Newbie trying to get up to speed...

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68r5cwd6me
Posts: 4
Joined: Mon Jul 08, 2019 8:36 pm

Newbie trying to get up to speed...

Postby 68r5cwd6me » Mon Jul 08, 2019 8:44 pm

Background:
Went to 1st ever colonoscopy 3 wks ago due simply to age (50) without family history or other predispositions. Was held back by "doctor wants to speak to you" at the end of procedure and was shocked to find a despondence doctor stating "A large mass was found. Could be cancerous. Surface biopsies done. Need to follow up wit CT and Surgeon". Colonoscopy note included "Likely Malignant...Malignant appearing tumor" (turned out it referenced only ONE polypoid that was "about 10cm". CT scan confirmed "suspicious carcinoma at least 6cm". Biopsy states "high grade dysplasia...MAY represent underlying invasive carcinoma". Unable to speak to Out of Office doctor other than was told "Colon Cancer. Need to follow up with surgeon" by "on-duty Dr" in the office. When asked "if High Grade Dysplasia equals colon cancer should I also schedule Oncologist?" Was then told "Don't know yet"

Next Steps:
Surgeon visit was a bit more informative with a communicative surgeon and a wk of anxious, sleepless Googling. In light of the the size of the tumor, partial colectomy is the weapon of choice. Was able to carry a semi-intelligent conversation with the surgeon about the otherwise clean CT scan, clean blood work, lack of symptoms other than BM changes in hindsight due to "blockage"(?) and, most importantly, insufficient info to Stage until biopsy of extracted tumor is done. Surgeon in passing actually mentioned "it could just be a large polyp" which surprised me a bit in light on the "colon cancer" verbiage used by the previous doctor's office. No, I don't have false hope in light of the 2 tangible evidence - size and HG Dysplasia ruling from pathologist (see below)

Sources of confusion:
1 Tumor Size: certain clinical studies linked size to potential invasiveness while even threads on this forum show size might not have an absolute correlation. I initially thought the T in TNM purely relates to size, but apparently it's more a combination (and correlation?) between size and invasiveness. Since the "large mass" comment from the GI along with the despondent/disconcerting demeanor was the initial massive anxiety trigger, (i actually had to asked thru the silence "Dr, you seem very concern..."), how relevant is this most tangible of evidence to the potential invasiveness? Other factors: "tubular instead of villous", "polypoid vs non-polypoid", symptons (lack of and recency)...

2 Still confused with the wording being used - "colon cancer", "malignant neoplasm", while a complete histology and pathology of the actual tumor is yet to occur. Again, no false hope in light of the size of the growth and the HG dyplasia surface biopsy, but... When mentioned about this confusion, the "on-duty" doctor simply stated it's just semantic. I'm not trying to avoid the C or M word, but the only evidence that caused a change from the colonoscopy's report of "Likely Malignant" "Malignant Appearing" to "colon cancer" "Malignant neoplasm" is the HG dyplasia surface biopsy. Perhaps it IS just semantic I am confused about and the timing of the Oncologist.

3. The partial colectomy (laparocopic sigmoid resection) is the biggest, and only, surgery I've ever had (never even been in a hospital). What are the expected side effects and precautionary tales of the operation?

Thank you in advance for your assistance. Perhaps it will help me spin out of this spiral of confusion.

AmyG
Posts: 185
Joined: Tue Dec 25, 2018 8:08 pm

Re: Newbie trying to get up to speed...

Postby AmyG » Mon Jul 08, 2019 9:45 pm

Hi!

The only thing I can help you with is the laparoscopy on your sigmoid.

I had mine done while I was 11 weeks pregnant with baby #8. I had no pain relief other than tylenol after, and was up walking the halls a few hours after recovery. Chew gum, that helps wake up your bowels. I was pretty uncomfortable but it wasn't intolerable at all. You'll have access to all the after party pills, so you should be fine as far as that goes.

I think I was in the hospital a total of 3 days and have had zero issues after!

I hope that helps you a little.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection next step!

User avatar
Maggie Nell
Posts: 1117
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Newbie trying to get up to speed...

Postby Maggie Nell » Tue Jul 09, 2019 2:00 pm

68r5cwd6me wrote:Background:

Went to 1st ever colonoscopy 3 wks ago due simply to age (50) without family history or other predispositions. Was held back by "doctor wants to speak to you" at the end of procedure and was shocked to find a despondence doctor stating "A large mass was found. Could be cancerous. Surface biopsies done. Need to follow up wit CT and Surgeon". Colonoscopy note included "Likely Malignant...Malignant appearing tumor" (turned out it referenced only ONE polypoid that was "about 10cm". CT scan confirmed "suspicious carcinoma at least 6cm".

Biopsy states "high grade dysplasia...MAY represent underlying invasive carcinoma". Unable to speak to Out of Office doctor other than was told "Colon Cancer. Need to follow up with surgeon" by "on-duty Dr" in the office. When asked "if High Grade Dysplasia equals colon cancer should I also schedule Oncologist?" Was then told "Don't know yet"

Sources of confusion:


Cutting to the chase, the first source of confusion here is the despondence of the doctor. Not all doctors have their shit strapped down
and you totally need one who is emotionally competent and able to remain coherent and doesn't fall down the rabbit hole. Some just fail
when it comes to being the bearer of bad news and a drama becomes manufactured that is not helpful.

For over 10 years I worked in histopathology laboratories as admin support, typing up these colonic biopsy reports until my eyes crossed.
(never thinking I'd be on the business end of one either). Worked in small regional labs so on slow days the histopathology lab scientist
and pathologist would teach me stuff; so thems my creds and why I've swung by your thread.

High-grade dysplasia is a histological finding in a pathology report. The surface biopsies didn't go deep enough into the mass. These biopsies
are actually quite small, no bigger than a match-head. There is a specific sampling protocol that is followed. It is not unusual for samples to
be too small, for the sample to disintegrate in the Tissue-Tek machine. Every GI has their own technique and some 'snip' too small.

The samples that were biopsied aren't conclusive enough for the wording "malignant carcinoma-in-situ". High-grade dysplasia is on the border. It's
not just semantics : the pathologist is going by the book and from what was seen under the microscope. Likely that your tissue samples were
studied by other pathologists if the service is in a hospital where there are several histo-pathologists on staff.

Still confused with the wording being used - "colon cancer", "malignant neoplasm", while a complete histology and pathology of the actual tumor is yet to occur.


When the complete histopathology has been signed off on (get a copy of that and start up a file), and the FACTS are to hand, everything will become
much much clearer. For your sake, I hope it is 'just a polyp' and some are more nastier than others. In any case, the mass and part of your sigmoid
is going to be sitting in a tub of formalin and stored in a dark room for the next few years. Whatever it turns out to be; it will no longer be in your
body.

When is your surgery scheduled?

The partial colectomy (laparocopic sigmoid resection) is the biggest, and only, surgery I've ever had (never even been in a hospital).
What are the expected side effects and precautionary tales of the operation?


Never been in hospital before, eh? The food is often much better than the mythology would have you believe, however you'll be on a special
diet following major abdominal surgery and there'll be a fascination with your bowel movements just like when you where a small child and
potty training!

What you want the histopathology report to say, following that resection, is "clear margins" and nothing in the lymph nodes. Once the surgeon has
the pathology report in hand then everyone will be on the same page and there'll be less confusion. YOUR job will be to take care of yourself and
befriend your new body and get familiar with how everything works with that piece missing. It's a whole new ballgame.

Let us know where you are in the world so that anyone who is local can offer you specific information with medical resources.
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
July 2019 : pending liver U/S, colonoscopy
rut roh

User avatar
LPL
Posts: 649
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Newbie trying to get up to speed...

Postby LPL » Tue Jul 09, 2019 3:20 pm

Hi ‘Newbie’

When we meet the surgeon after hubby’s emergency surgery due to blockage - I asked “when will we know if it is benign or not?” He said “it is cancer.. “ At that time no biopsy had been made. Later when the 1st biopsy came back it was negative but the colonoscopy doctor didn’t believe that so he scheduled another one - that one confirmed cancer.
You wrote:
“Colonoscopy note included "Likely Malignant...Malignant appearing tumor"
“Surgeon in passing actually mentioned "it could just be a large polyp" which surprised me a bit in light on the "colon cancer" verbiage used by the previous doctor's office.”

I think that the doctors doing colonoscopies, and the surgeons operating, develop an eye for how malignant tumors look.
BUT they can be wrong! So the only way to know for sure is the pathology.

Best of Luck to you and please stay and let us know what happens.
If it is cancer you will get a lot of support and advice here going forward.
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

68r5cwd6me
Posts: 4
Joined: Mon Jul 08, 2019 8:36 pm

Re: Newbie trying to get up to speed...

Postby 68r5cwd6me » Tue Jul 09, 2019 4:26 pm

Maggie, thank you for the detailed response.

I am in New York City and surgery is scheduled in 10 days.

I was taken aback with initial discussion with "despondence" Dr right after the colonoscopy. That started a steep spiral downward. I wasn't so much looking for reassurance and comfort, but having walked into a "scheduled due to age only" colonoscopy, I was unprepared and didn't even know what questions to asked when he stated "could be cancerous" - figured it was routine.

With 2 weeks of endless googling and research, I'm slightly better versed and thus was perplexed with the nomenclature of Colon Cancer coming from a High Grade Dyplasia pathology report. Again no false hope in light of the unavoidable and most tangible evidence of "size". I even asked the surgeon's nurse (without being a wise-ass) - "if I'm asked to filled out a medical form whether I've ever had Colon Cancer, how should I answer at this very moment?"

As LPL's reply indicates, I relied on the GI's experience when he mentioned "that size is usually cancerous". That was before the HGD label and just that one dimension (size) was discussed in our brief chat - the tubular (vs villous), polypoid (vs nonpolypoid), shape, location...etc were not discussed. Size was the only aspect mentioned. The much more communicative surgeon was more academic in laying out the removal-histology-pathology-staging sequence and threw in an in-passing "it could just be a large polyp" kicker.

Jannine
Posts: 153
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Newbie trying to get up to speed...

Postby Jannine » Tue Jul 09, 2019 5:52 pm

I also had never been in the hospital when my colon cancer was discovered at 48. I went home 2 days after surgery but might have gone home sooner than that if they'd gotten me a bed and gotten the catheter out sooner. (My surgery was 2 days after my colonoscopy and I was in the hospital the whole time due to a partial blockage.) I had 5 staples in my belly in the largest laparoscopic incision, and used my IV opiods for maybe 6-12 hours after surgery, but not heavily; they remarked on how little I had used. I had little pain after that and didn't even use over the counter painkillers once I went home. I had been on a liquid diet for a week before my surgery, so the first solid meal I got in the hospital was heavenly. (Plus it was indeed pretty tasty, as Maggie Nell indicated!)

The main thing when that's over is to take care of the wound and let things heal. Get up and walking as soon as you can. If the pathology shows it is malignant they aren't likely to start up any treatment until 4 weeks after surgery, to give you time to heal. I went for a walk the day after getting home and only made it half a block, very slowly. By a week later I was moving a lot more comfortably and confidently.

I was warned that a hysterectomy might be required if my uterus was affected, and that a temporary stoma might be necessary as well. They wouldn't know until they got in there. Fortunately neither was required. I read up about stomas here beforehand, and decided that if others could handle it, I could, too. That helped my mindset a lot.

Good luck, and sorry you're dealing with this. Keep us posted!
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

AmyG
Posts: 185
Joined: Tue Dec 25, 2018 8:08 pm

Re: Newbie trying to get up to speed...

Postby AmyG » Tue Jul 09, 2019 6:19 pm

LPL wrote:Hi ‘Newbie’

When we meet the surgeon after hubby’s emergency surgery due to blockage - I asked “when will we know if it is benign or not?” He said “it is cancer.. “


I was awake, no meds during my colonoscopy and when we saw my tumor (which was almost completely obstructing my sigmoid) I asked my doctor if there was any way it wasn't cancer. He patted my thigh and told me he was sorry. He said they'd wait for the pathology report but in 30 years he knew cancer when he saw it.

I honestly wasn't surprised. Called my husband "Hey babe, guess who has cancer!" Then called my mother in law "Hey, so fun news, I've got cancer!"

Everyone appreciated my sense of humor. :lol:

It's coming up on a year since my initial diagnosis and I'm feeling pretty good about things. I've got a healthy baby that was never exposed to chemo, don't have a ton of hair, eyebrows or eyelashes but it's just hair, it will grow back. Everything seems to be pointing at having a fantastic response to the drugs and liver resection is upcoming.

Life is good.

You're going to be okay.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection next step!

Jacques
Posts: 414
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Getting ready for surgery

Postby Jacques » Wed Jul 10, 2019 12:31 am

If you are going to have surgery in 10 days, there are a few things you could do now in preparation.

1. First, you could check the credentials of the surgeon assigned to you. He/she should be a board certified colorectal surgeon with lots of experience with laparoscopic surgeries.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280

2. You can check the U.S. News & World Report national ranking of your hospital in the area of colorectal surgery:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58758&p=463871#p463871

3. You can read some articles on how to prepare for surgery:
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59666&p=474389#p474389

4. You can download a copy of a colon cancer pathology reporting guideline so that you have a detailed reference document at hand when your surgery pathology report comes in.
https://www.mycoloncancercoach.org/en-US/Colon-Cancer-101/Understanding-Pathology-Report

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=51436&p=399172#p399172

5. You can make sure that they do a baseline CEA tumor marker blood test before your surgery takes place.

6. You can make sure that they will be testing the microsatelite instability (MSI) status of your removed polyp/tumor.

7. You can create a Signature in your profile so that people here can know the essentials of your case -- for example, where your polyp/tumor is located, what type and grade your polyp/tumor is, etc.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

Best wishes for a successful surgery and trouble-free recovery!
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
End of six-year follow-up period: 7/2019
7 years NED
7 years LARS syndrome + peripheral neuropathy
----
Info links:
List of forum features
How to select a surgeon

MissMolly's insightful posts

User avatar
LPL
Posts: 649
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Newbie trying to get up to speed...

Postby LPL » Wed Jul 10, 2019 4:11 am

Jacques,
So nice to see posts from you, always sharing good info!
Congratulation to 7years NED :)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

68r5cwd6me
Posts: 4
Joined: Mon Jul 08, 2019 8:36 pm

Re: Getting ready for surgery

Postby 68r5cwd6me » Wed Jul 10, 2019 8:35 pm

Jacques

Thank you for the plethora of info. Have reviewed most of them.

I did have a chance to check the credentials of the surgeon b4 the appt. Well respected and well reviewed. He was recommended/referred by the GI (the despondent Dr) who added he referred his own family members to the same surgeon. The hospital, on the other hand, is not highly ranked in Gastro Surgeries.

Will be picking up the pre-clearance results, including CEA, Chest CT, by the end of the wk (had clear chest Xray, MRI, and abdominal CT done prior). Will study up on the pathology nomenclature by surgery time inc. the MSI (not standard?), KRAS, and other indicators that will help moving forward. As suggested, will build that signature once more data comes in, hopefully that will help others as a anecdotal comparative and progression timeline.

Jacques
Posts: 414
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Newbie trying to get up to speed...

Postby Jacques » Thu Jul 11, 2019 7:46 am

DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
End of six-year follow-up period: 7/2019
7 years NED
7 years LARS syndrome + peripheral neuropathy
----
Info links:
List of forum features
How to select a surgeon

MissMolly's insightful posts

68r5cwd6me
Posts: 4
Joined: Mon Jul 08, 2019 8:36 pm

Re: Newbie trying to get up to speed...

Postby 68r5cwd6me » Thu Jul 11, 2019 11:45 am

Pre-surgery blood test came back and the CEA is 11. I have read about both false-positive and false-negative and "not a singular indicator of cancer" about CEA but still ignorantly surprised it didn't "pass". Now googling the living daylight out of CEA level (noob!) to see what might be other triggers for elevation. Had all normal CBC.

CA 19-9 was much more cooperative at 6.

Haven't heard any change of plans from surgeon regarding bloodwork. Assuming that's simply setting the baseline (b4 vs after) and we shall proceed as planned. Read some discussion about "chemo to shrink tumor before resection". That was never remotely discussed in my case. I assume the "insufficient info" from the High Grade Dysplasia surface biopsy and the relative size (albeit "large") rendered that option unnecessary?

Jannine
Posts: 153
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Newbie trying to get up to speed...

Postby Jannine » Thu Jul 11, 2019 7:14 pm

Chemo or radiation to shrink tumors is generally only done when the tumor is close to sensitive areas that the surgeon does not want to risk getting into if at all possible. It's common with rectal cancer and when a met is too close to an artery or other important structure. It seems to be much less frequent with primary tumors in colon cancer, since they can generally just cut out the bad bits of the colon and sew us back together.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8


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