Stay local or travel for Surgeon?

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

Stay local or travel for Surgeon?

Postby Pdxj » Sat Oct 13, 2018 10:47 am

Hello all,

I've been lurking here for a bit but never posted. Im a 36year old father of 3. I've been newly diagnosed with Stage 1 rectal cancer. After a transanal excision locally in Portland, OR the pathology came back as T1 but close to T2 depth 7cm from the anal verge. I've seen 3 different surgeons and all recommending LAR surgery now to remove the rectum and have a straight (or side to end if possible) coloanal anastomosis. One is across the country at MSKCC and is a highly regarded Surgeon who I would love to see. The others are local, board certified surgeons who use robotic techniques.

Would you travel across the country or stay local for this type of surgery?

We thankfully have the flexibility in our work and lives to travel for surgery if needed. I'm worried about complications and being so far away from the hospital that did the surgeries after the initial recovery. Ive been agonizing over this for the past couple weeks and hoping your experience can help.

Thanks for everything

WarriorSpouse
Posts: 149
Joined: Tue Aug 16, 2016 9:02 pm

Re: Stay local or travel for Surgeon?

Postby WarriorSpouse » Sat Oct 13, 2018 12:39 pm

If you are going to travel anyway, why not go to NYC. Hopefully others will chime in from the west coast too. Maybe there is someone out there from a major cancer center. I would assume CA has specialists closer to you.

I know that Dana Farber in Boston, MA has an agreement with some local long stay hotels to provide temporary housing for families / Patients at reasonable monthly rate. Maybe MSK has a similar program with temporary quarters. Others on this forum have travelled for surgeries and overnights in NYC while doing chemo at their local hospitals under the direction of the cancer center's protocols.

Here is a housing link for MSK patients and their families.

https://www.mskcc.org/locations/visitin ... mmodations

Best wishes.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

rtcasper
Posts: 42
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Stay local or travel for Surgeon?

Postby rtcasper » Sat Oct 13, 2018 1:58 pm

If I was in your situation, and money or time was no obstacle, then I would go across country. But like u said, what about potential complications or just being well enough to travel back home? I'm 2.5 weeks out from surgery myself, and while I'm sure I could fly across country if needed, it wouldn't be the most comfortable, fatigue still plays a part. I'm not sure what to recommend my friend, do what you feel is best. Good luck to you either way. And let us know how things go!
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
5 days radiation, surgery 2 weeks later, followed by chemo
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-stage T1N0M0

Gravelyguy
Posts: 61
Joined: Thu Jul 05, 2018 6:03 pm

Re: Stay local or travel for Surgeon?

Postby Gravelyguy » Sat Oct 13, 2018 3:23 pm

I think the surgeon makes a big difference in after LAR difficulties. I was very happy I went to Mayo for my surgery. Not only was the surgeon a specialist in LAR but the floor I stayed in was only for colorectal surgery patients so even the nurses were specialists.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection
11/17-3/18 8 rounds Folfox
6/18 NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear

MissMolly
Posts: 564
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Stay local or travel for Surgeon?

Postby MissMolly » Sat Oct 13, 2018 4:09 pm

I live in Portland, Oregon. Dr. Megan Cavanaugh with Providence Health System (St. Vincent’s Medical Center) is an outstanding board certified colon-rectal surgeon. Hand’s down, Portland’s best. A consultation with her locally would be worth the time.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: Stay local or travel for Surgeon?

Postby retiredteacher » Sat Oct 13, 2018 5:33 pm

Dr. Cindy Kin at Stanford. Facility is excellent as well - very positive environment ... efficient and highly competent ...
Terri
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

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

Re: Stay local or travel for Surgeon?

Postby Pdxj » Sat Oct 13, 2018 6:33 pm

Thanks everybody for the replies!

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Stay local or travel for Surgeon?

Postby weisssoccermom » Sun Oct 14, 2018 9:57 am

Honestly, as someone who has been around for 12 years, I wouldn't travel. You're not talking about a tumor that is super close to the anal verge that you are so concerned about the QOL issues. I understand people believing that we should all go to a major cancer center BUT....it really isn't necessary all of the time.

You had an excision.....did the pathology indicate that they got it all? You don't say whether or not the pre-tests (ultrasound and/or CT) showed any suspicious nodes or not. It 'sounds' (only based on the limited information that you gave) that you are a stage I. Again, this is ONLY based on the limited information that you provided. The surgery that they are recommending is 'standard of care' and good surgeons across the country can and should be able to do the surgery. That being said, I would suggest you consult with a BOARD CERTIFIED COLON AND RECTAL surgeon and not just a general surgeon who can do the surgery. IMO, IF you were dealing with a tumor that was 2-3 cm from the anal verge and NOT 7 cm as you indicated, it may be a different story. There are fantastic surgeons in Portland and frankly in Seattle....which is a heck of a lot closer than NYC. IF you are truly a stage I, you may not even need chemo or any other treatment.

Too often, for early stage cancers, the major centers frankly 'overtreat' because they can. If you want to travel, by all means do so, BUT....you may want to also take into consideration that any follow ups be done locally. LAR surgery is commonplace and a well informed, practiced and qualified surgeon can do the surgery. You don't need to travel to have it done by a qualified surgeon.

That being said (and again, there is limited information that you provided), many newer protocols are allowing for the wait and watch approach. Did you have radiation? That may be something you wish to explore to avoid the surgery. If you look at my signature, I had chemoradiation and then an excision....11+ years ago and I am doing fine with a tumor that was closer to a T3. Everyone is different and I'm NOT saying that you should follow my path. I also had surgeons recommending the LAR procedure and I declined based on studies that were being conducted at the time.

What did all of your tests indicate? Was there suspicious lymph node involvement? Did the CT/PET/MRI show any distant mets? Did the pathology from the colonoscopy indicate that you are dealing with a tumor that has negative prognostic factors? These are all questions you should be asking and test results that you should have in front of you. What, if any (besides the excision) treatments did you have? Has any surgeon/oncologist recommended that you have radiation?

Check out a surgeon via this website to make certain that he/she is board certified in the appropriate category. http://www.abcrs.org/verify-a-physician-2/
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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

Re: Stay local or travel for Surgeon?

Postby Pdxj » Sun Oct 14, 2018 11:18 am

Wifeandsoccermom,

Thank you for the detailed response. I had a T1 SM3 tumor removed that was moderately differentiated. Staging after local excision is stage 1. No suspicious lymph node involvement or distant metastasis after CT scan and MRI. No radiation or chemo has been recommended. Basically the only reason the LAR surgery was recommended was because of the SM3 depth. Pathology showed margins were good with 3mm margin at closest point. The reoccuance rate the doctors have told me is close to 15% based on my personal situation. . I dont think that is good enough for me when they are telling me they can get it to sub 5% chance of reoccurance with the surgery.

I also have looked into the watch and wait approach, which is the reason for going to MSKCC. The surgeon there has told me the best chances are the LAR but watch and wait or additional radiation/chemo is also possible. The surgeon at MSKCC is a watch and wait advocate but has recommended surgery.

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Stay local or travel for Surgeon?

Postby weisssoccermom » Sun Oct 14, 2018 4:08 pm

The surgeon is correct that an excision alone has about a 15% recurrence rate, HOWEVER, the rate with chemoradiation and an excision for early stage cancers is close to the same rate as an LAR surgery. Obviously there is no guarantee and no way to know which patient benefits from this protocol but, if it were me, I would be talking with my onc about getting a 28 day course of radiation first.

A Dr. Mark Whiteford in Portland was HIGHLY recommended back in 2006 as a pioneer in the transanal endoscopic microsurgery procedure. He actually shows other doctors how to do the procedure with the equipment (this is different from a simple excision). He still is highly recommended and is an advocate for the patient. IMO, it would be beneficial to get an opinion from him. I believe he may have a more open approach to utilizing radiation and possibly avoiding the LAR. IF...you and your doctor decide to forgo the LAR and follow up with more treatments....for example, chemo and or chemoradiation.....you will almost certainly be expected to have meticulous followups....in the beginning every 3 months which may be difficult if you are traveling for them.

I had my surgery done in Seattle and back then, had a very difficult time finding a surgeon who would even consider doing the excision. I was ready to see Dr. Whiteford if necessary and my surgeon in Seattle was going to get me an appointment with him if she wasn't able to perform the excision (she was). Just saying that I think you have a fantastic surgeon who is renown for his expertise in the TEM (not the same as TME) and I would get in to see him and see what he has to say.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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

Re: Stay local or travel for Surgeon?

Postby Pdxj » Sun Oct 14, 2018 8:03 pm

Thanks again Weissoccermom, what research are you referring to that radiation and TEM is just as good as LAR? I really appreciate the insight from someone who has researched so much.

My surgeon did the Transanal endoscopic microsurgery and is at the same clinic as Dr. Whiteford. We really are impressed with our surgeon who did the procedure but now that LAR is in play we needed to do more research and get other opinions. I had the surgery 6 weeks ago. I will definitely be asking about the radiation as a treatment post-TEM but was under the impression it wouldn't be as good as LAR.

Thanks again!

SGNYC
Posts: 14
Joined: Mon Sep 03, 2018 9:20 pm

Re: Stay local or travel for Surgeon?

Postby SGNYC » Sun Oct 14, 2018 8:30 pm

MSK is an amazing place - cannot recommend it enough. I'd say it's more than worthwhile to head to NYC!

weisssoccermom
Posts: 5878
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Stay local or travel for Surgeon?

Postby weisssoccermom » Sun Oct 14, 2018 9:01 pm

When I was in treatment, I consulted with a Dr. David Medich in Pittsburgh who actually was doing a study with Dr. Habr-Gama (who is now the main investigator on the wait and watch protocol). Dr. Medich and Dr. Habr-Gama (she and I corresponded) both told me that the rate for a TEM AND chemoradiation + chemotherapy rivaled that of the LAR. There was, however, a caveat to that study. Chemoradiation was done PRIOR to the excision and the studies correlated with studies from patients who had neoadjuvant chemoradiation and then underwent an LAR. The results from the latter showed that patients who showed no lymph invasion (LAR group) after surgery (and after chemoradiation) did just as well as patients who also showed no lymph node invasion (via ultrasound, CT, MRI, etc.) after surgery with an excision. Obviously, there is no guarantee and most surgeons do want to do the 'standard of care' surgery. Even my surgeon who eventually did my excision was leaning towards an LAR simply because that's what was then and still now is considered the GOLD standard. For me, however, I wasn't willing to take the serious QOL (quality of life) issues that tend to go along with the LAR.

I have to also clarify that when I underwent my excision, my surgeon and I had backup plans. IF my pathology report had indicated that my tumor hadn't shrunk OR if the ultrasound 'found' some suspicious lymph nodes (after chemoradiation), then I would likely proceed with the LAR surgery. IF my tumor had residual cancer cells, I would then have more chemotherapy. Honestly, my surgeon and onc weren't prepared for the 'no cancer cells' in the pathology report.

With all that being said, I personally wouldn't feel comfortable with the 'wait and watch' approach....but that's just me. If nothing else, the excision gives both the doctors and the patient one more piece of information to add to the decision making process. In addition, my team felt that a combination of excision, chemoradiation and chemotherapy was a three pronged approach that had to be followed. My follow ups were meticulous and very thorough as well. I'm not advocating my plan for everyone but for me, it was worth the struggle I went through (in 2006/07) to have the excision. I don't regret it for a minute.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Deb m
Posts: 441
Joined: Tue Jan 14, 2014 10:08 am

Re: Stay local or travel for Surgeon?

Postby Deb m » Mon Oct 15, 2018 9:58 am

I would go to where you know you'll get the best treatment. In the long run you'll be happy you did. You should be very grateful that you have the means to do so, not everybody does.

deb

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

Re: Stay local or travel for Surgeon?

Postby chadwick1 » Tue Oct 16, 2018 8:54 pm

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!
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3 N1b M0) no genetic indicators, low/normal CEA
7/2017 started radiation + 5FU
10/2017 LAR w/ temp loop ileostomy. clear margins, 2 of 33 lymph nodes
11/2017 started FOLFOX, 9 rounds scheduled
2/2018 clear CT; low WBC, 7th round delayed
3/2018 finished FOLFOX
4/2018 ileostomy reversal
10/2018 CT shows suspicious nodules in liver (1.7 cm), and lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, waiting to re-scan lung


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