Lynch Syndrome and 12mm polyp

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sonya7118
Posts: 4
Joined: Wed Aug 30, 2017 10:03 am

Lynch Syndrome and 12mm polyp

Postby sonya7118 » Thu Aug 31, 2017 8:12 am

I'm a 46 year old woman with Lynch Syndrome. I had my first colonoscopy in 2015 and all was clear, had my second one 4 days ago and they found a 12mm sessile cecal polyp. They removed it for biopsy and waiting for results. I find it difficult to understand how a polyp can develop that fast unless it's cancerous.
I should mention the fact that I've been a nurse for 23 years and 8 of those as a hospices nurse, I'm very familiar to cancer and it's pathology and I know as a nurse a definitive answer lays in the pathology report. As a patient I want to prepare myself for the reality of what's to come. I've done my research but would like to hear what other people in my situation can advise. Thank You.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Lynch Syndrome and 12mm polyp

Postby Lee » Thu Aug 31, 2017 10:20 am

Hi and welcome,

I suspect because you have Lynch Syndrome, your body might be able to produce polyps faster than most people. Since you were scoped in 2015 with a clean bill of health, If this polyp does have cancer, I suspect it's a very early stage, O or possibly stage I. Possible surgery, butt probably no chemo. Your survivor would be in the 90+%. It's also possible it could be just a pre cancer polyp, and nothing else needs to be done.

Keep us posted and good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

sonya7118
Posts: 4
Joined: Wed Aug 30, 2017 10:03 am

Re: Lynch Syndrome and 12mm polyp

Postby sonya7118 » Thu Aug 31, 2017 11:24 am

Thank you for responding.
It's my nature to think 5 steps ahead, get all the info I may need in order to prepare. Being a nurse is a blessing and a curse, blessed to have the knowledge and cursed to have the knowledge as in being naive isn't a luxury.
I had a hysterectomy in 2015 for precancerous lesions, that's when I found out I had Lynch Syndrome, PMS2 and MLH1,MLH2,MSH6 Mutation with variant detected (I'm 1 of 7 that has this variant ever reported).

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Lynch Syndrome and 12mm polyp

Postby veckon » Thu Aug 31, 2017 11:27 am

One of the hallmarks of Lynch syndrome related CRC are fast growing polyps that skip most of the stages of polyposis and go nearly straight to cancer. I have been learning with the experts of Lynch at MSK. They advise yearly colonoscopies if you have Lynch for this very reason.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Lynch Syndrome and 12mm polyp

Postby veckon » Thu Aug 31, 2017 11:35 am

sonya7118 wrote:Thank you for responding.
It's my nature to think 5 steps ahead, get all the info I may need in order to prepare. Being a nurse is a blessing and a curse, blessed to have the knowledge and cursed to have the knowledge as in being naive isn't a luxury.
I had a hysterectomy in 2015 for precancerous lesions, that's when I found out I had Lynch Syndrome, PMS2 and MLH1,MLH2,MSH6 Mutation with variant detected (I'm 1 of 7 that has this variant ever reported).


Wow, you have mutations in PMS2, MLH1, MSH2, and MSH6? That's pretty incredible statistically. I think you should get in contact with Dr. Zsofia K Stadler (https://www.mskcc.org/cancer-care/docto ... ia-stadler), she would be very interested in talking to you.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

cmrl
Posts: 174
Joined: Mon Apr 21, 2014 8:39 pm

Re: Lynch Syndrome and 12mm polyp

Postby cmrl » Thu Aug 31, 2017 2:01 pm

I had a colonoscopy in june, which was 23 mo. after the previous one, and I have a 30 mm polyp which I'm still waiting to have removed. The Dr. Did ask if I had Lynch syndrome, but I was never tested. The biopsy was negative, so I'm hoping they will be able to remove it without surgery.
Good luck with your biopsy results.
Resection of splenic flexure 7/24/13
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Lynch Syndrome and 12mm polyp

Postby veckon » Thu Aug 31, 2017 3:43 pm

cmrl wrote:I had a colonoscopy in june, which was 23 mo. after the previous one, and I have a 30 mm polyp which I'm still waiting to have removed. The Dr. Did ask if I had Lynch syndrome, but I was never tested. The biopsy was negative, so I'm hoping they will be able to remove it without surgery.
Good luck with your biopsy results.


How old were you at time of diagnosis? You should probably still be tested, having Lynch is important when monitoring for recurrence. It also dramatically increases the risk for many other types of cancer. So knowing is an important part of long term preventative care.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Lynch Syndrome and 12mm polyp

Postby BeansMama » Fri Sep 01, 2017 7:26 am

I also have Lynch and yes, polyps can grow very fast. I had a second colonoscopy about 8 months after my primary tumor was removed - 10 months after the first colonoscopy that found the cancer because of other issues.

They found and removed 5 polyps during that colonoscopy, all were clear, no cancer. So yes as a lynchie they can form very quickly, but they are not always cancerous.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

sonya7118
Posts: 4
Joined: Wed Aug 30, 2017 10:03 am

Re: Lynch Syndrome and 12mm polyp

Postby sonya7118 » Sat Sep 02, 2017 7:26 pm

Thank you all.
I was diagnosis with Lynch Syndrome in 2015. I had several abnormal pap smears and endometriosis along with heavy bleeding, and my new gyno/oncologist recommended me to be tested. That's when he said I should have a hysterectomy (I was done having kids), glad I did too.
Well I did hear from the doctor and he told me I had a Sessile serrated andeoma and chronic/sever H.pylori. He said other then that repeat in a year, Yet I'm very uncomfortable about that whole sit back and wait to see what happens.

User avatar
JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: 5000th post

Postby JJH » Sat Sep 02, 2017 11:46 pm

On August 31st, Lee wrote:Hi and welcome,

I suspect because you have Lynch Syndrome, your body might be able to produce polyps faster than most people. Since you were scoped in 2015 with a clean bill of health, If this polyp does have cancer, I suspect it's a very early stage, O or possibly stage I. Possible surgery, butt probably no chemo. Your survivor would be in the 90+%. It's also possible it could be just a pre cancer polyp, and nothing else needs to be done.

Keep us posted and good luck,

Lee

Hi Lee, Just a note to say that the post above was your 5000th post on this Forum. Thank you for taking the time to greet so many newcomers and for helping others along the way.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●


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