Colon rectal cancer found during routine colonoscopy

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Lotus
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Joined: Thu Mar 29, 2018 10:03 pm

Colon rectal cancer found during routine colonoscopy

Postby Lotus » Thu Mar 29, 2018 10:20 pm

Dear friends,
This is my first post here. I am a 71 year old female. I went in for a routine colonoscopy last week and expected the results to be normal. I last colonoscopy was 10 years ago I had no polyps at that time so they told me to come back in 10 years. The doctor found a polyp that he said measured 2.5 cm x 2.5 cm and he said it was 13 cm from the end of my colon.
He phoned me the next day to tell me that they had found cancer cells in the polyp. That same day he ordered bloodwork and CT scan. Blood work was normal he said and the CAT scan showed that the cancer had not spread to other organs. So today I met with an oncologisT. He told me that the stage could not be determined until I get an MRI and another test which would involve going down my throat with a camera I forget the name of that test. He said they’re not sure if the mass has extended to the rectum. It seems to be located in the sigmoid colon and rectum but these two tests are needed to determine exact location. He said I will likely need radiation chemotherapy and surgery. Radiation and chemo therapy would be use for us to shrink the tumor and then surgery would be performed to remove it. My greatest concern is the radiation and chemo because I’m very sensitive to any type of drug especially at my age. I am on the thin side so they suggested I gain a few pounds if I could. He wants to see me back in two weeks after these tests are completed and after I have seen the radiation oncologist and the surgeon oncologist. I would love to hear from anyone who has gone through something similar. We live in a midsize city with a teaching hospital that seems to be pretty good. But I’m wondering if I should go to a larger city like Houston for a second opinion. I’m very anxious and scared . I had a brother-in-law with lung cancer who dropped it after his second radiation treatment my health isn’t bad but it isn’t great either I have a thyroid condition and my energy is low as it is i’m so happy to find this form. I do have support in my life but no one can really relate to what I’m going through so I’m grateful to be here .
Lotus
Lotus female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan showed no distant metastatic disease identified
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no evidence for lymph node spread.
Stage 1 t2n0
3/22/18 CEA 0.8 range 0.0-3.0
4/16/18 Robotic Assisted LAR
Pathology negative for malignancy

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O Stoma Mia
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Location: Traveling abroad

Re: Colon rectal cancer found during routine colonoscopy

Postby O Stoma Mia » Fri Mar 30, 2018 1:02 am

Welcome to the Forum. There are many here who have gone through something similar to your situation, and some of these members may drop by later to leave comments.

Right now you are in the tentative diagnosis stage. You will know more about your diagnosis/staging when they complete the required tests.

It looks like they are planning to treat your tumor as Rectal Cancer, since they mentioned radiation. (They don't do radiation for colon cancer cases.) It also looks like they are following the steps indicated in the NCCN guidelines for Rectal Cancer. Here is a very brief overview of those steps

https://www.nccn.org/patients/guidelines/quick_guides/rectal/index.html

NCCN has a more elaborate set of guidelines once you know more about your precise stage.

In my opinion, it would he a good idea to get a second opinion at MD Anderson Cancer Center (Houston) if you can, because, for certain qualified patients, MD Anderson has been taking some new, effective approaches to treating rectal cancer that do not involve radiation. One member here, Basil, has been through that program.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59214&p=468445#p468445
Last edited by O Stoma Mia on Fri Mar 30, 2018 1:41 am, edited 1 time in total.

Aqx99
Posts: 400
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Colon rectal cancer found during routine colonoscopy

Postby Aqx99 » Fri Mar 30, 2018 1:36 am

I recommend you see a board certified colorectal surgeon. The pelvis is a very delicate area to have surgery performed in, so you want someone specially trained performing that surgery. I just finished treatment for rectal cancer, as you can see in my signature. Feel free to ask anything.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
9/18 Bilateral Prophylactic Mastectomy

mozart13
Posts: 133
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Colon rectal cancer found during routine colonoscopy

Postby mozart13 » Fri Mar 30, 2018 4:42 pm

Radiation/chemotherapy is standard approach to shrink cancer, and maybe completely erase it. Chemotherapy combined with radiation is usually in form of pills called xeloda.
You will not get full dose, as you would if you do only chemotherapy.
I did it, it was fairly easy for me, hardlly any symptoms. Cancer was completlly erased.

There is no easy way in treating cancer.
They like to shrink cancer first, as it is easier to operate on it. When cancer is smaller there is less chance of cutting through, surgeons try to get it out in one piece without pocking through, as there is chance that cancer will multiplly very fast if pocked or cut through.

MRI will give complete picture on cancer, and stage it.
I also had short MRI and CT scan by radiation therapy team for proper staging pointing radiation therapy to the right spot.

There is big trial going on now, leading hospital is Memorial Sloan from NY, chemo/rad than chemo in form of folfox, than re-assessment if one needs surgeryor not, or chemo first(folfox), than chemo/rad, than re-assessment.

On this forum you can find a lot’s of usefull info and links:
viewtopic.php?t=53498

Right now focus on what is in front of you, that being chemo/rad, how to get most out of it, also is very important how they focus radiation, with me they told me that they gona focus on lymph nodes, even though lymph nodes weren’t involved.

Good luck to you!
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

Lotus
Posts: 44
Joined: Thu Mar 29, 2018 10:03 pm

Re: Colon rectal cancer found during routine colonoscopy

Postby Lotus » Sat Mar 31, 2018 8:21 am

Can’t thank you all enough for taking time to respond. The links and information and support means so much....you have no idea. Met with second oncologist yesterday. He said I should’ve been referred to surgeon instead of him. I had an MRI done yesterday. He said it would tell us the exact stage. Also will tell us if how much is in the rectum. He said he’s more interested in how deep it is than how wide it is. He said it may not be necessary to do test that goes down your throat with a camera .... He said we know from the CAT scan that it’s not stage fourbut it could be stage one two or three. We live in Greenville SC. If anyone here has been treated in Greenville I would so much appreciate any info you can give about your care and who you saw. GHS is a teaching hospital. They do have a board certified colon surgeon. St frances hospital also here. They have a general surgeon, not colon specific but he is known to be very good.....decisions decisions.
I also contacted MD Anderson in Houston and having records sent there. I know I havve to move quickly but I also want to be sure To gather information and that takes time. I’d much prefer to stay at home for all this. Going to Houston seems daunting but will do if I have to. I also have family in Pittsburgh and can go there. Has anyone here been treated at UPMC?
They r ranked v high for many things...not sure abt colon cancer. Any info is welcome and appreciated
Lotus female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan showed no distant metastatic disease identified
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no evidence for lymph node spread.
Stage 1 t2n0
3/22/18 CEA 0.8 range 0.0-3.0
4/16/18 Robotic Assisted LAR
Pathology negative for malignancy

NHMike
Posts: 1427
Joined: Fri Jul 21, 2017 3:43 am

Re: Colon rectal cancer found during routine colonoscopy

Postby NHMike » Sat Mar 31, 2018 9:48 pm

I was diagnosed Stage 3B Rectal Cancer and the approach was similar to what you wrote: chemo + radiation to shrink the tumor, surgery, mop-up chemo, and then ileostomy reversal. I was diagnosed at a local hospital for oncology and radiation and went for second opinions at Dana Farber Cancer Institute and picked a surgeon at Brigham and Women's in Boston. The surgeon was board certified in colorectal surgery and very well-qualified. Dana Farber agreed with my local doctors so I had the radiation and chemo done locally and the surgery in Boston.

I was staged after the MRI as well and the MRI was ordered by the surgeon.

The most important selection of doctors is the surgeon. You want someone that does CRC surgery on a regular basis and is knowledgeable about preventing inadvertent spread of cancer cells during the surgery. Rectal cancer surgery is also not easy - mine took over four hours. We have no CRC surgeons in my state and this is an area where having a specialist can make a considerable difference in outcomes. My hospital stay was four nights and traveling to another city requires a lot of effort and support but I think that it's a good idea if you can swing it.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda +radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx 8 cycles 12/17-6/18

Lotus
Posts: 44
Joined: Thu Mar 29, 2018 10:03 pm

Re: Colon rectal cancer found during routine colonoscopy

Postby Lotus » Sun Apr 01, 2018 4:55 am

Thanks very much, NHMike, that is extremely helpful. What you say about surgeon makes sense and didn’t think about inadvertent spread of cancer cells when I chose place to get colonoscopy.....I’m wondering now if the doctor who removed polyp may. have caused cancer to spread. I feel blessed to have found all of you here, so helpful.
Lotus female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan showed no distant metastatic disease identified
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no evidence for lymph node spread.
Stage 1 t2n0
3/22/18 CEA 0.8 range 0.0-3.0
4/16/18 Robotic Assisted LAR
Pathology negative for malignancy

rp1954
Posts: 1325
Joined: Mon Jun 13, 2011 1:13 am

Re: Colon rectal cancer found during routine colonoscopy

Postby rp1954 » Sun Apr 01, 2018 6:11 am

Age and fragility are certainly issues for chemo and radiation therapies. The question is, are there lower impact options that can deliver good performance?

The answer is yes. This is part of why we chose nonstandardized, less onerous options, based more on specialized papers, and some extra bloodwork. Often times, a little extra blood or tissue work helps estimate particular possibilities, to see problems/opportunities, and fix them before they snowball.

What if some stage 2 or 3 patients could skip oxaliplatin or radiation with better longevity, particularly those who were "fated" by common biomarker(s) to recur after primary adjuvant (chemo) treatment ? This was provocatively demonstrated over 15 years ago, yet only crickets answered in the US. (Japanese research did more.) We are one of the few (only?) to take advantage of this situation yet the preliminary investment and risk were some extra blood tests, a 10 cent drug on a target, and some high potency supplements. For 6+ bonus years already

Anyway, our first steps are these:
1. extra initial blood tests, these are most useful and sensitive starting near diagnosis or before the first major treatment
2. read these articles, mostly in the first 24 hrs: Life Extension Foundation's intro to CRC, cancer surgery, Beyond colonscopy, Preventing surgery induced metastasis.
3. Add some mild drugs and targeted, extra potent supplements e.g. LEF recommendations; most of our initial load 2010

You are early enough after diagnosis to get some extra chances and serious advantages if you do some reading and take a few proactive steps today and this week. With thanks to OSM (she has several several posts that are valuable to read).

People often get bogged down between reading, thinking, hoping, worrying, lobbing a few random pills, being derailed by social slights (e.g. dr snickers), and lack of cooperation. After enough thought (or bs), we do it. e.g. simply pick up the phone and call a blood lab ourselves; take the pills. My wife caught the most important train(s) of her life, sometimes just barely in time.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Lotus
Posts: 44
Joined: Thu Mar 29, 2018 10:03 pm

Re: Colon rectal cancer found during routine colonoscopy

Postby Lotus » Sun Apr 01, 2018 11:39 am

RP1954
Thank you very much for the info. I am exhausted from little sleep and have brain fog but will try to decipher all that you sent me. I tried to pm you but don’t have that capability since I am new here. You mention japanese research.
Do you or amy others here know if the Japanese are advanced in the area of colon cancer research and treatment?
My husband is Japanese and we could go there if that is the case. This forum is invaluable, Thank you all so much
Lotus female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan showed no distant metastatic disease identified
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no evidence for lymph node spread.
Stage 1 t2n0
3/22/18 CEA 0.8 range 0.0-3.0
4/16/18 Robotic Assisted LAR
Pathology negative for malignancy

rp1954
Posts: 1325
Joined: Mon Jun 13, 2011 1:13 am

Re: Colon rectal cancer found during routine colonoscopy

Postby rp1954 » Sun Apr 01, 2018 11:25 pm

We've utilized English language papers from Japan as one of three major technology pools.

Japan's cancer and CRC treatment programs developed along some different lines in the 1970s - 2000s period, largely driven by national economics - costs for socialized medicine, and local source, vs the patented medicine marketing machines of the West. Japanese medicine developed several natural products as prescription medicines, while they were unknown or lay moribund in the US, until they became available as supplements. Western medicine tends to ignore or deprecate these with biased comparisons. For our purposes, Japanese treatment alone was incompletely developed and integrated.

First were the developments of PSK, a specialized Coriolus mushroom extract for immune support as a cancer treatment, and CoQ10 for CV/heart failure problems. Also they relied more on blood tests with some additional biomarkers e.g. CSLEX1 as well as CEA and CA199. For rectal cancer, rather than use radiation in this period, they developed precise surgery techniques, where in some of their papers they are pretty condescending about their western counterparts.

In the 1980's Japan introduced an oral 5FU derivative called UFT, tegafur-uracil, to replace oral (ouch!) and intravenous 5FU, about 15 years before Xeloda (capecitabine) in the West. UFT was recognized in parts of Europe as a nice drug. However, not the US, perhaps a victim of the 1980s trade war, lack of marketing, FDA or pharmas. In a lot of places, oral chemo has been resisted by the oncologists themselves. Tegafur-uracil then became an inexpensive generic in Asia much earlier. Also Japanese doctors developed high dosage menaquinone-4 (menatetrenone; MK4), the human form of vitamin K2, for osteoporosis and liver cancer treatments. In the 1990s, Japanese drs added their research efforts into a Western drug called cimetidine that became a major line of cancer research and yielded a targeted treatment with companion markers, that remains obscure in the West - no labeling, support or advertising budget.

All of these things are potentially useful in advanced or aggressive colorectal cancer, depending on particular biology. We brought them all to bear over our first 1-2 years, along with other cancer technologies that were not developed in Japan. And so, we have avoided some really nasty chemo and radiation treatments with much better results. Materially, the only thing that you cannot get in the US, is UFT - only Xeloda is available.

Knowledgeable support or DIY to go off of standard oncology is the biggest obstacle for most people. Many people use a dual provider structure, onc MD + ND/MD/DO/FASBO but roll your own narrows the field to get this degree of flexibility. Some use ongoing phone consults; we tend to use consults for initial deployment.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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O Stoma Mia
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Re: Colon rectal cancer found during routine colonoscopy

Postby O Stoma Mia » Mon Apr 02, 2018 9:50 am

Lotus wrote:... Has anyone here been treated at UPMC? They r ranked v high for many things...not sure abt colon cancer. Any info is welcome and appreciated

There is a highly respected member here who had liver surgery at UPMC. Here is what she had to say:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52795&p=415922#p415922

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=36809&p=263293#p263287

Lotus
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Re: Colon rectal cancer found during routine colonoscopy

Postby Lotus » Tue Apr 03, 2018 7:34 pm

Just added signature below...had MRI ....stage 1 no lymph node involvement but I guess lymph node involvement can not be determined with certainty until surgery? I meet with surgeon in Greenville on Monday. Oncologist told me that there’s a good chance that I will only need surgery .....no radiation or chemo. He said the mass is shallow. The mass is located at the rectal sigmoid colon juncture. He said that is a precarious location. The surgeon is board certified and I’m assuming he’s had training with this type surgery. Both oncologist and surgeon have excellent reputation. Oncologist said I may need EUS test or be sure of mass depth. Gastroenterologist commented to me that the cancer may have been completely removed during colonoscopy....and that of it wasn’t, it may be possible to do a second colonoscopy to remove it. I’m sure I’ll know more on Monday when’s i meet with surgeon. Does anyone have suggestions for questions that I should ask surgeon? I am still considering going to Houston for treatment but would prefer to do this here in Greenville....my big concern is location of mass and potential difficulty removing it. I checked health grades for surgeon rating and he received very high rating across the board. Thanks to whoever suggested I check that. Your comments are invaluable to me, I’m so grateful.
Lotus female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan showed no distant metastatic disease identified
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no evidence for lymph node spread.
Stage 1 t2n0
3/22/18 CEA 0.8 range 0.0-3.0
4/16/18 Robotic Assisted LAR
Pathology negative for malignancy

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O Stoma Mia
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Location: Traveling abroad

Re: Colon rectal cancer found during routine colonoscopy

Postby O Stoma Mia » Tue Apr 03, 2018 8:30 pm

Lotus wrote:... Does anyone have suggestions for questions that I should ask surgeon? I am still considering going to Houston for treatment but would prefer to do this here in Greenville....my big concern is location of mass and potential difficulty removing it...

1. You could ask what kind of ultrasound equipment they are going to use for staging, because it seems that the newer 3D endoscopic equipment is better and more accurate for staging. It's more accurate than MRI, and more accurate than the traditional EUS. Do they have the kind of equipment that can be used in the upper recto-sigmoid junction area?

https://www.ncbi.nlm.nih.gov/pubmed/29320861

2. You could ask what kind of surgical options he is considering, because there are several options available, and they have different implications for disease-free survival (DFS) and post-surgery Quality of Life (QOL).

Lotus
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Joined: Thu Mar 29, 2018 10:03 pm

Re: Colon rectal cancer found during routine colonoscopy

Postby Lotus » Tue Apr 03, 2018 8:42 pm

O stoma mia
Thank you. I believe that the only type equipment they have for staging is the eus becasue that is the only test that was mentioned. But I will ask
Lotus female age 71
3/21/18 Routine colonoscopy. Dx "rectal mass" colonic adenocarcinoma
3/22/18 Ct scan showed no distant metastatic disease identified
4/1/18 MRI shows left lateral wall thickening of the rectosigmoid junction originating app 13 cm. from the anal verge. Overall lesion 3.5 cm. No progressive adjacent adenopathy.
Depth T2 no evidence for lymph node spread.
Stage 1 t2n0
3/22/18 CEA 0.8 range 0.0-3.0
4/16/18 Robotic Assisted LAR
Pathology negative for malignancy

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O Stoma Mia
Posts: 1330
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Surgical techniques available for rectal cancer

Postby O Stoma Mia » Wed Apr 04, 2018 12:23 pm

Lotus wrote:... He said the mass is shallow. The mass is located at the rectal sigmoid colon juncture. He said that is a precarious location...

When you meet with the surgeon on Monday, you might ask him to clarify what he meant by "precarious location", and ask him what, exactly, would make this kind of surgery difficult.

You can also ask him how confident he is that the MRI "shallow" staging is accurate, since there are studies showing that it is difficult to get accurate staging in the upper rectum and lower sigmoid areas:
"The endoscopist and the radiologist should not be too overconfident with localisation of the tumour in cases of high rectal or low sigmoidal cancer."

Reference:The localisation of cancer in the sigmoid, rectum or rectosigmoid junction using endoscopy or radiology—What is the most accurate method?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4226835/

And as I mentioned earlier, it would help if he could: (a) explain all of the options for surgery that are available to you, and (b) explain which one he thinks would be the best for you, and why.

Some of the surgical techniques available for rectal cancer are:

  • Polypectomy and local excision
  • Local transanal resection (full thickness resection)
  • Transanal endoscopic microsurgery (TEM)
  • Total Mesorectal Excision (TME)
  • Low anterior resection (LAR) – Open surgery LAR
  • Low anterior resection (LAR) – Laparoscopic assisted LAR
  • Proctectomy with colo-anal anastomosis
  • etc.
Reference: http://www.cancer.org/cancer/colonandrectumcancer/detailedguide/colorectal-cancer-treating-rectal-surgery


And here are some additional references:

What you could do before Monday is to read up on these various rectal surgery options so that you can follow what the surgeon is saying.


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