not happy with M D Anderson

crselby

Ladies, I'm dumping again.

As I was creating my last post, to hug or not to hug, I received a call that my MRI biopsy for tomorrow has been cancelled.  The radiologist just got back from a week's vacation and reviewed my old films and cancelled it.  I had been lobbying for that since one of the 2 spots seen in the MRI has been there since 2009 in repeated MRIs and was deemed 'stable and benign' in 2010. The radiologist had access to the old MRIs from the beginning.  Why did he schedule the biopsy after an MRI on April 16 without comparing old films?  I've been stressed for 11 days worrying about this.  In fact, as I left the appointment with the surgeon, who gave me the MRI results and need for MRI biopsy, on Friday April 17 I asked her if there was someone I could talk to about anxiety.  She said oh yes they have a great clinical psychologist she's wonderful yes she'll get me an appt.  Well, it's April 28th, they just cancelled the MRI biopsy (yay, I think).  So I want to move up the Friday appt to look at treatment options, but I get the "leave a message" thing from surgeon's scheduler.  I called MDAnderson back because I felt tears rising in my eyes to see if I can make my own appt with the "great" clinical psychologist.  Absolutely not.  So I explained to that person that my surgeon was going to put in that order but I haven't heard anything yet, over a week later.  So that person looks for an order and, oh yes, there it is.  Wait wait I say, when was that order put in?  Friday, she replies (today is Tuesday).  So she gives me a number for the surgeon's scheduler person.  I don't really understand why but OK.  I just called that number and get the "leave a message and someone will get back to you within 24 hours."  My message started out pretty clearly, giving the spelling of my last name and my date of birth like they asked but then it deteriorated into a scared shaky voice of someone whining about not being too happy with the great new MD Anderson Cancer Clinic here in AZ.  This is my second time around with breast cancer and, as I said in my message, "I'm NOT feeling the love from MD Anderson. Call me back or I can go somewhere else for treatment."   Maybe I shouldn't have said the last part because, after all, who wants to have surgeons working on you that you have whined to and cried to and threatened to leave?

Sometimes I hate our healthcare system.

~~Connie~~

morgamed

So sorry Connie

Take the words out of Donald Trumps mouth and say "You're Fired"!  I had similar experience with an oncologist, oncologist surgeon and a hospital.  They all got fired due to poor service and I wasn’t putting up with it.  I finally found a great surgeon and things worked out much better.  You are paying them.  You should demand and get the respect you deserve.  It’s all a numbers game to them and they like the good paying insurance companies over the less ideal companies.  

I started taking with me blank invoices with my name, home number and address pre printed on them.  If I had to wait more than 15 minutes for the Dr then I started my own billing system against them.  I charged $200 a hour.  That was $50 dollars for every fifteen minutes they made me wait for them from my appointment time.  Once I had to wait for an hour and a half for my oncologist and I handed him a bill once I got to see him for 250.00 and he was speechless.  Needless to say that visit was FREE never charged on my insurance and I got several apologies and a hand written thank you note for bringing this matter to their attention.  

You have to do what is in your heart.  If you are upset with their service if you can go find someone that will work for you.  Not you work around them.

We should not be back seat drivers in our cancer care we should be behind the wheel honking the horn all the way! 

I will keep you in my thoughts.

VickiSam

morgamed said:

So sorry Connie

Take the words out of Donald Trumps mouth and say "You're Fired"!  I had similar experience with an oncologist, oncologist surgeon and a hospital.  They all got fired due to poor service and I wasn’t putting up with it.  I finally found a great surgeon and things worked out much better.  You are paying them.  You should demand and get the respect you deserve.  It’s all a numbers game to them and they like the good paying insurance companies over the less ideal companies.  

I started taking with me blank invoices with my name, home number and address pre printed on them.  If I had to wait more than 15 minutes for the Dr then I started my own billing system against them.  I charged $200 a hour.  That was $50 dollars for every fifteen minutes they made me wait for them from my appointment time.  Once I had to wait for an hour and a half for my oncologist and I handed him a bill once I got to see him for 250.00 and he was speechless.  Needless to say that visit was FREE never charged on my insurance and I got several apologies and a hand written thank you note for bringing this matter to their attention.  

You have to do what is in your heart.  If you are upset with their service if you can go find someone that will work for you.  Not you work around them.

We should not be back seat drivers in our cancer care we should be behind the wheel honking the horn all the way! 

I will keep you in my thoughts.

I 'Ditto' morgamed's posting ....

altho, I am impressed with morgamed Oncologist bill ==  Wow, never hear or witness this!

 

Vicki Sam

VickiSam

VickiSam said:

I 'Ditto' morgamed's posting ....

altho, I am impressed with morgamed Oncologist bill ==  Wow, never hear or witness this!

 

Vicki Sam

Connie ...

Any updates ??  Any decisions made ?

 

We are worried about you --  Please let us know when time permits ..

 

Vicki Sam

crselby

plan

My husband and I talked with the breast surgeon yesterday.  She filled us in on why the MRI guided biopsy was cancelled and gave me a copy of the report from the radiologist.  I had alerted him to the similarities in one of the lesions he wanted to biopsy to old MRIs finding a lesion in the same place and deeming it, 5 years ago, stable and benign.  But I didn't know why he was ignoring the second spot he had seen.  She thought he had told me, he never called, so I didn't know.  It turns out he examined old films, not just reports, and saw that same spot, but no report had ever been made of it.  So, with it's being there long ago, he felt that spot must also be stable and benign.  OK, so no MRI guided biopsy. Just one area of DCIS in affected breast.

 

She kept saying, "you're young" and I finally interpreted that to mean, you should not go flat, you should have reconstruction.  Now I don't know if that was out of a genuine concern for me or to make more money for MDA by including reconstruction surgery with the mastectomies.  She sure didn't try to talk me out of bilateral mastectomies even though there is nothing wrong with the contralateral breast.  (That would cut into what they can charge me for I guess).  However, when I said I would only consider DIEP for further surgery (I refuse to call it reconstruction because it results in nothing like the breast they are cutting off) she had to admit that they cannot do that procedure at MDA.  I would have to go to the only surgeon in AZ who does it, at Mayo.  And my insurance doesn't cover Mayo. She will refer me there to get an appointment with him however.  She said the surgery, bilaterally, would take 13 hours.

 

Has anyone had DIEP done with mastectomies, all in the same surgery, bilaterally?  I want to know about your experience.  Please share!

 

Thanks for asking, VickySam!

~~Connie~~

New Flower

crselby said:

plan

My husband and I talked with the breast surgeon yesterday.  She filled us in on why the MRI guided biopsy was cancelled and gave me a copy of the report from the radiologist.  I had alerted him to the similarities in one of the lesions he wanted to biopsy to old MRIs finding a lesion in the same place and deeming it, 5 years ago, stable and benign.  But I didn't know why he was ignoring the second spot he had seen.  She thought he had told me, he never called, so I didn't know.  It turns out he examined old films, not just reports, and saw that same spot, but no report had ever been made of it.  So, with it's being there long ago, he felt that spot must also be stable and benign.  OK, so no MRI guided biopsy. Just one area of DCIS in affected breast.

 

She kept saying, "you're young" and I finally interpreted that to mean, you should not go flat, you should have reconstruction.  Now I don't know if that was out of a genuine concern for me or to make more money for MDA by including reconstruction surgery with the mastectomies.  She sure didn't try to talk me out of bilateral mastectomies even though there is nothing wrong with the contralateral breast.  (That would cut into what they can charge me for I guess).  However, when I said I would only consider DIEP for further surgery (I refuse to call it reconstruction because it results in nothing like the breast they are cutting off) she had to admit that they cannot do that procedure at MDA.  I would have to go to the only surgeon in AZ who does it, at Mayo.  And my insurance doesn't cover Mayo. She will refer me there to get an appointment with him however.  She said the surgery, bilaterally, would take 13 hours.

 

Has anyone had DIEP done with mastectomies, all in the same surgery, bilaterally?  I want to know about your experience.  Please share!

 

Thanks for asking, VickySam!

~~Connie~~

Hi Connie

I had one side with DIEP reconstruction. It is difficult surgery  one side 8-10 and recovery for at least 8 weeks. It is  reasonable recovery  however since I have had recurrence and progression I am against any reconstruction now. Back then 7 years ago I was 46 years old and was told that I am very young and should consider reconstruction without doubts. I did what my surgeon told me to do and belived in my treatment plan at that time. I do not have any regrets, however As I sad my situation is different as I was "cancer free" for 4 years only.

I hope you will hear from others who are still free and can cheer you up for any reconstruction decision you will make. 

GlowMore

crselby said:

plan

My husband and I talked with the breast surgeon yesterday.  She filled us in on why the MRI guided biopsy was cancelled and gave me a copy of the report from the radiologist.  I had alerted him to the similarities in one of the lesions he wanted to biopsy to old MRIs finding a lesion in the same place and deeming it, 5 years ago, stable and benign.  But I didn't know why he was ignoring the second spot he had seen.  She thought he had told me, he never called, so I didn't know.  It turns out he examined old films, not just reports, and saw that same spot, but no report had ever been made of it.  So, with it's being there long ago, he felt that spot must also be stable and benign.  OK, so no MRI guided biopsy. Just one area of DCIS in affected breast.

 

She kept saying, "you're young" and I finally interpreted that to mean, you should not go flat, you should have reconstruction.  Now I don't know if that was out of a genuine concern for me or to make more money for MDA by including reconstruction surgery with the mastectomies.  She sure didn't try to talk me out of bilateral mastectomies even though there is nothing wrong with the contralateral breast.  (That would cut into what they can charge me for I guess).  However, when I said I would only consider DIEP for further surgery (I refuse to call it reconstruction because it results in nothing like the breast they are cutting off) she had to admit that they cannot do that procedure at MDA.  I would have to go to the only surgeon in AZ who does it, at Mayo.  And my insurance doesn't cover Mayo. She will refer me there to get an appointment with him however.  She said the surgery, bilaterally, would take 13 hours.

 

Has anyone had DIEP done with mastectomies, all in the same surgery, bilaterally?  I want to know about your experience.  Please share!

 

Thanks for asking, VickySam!

~~Connie~~

In my Thoughts*

Have you in my thoughts and prayers Connie as you go thru this terrible time.   My thought about her saying "You're Young" is different .... I think that being young... she means you have a long life ahead.....the cosmetic part is important of course....but the SURVIVAL PART should be paramount.            Hang in there girl....we are with you.  xxoo  Glo

yourbesthealth4life

MD Anderson Clinic

I feel your pain, sometimes these clinics and offices are just so...corporate.  You want to talk to a person and all you get is a recording.  If leaving them and going to another Cancer Center will help you get answers then I say go for it.  

alabama_survivor

yourbesthealth4life said:

MD Anderson Clinic

I feel your pain, sometimes these clinics and offices are just so...corporate.  You want to talk to a person and all you get is a recording.  If leaving them and going to another Cancer Center will help you get answers then I say go for it.  

I love the Montgomery Cancer

I love the Montgomery Cancer Center in Montgomery Alabama, which is about 17 miles from house.  This place treats so many patients, yet everyone is so personable.  The nurses in the treatment room knew me, when I did chemo, and they tried to give me the same nurse each time.  Often, my oncologist would be in the hall when I would go back to the exam room, and was very personable and laid back, and I've always been made to feel like an individual, and like I was important.  Also, on the couple of occassions I've had reason to call down there, a person, not a recording will answer my call.