No chemoradiation before surgery

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KMC21
Posts: 4
Joined: Thu Oct 25, 2018 8:14 am

No chemoradiation before surgery

Postby KMC21 » Mon Nov 19, 2018 2:30 pm

Hi All: I was diagnosed with rectal cancer on October 4. MRI imaging suggests there is no lymph node involvement, although of course surgical staging will provide more information. I received opinions from Penn, Sloan Kettering (MSK), and a top surgeon at a community hospital (Dr. John Marks). Both Penn and MSK strongly suggest I DO NOT have neoadjuvant chemoradiation as they feel that will be overtreatment: risk > benefit. (My GI physician removed most of the growth; what remains is a 3 cm lesion flat in the rectal wall.) I am going with that opinion and having surgery on November 27. From looking at the signatures on this board, I don't see anyone who has proceeded right to surgery. If you did got that route, I would love to hear about your experiences and why your doctor recommended that. If the nodes are positive, of course I will have chemotherapy and possibly radiation therapy afterwards. TIA!

Punky44
Posts: 351
Joined: Mon Oct 01, 2018 4:29 pm

Re: No chemoradiation before surgery

Postby Punky44 » Mon Nov 19, 2018 4:12 pm

We had a surgeon tell us if you are a T1 or a T2 they would likely just do surgery. Unfortunately that wasn’t the case for us.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9
6/28/19 Reversal and port out

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Big Jay
Posts: 35
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Re: No chemoradiation before surgery

Postby Big Jay » Mon Nov 19, 2018 4:27 pm

I'm not a doctor, just a semi-well informed patient, but I'm under the impression the radiation is supposed to kill any cancer that might be hiding in the mesorectum. That's the fatty, lymphnode-filled, tissue that surrounds the rectum. In the past this wasn't necessarily removed with the rectum and there was a high-percentage chance of a local regrowth. However, the Total Mesorectal Excision (TME) is the pretty much standard practice today. If they completely remove the mesorectum then it can't grow any cancer.

The Johns Hopkins surgeon that I dealt with was somewhat dismissive of radiation saying that it mainly covered for sloppy surgery. However, Hopkins likes to play things by the books and if the guidelines say chemo-rad followed by surgery then that's the only path that they'd recommend. So, that's what I did. It's also been two years since my radiation treatments so I haven't looked into the latest research lately. Two years is a long time in terms of medical technology so maybe things have changed. MSK is on top of the latest up-to-date techniques so I'd trust their judgement.

As a cancer patient, if you don't understand your docs' recommendations, ask them why. You need to be comfortable with your way forward.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18

zephyr
Posts: 246
Joined: Thu Aug 18, 2016 7:31 am

Re: No chemoradiation before surgery

Postby zephyr » Mon Nov 19, 2018 4:41 pm

No one ever mentioned chemo or radiation to me as a first step, only surgery.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

Phillypatient
Posts: 31
Joined: Sun Aug 05, 2018 11:28 am

Re: No chemoradiation before surgery

Postby Phillypatient » Mon Nov 19, 2018 6:04 pm

I’m confused. Are they saying to do a LAR? I thought MSK would try to treat it and see if they can get you to a watch and wait status so you don’t have to have the surgery. My experience is that the surgery is brutal and should be avoided at all costs.

https://www.mskcc.org/clinical-updates/ ... ut-surgery

Some people on this board have followed watch and wait with success.
Male 48, dx 10/16 rectal cancer t3n1m0
Chemorad Dec 16
Xelox Mar 17-Jul 17
Lar Sept 17
Reversal Dec 17

weisssoccermom
Posts: 5956
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: No chemoradiation before surgery

Postby weisssoccermom » Mon Nov 19, 2018 6:34 pm

First of all, to clear up some confusion....radiation is generally NOT given to patients with colon cancer UNLESS, the surgical pathological report indicates that the margins were not clean and/or too small.

So, the OP indicates that rectal cancer was the diagnosis that he/she received. (BTW, Dr. John Marks is a HIGHLY reputable colorectal cancer surgeon and is, IMO, 'on top' on things...he is a well respected and very well known colorectal surgeon). I suspect that you are being clinically staged as a stage I....which would explain the 'over treating' comment. Generally, those with stage I are not given chemoradiation because the risks associated with chemoradiation outweigh the benefits for a stage I .....with NO negative prognostic factors. That being said, I might consider asking either watch and wait OR to have a transanal excision (IF you are an early stage) followed by chemoradiation.

However, I am not you.....YOU have to be comfortable with whatever decision you make. I'm not looking at your post right now so don't remember if you said how high up/low down the tumor was. If, in fact, the tumor is relatively low down, I would seriously consider looking into other options. Unfortunately, what too many patients don't understand is that your quality of life can and likely is affected by the surgery (and yes, also by the chemoradiation). The surgeons aren't simply going in and taking that small lesion out.....they will take out a good portion, if not all (depending on the location of your lesion) of your rectum and reconnect you to your intestine. That sounds ideal EXCEPT that your intestine is not your rectum and won't function the same way.

Talk with the surgeon who is doing your surgery and get all the facts before you go in. That way, you know what to expect. While you may not have the residual side effects of chemoradiation, it's very likely that you will experience clustering, loose bowels, some accidents, etc. If your surgeon isn't open and forthright about it, ASK specific questions.
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

rtcasper
Posts: 48
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: No chemoradiation before surgery

Postby rtcasper » Mon Nov 19, 2018 7:36 pm

Hi,

I was given a short course, 5-days of radiation only, followed by surgery. This will be followed by a reversal and I will not be receiving any adjuvant therapy either-for the exact reasons your Dr.identified-they felt it would be over treatment in my case. I receive my care through Cleveland clinic and am very confident in this approach.

Best of luck
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
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown

KathyLynn
Posts: 66
Joined: Thu Aug 31, 2017 3:40 pm
Location: Rock Hall, MD

Re: No chemoradiation before surgery

Postby KathyLynn » Wed Nov 21, 2018 7:01 pm

Hi, I had surgery last year after thanksgiving. No chemo/radiation before surgery
I had a few opinions before I made my decision
Did not receive any treatment after surgery
I will see mt surgeon soon and have my first CT scan
Very little problems this year with controlling my bowels

KathyLynn
8/2017. RC
11/27/2017. Robotic LAR. No chemo/rad
12/2017 Moderatley differentiated, 3.0 cm in greatest dimension
Macroscopic tumor perf: not identified. All margins of resection and proximal neg for tumor.
Lymphovascular and perineural invasion: not identified.
1/13/2018. T2N0M0 with isolated tumor cell (ITC)
7/2018. CEA 2.0. 10/18: 2.0. 1/19: 2.3

del
Posts: 109
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: No chemoradiation before surgery

Postby del » Wed Nov 21, 2018 8:48 pm

Do you know if it's being treated as stage 1 or 2? I was stage 1 and the oncologist strongly recommended against any chemo-rad as the risks outweighed the benefits, so I went straight to surgery. I think stage 2 is a bit more of a grey area.
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE

Basil
Posts: 258
Joined: Thu Mar 16, 2017 12:33 pm

Re: No chemoradiation before surgery

Postby Basil » Wed Nov 21, 2018 9:03 pm

I skipped radiation when it was standard of care for rectal cancer. All went well, so far. My unprofessional, biased advise is to avoid radiation if possible. It can mess you up permanently.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

hawkowl
Posts: 121
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: No chemoradiation before surgery

Postby hawkowl » Thu Nov 22, 2018 11:58 am

It is a balancing act. Neoadjuvant treatment can result in downstaging and an improved prognosis for any stage disease, but the benefit for very early stage patients is minimal. Radiation toxicity can be an issue (it is for me), but resurrect cancer would be a much worse outcome. When in doubt, get another opinion. I definitely wouldn’t base this decision on advice from this forum
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.
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

justin case
Posts: 4256
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: No chemoradiation before surgery

Postby justin case » Sat Nov 24, 2018 2:17 pm

Basil wrote:I skipped radiation when it was standard of care for rectal cancer. All went well, so far. My unprofessional, biased advise is to avoid radiation if possible. It can mess you up permanently.

I needed the radiation, but as Basil said, cough while you are being radiated, and even that can cause permanent damage !
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

KMC21
Posts: 4
Joined: Thu Oct 25, 2018 8:14 am

Re: No chemoradiation before surgery

Postby KMC21 » Mon Nov 26, 2018 9:11 am

Thanks for your inout, everyone. I am indeed in the gray area of stage 2 (they think). Having surgery tomorrow and hoping for the best.


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