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New and conflicted about surgeon options

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

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!

icemantoo's picture
icemantoo
Posts: 3247
Joined: Jan 2010

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's picture
MilaQ
Posts: 22
Joined: Feb 2020

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!

 

Gary O's picture
Gary O
Posts: 3
Joined: Feb 2020

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.

 

AliceB1950's picture
AliceB1950
Posts: 51
Joined: Jun 2019

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.

a_oaklee
Posts: 499
Joined: Nov 2013

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.

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

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!

eug91's picture
eug91
Posts: 200
Joined: Jan 2019

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! 

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

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!

APny's picture
APny
Posts: 1976
Joined: Mar 2014

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.

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

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. 

Bay Area Guy's picture
Bay Area Guy
Posts: 392
Joined: Jun 2016

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.

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

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

donna_lee's picture
donna_lee
Posts: 930
Joined: Feb 2009

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's picture
MilaQ
Posts: 22
Joined: Feb 2020

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!

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

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!

icemantoo's picture
icemantoo
Posts: 3247
Joined: Jan 2010

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

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

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. 

APny's picture
APny
Posts: 1976
Joined: Mar 2014

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's picture
MilaQ
Posts: 22
Joined: Feb 2020

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.

APny's picture
APny
Posts: 1976
Joined: Mar 2014

Is there anyone else at Emory that you could go with? It's a shame that your gut feelings are against this one. I hope at least you get an email answer to your questions. Hang in there!

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

APny, yes, there are other doctors at Emory, as skilled. I don't know if I get a better experience, but I heard doctors look down at patients who do doctor hopping. 

I literally just got a message with responses to my questions. Looks like the doctor was responding himself.  Most of the answers were satisfactory. For example, he said that assisting residents would be either senior residents or chief residents. That makes me feel better.

One answer was worrisom. I asked for a nunber of robotic surgeries he performed last year. He wrote: "Don't know the precise number. Certainly, enough to feel confident". During appointment, when I asked about number of nephrectomies he performs, he said around 300 a year. He knew that number. But not even a ballpark for robotic? So, I feel he's trying to avoid disclosing this information.

Finally, at the end he wrote this: "Finally, if you feel more comfortable at a private hosptial, with no residents, I would be very supportive of your decision".  I guess he prefers I go away. Not a good start :(.

 

a_oaklee
Posts: 499
Joined: Nov 2013

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.

APny's picture
APny
Posts: 1976
Joined: Mar 2014

"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 meant that you can choose traditional lap over robotic lap; not that you determine whether it should be partial or whole, laparoscopic or open. But laparoscopic can be done either traditionally or robotically. I was told I can have open or lap, robotic or regular. I went with open for various reasons. I assume that the surgeon who does robotic lap can also do regular, non-robotic lap. And Mila should be able to say she does not want the robotic version.

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

a-oaklee,

Once again thank you for wisdom. I think the reason I got so triggered about this is because I am the kind of person who needs to know every step ahead. Emory experience was the opposite. I am also a very private and introverted person, therefore the audience and lab approach came as a shock. Had I known this ahead of time, I would have been prepared and reacted less strongly. I do take blame for not researching about teaching hospitals. Truly my bad.

I responded to APny, just two posts above, regarding the message I just received from the Emory doctor. Would you mind taking a look at it? I'm curious in your opinion on his robotic skills and how much I should be concerned about his suggestion to go elsewhere. 

a_oaklee
Posts: 499
Joined: Nov 2013

I dont think I expressed what I was thinking very well at all.  If I stepped on toes, offended anyone....im sorry.  Not sure if I should try to explain, or if I can.

What I meant is that sometimes you are not given a choice.  The doc tells you what the plan is.  They choose the plan based on you as a patient, plus what they are capable of, what kind of equipment the hospital has, etc..

My way of thinking, (which is merely an opinion)  and could be wrong, ....is that when you move on to more experienced surgeons at major medical teaching hospitals is that you are getting the best of the best.  For me, there is a point that you need to trust their judgement.  

I wish I expressed myself differently.  I should probably just have said that you make your best informed decisions as you can at the time.  In hindsight...the decisions can be right or not so right.  Cant go backwards.  Just do your best to figure it all out.  Its a blessing to actually have trust and faith in your medical team.  

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

a_oaklee, no need to appologize!  I don't think anyone was offended. Sometimes there could be a difference of opinions and that's a good thing. I am grateful to read about your experience at a teaching hospital, it makes it less scary for me and also sheds a light where I didn't see it. This is a huge value to me personally and to whomever might read through this thread in the future. 

a_oaklee
Posts: 499
Joined: Nov 2013

I read your last 2 posts.  Its very hard to comment on this doctor because I wasnt there to get a sense of him in person.  I think its great that he responded personally in an email to you.  I also think its good that he is telling you its okay for you to go somewhere else if you want to.  Its your choice what you decide.   

Since your husband was with you, what is his opinion?

Re the review you read about a son that couldnt talk to the doctor regarding his mother:  I agree with the doctor not discussing the mother with the son.  My husband and I filled out forms all over the place, so that I could have information and be present.  When you are admitted make sure they can talk to your husband.  Put it in writing.   Re operating on a Stage 4 patient, we left the care of our fancy doc and medical center because they refused to operate.  They thought he would die.  My husband thought that choice should be his, so we went to another big name place with people who were willing to proceed.  That was in 2013.

I am pretty sure you can find what you are looking for.  But only you can decide  what you want to do, or how much time you want to spend searching.

One thing I can tell you for sure is that when your surgery is done, you will be relieved.  I wish the very best for you.

Im sorry all this is so difficult.  I truly understand the difficulty.

I wanted to tell you that we didnt have an audience in our office visits.  That happened only as an inpatient in the hospital.  So I feel for you to have the experience that you had.  Our visits were always for an hour, and scans are always shown to us, and explained.  

I dont know anything about choices of surgical approach.  My husband had to have an open, total nephrectomy because the blood vessels were involved.  

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

a-oaklee  - you mentioned you didn’t have an audience at your teaching hospital appointment. In my case, it wasn’t just passive audience. I actually had to have a consult with these two residents first, before seeing my Dr. They asked me some very basic questions, made me unzip my pants and show them my c-section scar (!), then left “to review the scans and will come back to propose treatment options”. They came back already with the Doctor, and at that point became an audience. By the way, there were no options proposed, and the doctor didn’t show me my scans (I did see them with the non-Emory Dr). 

 

jazzgirl's picture
jazzgirl
Posts: 152
Joined: Nov 2017

I was also treated at a teaching hospital - a place I knew and was comfortable with - but I turned down the first doc they had me see despite him being high up (maybe top) in the department. I have to be comfortable with my doc, especially a surgeon. I researched all the oncologists and urologists  and asked for a second opinion from one of the others. I liked his attitude on his video and the way he talked about the surgery and patients - and his credentials are top notch. I was afraid to ask about second opiniion in the same hospital and the nurse said, "Oh we encourage patients to do that." Also I have found that I don't have to accept a resident working on me, at least in appointments, even at teaching hospital.  Maybe I've been lucky. It sure feels like it. I continue to see the same doc (oncologist/urologist/surgeon) for follow ups and would trust my life (or that of any of my family) to him again. I also had the luxury of a place to stay and friends and family nearby. I say research other surgeons at Emory. For me, I have to be confident and comfortable with the person cutting me open - that they will see me as a person. Take care -

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

Jazzgirl – seeing another urologic surgeon at Emory has been on my mind. There is a potential alternative, although he specializes in localized cancers only, but at the same time he’s a pro at robotic nephrectomies. The reason I am not pursuing this option is because I don’t want to delay my surgery once again (it’s a long wait for good surgeons). I already waited too long..  

a_oaklee
Posts: 499
Joined: Nov 2013

I got all jealous reading your post Jazzgirl, where you only have one doctor you love.  I figured out its because you are stage 1, and Im so happy for you.

My husband saw the Urological Surgeon, Neurology Surgeon, Radiological Doctor, Neurooncologist, Neurologist, Palliative Care Doctor, Pain specialist physician, his GP, Urologic Oncologist at the med center and one locally.  OMG. 10 doctors.  After surgery we didnt see the surgeons anymore.  Now he only has 4 doctors.   It sure was a shock to us, as my husband was very healthy.  

donna_lee's picture
donna_lee
Posts: 930
Joined: Feb 2009

You want the surgery to be done in a top notch way-so you get the best surgeon you can find.  I, too, was at a teaching hospital and had a team of two surgeons; one for the kidney and nodes in the lower abdomen and one doing the liver resect, gallbladder, and tubes.  11.5 hrs before being sent to ICU.  The following year, the same Renal surgeon was supervising a Resident for the recurrence in a node.  Both did great jobs, and were pretty good looking, too. In 2006, Surgeon #1 was Head of Urologic Surgical Oncology and #2 was Chief of Thoracic Surgery and in charge of the Liver Transplant Team.  That first surgery wiped me out for nearly 6 weeks and we ended up flying to Portland for my first check up and removal of 63 skin staples (I counted the little buggers). The release check up, we drove and met with the Medical Onc.  After reviewing my case he determined there were no drugs in any stage of testing to put me on at that time, since they considered there was no  active site.  Sutent was one of the only drugs approved at that time and it has been found to have numerous side effects.  But I surprised everyone and had 2 recurrences that were too small to detect in 2006.

 

A regular oncologist will take over your care, testing, etc. after that.  And you will have a GP or Primary Care doc for other needs.  The point I'm trying to make is try to tolerate a Surgeon with poor bedside manner if he can get you over the surgery hurdle.  My third surgery was done locally by an experienced doctor, but he was lousy at talking to me.  On a follow-up visit, I cracked a joke and he laughed.  I even said, "You can smile."

Although I had taught Health and Physical Education and subbed in biolgy, plus having had a couple of other major surgeries, Kidney Cancer was a new learning curve. I connected with a local support group that still meets once a week between Dx and the surgery and continued to attend for many years.  I read everything I could find-much on the internet, but sorted the scientific  facts from "quack cures". asked questions, found a couple of other locals with Kidney cancer dx's.  Once I got over the initial shock, I realized I desparately wanted to live and had a lot of things to get done before surgery and recovery.  That kept me focussed.  On the day I received the news, we knew that our daughter was moving back from the middle east with her boys prior to her husband's discharge from the service.  But did she follow thru with her plans to move to Portland, OR, or move to our town to help care for me for the 5-7 month death prediction I had been given.  After the group consult with the 3 doctors at OHSU, the first thing I did was call our son in our home town and tell him to call his sister and let her know she could still plan to move to Portland.

And here we are, going into 14 years since Dx and 12 years of no cancer.

Have HOPE  and many best wishes for success.

donna_lee

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

Donna, WOW! Your story is both terrifying and inspiring. Prognosis of only a few months to live?? 12 years ago??  How increadible! May your "no cancer" count continue for many, many, many years! 

AliceB1950's picture
AliceB1950
Posts: 51
Joined: Jun 2019

I've had surgeries at both teaching and non-teaching hospitals, and with a variety of surgeon personalities.  I also worked at a teaching hospital many decades ago.  One of the first things we were taught (unit clerks) was that surgeons could be SOBs, but it was because they were so focused on their work, and some developed a hard shell to do what they did: cut into living bodies all day!  That's a huge responsibility.  I want my primary care to have a good personality, but with any other doctor, it's not an indication of anything.  And the residents who assist already have plenty of experience.  If it's a medical student, they observe, and maybe take notes, but mostly make sure they're not in anyone's way.  I love the residents and senior students - they're the ones who will talk to you in the hospital and explain anything you need clarification on.  Same with the anesthesiology residents.

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

Hi Alice,

My frustration was caused by my lack of knowledge about Emory. And because I was (still am) a bit emotionally vulnerable due to the new diagnosis, I didn't take it well when the residents were imposed against my will. As to the way this Dr spoke to me, I can get past that. I agree, skills trump the attitude.  I am not worried anymore about assisting residents either - I learned they have to be in their senior year of residentcy to assist during surgery. I'm fine with that.

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

I’m so touched to see how many people stopped by to contribute. I am especially grateful, since outside of this forum and the medical staff, I have only 3 people to talk to – my husband and two of my closest friends. Keeping the c-word a secret from everyone else for now.

As to the Emory doctor, I am exhausted from [over] thinking about this. I decided I am sticking with this doctor, but only because (1) I don’t want to waste any more time waiting for new appointments, and (2) at some point I need to stop tormenting myself as it drains my time and energy.  I am not at piece with this decision at all, and I do worry about his limited experience with a robot. His poor bedside manners I can deal with, since now I know what to expect.

The reality is that I am still processing my diagnosis. My emotions are still raw, and my fears are very strong at this point. So, I probably somewhat overreacting.  You are right, once the surgery is over, things hopefully will get better. Until then, I’m a mess.

jazzgirl's picture
jazzgirl
Posts: 152
Joined: Nov 2017

I kind of lost track of stage - one nephrologist after surgery listed me as stage 4; the one I see now lists me as stage 3. I'm away from home so can't find the surgeon's note. I try not to think about it too much. So I do have another doc - since my surgery was in another state, I go there each summer for my follow ups, see friends and family, work on or attend a retreat, and go to jazz band camp. During the rest of the year, I have an appointment with a local nephrologist. I have to admit I was a little intimidated by her in the beginning, but over these 3 1/2 years we've gotten into a good working relationship and I would not want to change. So I check in with one doc or the other every six months, with a scan every year, alternating ultrasound and CT. 

jroco's picture
jroco
Posts: 25
Joined: Mar 2019

MilaQ, sounds like you are still struggling with your decision. I sent you a private message, regards Rich

donna_lee's picture
donna_lee
Posts: 930
Joined: Feb 2009

Some want to share with no one but 3 people like you.  That is your choice. I found that once the news was with my husband and son, they both wanted to find out all they could.  And since I work in an office with the public,  it didn't take long to get around  the area-that and the fact that I had to let coworkers know I would be gone a lot.  The outpouring of concern was emotionally lifting.  Yes, I had a few recommedations to: drink a weird tea (that guy died anyway); or, "If I'd had the money, I'd have taken my wife to Mexico for treatment."  I Thanked them for their thoughts and ignored them.  By then I had discovered that the only true cure for our type of cancer is removal from the body; and hope that no cells have metastasized to grow in another place.  Then, the newer drugs can shrink tumors to make them operable, immuno drugs, and others.  

I know Atlanta and it's surrounding communities are big, but don't be put off by fears if others know about the cancer.  Before surgery, I couldn't say much other than we knew it was Stage 4-kidney and liver.  After surgery, I decided to be very open and use it as an educational tool for some of the signs or symptoms that people might have.  Now, I have friends, business acquaintences, and others who see me, and with a pointed look, ask how am I doing.  They care.  And your friends will too.

Have Hope, and hugs to you,

donna_lee

p.s-if nothing more, we'll keep your mind busy reading emails.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     

a_oaklee
Posts: 499
Joined: Nov 2013

My husband only told me and the kids and swore us to secrecy.  I respect his choice, but its really hard on me.  I want to reach out and get the support from other people, but I cant.  CSN certainly helps when I need to connect and talk about it.

Its been 8 years now and I can see how wonderful it is to not tell people.  He doesnt want to be reminded of "c" everytime he sees someone.  

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

If we are on a secrecy topic - there are several reasons for me to go this route right now. As I mentioned earlier, this is still fresh for me, and I don't know the full picture until the pathology is done. So, here we go:

1. I don't want to see pity and saddness from eveyone - it will only depress me. I don't want to talk about cancer more than I have to, my brain is full of depressing cancer thoughts as it is.  

2. I don't want my kids to find out (10 and 14). We plan to tell them after pathology, and plan to do so as gently as possible. I know it will be hard for them, but it will be worse if the news comes from someone else.

3. My mom is in her 70s with fragile health. This news will kill her, there is no way she should know. 

4. I mentioned in one of my earlier posts that I am a very private person. This diagnosis is extremely personal to me and I want to keep it private, at least for now. 

If there is a need to share this with someone, I will of course, but it should really be a necessity.

My husband was diagnosed with early onset Parkinsons two years ago - his choice was also not to tell people unless it was necessary. We are quite a couple. 

stub1969's picture
stub1969
Posts: 831
Joined: Jul 2016

Hi, Mila.  Wow, you've really stoked the fire with this conversation.  Like you, I'm so happy our members jumped in to offer advice from their experiences.  If you click on my "name" you'll be taken to my "About Me" page.  You'll see I was treated at a Mayo facility.  My lead surgeon was Dr. Chow.  When I first went to Mayo, I met with him and two "fellowship" surgeons on his team.  It was a little intimidating having three surgeons walk in for our initial meeting, but Dr. Chow put me at ease right away.  He answered all my questions and laid out the plan that he would follow.  I left Mayo knowing I was in good hands.  On the downside, I've never met with Dr. Chow again.  In each of my follow-up appointments, I've had members of his team meet with me--in fact, it's been a different doctor each time.  I don't feel like I'm being pushed off to the side.  The reality is I was stage 1, which doesn't garner a lot of attention.

You've also brought up some questions/topics that will require some soul-searching on your part.  Whether to tell people, talking to your kids, privacy issues.  We're all different and I'm sure you will make decisions that you are most comfortable. 

 

Wishing you only the best as you approach your surgery date. 

Stub 

  

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

Hi Stub,

Thank you for joining the gathering :) And sorry it took me a few days to respond.

I just read your story. Must have been quite a journey with two major surgeries just a month apart! How did you deal with it physchologically? I can 100% relate to your statement about seeing things differently post-diagnosis and realizing what's truly important. Exactly my feelings.

I am very glad you had a great experience at Mayo Clinic! I believe going through this is a lot easier when you have a strong medical team. For myself I decided that if anything returns post-surgery, I will be going to Mayo Clinic next time. This time my surgery is going to be at Emory. This forum is amazing and helped me tremendously with the decision.  

I am still struggling with the lack of information, Emory is not doing a great job here. I had my pre-op yesterday and couldn't get half of my questions answered. I will be writing to the Dr again, but given his 1-2 word answers, I don't expect much clarity. Another thing, they didn't give me diet instructions. I was handed a generic Emory surgery handbook (for all types of surgeries), and all it said was  "Have a light supper the night before surgery". What about clear liquid diet? Bowel cleansing? Nothing. Neither there was any info regarding whether I should pack a bag to take to the hospital, what to pack, etc.  Also zero post-discharge instructions. Maybe those would be given when I am already in the hospital, but that would be too late to get everything prepared. Anyway, I wish this process was easier than it is, and I didn't have to put so much effort in getting information. I keep sticking to my opinion that Emory is about teaching and not really about patients.

In terms of privacy and sharing the c-status with others, it just shows how individual this journey is, and each of us deal with this in our own ways.

Thank you for the best wishes! it means a lot, especially since anxiety started to kick in as I get closer to the surgery. 

stub1969's picture
stub1969
Posts: 831
Joined: Jul 2016

Mila--that's a good question.  I'll be honest with you, I was a mess.  It felt like I was hit with a Mack truck.  To give you an example, I remember being wheeled into the operating room and the anesthesiologist was talking to me about the operation and introducing me to the staff...I just started crying.  I couldn't help it, the reality of the situation became so clear.  The anesthesiologist was awesome and calmed me down.  He promised me everything would be okay and that he would not leave me.  I trusted him.  From that point on, I just pulled up my big boy pants and moved forward.  After almost four years, I still don't think I'm totally over the shock and I don't think I'm being melodramatic by saying this is life-changing.  It's emotionally heavy stuff...so don't feel awkward or down because you're struggling with it.   

As far as information about the surgery and that other stuff.  Don't think too much about it.  The hospital will take care of you.  I didn't have to do any bowel cleansing or anything like that.  They gave me directions about when to have the last meal and to only drink clear liquids after a certain time.  Discharge information will come when they discharge you.  You'll have a nurse go over the information with you 1:1.  This is will be a great time to ask questions.

Things will start moving pretty quickly now.  Just ride it out and focus on getting healthy.

You'll do great!

Stub

a_oaklee
Posts: 499
Joined: Nov 2013

I always hear people say they "compartmentalize".  I understand the concept, but Im not that good at it.  My husband is great at it.  

I think your anxiety is high and thats to be expected.  Maybe you can twist your thoughts from dread or fear of surgery, to one of relief at getting it out of you.

Also try to focus on just what is immediately happening.  I believe it makes it more manageable.  I would go shopping and get what you need for the family and yourself postop.   Dont think way into the future, just take it as it comes.

Practical thoughts:  Eat a light early supper.  Nothing spicy.  Set up a comfortable spot for you to rest at home.  Wear comfy loose clothes to the hospital.  You will be wearing them home.  Slip on shoes.  Have a rolled up towel or little pillow to use for car ride home.  Make sure you have a water bottle at home, and it wouldnt hurt to buy stool softener medicine if you are taking pain pills.  Definitely have some extra strength tylenol available.  

AliceB1950's picture
AliceB1950
Posts: 51
Joined: Jun 2019

I didn't have special diet instructions pre-surgery except nothing to eat or drink after midnight.  I got my post-op instructions before leaving the hospital, but there wasn't much to them, just about incision care and pain control, mostly.  A lot of it is just common sense, but I've had several surgeries and kind of know the general routine.

APny's picture
APny
Posts: 1976
Joined: Mar 2014

I did not have a bowel cleansing either and was told to eat light the night before so I had chicken breast grilled and mashed potatoes. I'm really sorry Emory is not very forth coming with info; it's so important to have our questions answered. But like Stub said, don't stress over it. They'll take care of you. Often I find that the nurses are much more empathetic and more willing to answer/give info. Post-op I was told to walk a lot, drink a lot of water, and use the spirometer to keep lungs clear. No special diet but I had zero appetite afterwards anyway for about a week. Also, anesthesia can make you constipated so I was taking a mild laxative. I did go home with pain meds, I think you wrote Emory doesn't prescribe any. If you find that the over the counter stuff is not enough you can always ask your GP for a week's worth. I was on them for about 10 days post surgery. You don't want pain/discomfort to stop you from walking and moving. You may not even need it; mine was an open surgery for perhaps a bit more painful than lap/robotic but still nothing as bad as I had feared. 

a_oaklee
Posts: 499
Joined: Nov 2013

Mila, your 1st post says you have a septated cyst.  What have you been told about that?   I understand it needs to be removed, but it can be benign, correct?  

MilaQ's picture
MilaQ
Posts: 22
Joined: Feb 2020

I'm sorry guys I've been away, time just flies too fast. I am making a list of all of your recommendations. It's also a relief that clear liquid diet is not such a must as I thought. 

Some of you recommended to get a mild laxative - which one do you recommend? I never bought this before. 

Have any of you purchased post-surgical abdominal binder/compression wrap to avoid incision hernia? What kind did you have?

Now about my news, and a_oaklee - it addresses your question.  So, I have a septated cyst as initially mentioned. The most recent scan (MRI early Jan) stated the following: "FINDINGS: There is a partially exophylic, multiseptated right renal leison within the interpolar region, measuring 4.4x3.8cm, which contains numerous slightly irregular septa which demonstrate postcontrast enhancement. No hydronephrosis.  IMPRESSION: Exophytic 4cm interpolar right renal mass, with imaging features most consistent with renal cell carcinoma".  When my urologist reviewed the images, he said it's 75% probability this is RCC. When he refered me to the urologic surgeon, the surgeon said it's actually more like 80% (or 85%? don't remember) probability this is RCC. When I asked the Emory surgeon for his prognosis, also mentioning what probabilities the other two doctors gave me, he only said "oh no, it's a lot, a lot higher than that".  

Now, for pre-op the Emory surgeon ordered me to get another set of CT scans - lungs and abdomen. These scans were done at Emory this time, i.e different place than before. On Thursday he called me and said that the new images are of better quality and based on them it could be either a cystic RCC, or even a benign cyst. This is what it said in this report: "1. 3.7 x 3.4 x 3.2 cm cystic mass interpolar right kidney with multiple internal septations could be a multilocular cystic nephroma or cystic renal cell carcinoma as described above". The description mentioned that this leison is "partially exophytic and partially endophytic extending into the renal sinus fat and has multiple enhancing septations".   He told me that this is good news/bad news. Good news - this might not even be RCC, and if it is - he doesn't think it's an aggressive type (and this is MAJOR news). Bad news - it's growing into the center of the kidney and this is going to be a difficult surgery technically. So, I'm relieved that pathology-wise my worst news shouldn't be something I feared the most, assuming he's correct. This takes a lot of stress away. Surgery-wise, there is a higher chance of losing the entire kidney. I'm also scratching my head how could the measurements be so different on two scans? 

And another thing - I finally feel good about this surgeon! He was very different on this call - kind, informative, and took his time to answer my questions.  He sounded like a doctor I would like to have. He must have had a bad day when I had my consult with him, and hopefully no more of those :).

 

Lynn_65's picture
Lynn_65
Posts: 3
Joined: Feb 2020

Just had my surgery, robotic partial nephrectomy removing approximately 20% of my left kidney, on Thursday, February 20.  I had been told some of the same things you mentioned, the placement of my mass was close to the renal vein and artery and they were afraid I may lose the whole kidney or that my surgery would have to be open. Once surgery started there was only one small vein to be reckoned with! I feel so blessed. I have 5 small incisions, the largest about 1 1/2 inches. I could have been released the next day but chose to stay another day and am glad I did. I woke up feeling better and ready to go home. We even stopped for lunch at a local restaurant on the way home.  My only pain medicine post op has been Tylenol every 6 hours. My doctor is brief and to the point but a great doctor. I heard nothing but good things about him during my hospital stay. I'm glad you're feeling better about your doctor and pray all goes well with your surgery too!  If you have any questions, I'll try my best to answer.  
Oh, and about pre-surgery diet, I think each doctor has his/her preferences. I was on clear liquid diet the entire day before surgery and had to drink magnesium citrate at noon but could continue clear liquids til midnight.

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