New & Scared - Any Guidance Appreciated

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Questioning
Posts: 2
Joined: Wed Dec 22, 2021 11:50 am

New & Scared - Any Guidance Appreciated

Postby Questioning » Wed Dec 22, 2021 11:57 am

48 YO Male, Family history of ovarian cancer

I had a colonoscopy two weeks ago. I got the results today and am a bit confused. Gastro doc messaged "precancerous lessons but not cancerous" and instructed that I just come back in six months for a flexible sigmoidoscopy. Out of four poylps, the one I am concerned about was 15mm and described as "high grade dysplasia". Write-up said:

Tubular ademona with focal high-grade dysplasia in sigmoid colon. High grade features seen in stroma of the polyp head. Associated desmoplastic reaction, which can be associated with submucosal invasion. "Definitive invasion is not demonstrated by the examined sections, however, invasion cannot be excluded."

The microscopic description is:

The mucosa shows an increased number of glands with glandular crowding and much depletion. The glands are lined by enlarged, hyperchromatic cells showing pseudostratification. These features are consistent with the usual low-grade dysplasia of tubular adenoma. Focally there are features of high-grade dysplasia. Glands with high-grade features are seen in stroma of the polyp head. There appears to be an associated desmoplastic reaction, which can be associated with submucosal invasion; however, definitive invasion is not demonstrated by the examined sections.

It looks to me like the polyp is mostly low-grade dysplasia but with a section of high grade? Does anyone know what a desmoplastic reaction would be in this context? A submucosal invasion sounds like cancer getting into the surrounding tissue, no? Does the six-month follow-up sound appropriate or should I be more aggressive? I see all these posts about resections and surgery and fear that my doctor is being too cavalier. It doesn't help that I was contacting the office and doctor for results, was told that they weren't in, and now see that they were "reported" four days before I received them.

Any help so appreciated as the holidays plus this = extreme stress.

zephyr
Posts: 325
Joined: Thu Aug 18, 2016 7:31 am

Re: New & Scared - Any Guidance Appreciated

Postby zephyr » Wed Dec 22, 2021 7:36 pm

I was in similar circumstances 10 years ago. Based on that experience, my advice is: (1) don't panic, you don't need to make a decision today so chill and enjoy the holidays; and (2) make an appointment with a colorectal surgeon and let him/her review all the records from the colonoscopy and make a recommendation. Then come back here and check in. There are lots of very knowledgable people here to help you sort it all out.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 F/U colonoscopies, all clear
Jun-2016 CRC during followup colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Dec-2020 Progression, considering all options
Mar-2021 Forfiri/Avastin

prayingforccr
Posts: 213
Joined: Sun Jun 28, 2020 4:44 pm

Re: New & Scared - Any Guidance Appreciated

Postby prayingforccr » Wed Dec 22, 2021 8:12 pm

zephyr wrote:I was in similar circumstances 10 years ago. Based on that experience, my advice is: (1) don't panic, you don't need to make a decision today so chill and enjoy the holidays; and (2) make an appointment with a colorectal surgeon and let him/her review all the records from the colonoscopy and make a recommendation. Then come back here and check in. There are lots of very knowledgable people here to help you sort it all out.


Amen.

Hang in there.

Gather your thoughts/emotions.

Research your options.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 Will begin immunotherapy/sbrt at weill cornell and nyu/langone in march

roadrunner
Posts: 204
Joined: Sun Jan 12, 2020 8:46 pm

Re: New & Scared - Any Guidance Appreciated

Postby roadrunner » Thu Dec 23, 2021 1:12 am

This seems pretty complex and a bit uncertain. It sounds like your GI doctor removed the polyp. Is that right, or did they just do a biopsy? They definitely didn’t find cancer, and that’s good. I would want to know more before waiting six months. The obvious questions include: What are the odds that these findings indicate cancer? If it is cancer, what is the best approach? Is there any value in MRI? Biopsy of the scar?

I agree with Zephyr that this is not a reason to freak out (though I’m sure as someone who doesn’t have cancer you are quite anxious), but I’d try to get answers to those questions. And you need to get someone who does this stuff—a board certified colorectal surgeon, preferably at a major cancer center—again, just for peace of mind, not because this is so worrisome. Keep in mind you can call one if you don’t have that access and get a consult. You have time to do that, for certain. But if it were me, I’d get clarification before waiting six months. Might end up in the same place, but at least you’ll have peace of mind.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 to remove sub-pleural met 7mm. Considering SBRT for remaining nodule.

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New & Scared - Any Guidance Appreciated

Postby JJH » Thu Dec 23, 2021 7:43 am

Questioning wrote:New & Scared - Any Guidance Appreciated...Any help so appreciated as the holidays plus this = extreme stress...

As others have said already, your situation has not been diagnosed as cancer right now, so, for now, you should try to focus on having an enjoyable time over the holidays. There is no point in allowing the recent findings to spoil the holiday season.

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However, after the first of the year it would probably be a good idea to have a closer look at your situation and to take some action and to spend some time getting all of your relevant facts together.

After the first of the year, what you could do that would help is:

1. Post more messages here on the same thread that you just started. This is so that you will have a total of 5 to 10 posts here, which will allow you to be promoted to Regular Member status so that you will not have to have all of your new posts delayed until they have been approved by forum moderators.

2. Give more details about your situation. For example, why did you have a colonoscopy? Was it because of concerning symptoms you had, or because you had a previous positive stool test that triggered a requirement to have a colonoscopy? Or was it because you had a letter from your doctor recommending that you have a colonoscopy at this time? Or for some other reason?

3.Give more details on the polyps that were found. What type were they -- i.e., flat polyps, or pedunculated polyps? Were all of them located in the same part of the colon, if so, where, exactly? And what was done with the polyps that they found? Did they remove them? If so, by what means?

4. Give any details you might have about family members who have had a history of colon polyps.

5. Give information about the size of your local hospital / clinic and whether or not they have a special department for cancer/oncology.

6. Give information about how close you are to a major cancer center, i.e., one listed among the NCI comprehensive cancer centers, or one listed among the top 10 cancer centers nationwide, etc.

7. Read some of the threads on this forum about colonoscopy report interpretation and pathology report interpretation:

8. Read about the standards for post-polypectomy follow-up examinations


NOTE: The tasks mentioned above are for after the first of the year, not for now during the holiday season.

Take care, and try to enjoy the holidays.
Last edited by JJH on Fri Dec 24, 2021 4:50 am, edited 2 times in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Questioning
Posts: 2
Joined: Wed Dec 22, 2021 11:50 am

Re: New & Scared - Any Guidance Appreciated

Postby Questioning » Thu Dec 23, 2021 4:05 pm

Thanks to everyone for your sound advice. After a day to process and think about it, I feel a lot better and a bit less confused.

To clear things up, yes, the GI doctor did remove the polyp but since it was sessile (difficult to remove it all in pieces), its size (15mm), and features, he wants to go back in 6 months and make sure it has all been removed. Also, my GI doctor is saying that this is not cancer and, in his words, "polyps were removed and the risk of cancer therefore gone."

Thanks too for people's guidance to get a consult. Not that it will be a major factor, but does insurance generally cover a consult with a doctor? Any recommendations of cancer centers I should look to for assistance? I'm in the Baltimore area so John Hopkins is an option if that makes sense.

I'll circle back once I know more but I really appreciate the calming words.


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