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Jenb
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Question

Postby Jenb » Wed Dec 27, 2017 2:32 pm

Last December 27th, I had a colonoscopy. What was to take 20 minutes, turned into 2 and 1/2 hrs. They cut out 3 polyps that were each 7 mm. He told me to come back in 3 months to make sure all was okay they grew back within 3 months. Which pathology report said cancer. He immediately sent me to surgery, and surgerion removed 2 ft of colon. No chemo, as he said it did not spread and he got it all. This was in January of this year 2017. A few weeks ago, I had another colonoscopy. They removed 6 polyps. 2 were okay and 4 were precancerous. Dr felt that they were coming back pretty soon. He first set me up for 3 year colonoscopy, but changed to 2 years. I want to also mention I've had breast cancer in my 30th. I'm now 56. My question is should this be repeated every year, or is 2 years okay?? Thanks in advance...colon cancer is all new to me, breast cancer is so very different.
Colon cancer
Stage 2 breast cancer with chemo

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juliej
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Re: Question

Postby juliej » Wed Dec 27, 2017 7:46 pm

First of all, make sure you are going to a board-certified gastroenterologist and a board-certified colorectal surgeon. I can't stress the importance of this enough. You need an expert when you're dealing with cancer.

Second, make sure you get genetic testing. There are a couple types of colon cancer that cause the body to form lots of polyps. One is called FAP (familial adenomatous polyposis) and another is called Lynch Syndrome. Lynch Syndrome is associated with an increased risk of colorectal cancer as well as other forms of cancer including endometrial, ovarian, gastric, urinary tract, and pancreatic. You need tests for MLH1, MSH2, APC, MSH6, PMS2, and MUTYH, so make sure you ask your oncologist for genetic testing for Lynch and other mutations. This is especially important in your case since you've already had breast cancer.

Are you seeing an oncologist? Or just your GI doc? Did they tell you the stage of the cancer? Did they do a CT scan to make sure there was no spread to other parts of your body? Did they do a CEA test? Ask for copies of your pathology report. That's where the staging information is located. See if you can get referred to a board-certified oncologist for his/her opinion on your treatment.

Since you had colon cancer and you also had precancerous polyps return in less than a year, I think your doc should be monitoring you more closely than waiting another 2 years for a colonoscopy. Get the genetic tests, a CT scan, a CEA test, etc. and then think about getting a second opinion on how you should be monitored. The good news is that your last colonoscopy found the polyps when they were just "precancerous." That's what should happen. However, in my opinion, your current doc is too cavalier with your monitoring by waiting so long for the next colonoscopy considering your history. Don't take chances with your life.

Hope this helps!
Juliej
Stage IVb, liver/lung mets 8/4/2010
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Jenb
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Re: Question

Postby Jenb » Thu Dec 28, 2017 9:39 am

Thank you for your response, Julie. The surgerion didn't do a cat scan.as he felt not necessarily, nor do he feel a visit to my oncologist was necessary. No other tests were ran. Just sent to surgerion, removed part of colon and that was that. I'm going to make an appointment with my oncologist to go over the reports, pathology reports also. I'm just a bit worried as I've already had breast cancer and now this. I'll ask for tests you mentioned, if for nothing else peace of mind. Breast cancer I went through chemo, with colon cancer I was made to feel no big deal. Thanks again!
Colon cancer
Stage 2 breast cancer with chemo

Deb m
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Re: Question

Postby Deb m » Thu Dec 28, 2017 11:33 am

You need to get genetic testing done!

weisssoccermom
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Re: Question

Postby weisssoccermom » Thu Dec 28, 2017 12:06 pm

I would like to add something else. Now, please don't misunderstand...I am NOT saying that your cancer has spread, BUT.....how can the surgeon (or you) know for certain if you haven't had a CT, MRI or PET scan? Just because there were no local nodes doesn't mean anything nor does the size/depth of the tumor indicate that nothing has spread. Look at the ACS site.....a stage IV (and again, PLEASE do not think that I am saying this is you) can have ANY 'T' and any 'N' designation but just one distant met. No surgeon should be telling any patient that he/she is done and doesn't need chemo.....that decision is up to the oncologist. Now, it very well may be that the surgeon discussed your case with an oncologist BUT.....that should have included YOU in the discussion.

Talk with your oncologist. Get some imaging study done to make 100% certain what exactly you are dealing with. Get your pathology reports....both from the colonoscopy AND the surgery and get a 3 ring binder, complete with dividers and keep all your test results. While getting a baseline CEA would have been helpful prior to your surgery, at least get one now and have your onc check in regularly. Even if you are considered a very early stage I, you should have followup screening (blood work, at least a yearly CT scan, exam) for the first few years.

As for your colonoscopy schedule, my first question is this. Is this surgeon a board certified COLON and RECTAL surgeon as opposed to a board certified general surgeon? If not, then find someone different. Personally, I wouldn't be going to that surgeon who didn't feel it necessary to refer me to an oncologist. SURGERY is the job of the surgeon....CHEMO is the specialty of the oncologist. I'm a FIRM believer that surgeons should do the surgery part and keep their noses out of the chemo and ONCS should do the chemo part and keep their noses out of the surgery part. That's shy the docs SPECIALIZE in their respective areas. No onc should be telling a patient which surgery to have/not to have and no surgeon should be telling a patient not to/to have chemo.
I would get into my onc for a followup and consultation as to whether or not I needed/didn't need chemo. I would also want my onc to lay out a follow up schedule for me and, as Julie suggested, talk to him/her about specific genetic testing. To simply just say....hey, you're ok because I 'got it all' is, in my opinion, reckless and irresponsible.
Get a second opinion of the colonoscopy schedule. Sounds like your body is not only a good host for polyps but also that your polyps start to turn cancerous quite quickly. (Either that or the doc doing the colonoscopy missed a whole lot!) As much as I hate the whole prep for the colonoscopy, with your history of polyps, I would want to be screened at least every 18 months. Talk to your onc about this as well and get his/her opinion as well.

Good luck. Please keep us updated as to what happens with your onc appointment.
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
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Jenb
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Re: Question

Postby Jenb » Thu Dec 28, 2017 4:20 pm

This is all actually worse. The first time I went on.December 27th, cutting out a number of 7mm polyps, the results showed that all were dysplasia. He said after 2 and 1/2 hrs he got them all. Then.wanted to see me in 3 months to do another colonoscopy. He called a week later said they grew back and it was not good. HIS EXACT WORDS. He made an appointment with a surgerion. The surgerion went on and on telling me I had cancer, I could either die or have part of my colon removed with the cancer. Of course I went for surgery. Mind you, NO scan was done, as he felt no.necessary. well on the 19th of this month, not a year later, o.got 6 more polyps. 6 total as mentioned. 4 precancerous. At first he said come back in 3 years, then when I questioned how fast they came back, he said yes, so.come back in.2 years. So.hear is the mind BLOW, that had me in another world. He told me in.front of my.husband I didn't have cancer before!!! Mind you, he said it was bad, made the appointment with surgerion and now says I didn't have it. The surgerion told me I DID!!! even showed me the type and pathology report. I called my oncologist today, called both GI and SURGERION to have my reports sent to my oncologist. I've lived in HELL since my GI told me this.year surgerion went out and told 7 members of my family, he got all the cancer! What am I to believe??? Now 6 more pop up?? This is a nightmare. :(
Colon cancer
Stage 2 breast cancer with chemo

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

Re: Question

Postby weisssoccermom » Thu Dec 28, 2017 4:35 pm

What exactly does the pathology report say? If you have it, perhaps you could copy it here.
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

Jenb
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Re: Question

Postby Jenb » Thu Dec 28, 2017 4:41 pm

Also to answer the question did surgeon talk to my oncologist, NO. I brought it up and he said not necessary. I had NO TESTS, besides blood to test in case I needed blood! Not even a chest xray!!!!

I don't have with me, I'll get a copy Thursday.
Colon cancer
Stage 2 breast cancer with chemo

Jenb
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Re: Question

Postby Jenb » Thu Dec 28, 2017 4:44 pm

I just know the surgeon said, Villous
adenoma.
Colon cancer
Stage 2 breast cancer with chemo

Jenb
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Re: Question

Postby Jenb » Thu Dec 28, 2017 4:54 pm

He also mentioned carcinoma. But not sure how that goes along with other! I've had breast cancer, so very familiar with it. Chemo with that. This is so different.
Colon cancer
Stage 2 breast cancer with chemo

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

Re: Question

Postby weisssoccermom » Thu Dec 28, 2017 5:14 pm

Just an FYI.....a villous adenoma is just a type of polyp that can become malignant....it doesn't mean that it is.
USUALLY, if there was cancer.....I would have thought that the surgeon would have said......adenocarcinoma....totally different.

What you NEED to get is a copy of the pathology report and know for certain what you are dealing with. I would hate to think (only a chance of this) that the surgeon removed the section of your colon for PRE-cancerous polyps. The only way you're going to know for certain is to get a copy of that pathology report. Personally, I wouldn't be waiting a week for that report....go get it yourself from the center that did the colonoscopy. Its YOUR report and they have to give you a copy of it. Your GP hopefully also has a copy of it if the center gives you a difficult time.
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

Jenb
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Joined: Wed Dec 27, 2017 2:17 pm
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Re: Question

Postby Jenb » Thu Dec 28, 2017 5:22 pm

Yes he did say adenocarcinoma. But also said the other
This is why I got confused. Ill.wait for pathology report. I'll post when I get it. Thank you, it's all been very confusing to me. When I asked to explain it all, it seemed to bother him. I had to ask HIM for the results. Thanks again. The plus is my sister is a nurse and worked in oncology and 2 brothers are drs. But this is not their field...
Colon cancer
Stage 2 breast cancer with chemo

Pemba
Posts: 84
Joined: Thu Aug 24, 2017 7:52 am

Re: Question

Postby Pemba » Fri Dec 29, 2017 5:26 am

You should find another doctor ASAP, and maybe get another colonoscopy in 6-12 months. If the polyps he removed was flat type polyps they can be difficult to remove properly, that result in them growing back again. If that happens I believe surgery is in the table. But the way they treated you and the lack of information is unforgivable.

Villous adeoma is not cancerous, it’s a type of polyp that has a higher chance of becoming it in the future.
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19

Jenb
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Re: Question

Postby Jenb » Fri Dec 29, 2017 10:17 am

I looked back, he said adenocarcinom. I.do want to mention, not sure if this is related. But, at.the same time of my first colonoscopy, I also had the test to check my esophagus and stomach. My esophagus was almost completely shut, so stretched. However I also had 6 ulcers. He showed my husband and I the pic. Nasty bloody things. This was a year ago, he does have me on meds. But, could this in anyway be related to colo cancer? BTW, this has never been checked again. My.understanding ulcers can.turn into cancer?
Colon cancer
Stage 2 breast cancer with chemo

Pemba
Posts: 84
Joined: Thu Aug 24, 2017 7:52 am

Re: Question

Postby Pemba » Fri Dec 29, 2017 10:48 am

Jenb wrote:I looked back, he said adenocarcinom. I.do want to mention, not sure if this is related. But, at.the same time of my first colonoscopy, I also had the test to check my esophagus and stomach. My esophagus was almost completely shut, so stretched. However I also had 6 ulcers. He showed my husband and I the pic. Nasty bloody things. This was a year ago, he does have me on meds. But, could this in anyway be related to colo cancer? BTW, this has never been checked again. My.understanding ulcers can.turn into cancer?



Ulcers is from A bacteria called Helicobactor Pylori, it can in few cases turn cancerous if not treated. When a family member got it they also took a tissue samples to study, she also had a checkup to see if the medication was working, and it I was. 6 ulcers is a lot I would definitely get a checkup to see if there all gone.

But I don’t know if it can have any connection to polyps.
Age: 26
2017: 15mm Tubulovillous adenoma- Low grade dysplasi.
Next scopy: original 2020 probably 2018-19


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