cauliflower stalk/ mushroom mass, 5cm: How to proceed?

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dallasdog
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cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby dallasdog » Sun Mar 18, 2018 9:30 am

Last week I had a colonoscopy and after the procedure, the GI specialist told me she is "98% sure" I have colon cancer. It is a 5 cm (2 inches) mass that looks like a mushroom with a stalk. She said she took a small biopsy of the stalk. She didn't remove it and put me in touch with a colorectal surgeon. She said I would also have a CT ordered.
I met with the colorectal surgeon the next day. The biopsy results were not known at that time. The colorectal doctor indicated that since I am young (30s) that he would not want to remove any colon unless absolutely necessary and sort of bounced it back to the GI specialist.
Later that same day I received the path of the biopsy. Margins were clear but the GI specialist and Colo surgeon still think it has cancer in it. This is the path that they have laid out for me:
in Two weeks I will have another colonoscopy at which point the GI specialist with perform the procedure to remove the 5 cm mass. That mass will then be biopsied. A CT has not been ordered (though I thought there would be one)
*A little background, I have had GI issues and bleeding for over a year.

My questions and concerns are as follows:
Should the Colorectal surgeon be doing the surgical procedure to remove the mass instead of the GI specialist? (I've been told that I should have a good Colorectal surgeon perform it by several people)
If the surgeon doesnt want to do it, why would that be the case?
Should I have a CT scan ordered now? Or after the mass is removed?
Are there any other tests I should be doing?
I have no idea what I am doing here, so any advice/recommendations would be helpful. I guess it is possible that it is just a huge uncancerous growth?

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chrissyrice
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Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby chrissyrice » Sun Mar 18, 2018 2:42 pm

Yes, makes me wonder too.

Results of the CT scan are important too ... you could have other spots that would make the second colonoscopy a mute point and take you in a different direction with oncologist and colorectal surgeon.

Be sure to seek out an NCI center for your best care.

Best wishes for a good outcome,
Chrissy
Dx 10-31-09 Surgery 12-1-09 Sigmoid Colon Stage IIIb; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU & Leucovorin;12-16-2010 PET/CT Scan Cancer Free;7-05-2012 CT Scan NED 2 years;10-13-2013 NED 3 yrs; 08-01-2014 NED 4 yrs; 06-30-2015 Stage 4 iliac lymph node(s) 08-11-2015 Surgery 3 cm tumor and iliac artery graft done. Positive margins in the abdominal aorta, No chemo. 03-16-2016 CT Scan Stable,06-16-2016 CT Scan Stable,09-21-2016 CT Scan Stable,12-2016 Stable,03-31-17 Stable,
Recurrence 6-30-17

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O Stoma Mia
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Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby O Stoma Mia » Sun Mar 18, 2018 3:54 pm

dallasdog wrote:..
My questions and concerns are as follows:
  • Should the Colorectal surgeon be doing the surgical procedure to remove the mass instead of the GI specialist? (I've been told that I should have a good Colorectal surgeon perform it by several people)
  • If the surgeon doesnt want to do it, why would that be the case?
  • Should I have a CT scan ordered now? Or after the mass is removed?
  • Are there any other tests I should be doing?
I have no idea what I am doing here, so any advice/recommendations would be helpful. I guess it is possible that it is just a huge uncancerous growth?


Image

From what you have said, it looks like you might have a 5cm pedunculated polyp, where the head of the polyp has become visibly cancerous but the cancer has not yet descended down to the stalk or to the root of the polyp. This is only a guess on my part. I am not a physician or a medical professional.

It is my guess that their strategy is to remove this large polyp by cutting it off at the base of the stalk, which they seem to think is OK, given that the biopsy of the stalk apparently didn't show any cancer. This procedure is called a "polypectomy" and it does not involve surgery to remove the section of the colon that has the polyp and the polyp root.

I am not at all sure that this would be the best strategy in these circumstances, but I can't say for certain since I have no expertise in this area. What I would be inclined to do would be to seek a second opinion at an NCI Designated Cancer Center, because they would have Board Certified colorectal surgeons who could assess the situation and determine the best way to remove the mass without dropping any cancerous tissue in the surrounding area. In the mean time, I think that they should be doing a CT scan to see if there is any obvious involvement in the nearby regional lymph nodes, or in other places like the liver or the lungs. They should also be doing a CEA tumor marker blood test before the "mass" is removed.

If you are in the Dallas area, there is an NCI Designated Cancer Center at the Harold C. Simmons Comprehensive Cancer Center at the University of Texas there:

https://www.cancer.gov/research/nci-role/cancer-centers/find/utswsimmons

http://www.utsouthwestern.edu/education/medical-school/departments/surgery/divisions/gi-endocrine/#colo

http://profiles.utsouthwestern.edu/profile/76004/craig-olson.html

Lee
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Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby Lee » Sun Mar 18, 2018 4:43 pm

I agree about getting a 2nd opinion, especially at a major cancer treatment center, and before that next colonoscopy.

I would be incline to want to get it out. I was told when they found my cancer, GI doc said cancer or not, it needs to come out.

Remember we are here if you need help and support. There is a wealth of information here and we have all walked in your shoes.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

dallasdog
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Joined: Sun Mar 18, 2018 9:18 am

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby dallasdog » Sun Mar 18, 2018 4:47 pm

THanks. I am in NC. I think I found a Cancer center at Duke. I iwll investigate. So I should demand a CT now (before removal) and the CEa test too?

Lee
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Joined: Sun Apr 16, 2006 4:09 pm

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby Lee » Sun Mar 18, 2018 7:10 pm

dallasdog wrote: . . . and the CEa test too?


Yes regarding the CEA. For some people, CEA can be an indicator of cancer activity. For others it is not. "IF" you have cancer, it's always a good idea to get a baseline. When I was diagnosed, my CEA was in the 20's, following surgery, it dropped down to something around 5 & 6. I also had a CAT scan when I was diagnosed.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

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chrissyrice
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Location: Atlanta, Georgia

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby chrissyrice » Sun Mar 18, 2018 7:41 pm

Check out Duke for sure ... one of the very best!
Dx 10-31-09 Surgery 12-1-09 Sigmoid Colon Stage IIIb; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU & Leucovorin;12-16-2010 PET/CT Scan Cancer Free;7-05-2012 CT Scan NED 2 years;10-13-2013 NED 3 yrs; 08-01-2014 NED 4 yrs; 06-30-2015 Stage 4 iliac lymph node(s) 08-11-2015 Surgery 3 cm tumor and iliac artery graft done. Positive margins in the abdominal aorta, No chemo. 03-16-2016 CT Scan Stable,06-16-2016 CT Scan Stable,09-21-2016 CT Scan Stable,12-2016 Stable,03-31-17 Stable,
Recurrence 6-30-17

Violet
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Joined: Mon Aug 15, 2016 6:43 am

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby Violet » Sun Mar 18, 2018 8:22 pm

Getting a second opinion is an excellent idea. We have done that several times at different points in my husband's care (rectal cancer- stage one diagnosed 2016) and it has been invaluable and also sometimes changed what we chose to do. You would be surprised by the variation in opinions that different surgeons and oncologists have with regards to treatment. I would do some basic reading before you see the second doctor so you have a sense of what questions you need to be asking.

Utwo
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Location: T.O.

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby Utwo » Sun Mar 18, 2018 9:23 pm

Titles sometimes are irrelevant.
In my case a surgeon was reluctant to remove 3.5 cm sessile polyp during colonoscopy.
Then it was removed by GI specialist during next colonoscopy.
Apparently this GI specialist (because he was doing only colonoscopies and nothing else) had better skills.
Anyway, eventually a laparoscopic hemicolectomy was also performed by surgeon #1.
----
Your case is simpler than mine.
Skills of a particular doctor with colonoscope are much more important than colorectal surgeon certification.
Depending on your histology report after this colonoscopy/polypectomy you may not even need a real surgery.
Just keep your finders crossed.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 CT scan, blood test ...
05/2016 "prophylactic" laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan (lower body), colonoscopy OK; CEA = 1.6

Utwo
Posts: 191
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby Utwo » Sun Mar 18, 2018 9:31 pm

chrissyrice wrote:Results of the CT scan are important too ... you could have other spots that would make the second colonoscopy a mute point and take you in a different direction with oncologist and colorectal surgeon.
I disagree.
Typically CT scan is used to exclude a surgery in case of metastasis.
However, because your polyp is so big, it apparently should be removed regardless of results of CT scan.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 CT scan, blood test ...
05/2016 "prophylactic" laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan (lower body), colonoscopy OK; CEA = 1.6

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby O Stoma Mia » Mon Mar 19, 2018 3:19 am

I would say the the way to proceed from now on is to start by first getting a complete picture of your tentative diagnosis so far, expressed in standard medical terminology

You have had a colonoscopy, but do you have a written copy of the colonoscopy report (prepared by the GI specialist)?

You have had a biopsy of the stalk of the "mass" done by a pathologist, but do you have a written copy of the biopsy report of the pathologist?

You need both of the above so that you have access to all of the technical medical terminology describing the facts of your condition.

  • For colonoscopy procedures, the technical medical details are given here:

    Colonoscopy Checklist -- A checklist of the kinds of information they are supposed to be collecting.
    http://phpa.dhmh.maryland.gov/cancer/Documents/Checklist_Colonoscopy%20Report_pocket_wall.pdf

    For a complete colonoscopy report, including the results from biopsies, the report template looks like this:

    A Guide to the Histopathology Reporting of a Polypectomy
    https://www.rcpa.edu.au/getattachment/53d45991-f083-4639-99ab-8cc9f913c4b7/Guide-Polypectomy-local-resections-CR.aspx

    A sample report (with photos) looks like this:

    Sample Colonoscopy Report
    http://www.md-reports.com/colon_rpt.pdf

    You may also want to read the following journal article to check if they did, in fact, do a good, complete colonoscopy:

    Colonoscopy: Quality Indicators
    http://www.nature.com/ctg/journal/v6/n2/pdf/ctg20155a.pdf

  • For procedures available for removing polyps and masses in the colon, the technical medical details are given here:

    Polypectomy and Local Resections of the Colorectum -- 89 pages
    https://www.rcpa.edu.au/getattachment/2663804e-2810-4376-98cf-d2add98e5425/Protocol-Polypectomy-local-resections-CR.aspx

    From my point of view, the first order of business is for you to obtain as much solid information as you can about what was discovered during your examination (i.e., what facts were established, and what were the interpretations?). You also need to know what your current doctors said about the possible next steps that could be taken (i.e., procedures that could be used to deal with this "mass", such as a polypectomy procedure, or a colon resection procedure, a colectomy procedure, or whatever). This information, as a whole, constitutes the "1st Opinion" in your case, and this information will be needed by the person you select to do a "2nd Opinion".

    When you show up for your 2nd opinion appointment, the "2nd Opinion" doctor will want to know all of these facts before starting to speculate on what the situation is. In other words, they like to use the "1st Opinion (facts+interpretations)" as a reference point for their own subsequent analysis.

    Therefore, in my opinion, it is up to you to make yourself as well-informed as you can before you request a second opinion.

dallasdog
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Joined: Sun Mar 18, 2018 9:18 am

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby dallasdog » Mon Mar 19, 2018 8:07 am

Thank you all for your input. I spoke with the colorectal surgeon who was consulted on this. He said a CT is not necessary until after they remove the mass/tumor and biopsy it. (This may be something that insurance is unwilling to pay for at this point?)
He also indicated that the Gastroentologist is the best person to "snare" (the word he used) the cauliflower stalk polyp and remove it. I tried to get an idea of risks and whether the gi would be able to deal with any issues/problem should they occur during the surgery but am not sure it was clear to me. Either way, he said that the GI should do the surgery, not him (the surgeon).

dallasdog
Posts: 15
Joined: Sun Mar 18, 2018 9:18 am

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby dallasdog » Mon Mar 19, 2018 11:40 am

Utwo wrote:Skills of a particular doctor with colonoscope are much more important than colorectal surgeon certification.
Depending on your histology report after this colonoscopy/polypectomy you may not even need a real surgery.
Just keep your finders crossed.


You mean depending on the histology report that I get after it is totally removed and biopsied?

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chrissyrice
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Location: Atlanta, Georgia

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby chrissyrice » Mon Mar 19, 2018 6:07 pm

I disagree on the need for a CT Scan first and get a second opinion.

Had I done what your CRC surgeon suggested... never would have seen the lymph nodes that already had cancer and the stalk had grew through the colon already.

Since you are so close to Duke I really would go there for a second opinion.

Good Luck,
Chrissy
Dx 10-31-09 Surgery 12-1-09 Sigmoid Colon Stage IIIb; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU & Leucovorin;12-16-2010 PET/CT Scan Cancer Free;7-05-2012 CT Scan NED 2 years;10-13-2013 NED 3 yrs; 08-01-2014 NED 4 yrs; 06-30-2015 Stage 4 iliac lymph node(s) 08-11-2015 Surgery 3 cm tumor and iliac artery graft done. Positive margins in the abdominal aorta, No chemo. 03-16-2016 CT Scan Stable,06-16-2016 CT Scan Stable,09-21-2016 CT Scan Stable,12-2016 Stable,03-31-17 Stable,
Recurrence 6-30-17

Lee
Posts: 5534
Joined: Sun Apr 16, 2006 4:09 pm

Re: cauliflower stalk/ mushroom mass, 5cm: How to proceed?

Postby Lee » Mon Mar 19, 2018 6:18 pm

chrissyrice wrote:Since you are so close to Duke I really would go there for a second opinion.
Good Luck,
Chrissy


I agree! Get that 2nd opinion at Duke. This is your life and "IF" it turns out to be cancer, you really want to do everything NOW vs fighting a bigger problem down the road.

Many of us have gotten a 2nd opinion, sometimes even a 3rd

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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