Lynch?

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Dori W
Posts: 34
Joined: Mon Aug 25, 2014 2:30 pm
Facebook Username: Dori Woodhouse

Lynch?

Postby Dori W » Mon Nov 09, 2020 4:51 pm

I had stage 3c colon cancer in 2008 and I was a semi-frequent poster here. A few years after my diagnosis, I had genetic testing done and there was no sign of Lynch syndrome or any other known genetic abnormality.

Last week I was diagnosed with endometrial cancer and I just met with the gyn oncologist for the first time today. She said that testing was done on the tumor that showed Lynch syndrome, but then there was an addendum to the report saying they retested and there was no Lynch syndrome?! My doctor said that (especially given that I've had both colon and endometrial cancer) she is highly suspicious of the second, negative result. She referred me to a geneticist.

I'll be having surgery for this new cancer in the next couple of weeks (surgery is not scheduled yet), and I'll know my stage a week or two after that. The tumor is grade 1 (low grade), which is really good news and ups my odds for the cancer being early stage (but of course we won't know till we know).
Diagnosed stage 3C signet ring colon cancer in May, 2008
14 out of 18 positive lymph nodes
Final treatment in November, 2008
NED ever since
I used to have an account under "Dori," but I've lost access to it.
You can view my old posts here: search.php?author_id=1446&sr=posts

Koreysue
Posts: 197
Joined: Mon Apr 30, 2018 2:36 pm

Re: Lynch?

Postby Koreysue » Mon Nov 09, 2020 6:29 pm

Wow!
That is very strange. May i ask- how you discover the new type of cancer? I’ll be thinking of you as you navigate this, and hoping for a low stage as you said.
My family is full of cancer :cry: and I was supposedly lynch neg. but man i wonder sometimes.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6.1
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5 (happy to see a lower number)

Dori W
Posts: 34
Joined: Mon Aug 25, 2014 2:30 pm
Facebook Username: Dori Woodhouse

Re: Lynch?

Postby Dori W » Mon Nov 09, 2020 7:03 pm

I had some light bleeding on a couple of occasions. That's it.
Diagnosed stage 3C signet ring colon cancer in May, 2008
14 out of 18 positive lymph nodes
Final treatment in November, 2008
NED ever since
I used to have an account under "Dori," but I've lost access to it.
You can view my old posts here: search.php?author_id=1446&sr=posts

User avatar
henry123
Posts: 214
Joined: Sun Oct 08, 2017 3:25 am

Re: Lynch?

Postby henry123 » Tue Nov 10, 2020 9:46 am

Dori, best wishes for you. If there are multiple members in your family Who are suffering from various types of cancer especially cologne and endometrial then Lynch is a definite possibility.
Try to get the test done from reliable cancer centre or the bottle has these tests are really sensitive.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop


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