After 5 years my sister's oncologist told her she would have choose her doctor

lmede64

after being diagnosed with stage IV-B USPC, my sister met with a local oncologist and then sought a second opinion at MD Anderson. The chemo options were different and she decided to go with the protocol offered by MDA. Because of the distance, she lives in Florida, she goes to MDA for CT scans and consultation every 3-6 months but gets the chemo locally. Obviously the local oncologist has agreed to treat her using the therapy prescribed by the MDA Doctor. For some reason the local doctor has now dug her heels in and told my sister that she would need to choose between MDA and her. Had she known this was going to be an issue 5 years ago she might have made a different decision...either not to follow MDA advice or find a local oncologist who was willing to work with MDA. it's a little late in the game to do that. I understand that ego probably plays a part in this, but it seems unethical for the oncologist to put her in this position. Unfortunately she has had recurring issues and has had several rounds of chemo. She's anticipating another round, her CA125 levels have gone up a bit, and she is due for a CT scan. Normally she gets a CT scan done her and sends it to MDA for their (second) opinion. However she has also gone to MDA directly for a CT scan and to meet with her doctor. At this time she is planning to do the CT scan locally...money (and energy) is an issue. I'm disturbed that her local oncologist is putting her in this position. Everyone advises to get a second opinion and/or going to one of the major cancer centers for the best treatment. No one tells you however how to deal with the logistics.

Has anyone else dealt with this issue?

Veranos

Wow!

I live in Missouri and have gone to Dana-Farber in Boston since my diagnosis 5 years ago.  I still go every 3-4 months for scans and checkups, but the last few months I have had chemo locally with drugs D-F doctor prescribes.  My local oncologist has had no problem whatsoever with this arrangement--his clinic and D-F communicate regularly and diligently--and I can't imagine that he would ever say, "It's either her or me."  My situation was never a "second opinion" one, but a matter of convenience.  Does your sister's local doctor strongly disagree with the other doctor's treatment plan?  I should add that my local oncologist is a hematologist who, although knowledgeable, trusts my ob/gyn oncologist's protocol.

LorettaMarshall

Imede64~If U ask me, Sis needs 2 tell local DR where 2 get off!

Dear Imede64

My oh my—what Stage IV needs this kind of a problem?  Was there any logical reason given by your local oncologist as to why she disagrees with MDAnderson?  It sounds like professional jealousy at first thought.

My husband went to the University of Pittsburgh Medical Center for a SECOND opinion, after having his first diagnosis in our hometown.  UPMC had a better idea as to a less invasive Esophagectomy than was available here back in 2002.  So UPMC coordinated treatments with our local oncologist.  So my husband had pre-op chemo/radiation here, and then we traveled to UPMC for the actual surgery.  To this date, there is still communication between the surgeon at UPMC and our local oncologist.

I also corresponded with another lady who had Esophageal Cancer Surgery at UPMC, but came home for post-op treatments.  She was advised by UPMC to have follow-up chemo only.  When she returned home, her local oncologist wanted her to have more radiation.  She conferred once more with UPMC and was told that in her case no radiation was necessary.  SHE FOLLOWED their advice and refused the radiation.  The local oncologist acquiesced and followed the instructions of her thoracic surgeon.  Bottom line—it is your body. 

IF THIS WERE ME, I would tell MDA about the conflict.  Does MDA have a “nurse navigator” who could assist you in finding a more compatible physician near your home?  It is your body and your choice.  Is the local doc the “only game in town?”  If so, does MDA have any associates nearby with whom they can coordinate your treatments.

Good grief—sounds like this doc thinks she owns you.  Find another oncologist would be my personal advice.  If MDA is like UPMC, and I’m sure they are, there will be affiliates with whom they work closely when it is better for the patient, rather than to travel long distances.  Why not ask MDA  for the nearest affiliate with whom they can communicate that is closest to your home.  Most all insurances will pay for a SECOND opinion.  And anytime one can be treated at a major medical facility, the better it is for the patient.  So I would think that insurance would pay for the treatments suggested by MDA. 

This angers me.  If the local doctor had the cancer, I’m sure she would see things differently. 

Hoping your sister can get this resolved.  It’s difficult enough just surviving and undergoing numerous tests and treatments for 5 years.  We all know about the fatigue factor.  Your sister doesn’t need this added emotional burden.

Feeling for your sister, I am,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV – diagnosed Nov. 2012

(I had SECOND opinion @ UPMC, but they coordinated pre-op treatments with my local oncologist and there has never been a problem.) 

molimoli

Imede64 Sorry your sister met this uncaring money hog

Ego is not it at all, after such a long time? no, She sat down and calculated how much money she is losing by not getting the whole hog. MDA gets half and she is restricted to half of the hundreds of thousand they rake in on Chemo. A doctor ? she is not in the true sense of the word.

I had 5 second opinions from oncologists at different cancer centers here and didn't care whose nose was out of joint. I eventually settled for my own (make better sense to me ) opinion. Mostly it's all about money. I agree you should report her to MDA or the oncologist association.

Moli-- Sending you both comforting vibes and hoping this gets resolved soon ,to lighten the stress.

Jhd2u

So sorry to hear this

Your sister doesnt need that kind of stress while fighting her battle.   Every patient at MDACC is assigned a patient advocate as part of her medical team.  If she still has her initial paperwork, the name should be on it; otherwise her nurse or customer service can tell her.  Her patient advocate can help her with this.  An advantage of MDACC is that while you do have one (primary) oncologist, your test results and treatment plan are reviewed and discussed by a team of doctors experienced int hat type of cancer.  Your "lone wolf" oncologist seems to want to do things her own way.  I went to MDACC for a second opinion and the treatment plan they proposed was different than my initial oncologist.  But the MDACC oncologist explained their reasoning and it seemed very logical - and I switched immediately.  I have never regretted the choice.  Living in Houston, i have friends and coworkers going there; if she has any questions feel free to pm me.  

lmede64

Veranos said:

Wow!

I live in Missouri and have gone to Dana-Farber in Boston since my diagnosis 5 years ago.  I still go every 3-4 months for scans and checkups, but the last few months I have had chemo locally with drugs D-F doctor prescribes.  My local oncologist has had no problem whatsoever with this arrangement--his clinic and D-F communicate regularly and diligently--and I can't imagine that he would ever say, "It's either her or me."  My situation was never a "second opinion" one, but a matter of convenience.  Does your sister's local doctor strongly disagree with the other doctor's treatment plan?  I should add that my local oncologist is a hematologist who, although knowledgeable, trusts my ob/gyn oncologist's protocol.

her local oncologist is a hematologis too. I think it's not as much about difference of opinion as it is about ego. I went to Dana Farber for breast cancer 16 years ago..still NED. i also got a second opinion from UMass but dec to stick with DF. I was fortunate to live locally and hav access to some top notch care.

thank you

lmede64

LorettaMarshall said:

Imede64~If U ask me, Sis needs 2 tell local DR where 2 get off!

Dear Imede64

My oh my—what Stage IV needs this kind of a problem?  Was there any logical reason given by your local oncologist as to why she disagrees with MDAnderson?  It sounds like professional jealousy at first thought.

My husband went to the University of Pittsburgh Medical Center for a SECOND opinion, after having his first diagnosis in our hometown.  UPMC had a better idea as to a less invasive Esophagectomy than was available here back in 2002.  So UPMC coordinated treatments with our local oncologist.  So my husband had pre-op chemo/radiation here, and then we traveled to UPMC for the actual surgery.  To this date, there is still communication between the surgeon at UPMC and our local oncologist.

I also corresponded with another lady who had Esophageal Cancer Surgery at UPMC, but came home for post-op treatments.  She was advised by UPMC to have follow-up chemo only.  When she returned home, her local oncologist wanted her to have more radiation.  She conferred once more with UPMC and was told that in her case no radiation was necessary.  SHE FOLLOWED their advice and refused the radiation.  The local oncologist acquiesced and followed the instructions of her thoracic surgeon.  Bottom line—it is your body. 

IF THIS WERE ME, I would tell MDA about the conflict.  Does MDA have a “nurse navigator” who could assist you in finding a more compatible physician near your home?  It is your body and your choice.  Is the local doc the “only game in town?”  If so, does MDA have any associates nearby with whom they can coordinate your treatments.

Good grief—sounds like this doc thinks she owns you.  Find another oncologist would be my personal advice.  If MDA is like UPMC, and I’m sure they are, there will be affiliates with whom they work closely when it is better for the patient, rather than to travel long distances.  Why not ask MDA  for the nearest affiliate with whom they can communicate that is closest to your home.  Most all insurances will pay for a SECOND opinion.  And anytime one can be treated at a major medical facility, the better it is for the patient.  So I would think that insurance would pay for the treatments suggested by MDA. 

This angers me.  If the local doctor had the cancer, I’m sure she would see things differently. 

Hoping your sister can get this resolved.  It’s difficult enough just surviving and undergoing numerous tests and treatments for 5 years.  We all know about the fatigue factor.  Your sister doesn’t need this added emotional burden.

Feeling for your sister, I am,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV – diagnosed Nov. 2012

(I had SECOND opinion @ UPMC, but they coordinated pre-op treatments with my local oncologist and there has never been a problem.) 

Sis needs to tell Dr.off

that was my first thought, and I would volunteer for the job...as soon as she's coming from a position of strength...which would mean another oncologist. Thanks for pointing out the fatigue factor. She has the support of family and friends but in the end she's the one bearing the load.

best to you,

Linda

lmede64

molimoli said:

Imede64 Sorry your sister met this uncaring money hog

Ego is not it at all, after such a long time? no, She sat down and calculated how much money she is losing by not getting the whole hog. MDA gets half and she is restricted to half of the hundreds of thousand they rake in on Chemo. A doctor ? she is not in the true sense of the word.

I had 5 second opinions from oncologists at different cancer centers here and didn't care whose nose was out of joint. I eventually settled for my own (make better sense to me ) opinion. Mostly it's all about money. I agree you should report her to MDA or the oncologist association.

Moli-- Sending you both comforting vibes and hoping this gets resolved soon ,to lighten the stress.

Uncaring money hog

interesting...I didn't really consider that aspect since the local oncologist sees her prior to chemo and is in charge of ordering regular blood test, etc. Also, I believe this doctor is part owner of the treatment center. I was just thinking it was an ego thing. HMMMM....

thanks for caring

lmede64

Jhd2u said:

So sorry to hear this

Your sister doesnt need that kind of stress while fighting her battle.   Every patient at MDACC is assigned a patient advocate as part of her medical team.  If she still has her initial paperwork, the name should be on it; otherwise her nurse or customer service can tell her.  Her patient advocate can help her with this.  An advantage of MDACC is that while you do have one (primary) oncologist, your test results and treatment plan are reviewed and discussed by a team of doctors experienced int hat type of cancer.  Your "lone wolf" oncologist seems to want to do things her own way.  I went to MDACC for a second opinion and the treatment plan they proposed was different than my initial oncologist.  But the MDACC oncologist explained their reasoning and it seemed very logical - and I switched immediately.  I have never regretted the choice.  Living in Houston, i have friends and coworkers going there; if she has any questions feel free to pm me.  

MDACC patient advocate

this is along the lines that I was thinking but much more specific. I'm definitely going to talk to her about this. She is definitely pleased with the care she has gotten there. I accompanied her on a visit last year and was very impressed with the entire setup. it's not just the money factor that limits her visits but also the energy. It takes its toll. 

What makes it more concerning is that she has gotten (in my opinion) some very poor care over the years..missed tests, inaccurate diagnoses and poor communication. It's been quite a journey.

Hopefully she'll follow up with MDA, and I'll have some good news.

thanks for your advice,

Linda