How to Find The (Best!) Surgeon? The challenge of getting answers from surgeons....

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lakeswim
Posts: 111
Joined: Sat Mar 31, 2018 9:37 am

How to Find The (Best!) Surgeon? The challenge of getting answers from surgeons....

Postby lakeswim » Mon Dec 03, 2018 10:13 am

For those of you with successful/satisfactory outcomes, how did you find your surgeon?

I have a surgeon here in my city at the teaching hospital/cancer center where I've been getting my chemo & chemo/rad. This surgeon is a MSK transplant so comes with a great "pedigree" - as someone put it. Spoke to this surgeon last in May - before my treatment began.

I sought a 2nd opinion with a VERY reputable surgeon in Cleveland (back when all this began in May) but either they're disorganized or they don't like the strategy I chose or something else (maybe I'm too sensitive?) because they haven't been that patient-friendly or responsive (long story - but it's showed itself in several ways) since I left the building. Given my worry about traveling for surgery, dealing with a surgeon from a distance if I have complications, and dealing with a bag (it'd be more seamless if I went with my team in my city), the fact that I'm not getting the best "service" already concerns me. BUT, this surgeon came highly recommended from a local physician who had cancer herself and used this surgeon (and the surgeon came highly recommended through the physician's husband, who is a surgeon too.) This physician also strongly believes her patients get better overall care/results at a major place like Cleveland vs. our local cancer center.

I have learned so much (here! thank you!) since May when I last saw these 2 surgeons and I have many, many questions for them prior to my surgery so I can make a decision about who does my surgery and what to ask them specifically about that surgery. My team here told me that if I want a second/third opinion, I should schedule it NOW for right after my scans in January. So, I am debating - should I try the Cleveland surgeon AGAIN (given his stellar reputation - even though I haven't had the best experience already) or try to find another, which leads me to....

HOW TO FIND THE BEST SURGEON? I have googled and I know to make sure they are board certified, but I don't know how to approach finding the best surgeon for my situation. And I need to get on this soon! I don't see traveling to MSK in NYC when I have one of their recent transplants here - but maybe it's still worthwhile. (And they are more familiar there with the TNT (potential W&W) strategy my team here has used for me.)

But even at major cancer centers, if you call them - you get who you get. You kind of need to know who you want beforehand.

And I am getting increasingly anxious about the entire surgery/surgeon thing - esp since I have a little time now where I can research and find the best one for me. (I am actually losing lots of sleep over it.) But how do I approach getting answers from potential surgeons to all the questions I have in order to make decision? I have so many NOW but I won't see surgeons until after the scan in mid-Jan, when there won't be much time to be agile about finding/changing surgeons before a potential Feb surgery. And I need answers NOW in order to do more research for OTHER questions. Having these back and forth conversations with surgeons is next to impossible!!!

I really admire the people on this forum who KNOW their stuff (however they do it) and move forward definitively. My knowledge and understanding seems to come slowly and organically (in spurts between chemo and then chemo/radiation and the times of anxiety that come before/after both). And my spouse, for whatever reason, has ZERO interest in having this conversation with me. (I assume he's dealing with enough, picking up slack with the kids/pets/etc.)

But I feel like I have NOBODY to bounce this stuff off of - as it does require some knowledge of the situation. So, I greatly appreciate any feedback from you folks here!
50 - F (Just turned 50 so writing this # for the first time - ACK!)
Mom to 2 kids
RC - dgns March '18 at age 49 (colonoscopy aftr blood in stool)
Adenocarcinoma
10-11 cm from anal verge
Stage 3a - T4N0M0
FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
Next steps.....scans in Jan will determine if W&W is an option or surgery

hiker
Posts: 84
Joined: Thu Aug 09, 2018 10:15 am

Re: How to Find The (Best!) Surgeon? The challenge of getting answers from surgeons....

Postby hiker » Mon Dec 03, 2018 10:53 am

Hey lakeswim,

I was referred to the surgeon who did my colon resection by the GI doc who found the cancer. He did a fine job, but since I was stage iv from the start I wish I had gone to MSK for the colon resection since it could have been done at the same time as my liver resection. But hindsight is 20/20 and when a person is told they have cancer, we just want it out of our bodies. I honestly can't say enough positive things about MSK. I've met tons of drs, nurses, techs, radiologists, admin, etc. since this journey began and I'm so glad I'm being treated by MSK. The difference between them and the hospital/staff that did my colon resection is like night and day.

Based on what you've written, you don't like the reputable surgeon in Cleveland. Then don't use them. First impressions are usually pretty good indicators. I remember meeting with my liver surgeon at MSK. He sat down with me and my wife and went through everything, wanted us to ask questions, even called me one night around 8:30pm as he was driving home from work to discuss something with me. After my surgery, he brought my wife and my pastor and his wife (who drove 4 hours into NYC and stayed overnight with us to be there for my surgery) into his office to go over what he found during the surgery. I'm certainly not saying to pick someone based on whether you like them and think you could be friends with them. Pick them because they're professional, wicked smart, caring, and looking out for your best interest.

I'm not trying to scare you, but just because someone is an MSK transplant doesn't necessarily mean they're any good - there may be a not so good reason they're no longer with MSK. Here's a little story to back up what I'm saying. The brother of a lady I work with was diagnosed with exactly the same thing I was and within one month of my diagnosis. He found an oncologist locally who said she had worked for MSK. He liked her and trusted her - he's now in hospice and unless a miracle occurs won't be here for Christmas this year. I'm certainly not saying that his outcome would have been any different had he been treated elsewhere. However, the things his sister told me about his treatment made me question whether they knew what they were doing.

What would it hurt to call MSK and see who you get assigned? Then ask around to see if anyone has any opinions of them. You don't have to go through with even going in for the first appointment if you don't want to. But it would get the process started.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

chadwick1
Posts: 14
Joined: Sat Oct 13, 2018 9:04 am

Re: How to Find The (Best!) Surgeon? The challenge of getting answers from surgeons....

Postby chadwick1 » Tue Dec 04, 2018 11:19 am

Hi lakeswim,

I hear you, picking a surgeon can be tough because there’s not a lot of information to base your decision on! Really all I ended up have to go on was reputation (online is not very useful, other people is better), experience (mostly as they themselves reported, but some public info), and gut feel after meeting with them.

On the one hand, you shouldn’t go with someone you don’t feel comfortable with; on the other hand, your surgeon’s job isn’t having the best bed-side manners, it’s doing a damn good job cutting that cancer out and putting you back together. The guy I went with definitely did not leave the best first impression by a “normal” standard. He was super late, over 2 hours, and acted somewhat aloof and rushed, though part of that was probably the attitude of “yeah I do this a lot, this is what I’d do.”** He was our last in what was a whirlwind tour of meeting surgeons and oncologists locally and in Boston and NYC, and when my wife and I were in the car headed back I asked who she liked the best overall. “Definitely this guy, despite all that.” I agreed. We got the sense it was a machine there… in a good way! We wanted them to be cranking these cases out, consistently and reliably. (I’m sure the docs at Dana Farber are cranking them out too, but that was just the gut feel part I guess.) BUT, I don’t know the details of the long story you mentioned, and so if you got a bad impression and don’t like him and/or his plan, I agree with hiker, don’t go with him then.

I agree I think there are benefits with going to a major center. The surgeons and their teams are more likely to do these cases very regularly, and they’re more likely to have seen complications and know how to deal with them well. Plus, being plugged into a major center has been a boon for me now that I progressed to stage 4—though hopefully not a bonus you’ll need! One thing I asked the surgeons I met was how many of these they did (and what types etc.). The guy I went with said he did 300(!) of them a year. Most of those were laparoscopic, some robotic. What I was kind of looking for is someone not so young to be inexperienced, but not so old to be out of touch with modern techniques.

Also, I did travel for my surgery—a few hours drive—and while it wasn’t ideal of course, it really wasn’t bad in the grand scheme of things. A home nurse came to help me with the bag, and I got the hang of it pretty quick. I had to drive back for follow ups but we would just make a day trip of it (if we got the chance to have a nice dinner or something we started jokingly calling it a cancer-cation). I did my chemo locally, and they coordinated over blood work and scans etc. so I wasn’t going back for every thing all the time.

That's just my experience, I hope it helps a little to hear it. Good luck with your decision and let us know!

(**To be fair to my surgeon, he was really great in all my subsequent interactions, responsive and caring. His nurses and secretary were really great too, and that makes a big difference. In hindsight I think he probably had some kind of emergency he was dealing with that day we first met. Though he was still often late. Doctors… haha)
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3N1bM0) no genetic indicators, normal CEA
7/2017 radiation + 5FU
10/2017 LAR w/ temp loop ileo. clear margins, 2/33 nodes
11/2017-3/2018 FOLFOX, 9 rounds
2/2018 clear CT
4/2018 ileo reversal
10/2018 CT shows suspicious mass in liver (1.7 cm), and in lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, clear margins. re-scan lung in January

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: How to Find The (Best!) Surgeon? The challenge of getting answers from surgeons....

Postby Spazzyjanet » Tue Dec 04, 2018 9:35 pm

I will be going through this soon. I have a Peritoneal MRI and follow-up appointment with the surgeon at OSU Jan 9th. Am hoping to squeeze in a set of scans just before that. I am then heading up to Cleveland to meet with a HIPEC surgeon and liver surgeon on the 10th and 11th to get their take.

I have no idea what the pitches will be, but I think that in the end it will be a gut decision. And, based on both that gut and what options are available I am not ruling out ditching both, taking those scan results and heading out to MSK. I think it's going to come down to, which of these surgeons seem the most invested in giving me my best chance at life?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.


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