Scared Newbie

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caliann
Posts: 4
Joined: Thu Jan 12, 2017 11:40 am

Scared Newbie

Postby caliann » Mon Jan 16, 2017 12:25 am

I’m a newbie to this site and more than grateful I found it! I found the site a few days ago, after I had my first colonoscopy. What a great place…so many wonderful people going through so much, with so much compassion for others and strength beyond belief! Breaks my heart to see so many very young people dealing with such adversity!

I should have had my first colonoscopy long before now! My mom was diagnosed with stage four colon cancer at the age of 69 and died four months later. I guess my apprehension came from fear. I convinced myself I was fine. My weight was great, I was young and healthy for my age and not a chance anything could be wrong.

How ignorant was that?!? At 57, the results of my first colonoscopy are more than troubling. I awoke on the table to see my Doctor typing my results into a computer. Very groggy, I asked her what was going on and how my procedure went. She proceeded to tell me that she removed four polyps but was “concerned” about the “very large” 3.5 cm polyp she removed. She told me that there were a few more polyps she didn’t remove because she was in there for over 45 minutes and did not want to stay in there any longer. Her next words to me were … “You may have saved your life today.” She proceeded to tell me that the large polyp she removed had a “stock” on it and would call me as soon as she received the pathology report, even if it came in over the weekend.

It is now very late Sunday night (procedure was done Wed morning) and I have not heard a thing.

Unfortunately, or more importantly, currently we have a world of information at out fingertips. I have Google’d every possible scenario in my situation and everything I’ve read is troubling.

I am hoping (due to my doctor’s comment) that my colonoscopy may have saved my life and would love to hear from others on their first colonoscopy and findings like mine. Although I am trying to be very optimistic, I am extremely concerned about the “very large” polyp found.

Falling asleep tonight with a heavy heart and prayers to all going through such a very difficult time!

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Maggie Nell
Posts: 1150
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Scared Newbie

Postby Maggie Nell » Mon Jan 16, 2017 2:43 am

caliann wrote:
She told me that there were a few more polyps she didn’t remove because she was in there for over 45 minutes and did not want to stay in there any longer. Her next words to me were … “You may have saved your life today.” She proceeded to tell me that the large polyp she removed had a “stock” on it and would call me as soon as she received the pathology report, even if it came in over the weekend.



Sounds like that word was stalk, as in a pedunculated polyp.
Unless your doctor marked the pathology request as URGENT, your tissues would be
processed according to their place in the queue.

The good thing is that you've had your colonoscopy NOW and you're younger than your
mother had been and whatever comes down the pike, you have the people in this forum
to turn to for support.
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
Stage II CRC, no adjuvant chemo required.

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

Re: Scared Newbie

Postby BeansMama » Mon Jan 16, 2017 3:20 am

Welcome to the boards, sorry you had to find us but certainly glad you did. You will find a wealth of knowledge and support from the members here.

It sounds like if there was anything they probably got it early (I'm not a doctor so don't take my words as concrete).

Please, please, please stay away from Dr Google. I know it is hard but many of the things you will find are most likely outdated, and you will self diagnose with everything under the sun. The only thing it is going to do is make the wait harder.

We all know how hard it is to wait for results, but as Maggie Nell said, you are a hostage to the pathologists and you won't get the results until they get to your biopsies. After my first colonoscopy it took two weeks to get the confirmation I had a malignant tumor eventhough it smiled nicely for the camera (it was obstructing my colon).

My brother recently had a colonoscopy as a result of my illness and because I also tested positive for Lynch syndrome and he did as well. They found 5 precancerous polyps during his scope, all removed, no further treatment needed. He just needs to be monitored more closely going forward.

I will add you to my prayer list, praying your results come back negative for cancer.
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

Maelleous
Posts: 127
Joined: Tue Nov 01, 2016 8:13 am
Location: FL

Re: Scared Newbie

Postby Maelleous » Mon Jan 16, 2017 7:33 am

My dr told me almost immediately he suspected it was cancer. You likely caught it much earlier than I did, and while none of us can say for sure, if all you have to have a few extra polyps removed, consider yourself very lucky.

Also like others have said, stay off google, you will terrify yourself needlessly. I did the same.
M 35 yr
DX Rectal Cancer, 10/16 (symptoms Feb 2016)
Dx stage 2 - Surgery Oct 25 201 Loop ileo w/ j-pouch
Close margins within 1mm
9/38 lymph nodes involved on path / Stg IIIc,pT4, pN2 B, p.M0. MSS, K‐ras, NRAS, no mutation
Started Folfox - 3rd Treament, Dec 30th 2016 Cardiac Arrest - Lucky to be part of the 6% to survive!
S-ICD installed / Port Removed
Vaccine Clinical trial at UPMC - last shot June 2017
Reversal 8/1/17 - Praying this is it!
Still NED

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Scared Newbie

Postby Utwo » Mon Jan 16, 2017 2:16 pm

The fact that your doctor was able to remove this polyp during colonoscopy is a good sign.
Next, you need to wait for histology results.
I recommend starting worrying only if you have cancer diagnosis confirmed by histology.
Meanwhile relax and be happy.
Based on histology results you may need additional laparoscopic or open surgery.

Unlike other people, I believe that Google is beneficial.
For example, many people find "Colon Talk" using Google.

Feel free to continue using Google/Medline/PubMed/Medscape unless you can outsource this action to somebody else.
Do not trust everything you find on the Internet, especially if it was not published by a mainstream peer reviewed medical magazine.
Please learn how to identify mainstream peer reviewed magazines and read/understand their articles.
Last edited by Utwo on Mon Jan 16, 2017 7:17 pm, edited 1 time in total.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Scared Newbie

Postby DarknessEmbraced » Mon Jan 16, 2017 5:43 pm

Welcome to the board. I'm glad you had a colonoscopy. I hope you won't have to wait long for pathology results!*hugs* Sorry for the loss of your mother.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Scared Newbie

Postby fumaros » Mon Jan 16, 2017 5:45 pm

If they haven't called you yet, it is probably because they haven't found anything too concerning. I got a call from the gastroenteroligst the following day asking me to come in to discuss the results.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

caliann
Posts: 4
Joined: Thu Jan 12, 2017 11:40 am

Re: Scared Newbie

Postby caliann » Mon Jan 16, 2017 7:02 pm

Thank you all for your reply, advice and kind words!

Maggie Nell…my bad…typo…should have been stalk, not stock.

Doc told me she would have results within 48-72 hours but I am still waiting to hear from her. I called her office today and spoke with her nurse. She said the doctor was out today and should have received the pathology report Friday or Saturday. She said I should hear from Doc tomorrow afternoon, after her morning procedures. It’s the not knowing that has me anxious. I’ll let you know what I hear from doc.

Keeping you all in my thoughts and prayers!

michelle c
Posts: 1929
Joined: Wed Dec 02, 2009 3:58 am

Re: Scared Newbie

Postby michelle c » Tue Jan 17, 2017 12:16 am

Oh my goodness! She removed a 3.5cm "polyp" - that just seems too large to remove during a colonoscopy - but I'm not a doctor. My sigmoid tumor was about that size. My GI doctor knew immediately just by looking at it that mine was cancer so yours not knowing could be a good sign. I was referred to a colorectal surgeon to have it removed. It's hard waiting for results. Hang in there. Let us know how you go. Best wishes
May 25 2009 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
Jun 3 2009 LAR - Stage III 3/10 lymph nodes
Jul 6 - Dec 10 2009 - 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 2012 port removed & hernia repair

Need2talk
Posts: 32
Joined: Sun Oct 02, 2016 7:24 pm
Facebook Username: Janicejones

Re: Scared Newbie

Postby Need2talk » Wed Jan 18, 2017 9:33 pm

Hi. Any results yet?? Your case sounds like mine. I actually had a colonoscopy on a Saturday and found out the following Friday that I indeed had cancer on a pedunculated stalk. She was suspicious as soon as she removed it. It was also 3 cm and had to removed in sections. I remember waking up in the middle of it and her telling me! This was October. I had a colon resection on November 2 and had 8 inches of my colon removed and 13 lymph nodes. Ended up being stage 1 thankfully. The waiting sucks. The looking up sucks and I constantly was on this site looking for answers. The people here are amazing. You are in my thoughts. I will say as soon as I found my results I took everything to Sloan Kettering in New York. If something turns out positive, and you can, go to a cancer center. It made a huge difference in my case.

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Maggie Nell
Posts: 1150
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Scared Newbie

Postby Maggie Nell » Thu Jan 19, 2017 6:05 am

BeansMama wrote:
We all know how hard it is to wait for results, but as Maggie Nell said, you are a hostage to the pathologists


:? Where did I say that?
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
Stage II CRC, no adjuvant chemo required.

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

Re: Scared Newbie

Postby BeansMama » Thu Jan 19, 2017 3:46 pm

Maggie Nell wrote:
BeansMama wrote:
We all know how hard it is to wait for results, but as Maggie Nell said, you are a hostage to the pathologists


:? Where did I say that?


You didn't use exactly those words, in your statement unless it is marked urgent you have to wait until they get to it.

Just me restating in a different way - sorry if it bothered you :?
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

User avatar
horizon
Posts: 1668
Joined: Tue Apr 12, 2011 10:10 pm

Re: Scared Newbie

Postby horizon » Fri Jan 20, 2017 9:08 am

Dr Google is the worst. The worst. The things I read when I was first diagnosed terrified and upset me and almost all of it didn't end up applying to me.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?


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