MD Anderson

Keisler69

Thoughts/Opinions/Advice On MD Anderson .... Thank You

Pamcakes

My DH goes there. DH was

My DH goes there. DH was diagnosed with stage 4 one small met to the liver back in the summer. had emergency surgery to remove baseball size tumor and a month later a liver ablation. DH is 38 years old and after the first cycle of folfox and 5fu pump we decided to obtain a 2nd opinion with the local oncologist encouraging this. Since treatment had already started we had to wait until the 4th cycle for our first visit. We had no issues at all scheduling or communicating with the hospital when setting up the first appointmen. The first visit we met the doctor for  consult. We brought all medical records with us in case the electronic records did not make it.  They were reviewed and discussed. DH had scans that evening and 2 days later we met the doctor again To discuss the scans. During the first visit MDA agreed with current treatment and at this time nothing else was needed. We were scheduled to return in 2.5 months for more scans. This was at the beginning of Jan. We had the scans on Sunday Morning and saw Dr on Monday. there was no cancer detected on this scan either. MDA Dr. recommend no more treatment after DH completed the 12 th cycle. Honestly this concerned me. When we came home the local Dr stated he did not agree and recomended DH do 6 month of oral 5FU and Avastin, after current treatment is finished( started full dose of folfox, avastin and pump of cycle 11/12 today).  Honestly I felt MDA was a little to relaxed regarding ending treatment / not doing some type of maintance at least for a few more scans since DH is so young and stage 4. Then again I am a worried wife scared of my sweet husband getting more cancer once treatment ends. But I truly felt our Dr. at MDA was just very casual the 2nd meeting. We will be going back in April for a PET scan and DH is going to go with the recommendations of our local doctor & not MDA. We will continue to have scans done at MDA at least for now. 

I hope I did not ramble too much. We really like MDA and considering how big they are everything was very prompt. You will wait some, but we have not felt that it is anything unreasonabl, everyone from security to the doctors are most helpful, kind and truly feel they care. Their organization just amazes me and for us we are very happy with MDA. We may not have agreed with ending all chemo, but that is why we have 2 oncologist so we can obtain different views and recommendations to make an informed decision. the facility is clean, nice areas to walk around while waiting if you choose to, prompt treatment. 

If you have any specific questions feel free to ask and I hope I am able to help you. I know we were totally at a loss as to what to expect, but honestly once we arrived everyone was so friendly and helpful that we had no issues at all. Best of luck!!!

Keisler69

Pamcakes said:

My DH goes there. DH was

My DH goes there. DH was diagnosed with stage 4 one small met to the liver back in the summer. had emergency surgery to remove baseball size tumor and a month later a liver ablation. DH is 38 years old and after the first cycle of folfox and 5fu pump we decided to obtain a 2nd opinion with the local oncologist encouraging this. Since treatment had already started we had to wait until the 4th cycle for our first visit. We had no issues at all scheduling or communicating with the hospital when setting up the first appointmen. The first visit we met the doctor for  consult. We brought all medical records with us in case the electronic records did not make it.  They were reviewed and discussed. DH had scans that evening and 2 days later we met the doctor again To discuss the scans. During the first visit MDA agreed with current treatment and at this time nothing else was needed. We were scheduled to return in 2.5 months for more scans. This was at the beginning of Jan. We had the scans on Sunday Morning and saw Dr on Monday. there was no cancer detected on this scan either. MDA Dr. recommend no more treatment after DH completed the 12 th cycle. Honestly this concerned me. When we came home the local Dr stated he did not agree and recomended DH do 6 month of oral 5FU and Avastin, after current treatment is finished( started full dose of folfox, avastin and pump of cycle 11/12 today).  Honestly I felt MDA was a little to relaxed regarding ending treatment / not doing some type of maintance at least for a few more scans since DH is so young and stage 4. Then again I am a worried wife scared of my sweet husband getting more cancer once treatment ends. But I truly felt our Dr. at MDA was just very casual the 2nd meeting. We will be going back in April for a PET scan and DH is going to go with the recommendations of our local doctor & not MDA. We will continue to have scans done at MDA at least for now. 

I hope I did not ramble too much. We really like MDA and considering how big they are everything was very prompt. You will wait some, but we have not felt that it is anything unreasonabl, everyone from security to the doctors are most helpful, kind and truly feel they care. Their organization just amazes me and for us we are very happy with MDA. We may not have agreed with ending all chemo, but that is why we have 2 oncologist so we can obtain different views and recommendations to make an informed decision. the facility is clean, nice areas to walk around while waiting if you choose to, prompt treatment. 

If you have any specific questions feel free to ask and I hope I am able to help you. I know we were totally at a loss as to what to expect, but honestly once we arrived everyone was so friendly and helpful that we had no issues at all. Best of luck!!!

What doctor did y’all see?

What doctor did y’all see? Did y’all have any problems with insurance not wanting to pay for a second opinion? We are in SC and they are trying to say we have to stay in the state, but I’m currently fighting that! 

Pamcakes

We had no issues at all with

We had no issues at all with insurance. DH has amazing insurance so we have been very blessed in that regard. We see Dr. Kee. Again, he isnt a bad doctor in our opinion. He seems to really care and takes time with us. We just feel due to DH being 38 years old, he should continue to have some treatment for a little while longer. hope you are able to get insurance worked out! 

aoccc2015

My local cancer center(which

My local cancer center(which has some of the best docs in the area) love to send me to MD anderson then i go there and it is like they are all going different directions. Then I go back to the local place and they had a plan that has nothing to do with the referal. Thousands down the drain. So yeah go get a second opinion I would be alittle uneasy with that too. He's 38 and im 41, I am sure he will breeze threw maintence.:)

LSU2001

Admittedly biased but I love MDA

I know I am biased, but MDA has done wonders for me. I was diagnosed Stage IV rectal cancer with many, many mets to the liver.  My local doctors and a liver surgeon at Ocshner of New Orleans were convinced I was inoperable and that chemo(folfox + Avastin) and radiation were only pallitive and designed to prolong my life as long as possible.  I went to MDA for 2nd opinion and the Oncologist (Dr. Kee) felt that I would remain inoperable but he presented my case to the liver surgeons and Dr. Cladius Conrad decided that, even though I had well over 20 mets on my liver, that he could perform a 2 stage liver resection. The first one removed the mets on the left lobe, and  a couple of weeks later, I had a protal vein embolozation to force the left lobe to grow prior to a total removal of the right lobe.  Both surgeries and the embolization were successful and most of the mets were removed.  I had to have a couple of ablations to remove some tiny spots that may have been metastatic lesions.  

In any case, the care I recieved at MDA was second to none and, in my case, has really helped me get ahead of the cancer.  I currently have a recurrance of approx 7 new lesions on my liver and MDA recommended to my local docs that I take Folfiri + Avastin for 3 months and then return for more scans and bloodwork.  My local docs felt this was a very good recommendation and I start on the new combo tomorrow.  I highly recommed MDA for their patient care and the experience they bring to the table when dealing with treatments esp. for stage IV.

Tim

Pamcakes

LSU2001 said:

Admittedly biased but I love MDA

I know I am biased, but MDA has done wonders for me. I was diagnosed Stage IV rectal cancer with many, many mets to the liver.  My local doctors and a liver surgeon at Ocshner of New Orleans were convinced I was inoperable and that chemo(folfox + Avastin) and radiation were only pallitive and designed to prolong my life as long as possible.  I went to MDA for 2nd opinion and the Oncologist (Dr. Kee) felt that I would remain inoperable but he presented my case to the liver surgeons and Dr. Cladius Conrad decided that, even though I had well over 20 mets on my liver, that he could perform a 2 stage liver resection. The first one removed the mets on the left lobe, and  a couple of weeks later, I had a protal vein embolozation to force the left lobe to grow prior to a total removal of the right lobe.  Both surgeries and the embolization were successful and most of the mets were removed.  I had to have a couple of ablations to remove some tiny spots that may have been metastatic lesions.  

In any case, the care I recieved at MDA was second to none and, in my case, has really helped me get ahead of the cancer.  I currently have a recurrance of approx 7 new lesions on my liver and MDA recommended to my local docs that I take Folfiri + Avastin for 3 months and then return for more scans and bloodwork.  My local docs felt this was a very good recommendation and I start on the new combo tomorrow.  I highly recommed MDA for their patient care and the experience they bring to the table when dealing with treatments esp. for stage IV.

Tim

I agree, reading many reviews

I agree, reading many reviews like your experience is why we will continue with MDA in the event DH needs such amazing care. I am so glad they were able to help you. We really like Dr. Kee and will continue to see him as well, but DH just wants that safety net. Honestly we were very shocked the recommendations were not the other way around. We have met so many people from around the world so far that travel to MDA for care and their stories are such an inspiration and testament of the great care MDA provides. 

Macdougal

A little spotty

I’m at MDA right now waiting on a chemo bed, an hour late...I find MDA to be spotty in areas.  Examples:

-Oncology is going great.  I believe my doctor is top notch at oncology.  Moonshot researcher.

-Bedside manner and communication from her are mediocre.

-She runs 1.5 to 3 hours late.  Always.  

-Oncology Nurse PAs are fantastic

-Clinical nurses are very good with only occasional disappointments

-Port surgery was a bad experience.  We wrote down 18 separate complaints about it, including being trained on IV needle removal equipment not in actual use clinically.  PAs were terrible.

-Wildly inconsistent and always wrong pain management.  “Take whatever you have laying around the house” for post surgical pain.  4 mg of Dilaudid for level 3 abdominal pain(!)

-Colonoscopy experience couldn’t have been better

-Biopsy experience was very good but weird pain management.  The fentanyl was effective for level 3 pain but jeez.

-Imaging is good.  The radiology report from my last CT scan was incredibly thorough.

-The satellite facilities in Katy are convenient for me

-MDA is a machine, you’ll know what I mean when you go there.

I’m glad to be here but they are a huge operation and can’t be top notch at everything.

-Doug

 

Makord

LSU2001 said:

Admittedly biased but I love MDA

I know I am biased, but MDA has done wonders for me. I was diagnosed Stage IV rectal cancer with many, many mets to the liver.  My local doctors and a liver surgeon at Ocshner of New Orleans were convinced I was inoperable and that chemo(folfox + Avastin) and radiation were only pallitive and designed to prolong my life as long as possible.  I went to MDA for 2nd opinion and the Oncologist (Dr. Kee) felt that I would remain inoperable but he presented my case to the liver surgeons and Dr. Cladius Conrad decided that, even though I had well over 20 mets on my liver, that he could perform a 2 stage liver resection. The first one removed the mets on the left lobe, and  a couple of weeks later, I had a protal vein embolozation to force the left lobe to grow prior to a total removal of the right lobe.  Both surgeries and the embolization were successful and most of the mets were removed.  I had to have a couple of ablations to remove some tiny spots that may have been metastatic lesions.  

In any case, the care I recieved at MDA was second to none and, in my case, has really helped me get ahead of the cancer.  I currently have a recurrance of approx 7 new lesions on my liver and MDA recommended to my local docs that I take Folfiri + Avastin for 3 months and then return for more scans and bloodwork.  My local docs felt this was a very good recommendation and I start on the new combo tomorrow.  I highly recommed MDA for their patient care and the experience they bring to the table when dealing with treatments esp. for stage IV.

Tim

Tim thanks for sharing your

Tim thanks for sharing your story. Wishing you all the very best ahead! My Mother is fighting stage 4 rectal cancer with mets in liver and lungs. We are at Folfox + Avastin, ct scan is due in 2 weeks. I’m looking for surgery options although I’m not sure she can tolerate such a heavy surgery as a liver resection. how fast froM stage 4 diagnosis you were operated in the liver? What does your surgeon recommend ahead? Chemo? Other surgical options? Thanks for sharing your lights and guidance - I’m struggling to see if there is true hope for a surgery given mets in two organs and overall what the right strategy for my mother would be. Thanks a lot! Wishing you all the very best!!!

Joan M

Went to MD Anderson in December

It was huge!  I was impressed with the place, but not happy with the cost after my insurance paid of $3000 just  on their CT scan. They billed over $9000 for the CT scan which is over twhice as much as my clinic at home charges.  I had already maxed out on my out of pocket expenses for the year, and was told by my insurance and MD Anderson that everything would be covered at the in-network rate:  No copays, no additional charges.  The cost of travel, housing and food was hard to come up with, so this additional $3000+ is very upsetting.  Of course, I have to contest that, but add that to my list of what I need to do with the limited energy and feeling sick half the time.  

I was placed on a waitlist for clinical trials, but have to travel there every 3 months for my scans and have the bloodwork and doctor visits to stay on the list.  It will be hard just coming up with money to travel.  I really don't have that extra $3000 for their CT scans.  Yes, my life is at stake, but not sure how to come up with that money every 3 months.      It was very busy place and yes the doctors ran late as mentioned by others.  And we know it's a training facility.  However, there is NO excuse for bad medical care.  I'm glad Doug filed the report.  We deserve the best care available especially with the rates we are billed and traveling there because it's supposed to be the best cancer center in America. 

Anyway, if you have any questions, you can send me a message.

Good Luck,

Joan