New and conflicted about surgeon options

MilaQ
MilaQ Member Posts: 22

Hi everyone,

What a wonderful community this is! I’m blown away by how much people support each other on this difficult journey. A little about me – I’m a 45 y.o. female, live in Atlanta, and I just joined this forum. I have a 4.5cm septated cyst on my right kidney, presumably localized.  I am scheduled for a robotic partial nephrectomy on Feb 26. This cyst is positioned close to kidney’s main blood vessel and drain canal, so there is a possibility the entire kidney might come out if kidney’s “infrastructure” is compromised during the surgery.

Problem – for a number of reasons I’m not comfortable with my surgeon. I also not very comfortable with the clinic itself as this is a local provider with not such a great record in urologic oncology/ surgery. So, over the last three weeks I’ve been desperately trying to locate, research, and schedule appointments at other clinics. I now have two options but feel a bit confused. I am hoping maybe you could share your wisdom and help me with this decision?

Option 1 – I can have my surgery at Emory, which is a teaching institution with hopefully higher quality doctors/ surgeons. I guess that’s the best I can get here in Atlanta. I already have a consultation scheduled there this Monday, Feb 10.

Option 2 - Mayo Clinic in FL. I can get a consultation appointment with Dr. Thiel on Feb 24. From what I know, surgeons at Mayo are pros at what they do. The concern I have here is two-fold – (1) the surgery would probably be a lot later than Feb 26, and (2) post-surgery logistics would be a nightmare. I.e. would I be able to tolerate an over 6 hr car ride home the day after the surgery?  Or would I have to stay in Fl in a hotel for a week or two with my family? But then the kids would miss school for that long?

What would you do? Would you settle for the best you could get in your local area, or would you travel the distance to do your sugery at Mayo Clinic, albeit with a later surgery and inconvenience of being far from home? 

Thank you in advance for any input!

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Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    Go uo Emory

    Assuming you are comfortabke with the doctod there.. You will not br ablr to tolerate  s 6 hour rifr right efter surgery.  Thid id my opinion, others may differ. Belirve it or not your fiagnosis so far diagnosis is routne and you have top medical care in yout bsckyard.

    Good luck.

     

     

     

     

    ocemantoo

  • MilaQ
    MilaQ Member Posts: 22
    edited February 2020 #3
    icemantoo said:

    Go uo Emory

    Assuming you are comfortabke with the doctod there.. You will not br ablr to tolerate  s 6 hour rifr right efter surgery.  Thid id my opinion, others may differ. Belirve it or not your fiagnosis so far diagnosis is routne and you have top medical care in yout bsckyard.

    Good luck.

     

     

     

     

    ocemantoo

    Icemantoo, thank you for the

    Icemantoo, thank you for the input! After reading this forum I did figure out that what I have seems to be a farily common situation and not a rocket science to a skilled surgeon. Of course on my personal level I feel getting the best surgeoun could lead to better outcome and experience. I am still not over mentally processing the diagnosis and probably make a bigger deal out of this decision than needs to be.  I am seeing the Emory dr tomorrow, hopefully it's a match. 

    Once again thank you for chiming in!

     

  • AliceB1950
    AliceB1950 Member Posts: 186 Member
    Gary O said:

    Stage 4 Renal Cell Carcinoma/Lymphatic System

    On January 23rd was diagnosed with Stage 4 Metistatic Renal Cell Carcinoma. It re occurred from after a 2013 partial Nephrectomy of my left kidney. I have had an initial meeting with an oncologist and she has ordered a MRI and referred me to a specialist for Clinical Trial referral. My cancer is Clear Cell and it does not respond to chemo. My oncologists indicated that drugs, given my heart condition may be too harsh. She indicated I have a 40 month prognosis.

    My wife and I have been reading everything we can regarding options. I am 66 years old and still working. At this point I am confused and fearful of next steps.

     

    Gary O, you should start a

    Gary O, you should start a new thread for your topic.  Other people with Stage 4 who could give you advice won't find your questions in a thread about something else.

  • Gary O
    Gary O Member Posts: 3
    edited February 2020 #5
    Stage 4 Renal Cell Carcinoma/Lymphatic System

    On January 23rd was diagnosed with Stage 4 Metistatic Renal Cell Carcinoma. It re occurred from after a 2013 partial Nephrectomy of my left kidney. I have had an initial meeting with an oncologist and she has ordered a MRI and referred me to a specialist for Clinical Trial referral. My cancer is Clear Cell and it does not respond to chemo. My oncologists indicated that drugs, given my heart condition may be too harsh. She indicated I have a 40 month prognosis.

    My wife and I have been reading everything we can regarding options. I am 66 years old and still working. At this point I am confused and fearful of next steps.

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    MIla

    Hi....since your asking for an opinion....I would try to figure out what it is about the local doc that makes you uncomfortable.  Personally, experience and expertise is more valuable to me, than their personality.  It certainly would be best to have someone with a lot of experience and that you happen to like.  I would choose Emory at this point in time.

    in my husband's case, our small town doctor was overjoyed to be able to remove his kidney.  I didn't like him.  He was rude and wouldn't answer questions, and would not tell me if he has ever done the surgery before.  We did a quick consult at a major medical center about 2 hour drive away.  It worked out very well for us.  I was interested in sparing some of the kidney if possible.  The first guy acted like it didn't matter.  It does.  We also found out, by having a preop MRI that the tumor grew into the blood vessels.  I am certain the local hospital was not able to deal with that.  They wouldn't have even known prior to the surgery.  Husbands tumor was also 4.5 cm.   Location is important!!!!!

    Good luck to you.  Let us know what you decide and what you find out.

  • eug91
    eug91 Member Posts: 382 Member
    welcome

    Sorry you had to join us, Mila, but this is a great forum here. We've been through what you're going through, so we know you're going to do great. 

    If it was me, I would go option 1. At least in my experience, I handled a two hour car ride a week after my procedure, but I would have had great difficulty getting through a six hour drive. 

    Good luck! 

  • APny
    APny Member Posts: 1,995 Member
    Hi Mila. I agree that option

    Hi Mila. I agree that option 1 seems best as a six hour drive would be daunting after surgery. I'm not sure if I understood you correctly. Is the surgeon you're uncomfortable with at Emory? Or is Emory an alternate option to your local hospital. In any case, I would opt to go with the most experienced surgeon. Robotic partial neph requires a great deal of skill so I'd make sure my surgeon is highly experienced in this procedure.

  • Bay Area Guy
    Bay Area Guy Member Posts: 559 Member
    I'd go to Emory as well.  The

    I'd go to Emory as well.  The wear and tear of a six hour trip,even after, hopefully, robotic surgery, would do you mor3 harm than good.

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    Choices

    At this stage of the game, what a wonderful option.  I could not stay local, as the surgeon had almost no experience for advanced Stage 4 Renal cancer that had mets to the liver and ??

    I chose Oregon Health Sciences Univerisity, a 5 hour drive, one way.  The day I was released, we stayed in a motel in an outlying city and left the next morning.  A mid way stop to stretch, eat, and rest and then home.  Much of it was freeway, and it was tiring.

    My second surgery, also at OHSU, I was only in for 4 days and felt great.  My hubby got tired of driving after about 4 hours so I drove the rest of the way, and had no problems.  That was safer than having him go to sleep at the wheel.

    I'd go with Emory.

    As you prepare for that day, get your projects in order, buy and address BD cards or others that just need to be dropped in the mail, make sure you have clean sheets to come home to, buy some reading material for recovery time.  And relax.  We all have come thru the surgeries, some a bit more battered and bruised, but we made it.

    Now we get to sit here and give advice to "Newbies" like you.

    Just keep asking questions...there's a lot of information coming from survivors on this board.

    Hugs and best wishes...  And Go War Eagle.

    donna_lee

  • MilaQ
    MilaQ Member Posts: 22
    edited February 2020 #11
    I am beyond grateful for all

    I am beyond grateful for all of your responses!

    Based on this feedback, as well as discussions with my husband, we did decide to go with Emory. My surgery is scheduled for Mar 6.  But I will be honest – this is a bittersweet decision. After having my consult at Emory yesterday, I was left psychologically shattered.  

    I admit, I had no clue what a teaching hospital was about. I wasn’t prepared to be treated as a data point in a statistical universe, and most of all – as a lab rat.  The top priority, at least for this Doctor, is not my cancer. It’s the surgical practice for his trainees, as well as his research studies.  This was a very clear message.

    The Doctor didn’t bother spending time to explain my condition/ prognosis, just made a couple of brief statements.  When I started going over my list of questions, he acted bored and almost annoyed. He would only give me one-two word responses, no elaboration on anything, with the expression “are you done yet?” on his face. He spoke more to the residents in the room than to me during this appointment. When my husband asked if we could have a brief chat with the Doctor privately, without the audience of the residents, the Doctor stated that I shouldn’t operate with him if I don’t want residents present.  When we inquired about the role these residents would play during my surgery, he wasn’t willing to share details but mentioned that they'd be the ones stitching me.  His overall attitude was “You want to operate with me? Yes-No? Next.” 

    Skills-wise, this Emory Doctor is the best surgeon I have so far. Or so I think. He is specialized in complex and aggressive kidney cancers and would be the best positioned to identify issues and deal with unexpected complications during surgery.  There is a concern, however – he mostly does laparoscopic surgeries, but he wants to do a robotic one on me. His scheduler told me he doesn’t do many robotic surgeries.

    I also found out that the original (non-Emory) surgeon I saw actually sends his patients with complex cancers to this Emory doctor, so this speaks for his skills I suppose.

    I put together a table with some metrics for the original surgeon I saw at a local clinic, and for the Emory Doctor. Curious what you think.

                                                                    Original Surgeon                              Emory Surgeon/professor

    Years in practice                                               <5                                                           30+

    Kidney Cancer Specialty                 Non-complex cases                         Aggressive/complex kidney cancers

    Number of kidney surgeries         ~150 total, 1-2/week now                            ~300 a year

    Robotic nephrectomies                     same as above                              A lot less than above (no # given)

    Length of surgery                                   2.5-3 hrs                                                        3 hrs

    Number of incisions                                        6                                                              5-6

    Days in hospital                                             1                                                              2

    Use of narcotics                                             3 days                            None (ice-packs + OTC painkillers only)

     

    Anyway, that’s where I am. Thank you for reading through my venting. And if anyone has any wisdom regarding surviving a surgery at a teaching hospital, without losing dignity and sanity, please chime in!

  • MilaQ
    MilaQ Member Posts: 22
    edited February 2020 #12
    eug91 said:

    welcome

    Sorry you had to join us, Mila, but this is a great forum here. We've been through what you're going through, so we know you're going to do great. 

    If it was me, I would go option 1. At least in my experience, I handled a two hour car ride a week after my procedure, but I would have had great difficulty getting through a six hour drive. 

    Good luck! 

    Thank you, eug91!  Car ride

    Thank you, eug91!  Car ride is my main concern. I did think to maybe stay in a hotel for a few day if we were to go to Mayo Clinic, but it adds a different layer of complexity. After all, there is nothing like home, especially when it comes to recovery!

  • MilaQ
    MilaQ Member Posts: 22
    a_oaklee said:

    MIla

    Hi....since your asking for an opinion....I would try to figure out what it is about the local doc that makes you uncomfortable.  Personally, experience and expertise is more valuable to me, than their personality.  It certainly would be best to have someone with a lot of experience and that you happen to like.  I would choose Emory at this point in time.

    in my husband's case, our small town doctor was overjoyed to be able to remove his kidney.  I didn't like him.  He was rude and wouldn't answer questions, and would not tell me if he has ever done the surgery before.  We did a quick consult at a major medical center about 2 hour drive away.  It worked out very well for us.  I was interested in sparing some of the kidney if possible.  The first guy acted like it didn't matter.  It does.  We also found out, by having a preop MRI that the tumor grew into the blood vessels.  I am certain the local hospital was not able to deal with that.  They wouldn't have even known prior to the surgery.  Husbands tumor was also 4.5 cm.   Location is important!!!!!

    Good luck to you.  Let us know what you decide and what you find out.

    a_oaklee, thank you for this

    a_oaklee, thank you for this information! Insufficient experience and inability to deal with complex cases is exactly what makes me doubt the original sureon. The Emory guy is by far more skilled, althouh not in robotic surery which he wants to do on me. See my long post below with all the details. 

    I am very happy your husband was able to avoid the local doctor - it's scary to think how things might have turned out otherwise!

  • MilaQ
    MilaQ Member Posts: 22
    edited February 2020 #14
    APny said:

    Hi Mila. I agree that option

    Hi Mila. I agree that option 1 seems best as a six hour drive would be daunting after surgery. I'm not sure if I understood you correctly. Is the surgeon you're uncomfortable with at Emory? Or is Emory an alternate option to your local hospital. In any case, I would opt to go with the most experienced surgeon. Robotic partial neph requires a great deal of skill so I'd make sure my surgeon is highly experienced in this procedure.

    Hi APny,

    Hi APny,

    Thank you for responding!  In my original post I mentioned being uncomfortable with the doctor at a local clinic. The Emory doctor was someone I wanted instead, especially if Mayo Clinic is too much of an inconvenience. Well, after meeting this Emory doctor yesterday, I am still unhappy. He has different priorities and I am not sure this is a good thing for me (trainees will be practicin on me). He is highly skilled, however less so in robotic surgery. Yet I still plan to go with him due to the lack of better options. 

  • MilaQ
    MilaQ Member Posts: 22

    I'd go to Emory as well.  The

    I'd go to Emory as well.  The wear and tear of a six hour trip,even after, hopefully, robotic surgery, would do you mor3 harm than good.

    Thank you Bay Area Guy! Seems

    Thank you Bay Area Guy! Seems it is unanimous regarding Emory!

  • MilaQ
    MilaQ Member Posts: 22
    donna_lee said:

    Choices

    At this stage of the game, what a wonderful option.  I could not stay local, as the surgeon had almost no experience for advanced Stage 4 Renal cancer that had mets to the liver and ??

    I chose Oregon Health Sciences Univerisity, a 5 hour drive, one way.  The day I was released, we stayed in a motel in an outlying city and left the next morning.  A mid way stop to stretch, eat, and rest and then home.  Much of it was freeway, and it was tiring.

    My second surgery, also at OHSU, I was only in for 4 days and felt great.  My hubby got tired of driving after about 4 hours so I drove the rest of the way, and had no problems.  That was safer than having him go to sleep at the wheel.

    I'd go with Emory.

    As you prepare for that day, get your projects in order, buy and address BD cards or others that just need to be dropped in the mail, make sure you have clean sheets to come home to, buy some reading material for recovery time.  And relax.  We all have come thru the surgeries, some a bit more battered and bruised, but we made it.

    Now we get to sit here and give advice to "Newbies" like you.

    Just keep asking questions...there's a lot of information coming from survivors on this board.

    Hugs and best wishes...  And Go War Eagle.

    donna_lee

    Donna, you are quite a

    Donna, you are quite a trooper to drive that far after being dischared!

    Thank you for the encouragement, and thank you for pre-surgery tips! Advice like this is very helpful. Good point about clean sheets. Up until now I've been more obcessed with figuring out kids school lunches, since I'm not sure my husband can manage packing these :)  

    Hugs to you too!

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    March 6 is not too long a wait.

    Miy wait was several months for my Neph' On the other hand I just had my Gallbladder removed on New Years eve. I met my Surgeom at 4pm amd I was out of recovery within a few hours. Thats what you call emergency surgery. Unfortinately thats what you have to go, to get to the  head of thr  line.

     

    icemantoo

  • APny
    APny Member Posts: 1,995 Member
    The type of surgery should

    The type of surgery should really be left up to you. If he's not experienced in robotic you have every right to ask for plain old laproscopic, which he IS experienced in. You have the right to refuse robotic. My surgeon at Sloan Kettering gave me options and in the end I went with an open partial. I was given the option to participate in two research studies and I agreed, so I guess I was a lab rat which I didn't mind. Pre-surgery advice given me was to walk several miles a day and to use a breathing apparatus (spirometer) several times a day to increase lung function. I think you should do the same. It was winter so I used a treadmill twice a day.

    When you're ready to go home make sure you have a large garbage bag for the seat of the car. This way you can just swivel into place, which is easier than twisting your body. Have a pillow to cushion the incision side against the seat belt. For home, get a wedge pillow to raise you up a bit. Drink lots of water and walk as much as possible.

    As for your surgeon's bedside manner, or lack there of, it really annoys me. They're being PAID, it's not like they're doing us a favor. There's no excuse for not answering questions or acting put out if patients are apprehensive. I don't think it's a biggie that he has residents assisting; he's the one who is doing the actual nephrectomy. So I really wouldn't worry about it.

  • MilaQ
    MilaQ Member Posts: 22
    icemantoo said:

    March 6 is not too long a wait.

    Miy wait was several months for my Neph' On the other hand I just had my Gallbladder removed on New Years eve. I met my Surgeom at 4pm amd I was out of recovery within a few hours. Thats what you call emergency surgery. Unfortinately thats what you have to go, to get to the  head of thr  line.

     

    icemantoo

    Thanks, Icemantoo! I agree

    Thanks, Icemantoo! I agree that Mar 6 is not that far. I definitely don't want to get ahead of the line the way you described :). But being serious, I can imagine the shock you must have had when you learned you needed an emergency surgery. 

  • MilaQ
    MilaQ Member Posts: 22
    APny said:

    The type of surgery should

    The type of surgery should really be left up to you. If he's not experienced in robotic you have every right to ask for plain old laproscopic, which he IS experienced in. You have the right to refuse robotic. My surgeon at Sloan Kettering gave me options and in the end I went with an open partial. I was given the option to participate in two research studies and I agreed, so I guess I was a lab rat which I didn't mind. Pre-surgery advice given me was to walk several miles a day and to use a breathing apparatus (spirometer) several times a day to increase lung function. I think you should do the same. It was winter so I used a treadmill twice a day.

    When you're ready to go home make sure you have a large garbage bag for the seat of the car. This way you can just swivel into place, which is easier than twisting your body. Have a pillow to cushion the incision side against the seat belt. For home, get a wedge pillow to raise you up a bit. Drink lots of water and walk as much as possible.

    As for your surgeon's bedside manner, or lack there of, it really annoys me. They're being PAID, it's not like they're doing us a favor. There's no excuse for not answering questions or acting put out if patients are apprehensive. I don't think it's a biggie that he has residents assisting; he's the one who is doing the actual nephrectomy. So I really wouldn't worry about it.

    APny, thank you for reading

    APny, thank you for reading my long post and understanding me. I've been stressing out ever since my appointment at Emory, and now fear the surgery more than before I met this doctor.  No, he didn't give me any options as to laporoscopic vs robotic vs open. As I mentioned, he was very brief during that appointment. I actually emailed his assistant yesterday with a few questions, one of which was to tell me a number of robotic surgeries he performed in the last year. No response.

    When I was initially researching this doctor, I mostly saw raving reviews (shocker!), a few unhappy ones because of his lack of care for patients, and even fewer very upset ones. One bad review that stood out, and now resurfaced in my head, was from a son of a women on whom this doctor operated. She died 4 months after the surgery, and this son states that the death was a result of the surgery (she was stage IV).  He was complaining how the doctor wouldn't speak to him or respond to inquiries regarding his mother's surgery. Makes me wonder if this was a practice robotic surgery?  

    And of course it bugs me that his priorities are misaligned with mine. I'm talking about his emphasis on trainees and thier ediucation, rather than on helping me overcome cancer.  This just scares me. 

    My gut feeling is fighting my decision to operate with him, but other than starting shopping for another surgeon, I don't see a better solution.

    Apny, I also appreciate your advice on preparing for the surgery. As I was reading through other threads, I started compiling a list of items to prepare, including spirometer and a trash bag - you wrote about it in one of your earlier posts and I immediately took a note of it :)

    Regarding walking - ever since I found out about cancer, I've been walking/jogging 4 miles on a treadmill every day, plus eating super-healthy. Daily step count ranges 12,000-18,000. I will definitely increase the miles as I get closer to the surgery.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited February 2020 #21
    Surviving a teaching hospital

    It never bothered us at all.  Every person we encountered was polite.  We felt like if our surgeon was teaching others, then he must be really good (knowledgeable and experienced).  The residents mostly listened and were present.  You can ignore them.  We felt good that we were helping new doctors, and were glad that more people were becoming doctors.  I kept a notepad to keep track of who everyone was.  The hospital we were at, all the staff had business cards with their photo on them.  We didnt feel like lab rats, or that we needed privacy.  It wasnt embarassing at all, nor any concerns with exposure and being examined or questioned.  We had a choice of having clergy visit during my husbands stay.  We welcomed all denominations because it was interesting.  Even the clergy had interns.  We are glad we helped people learn.  I think you should try to think of this differently, and if you cant, then go to a regular private hospital.  Honestly, I think that would be a big mistake.

    We saw our urologic surgeon before surgery, during the hospitalization, and one time after surgery.  He is not our doctor.  He is a surgeon only.

    After you get through this, you can visit a urologist as your caregiver going forward.  Or you see an oncologist.  We see a urologic oncologist.

    I disagree that you are the one that chooses what approach to take with surgery.  Well, perhaps you do have the right to make the wrong choice.  I think this doctor felt that you didnt have a choice because he has determined what is best for you.  Too bad he didnt explain.  Surgeons are kindof known for being the most arrogant of all specialists.  If I had to guess, the guy got offended being asked about his experience in front of his students.  Too bad.  But I do get it.  

    These big places have lots of assistants.  We always have contact with their nurse practitioners who are extremely knowledgeable.   Perhaps it would be good to talk with him/her about whatever questions you may have.  

    Have you visited Emorys website to check out other doctors that do urologic surgeries?  I think you could try to see someone else, but you will have the same audience.