Stay local or travel for Surgeon?

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Pdxj
Posts: 6
Joined: Wed Sep 26, 2018 11:54 am

Re: Stay local or travel for Surgeon?

Postby Pdxj » Wed Oct 17, 2018 10:56 pm

Thank you all so much for replying. We've decided to head to MSK. I really appreciate everyone's input and help to make this decision. LAR surgery is scheduled. Now it's just the waiting game :|

hawkowl
Posts: 118
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Stay local or travel for Surgeon?

Postby hawkowl » Thu Oct 18, 2018 12:03 am

Just to play devil’s advocate...Not every excellent/skilled/capable surgeon chooses to practice at a major teaching hospital (many choose to live and work in smaller communities for the same reasons the rest of us do)...but then again not every board-certified colorectal surgeon is equally capable. If you trust your oncologist and/or primary care provider, ask them what they would do if they were in your situation. In my case, I was fortunate to have a truly wonderful colorectal surgeon locally so I didn’t feel the need to travel to Baltimore (based on my research I would have opted to go to Hopkins over MSK, MDA, or Mayo...even though Mayo is closer). I really appreciated being close to family and friends when I recovered, and it was reassuring to know that I could easily pop into the clinic for a follow up visit whenever necessary.

You have to do whatever feels right to you, but traveling across the continent doesn’t always guarantee a better outcome and can make life very difficult if you experience even minor post op complications. Good luck no matter what you decide to do!
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Pdxj
Posts: 6
Joined: Wed Sep 26, 2018 11:54 am

Re: Stay local or travel for Surgeon?

Postby Pdxj » Thu Oct 18, 2018 1:02 am

Thanks again and trust me this is not a decision I've taken lightly. I've been wanting to stay local for this because of all the reasons described by everyone. I've met with 4 surgeons total. Two locally, one in Seattle and one at MSK. All are board certified and have had fellowships at major teaching hospitals. My primary care doctor has recommended a local surgeon whose clinic I just visited yesterday. After that visit I have no doubt that MSK is the place for me. Not because it was a bad visit, the care would have been great as well, it's because of how the doctor in Portland spoke of the surgeon at MSK and their extensive knowledge of rectal cancer surgery. (He did also say they could do a great job as well) I know that recovery may be hard in a different city but what I've seen so far from the doctor, fellow, nurses, assistant, social worker, etc.....that has contacted me to make sure I'm ready for surgery has made me almost certain that MSK is right for me. I'm not expecting a better outcome from one place to the other but if there is even a slight chance that it's possible I want to take it.
We are planning a 3 weeks stay for the first surgery and another 3 weeks for reversal. (With backup plans in case it doesn't work out to head home)

Thank you all again, it may not be what others would do but I believe it's the right one for us.

lakeswim
Posts: 146
Joined: Sat Mar 31, 2018 9:37 am

Re: Stay local or travel for Surgeon?

Postby lakeswim » Tue Nov 27, 2018 10:24 am

chadwick1 wrote:I traveled to have a robotic LAR done at MSK last October. It my case it was SO worth it, the whole of both surgeries (LAR then ostomy reversal) went flawlessly and my quality of life afterwards has been great. However for me it was just a few hours drive--involving a cross-country flight post-op could change the calculus quite a bit. I actually left the hospital after only two days post-op because I was doing really well but still I couldn't walk very far without getting exhausted, had a JP drain sticking out of my side, and a brand new ileostomy to contend with. I have to imagine if you flew to NYC you'd plan on staying there for a while till the drain is out and you are in better shape but it still could be a challenge.

I've been really happy I made to effort to see the best surgeon I could but I have no doubt there are fantastic surgeons in Seattle or Portland too! Also consider you may need to make trips for any follow-up appointments and/or surgeries (not sure if all LAR operations imply an ostomy and reversal). Sorry if I haven't made your decisions any easier!


HI Chadwick, I hope you are doing okay. I see you had LAR surgery robotically at MSK. My surgeon came from MSK and seems to follow their protocols. I believe (need to confirm all of this - as I haven't seen her since May) she wants to do LAR robotically. I am curious if you have LAR syndrome and, if so, to what extent? I just read elsewhere on this board that robotic surgery my increase your change of LARS. (And if I want to change surgeons, I would need to get on this soon, apparently.) Thanks for any feedback.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
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)
Jan 19 - MRI and Flex Sig shows tumor "completely gone"
Indistinct fat plane btwn uterus & rectum - the one thing in the way of a cCR - surgery next :(

chadwick1
Posts: 21
Joined: Sat Oct 13, 2018 9:04 am

Re: Stay local or travel for Surgeon?

Postby chadwick1 » Tue Nov 27, 2018 8:57 pm

Hi lakeswim,

I was just reading that thread too, very interesting. For my LARS, as it is, well I don’t have a good basis of comparison except what I’ve read here and heard from docs, but I think I got off pretty easy. Really the main nuisance side effect I have is some strong “urges”, that is, that feeling that I have to go right now! But I’ve found I can hold it back and it goes away in 10 seconds or so and I’m fine. If it happens a lot in succession I know it’s “for real” and I’ll just go to the bathroom, which is otherwise a mostly normal process. My stool is just smaller than before. I do occasionally get the “clustering” effect, where right after I finish I find I have to go again, but I can kind of predict that and just take my time now. It’s not bad. For those things the docs recommended I take psyllium fiber, which I do and it does make a difference. So all in all I’d say I go more frequently now and have those intermittent urges but otherwise things are pretty normal, which is really great!

FWIW my primary tumor was 8cm from the anal verge and 6cm from the sphincter. The surgeon said he did hundreds a year laparoscopic and robotic, and had a good reputation so we felt comfortable going with him. He also said he would start robotically but if the situation demanded it he would switch it to open during the procedure, so I had to be okay with that. I thought that was reasonable, though I’m glad he didn’t have to. In any case I was really happy to have that thing cut out!

I hope that helps, good luck!
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


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