Just can't let it go

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del5del
Posts: 7
Joined: Fri Mar 08, 2019 9:53 am

Just can't let it go

Postby del5del » Fri Mar 08, 2019 10:57 am

I just had my first colonoscopy at 50. To my surprise, doctor removed a 2 cm polyp from my ascending colon. After the procedure he told me he thought it was fine, but large, and would call with pathology results. Doctor called me a day later after I aggravated his office enough and said it came back as a benign tubulovillous adenoma, and I am to return in 2 years for another colonoscopy. I called medical records and got a copy of the final pathology report, hopefully to reassure me, but there's basically nothing to it...half a page, no real detail or description other than my info, doctor's info, Gross Description: the measurement of specimen, how it was received. Microscopic description says "A microscopic examination is performed and reflected in the diagnosis rendered." And the Final Diagnosis is "Colon - Ascending - Fragments of Tubulovillous adenoma D12.2" (which I found out is the code for benign neoplasm of ascending colon) and the date and time that the pathologist electronically signed out. The bottom of the page says page 1 of 1 and the date/time my doctor reviewed and signed the pathology report. I'm not trying to borrow trouble, but I thought it would give more detail such as the dysplasia details, etc. I just can't stop worrying about this. Why isn't this pathology report filled with details?

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Just can't let it go

Postby NHMike » Fri Mar 08, 2019 1:48 pm

It's possible that the entire report wasn't made available to you. I get path reports on my hospital portals but there was one time where the surgeon gave me a few photocopied pages of what was obviously the details of the pathology report - but those pages weren't available to me in the portal.

I know that the CEA tests get embargoed from the portal for at least two days. I've been in the office after getting the bloodwork done earlier, where the oncologist has the results but they don't show up in my portal for a few days. So you could ask your doctor to see if there are any additional details as you'd like to look through them.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 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; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 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) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

radnyc
Posts: 338
Joined: Tue Apr 06, 2010 6:32 pm

Re: Just can't let it go

Postby radnyc » Fri Mar 08, 2019 2:06 pm

Let it go
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

KimT
Posts: 647
Joined: Sat Feb 20, 2010 8:53 pm

Re: Just can't let it go

Postby KimT » Fri Mar 08, 2019 2:08 pm

You got good news. Every one of us who has been diagnosed with cancer would be very thankful to be in your shoes. I don’t know what else you expected but from what you are describing, that is an appropriate pathology report.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Just can't let it go

Postby betsydoglover » Fri Mar 08, 2019 2:14 pm

Good news - "just a polyp". Not much detail is needed unless it is cancer. Waiting 2 years for another scope is entirely appropriate - in fact I bet many GI's would put you on the 3-5 year program. Relax - this is something you really don't need to worry about.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

sadysue
Posts: 981
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Just can't let it go

Postby sadysue » Fri Mar 08, 2019 6:07 pm

What are you complaining about? You got a good report - no cancer. Wish I was so lucky!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

del5del
Posts: 7
Joined: Fri Mar 08, 2019 9:53 am

Re: Just can't let it go

Postby del5del » Fri Mar 08, 2019 7:43 pm

I don’t know, I’m sorry. I just feel uneasy...maybe from doing so much research online. I guess I’m afraid that because im only 50 and it was already 2 cm (and on the right side and tubulovillous and sessile) that there may be more to it and maybe he didn’t remove it all completely. And I thought pathology always says whether it’s mild, moderate, or severe dysplasia, which I thought was always present in this type of polyp. Maybe I just don’t understand.

weisssoccermom
Posts: 5919
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just can't let it go

Postby weisssoccermom » Fri Mar 08, 2019 8:52 pm

dysplasia means that there are abnormal cells there. Your pathology report didn't mention anything because there was NOTHING there to mention.
Polyps start as benign growths. Some turn cancerous, some never will.
In your case, the polyp that they found had NOT started the process (if it ever was going to....who knows??) of becoming cancerous.

Seriously, as others have said...LET IT GO!

Your doctor is doing the correct thing and telling you to return in TWO years. The fact that you had a polyp....even a benign one...does put you at greater risk for possibly having more. The COOL thing about getting scoped every two years is that in that timeframe, even IF another polyp arises, it likely won't have time to even turn precancerous!

Remember that polyps typically follow this pathway IF they are going to turn cancerous.

Benign
Precancerous (that's where the dysplasia comes in)
Cancerous


YOU DODGED A BULLET. Be thankful and go out and enjoy your life. Get your scopes when you are supposed to and LET IT GO already!
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

kandj
Posts: 224
Joined: Sun Sep 27, 2015 11:29 am

Re: Just can't let it go

Postby kandj » Sat Mar 09, 2019 1:35 am

del5del wrote:I don’t know, I’m sorry. I just feel uneasy...maybe from doing so much research online.



May I suggest you stop doing research? Several doctors (your Doc, the pathologist, etc) who have spent their life doing this and have done more real research than you, not just doctor google, are telling you that you had a benign polyp. You should thank your lucky stars, go have a glass of wine and celebrate not having cancer. Most of us would give our right arm to say that or say that about a loved one. You are borrowing trouble and you do not need to be.
wife to DH, dx 8/15 stage IV @36
Told unresectable liver Mets
Primary resection and HAI pump placed Dec 2015 at MSKCC, FUDR started Dec 2015
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
46 rounds of chemo 8/15-5/18
VATS on lung met 11/18 started xeloda

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Maggie Nell
Posts: 972
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Just can't let it go

Postby Maggie Nell » Sat Mar 09, 2019 6:22 am

del5del wrote:...... I just feel uneasy.... And I thought pathology always says whether it’s mild, moderate, or severe dysplasia, which
I thought was always present in this type of polyp. Maybe I just don’t understand.


From my own experience as a former medical secretary and histopathology transcriptionist, I can confirm that In the state of
Victoria Australia at least, the summary would indicate if dysplasia was mild, moderate or severe. Each pathologist has their own
vernacular and style, each pathology laboratory their own script and protocols with reporting. Clearly whoever did your pathology
report wasn't getting paid by the word! I encourage you to contact your doctor about this as it is a simple matter to request the slides
to be reviewed by another pathologist; even to be sent to another laboratory. You might have to pick up the tab on that though.

Tubulovillous adenomata do have a higher risk of becoming malignant so your concern is warranted. Do what you need for your own peace
of mind.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

DarknessEmbraced
Posts: 3250
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just can't let it go

Postby DarknessEmbraced » Sat Mar 09, 2019 10:23 am

I'm glad it was benign and was removed. :)
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

Basil
Posts: 255
Joined: Thu Mar 16, 2017 12:33 pm

Re: Just can't let it go

Postby Basil » Sat Mar 09, 2019 6:05 pm

Shoooot, I researched my adenocarcinoma like a maniac. At my one year colonoscopy. They removed a couple of polyps but otherwise said I was good to go. I didn’t follow up or ask any questions and haven’t given it a second thought.
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
1 year scans - clear

boxhill
Posts: 188
Joined: Fri Apr 06, 2018 11:40 am

Re: Just can't let it go

Postby boxhill » Sat Mar 09, 2019 6:54 pm

As a side note, be glad that they looked carefully enough to find a right side sessile polyp. That's a type that can be missed fairly often.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
0.5 cm sub-capsular liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28/18
7/9/18 CT no masses or enlarged nodes, 2mm indeterminate lung nodule
11/20/18 CT same, Lung nodule likely calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis, CT review shows progression of nodes on FOLFOX
12/31/18 Keytruda

Trying
Posts: 149
Joined: Sun May 13, 2018 10:11 pm

Re: Just can't let it go

Postby Trying » Sun Mar 10, 2019 10:00 am

Wish i was in your shoes. Im only 39 stage 4. We are all wishing for news as good as yours. Wishing you the best
Last edited by Trying on Sun Mar 10, 2019 10:09 am, edited 1 time in total.
38 yr old single mom of almost 2 yr old.
Colon cancer stage IV 10 liver mets and peri metApril 2018
Folfox as of June 2018
Down to 2 mets in liver dec 2018.

del5del
Posts: 7
Joined: Fri Mar 08, 2019 9:53 am

Re: Just can't let it go

Postby del5del » Sun Mar 10, 2019 1:29 pm

I really appreciate everyone’s responses. However, after looking at my medical records closer and doing a little more research, it doesn’t seem to be so black and white, I dont have a peace about this, and I’m not sure where to go from here. First of all, the removal was by a piecemeal technique using a hot snare. I keep reading that many times that turns out to not be a complete resection and there can easily be residual tissue. And the pathologist receives and is examining fragments. So I worry about the margins. Also, in researching the coding, it seems that unless the cancer is invasive, it’s going to be coded as “benign,” even high grade dysplasia and carcinoma insitu and that sometimes the pathologist will only indicate high grade dysplasia if the GI doctor specifically asks for that. This is a huge facility with locations in several states and they have their own pathology lab and I guess it’s all done lecteonically. Not sure if this means that the pathology reports aren’t as detailed. It just has “FINAL DIAGNOSIS: Ascending colon, fragments of tubulovillous adenoma.” And over to the side “D12.2”. It was 2.3 x 1.9 x 0.3 cm. And again, the microscopic description says “a microscopic exam is performed and reflected in the diagnosis rendered.” I called medical records and asked if there was more to the path report and she said no, that’s all. I don’t know if I can even make a follow up appointment with the doctor to discuss all this since the polyp found in screening colonoscopy is diagnosed as benign. Just had the colonoscopy then a phone call from doctor. And I dont know how I would go about getting a second opinion. Now I can’t stop crying and I don’t know how to get complete answers and can’t imagine feeling like this until followup in 2 years. It just seems questionable to me.


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