland on the southern Houston border. My current treatment for metastatic BC is with Memorial Hermann Southeast. My oncologist is Dr. Hasham-Jiwa with Oncology Consultants in Houston. I've had excellent compassionate care. I know you may have a new doctor but if you're still looking, go online and check them out. They even help me with my kisqali. Hoping good things for you today. Jo
Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Oct 23, 2018 05:57PM - edited Oct 23, 2018 06:04PM by WC3

Sorry you had such a bad experience. Why did they think you still had a port in? Was is not in your file that it had been removed?

Shortly after my dx, the doctor who ordered my testing referred me to a surgeon. My sisters came with me and at the end of the consultation, thought I should go someplace comprehensive so we got a copy of my file, which also contained the notes which the surgeon took down during the consultation. I started reading the file when I got in the car and when I got to the notes, my sister andcI were taken aback at what he got wrong.

I had found the lump about two years previously at which time I was told by the radiologist that it was normal tissue, and then two or so weeks before meeting the surgeon, I decided to have it rechecked and was properly diagnosed. I explained this to the surgeon as he was looking down taking notes, and he replied asking me if it was a new lump, and I told him no, it was the same lump. But he wrote in the notes that it was a new lump!

I didn't go back in there to correct it because I decided I wasn't going with him anyway as I did need a more comprehensive place but I told him it was a new lump twice.

I don't know how MD Anderson works but my health care provider isn't shy about charging what they have to to stay open and pay generous wages on top of that regardless of what they are doing. It's $600 to walk in the door to see a specialist regardless of whether they are seeing you for a rare stage IV cancer or a Tamoxifen follow up.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Oct 23, 2018 07:20PM Lula73 wrote:

I am so sorry you had this experience. A lot of times those disease specific awards are given due to the research the hospital does not necessarily treating it. Were you seen by nurses or nurse practitioners? There is a big difference. Nurse practitioners and physician assistants both have advanced degrees in medicine and often specialize just like drs do. In fact they tend to spend more time with patients than NDs and tend to ask more questions to get to the bottom of something. Unlike a nurse, NPs and PAs can prescribe medication in most states. If you saw just nurses, not an NP, I’d look at your insurance EOBs and see what type of visit they charged you for. In many specialties if the patient is in what they consider to be a ‘maintenance’ stage vs ‘active treatment’ stage then yes it is entirely appropriate to turn you over to a PA or NP with the knowledge that they report back to the MD and the MD is available for consult at any time and your case can be tuned back over to the MD if things change. Considering the number of active treatment cases on any given day, there is no way the MDs could keep up. Instead of being rung a seen every 3 or 6 or 12 months it would be every 12 or Moreno months and you’ll get 2 minutes with the MD. This is today’s healthcare. With all that being said, if the nurses were not NPs this is not standard of care. Not documenting your concern over the scar tissue and palpating it is not standard of care. Did anyone suggest or order a mammo/ultrasound/MRI or it? If not, that is not standard of care. Were you going for at least your yearly mammo? The surgeon is a whole other deal entirely. If no chemo protocol there is no port. Not standard of care. Just curious if you asked him what a port was or why he thinks you would have one. Either way it’s not standard of care and you may be able to take further recourse if you desire. I hope you are able to find a good team to another center that’s a better fit with better continuity of care.🙂🍀

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)

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