Doctors disagree on rectal cancer treatment

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Lynnd
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Joined: Thu Oct 12, 2017 4:09 pm
Facebook Username: Tammydford

Doctors disagree on rectal cancer treatment

Postby Lynnd » Thu Oct 12, 2017 4:37 pm

I have been diagnosed with Stage III rectal cancer at a local teaching hospital. I was told the standard treatment is radiation with oral chemo for 6 weeks, a 6 week break while the radiation continues to work, then surgery, then "mop up" chemo. I went for a second opinion at a well-known cancer hospital. They agreed with the diagnosis. They also recommend the same treatment; however, they recommend doing it in a different order. They are a high volume cancer center and have had success with doing the chemo first (for 4 months) then the radiation, then the surgery. They will do a sigmoidoscopy at the 2 month mark to make sure the chemo is working and the tumor is shrinking.

I planned to get chemo locally but the local teaching hospital is not on board. They claim they only practice evidence-based medicine so they only give the standard care and they are not on board with deviating from the standard care. Has anyone else received treatment in a different order? I am now second guessing my decision to do the treatment in the order recommended by the cancer center. Any help is appreciated.

Aqx99
Posts: 276
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Doctors disagree on rectal cancer treatment

Postby Aqx99 » Thu Oct 12, 2017 6:33 pm

Here are the NCCN guidelines for rectal cancer. Hopefully it will help you in your decision making process. There is a treatment option listed for stages II and III that has chemo, then chemoradiation, then surgery.

https://www.nccn.org/patients/guideline ... index.html
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
1/23/18 Reversal

NHMike
Posts: 673
Joined: Fri Jul 21, 2017 3:43 am

Re: Doctors disagree on rectal cancer treatment

Postby NHMike » Thu Oct 12, 2017 6:45 pm

I'm going through the same thing and finished the chemo and radiation (6-week program) at the start of September and will be having surgery in a few weeks followed by mop-up chemo.

I got opinions locally and from Dana Farber Cancer Institute, a high-volume cancer center in Boston and ranked #4. The locals recommended the standard treatment plan and DFCI agreed. I had the chemo and radiation done locally and will have the surgery at the DFCI affiliate, Brigham and Womens in Boston.

In my case, the tumor was fairly large and uncomfortable and sometimes painful. The advantage to doing chemo and radiation at the same time is that, in my case, the tumor got smaller, faster (actually pieces came out). So I think that the standard approach worked out better for me though there was quite a bit of pain from the radiation.

You have a difficult choice as you have the standard treatment which has been used extensively by hospitals around the country vs the observed evidence from what I gather is a top-notch hospital.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

AussieAssCancer
Posts: 219
Joined: Sat May 21, 2016 10:16 am

Re: Doctors disagree on rectal cancer treatment

Postby AussieAssCancer » Thu Oct 12, 2017 6:56 pm

For my two cents, I had a combo of both.

My onc’s were of the view that they wanted to treat it as if it had already spread and we just couldn’t see it yet on scans etc.

I had FOLFOX then a block of chemoradiation then FOLFOX, then chemoradiation and then FOLDOX again. Then had the 6week wait before surgery, and then 9rds of ‘Mop-up’ chemo.

The result a complete pathological response to the neoadjuvant treatment so it was worth it in that sense. My specialists told me that they had only tried that protocol with one other person with good results (and he wasn’t Stage 4. They tell me that they are intending to use my protocol as the common course for people in the same situation.

Whatever you decide, make sure you understand what they’re giving you and why. It won’t be nearly as bad as you think and you’ll find a wealth of info here.
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Lynnd
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Joined: Thu Oct 12, 2017 4:09 pm
Facebook Username: Tammydford

Re: Doctors disagree on rectal cancer treatment

Postby Lynnd » Thu Oct 12, 2017 8:33 pm

Thank you so much for the replies. I feel like I am now better prepared to make an informed decision. I had forgotten that I had looked at the NCCN guidelines when the tumor was first found a month ago. It was before it was staged so I didn't know what to look at.

I have decided to go with the recommendation made by Sloan Kettering. I was treated for breast cancer five years ago at UAB (Birmingham, AL) so that's who I initially turned to. UAB was on board with me seeking a second opinion until it deviated from their opinion.

When you get a diagnosis like this, the information comes fast and furious. It's so hard to make sound decisions quickly. Thank you for taking the time to give me differing viewpoints. It is exactly what I needed.

bbc12
Posts: 3
Joined: Thu Jul 13, 2017 6:05 am

Re: Doctors disagree on rectal cancer treatment

Postby bbc12 » Thu Oct 12, 2017 8:39 pm

Hi
Sorry your going through this :(
For what its worth I also had stage 3 rectal cancer , I had the 8 rounds of Folfox with the sigmoidoscopy half way through to be sure it was working. This was followed by Chemo- Radiation with Xeloda pills. All done through major cancer center. I had a complete response so I am currently being followed with "watch and wait" . From what I recall, (but note, it was a couple of years ago at this point), I was told that one of the goals of this approach was to get the systemic treatment going to treat any possible micro metastasis sooner (i.e. -- first with the IV Folfox) rather then later (i.e.-after radiation & surgery) and also that I would be better able to tolerate the Folfox before the stress of radiation and surgery, thus allowing me to complete the full 8 dose course of Folfox. I just went with the flow and did not get second opinions when I was diagnosed so I don't know what any other oncology group thinks. So, sorry to not be able to give you any clear opinions on the subject -- but I thought I would reply with what I remembered so that maybe you could use that information in further discussions with you doctors to help you make this difficult decision.
Good Luck and I Hope it all goes smoothly for you.

Tupelo honey
Posts: 18
Joined: Tue Jul 19, 2016 7:57 pm

Re: Doctors disagree on rectal cancer treatment

Postby Tupelo honey » Thu Oct 12, 2017 9:45 pm

If I could change one thing about my treatment, it would be to have xelox sooner. I was (am?) seriously worried about the fact that between diagnosis in Sept 2015 and surgery in March 2016, absolutely nothing was officially done to address biopsy-related or natural metastasis. Yes, I took Xeloda during radiation Nov--dec but the docs assured me the dose was only high enough (2500 mg) to "sensitize the radiation", not address global metastasis or potential biopsy seeding. Drove me nuts! I always took my Xeloda defiantly with a couple of slices of toast hoping the folic acid would boost effectiveness!
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED

Aqx99
Posts: 276
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Doctors disagree on rectal cancer treatment

Postby Aqx99 » Thu Oct 12, 2017 10:59 pm

Lynnd wrote:Thank you so much for the replies. I feel like I am now better prepared to make an informed decision. I had forgotten that I had looked at the NCCN guidelines when the tumor was first found a month ago. It was before it was staged so I didn't know what to look at.

I have decided to go with the recommendation made by Sloan Kettering. I was treated for breast cancer five years ago at UAB (Birmingham, AL) so that's who I initially turned to. UAB was on board with me seeking a second opinion until it deviated from their opinion.

When you get a diagnosis like this, the information comes fast and furious. It's so hard to make sound decisions quickly. Thank you for taking the time to give me differing viewpoints. It is exactly what I needed.


I can't believe your local hospital is not willing to work with an outside facility, even though it differs from their plan. My cancer center is happy to change the protocol if someone gets a second opinion that differs from theirs. They coordinate with the other hospital so the patient can get their treatment here at home, instead of having to travel. Is there another local hospital you could try to make the arrangements with?
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
1/23/18 Reversal

mozart13
Posts: 102
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Doctors disagree on rectal cancer treatment

Postby mozart13 » Fri Oct 13, 2017 7:32 am

I had standard approach, xeloda with radiation, worked like a charm, than chemo after.
Apparently xeloda with radiation works like a turbo, so I was told.
Never had a pain, just tired, usually recovered by Sunday, treatment was Monday through Friday.

Good luck to you!
55 year, male, never been seek in my life.
Diagnosed with T1,T2 N0 M0 rectal cancer, tumor 4.5cm,
Stage 1
CEA 2.0
Discovered by pure lack, after taking baby ASA, had blood in stool.
25 sessions of Chemo/rad finished end of January 2017, focus was on lymph nodes
Tumor erased, CCR, negative mri, ct, scope, no evidence of cancer
W&W approach 8)
April 2017, folfox 8 rounds plus 2 rounds of xeloda
Sept.2017 CT , MRI negative

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susie0915
Posts: 541
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Doctors disagree on rectal cancer treatment

Postby susie0915 » Fri Oct 13, 2017 9:44 am

I had chemo/radiation, surgery, then chemo. After chemo/radiation all that was left was scar tissue. There was minimal residual cancer cells
in the pathology after surgery. But I thought it worked well for me. Good Luck. So much information, tough to make decisions.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Basil
Posts: 213
Joined: Thu Mar 16, 2017 12:33 pm

Re: Doctors disagree on rectal cancer treatment

Postby Basil » Fri Oct 13, 2017 10:05 am

I had six rounds of FOLFOX, surgery, path complete response and the remaining six rounds of FOLFOX cancelled.
40 y/o male, kids 6&9
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


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