Questions for those that have been treated at MD Anderson.

dysonsphere

I have my first consultation with MD Anderson about my diagnosis at the end of the month. I have nothing to do between now and then but think! So, if anyone that has been treated there, can you share your experience? I would love to know how the treatment progressed and what I could expect from my first visit.

Scrafgal

I was treated at MDA, starting January 2, 2017. The first two, full days (Jan 2 & 3) started with me getting a mammogram, ultrasound and meeting the team (MO, RO and BS). Turns out I didn't need an RO but at that time, they just assign the team. They meet with you to discuss preliminary findings and then explain all of the diagnostic tests that will take place within 48 hours--for me: CT, PET, Bone Scan, Echocardiogram, multiple biopsies etc. Prepare to be there all day for two whole days. If things run late, they know where you are...just keep going to the next appointment! At the end of the second day, you meet with the team again, one by one, to discuss the findings and recommended treatment plan. If they find anything unexpected, or need any additional testing, then they will schedule that to happen with a week.

Things moved quickly for me. My breast surgery was scheduled for Feb 7th (it could have been the week earlier, but I wanted the first stage of reconstruction at the same time, so the BS and PS needed a week to consult with each other).

While I was healing from the mastectomy, I was waiting for the oncotype dx score to help with understanding recurrence risk and whether chemo would be an appropriate treatment. Your MO will explain this test. Turns out, I needed chemo and I started my first chemo treatment just 2 days after getting the oncotype test results. Some people do chemo before surgery, but I was node-negative (which is good) so I had surgery first, then chemo.

I found that the level of coordination among the care team was excellent. The team actually talks about your case before meeting with you. They agree, collectively, on a treatment plan that is informed by their unique specialties.

Through treatment, I took advantage of the many complementary services offered by the Integrated Services team: acupuncture (for chemo-induce neuropathy...tottally resolved!), took tai chi lessons etc.

If there is anything else that you'd like to know. Just ask! I volunteer there now!

dysonsphere

Thank you for your help! You mentioned biopsies, were these the initial ones or follow ups? I had my biopsies at St. Lukes before being referred to MD Anderson.

Scrafgal

I had my origina biopsy at St. Luke's too...but MD Anderson re-biopsied not only the tumor but a suspicious lymph node. They like their experts to do a more detailed review and found some information missing on the original tumor biopsy. Because of my situation, they actually had the top person at MD Anderson do a third biopsy to be absolutely sure that the tumor had not spread. They found it unbelievable, but true...it had not spread. They were doing biopsies of the lymph nodes at that point.

Scrafgal

The biggest decision was: Chemo before or after surgery. Since I was node negative (and this was confirmed, thank God, via post-surgical pathology) I did the surgery first. That was one the main reason for the biopsies of the nodes in my case. They finally relented and believed that it had not spread...so, off to surgery I went!

MinusTwo

Dyson - I had my biopsies at St. Lukes too, but my surgery at Methodist. It's my understanding that MDA will re-do all the tests & scans from elsewhere with their own staff. I'd guess you'll have a general assessment & review of data to date, then new testing ordered. But yes, the process will move quickly once you're in the system.

I've heard mostly the good things that ScrafGal recounts. The team work is fantastic. I had an oncologist that I really wanted at Baylor, and surgeon & PS at Methodist that I loved who met in tumor boards every week. I have heard from several people that MDA is definitely a clinic atmosphere - you wait "in line" once you get there for an appointment.

I asked my BS why wouldn't I choose MDA since I was lucky enough to live in Houston. She had done a fellowship at MDA and had lots of contacts there. Her comment was it appeared I had a 'garden variety' cancer. If she found differently or felt we needed expertise for something more rare, she would be the first one to refer me on to MDA.

I did have my rads at MDA-Katy. It was an easier drive than the med center since I had to be there every single day for 5 weeks. And my Baylor MO recommended a great RO out there.

dysonsphere

I had one node biopsied already that came back negative but that was discordant so they suggested removal during surgery. So I guess I will probably have another. Not something I wanted to hear but I guess they have to be sure!

DorothyB

I was treated at MD Anderson - but had lumpectomy with surgeon at Kelsey Seybold first, so MD Anderson was radiologist / radiation and medical oncologist.

The radiologist had the slides from my lumpectomy re-read. They decided that I had one area which only had 2 mm clear margin next to DCIS instead of 5 mm everywhere. They also decided I had lymphvascular invasion which Kelsey said I didn't have. They said my tumor was grade 3 instead of grade 2.

I was treated at the West Houston location. They were good about offering social worker if needed.

Scrafgal

MD Anderson has stated that it changes, in some way, 20% of previously diagnosed cases. Maybe that is why they double check...they know the chances of finding something overlooked...

mac5

I was treated at MD Anderson for IDC and DCIS in 2008. At diagnosis I was Stage IIIb.

The Care I received was phenomenal. I credit MDA for saving my life.

It was very much a “Clinic” atmosphere. But you receive “individual treatment.” You have a Medical Oncologist, a Radiation Oncologist, a Breast Surgeon, and a Plastic Surgeon along with a Nurse Navigator assigned to you. Any of these are available online to respond to any questions you have. Every decision made about your care could impact any other part of your care so your Team is in constant communication.

It was the best care in the World for me at that time

illimae

I’ve been treated at MDA for just over 3 years. It is a very busy and large center, which can be a bit overwhelming at first. Lots of appointments and tests, as others said, they do their own. The first day someone will take you around, it’s easy to get lost. I’ve had great experiences with most personnel, except one nurse and one cardiologist but you just say the word to a patient advocate and never have to deal with it again.

dysonsphere

I will be getting treated in the new facility in The Woodlands. Hopefully there will be fewer people!

illimae

dysonsphere, You’re initial consultation and testing will probably be at the main clinic but yes, the satellite clinics are typically calm. I’ve been to Katy and west Houston, both without much hustle &bustle.

DorothyB

I went to MD Anderson today to do follow-up visit w/ the radiology oncologist - I really like her. I also met with the new medical oncologist there. He is so, so, so much better than the other two medical oncologists I have seen. I feel like he listens to me and I can talk to him. He really would like me to take 20 mg of tamoxifen each day, but he said he would rather I take 10 mg than not taking any. He also brought up healthy eating, etc. He explained more about what happens once you get through radiation / chemo / surgery than any doctor I have seen so far in my journey.

Cowgirl13

DorothyB, it would be great to hear what he shared with you. Sounds like a great visit.

DorothyB

Cowgirl, he gave me a one page handout that says basically what doctors we have at first (med onc, rad onc, surgeon) and that afterwards we have follow-ups w/ med onc and mammogram at 6 mo, 1 yr and then each year. Also has a list of what they don't do routinely for early stage cancer patients - list of CA tests, body scans, etc, etc.

He gave me a booklet on dealing w/ symptoms of hormone therapy - mostly not overly helpful for those of us who have been learning for a while - drink plenty of water, to help w/ nausea take pills w/ meals or eat a little bit, moving helps, etc.

He reminded me that plant based diet is good and sugar isn't.

And when he found a slightly enlarged lymph node around my collar bone, he told me that they will be very, very cautious regarding everything w/ cancer patients. My enlarged node could be left from the breast infection that I had antibiotics for a few weeks ago. It could also be fighting off a cold or a few other things - or cancer. He told me that he would schedule ultrasound and biopsy - but that they may not do biopsy depending on ultrasound. He told me what the next step would be if they do a biopsy and it comes back w/ cancer (full body scan - can't remember exactly all he said)

dnguyen2020

Hi all,

My mom was treated at MD Houston for a year in 2018 but in 2019 we moved her back to a Texas Oncology in Dallas. We live in Dallas so it was tough to drive her to appointment in Houston once every 3 weeks. But the main thing was the expensive bills. My mom has out-of-network insurance so it only covered 50% at the time. She is not doing so well at the new clinic and I keep thinking about moving her back to MD. But we can't afford the bills when the insurance only covered 50%. We paid nearly $250,000 in less than a year when we were at MD..... Does anyone have any advice?

ShetlandPony

Maybe one visit to her old oncologist at MD Andersen to get ideas on how to deal with the current situation. In other words, to get instructions for her Dallas team to follow, to get any prescriptions that could help if they are willing. Take all her current records including clinic notes if you can.

dysonsphere

I'm sorry to hear you Mom is not doing as well in Dallas. I have been going to MDA now since the the beginning of the year and will be starting my neoadjunct chemo there very soon. Luckily, they are in network for me an I live nearby so the distance is not an issue. It's clear they know what they are doing and they make you feel like you can leave your care in their hands without any concern. When I was diagnosed, I changed my insurance for 2020 to make sure MDA was in network and that I could manage the out of pocket maximum since I knew my care was going to be very expensive. Is there any way to change your insurance so you can be in network? You will be in my prayers!