Family history of colon cancer and a polyp in mid 20s...follow up?

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Jj2020
Posts: 1
Joined: Mon Dec 28, 2020 12:20 am

Family history of colon cancer and a polyp in mid 20s...follow up?

Postby Jj2020 » Mon Dec 28, 2020 12:43 am

I have a complicated medical history due to a neural tube defect. When I was 24 I was having serious stomach pain that was incapacitating. Turned out to be too much ibuprofen trying to manage my pain but they did a colonoscopy due to family history. My dad’s dad died in his 60s of advanced colon cancer. He was a farmer when they first introduced a lot of the pesticides and there is some speculation that the unprotected exposure could have led to cancer. My dad’s mom died early from a heart attack as well.

My dad started getting screened at 40 and did have multiple polyps that were removed. For awhile he had to have frequent colonoscopies but they decreased that to every 10 years when they stopped finding polyps. As far as I know his were the regular adenomas. Neither my dad nor any of his 8 siblings has had colon cancer. I don’t know if the others started getting earlier screening like my dad or not. They are all in their 70s-80+ now.

The single polyp discovered when I was 24 was a smaller serrated sessile polyp without dysplasia in the ascending colon. The doc said my colon was extremely clean so I am pretty confident that it was just that one polyp. He didn’t give me much info besides saying that these polyps become cancer 50% of the time before age 40 (this does not track with the research I have read) but told me to come back in 5 years for another colonoscopy.

Well it’s been 6 years and in that time my physical health declined quite a bit. There was no way I could have handled another colonoscopy. As I’ve gotten things under control more I’ve started paying more attention to my general health and went in for an appointment with the doc to discuss if a colonoscopy was really needed. Long story short while I think this doc is competent (I had my surgery fully awake with nothing besides a .5mg Ativan for pre procedure anxiety so I witnessed the whole thing) he also refuses to take the time to actually talk. It feels like a conveyor belt where he is just signing up as many people as possible and not spending any time with you to actually talk about your specific case.

I don’t want to be the idiot who doesn’t do proper follow up and ends up with cancer. At the same time I have PTSD from some really horrid surgeries I was forced to undergo as a kid. It’s really, really bad. That’s why I had the colonoscopy awake, I can not handle being put to sleep. So having to go through this is a major deal that has a huge negative impact on my life mental health wise for a long time before and awhile after. I’ve been in therapy and it just has not helped so I deal with it the best I can. It’s also hard now physically because while I am more stable my baseline mobility and pain are much worse than they were at 24 and my tolerance for anything done to my body is lower.

All of this to say I would just like to know if I really do need colonoscopies every 5 years for life like this doc claims or if I could likely safely wait say 10 years between procedures. My life expectancy is normal and I would like to keep it that way but not unnecessarily worsen my mental health. I am getting a second opinion from another gastroenterologist but with Covid the timing is up in the air and we are known for having pretty bad medical providers in the area (I travel 3-6 hours for all of my care related to my disability).

If anyone has dealt with this or has good info that would be helpful or whether there might be reasonable alternatives to a colonoscopy.

KimT
Posts: 692
Joined: Sat Feb 20, 2010 8:53 pm

Re: Family history of colon cancer and a polyp in mid 20s...follow up?

Postby KimT » Mon Dec 28, 2020 5:33 pm

We are not doctors. We are colon cancer survivors or loved ones of survivors. We cannot give you advice one how often you should get colonoscopies. Follow the advice of your doctor or get a second opinion. Good luck.
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

boxhill
Posts: 662
Joined: Fri Apr 06, 2018 11:40 am

Re: Family history of colon cancer and a polyp in mid 20s...follow up?

Postby boxhill » Mon Dec 28, 2020 9:56 pm

There are several screening alternatives to colonoscopy. One type tests for blood in a fecal sample, the other tests for circulating cancer cells in the blood. In both cases colonoscopy is required as a followup **if** abnormalities are detected.

You could discuss these with your doctor as a means of stretching out the time between colonoscopies.

Best of luck.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

User avatar
Green Tea
Posts: 292
Joined: Mon Oct 24, 2016 10:48 am
Location: Nusa Tenggara

Re: Family history of colon cancer and a polyp in mid 20s...follow up?

Postby Green Tea » Tue Dec 29, 2020 1:53 am

boxhill wrote:There are several screening alternatives to colonoscopy. One type tests for blood in a fecal sample, the other tests for circulating cancer cells in the blood. In both cases colonoscopy is required as a followup **if** abnormalities are detected.

You could discuss these with your doctor as a means of stretching out the time between colonoscopies.

Best of luck.

Here is additional information on some of the screening alternatives that boxhill mentioned:

USPSTF Task Force recommended screening tests
https://www.uspreventiveservicestaskforce.org/uspstf/draft-recommendation/colorectal-cancer-screening3#tab1

The new ctDNA blood test
https://labtestsonline.org/tests/liquid-biopsy


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