Just diagnosed at 43

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Just diagnosed at 43

Postby Need2talk » Mon Oct 03, 2016 11:44 am

Hi I was just told on Friday that I have a 1 inch pedunculated polyp with agreessive cancer that was removed from my colon. I am super scared. I just joined this group and am looking for any insight and advice. I already am set up for a ct scan to see if it spread. Super nervous

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Re: Just diagnosed at 43

Postby rp1954 » Mon Oct 03, 2016 12:40 pm

Please see my posts on extra blood tests and what we did from day one to try to get curative surgery, particularly for the most common form of easily targetable but deadly biology.

Here's one summary with important links on our actions, initial reading, and priorities, for what is the highly fatal kind of colon cancer. Today, so early in the game, you have a lot of possibilities. These steps enabled us to sort them and beat the standard odds, greatly, more reliably, and cheaper.

One of our decisive advantages has been to take a few extra steps near day one, despite conventional care.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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Re: Just diagnosed at 43

Postby jhocno197 » Mon Oct 03, 2016 12:57 pm

Sorry you have to be here, but this is an excellent group. So much information & support.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Re: Just diagnosed at 43

Postby BeansMama » Mon Oct 03, 2016 1:10 pm

I'm sorry you have had to find your way to these boards, but glad you found us. The support and knowledge you will find here is amazing.

All of us understand the fear and anxiety you experience when you are first diagnosed and don't have all of the information. It seems like it takes forever to get all of the tests done. Usually once those are complete everything else moves rather quickly.

One bit of advice I will give you is stay away from google and don't put too much worry into the statistics. They usually include people that have other underlying conditions or people that for whatever reason do not seek treatment. Because of that in my opinion the statistics are not completely accurate. I believe that you make your own statistics, anything anyone else tells you is just a number. I also believe that maintaining a positive attitude makes a big difference.

I had a 9 cm tumor in my sigmoid colon that unfortunately spread to my liver. I don't have a ton of knowledge when it comes to polyps, hopefully someone here with more knowledge will respond to your post and help you in that area.

Have you gotten a printout of your biopsy results? If not ask your doctor for a copy, often there is additional information in the report that the doctors don't mention.

I also maintain a binder with all of the information on my surgeries, scans, lab work, etc. It helps to have your own copy. It has come in handy for me a few times.

I will add you to my prayer list, praying there is no spread.
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

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Re: Just diagnosed at 43

Postby DarknessEmbraced » Mon Oct 03, 2016 2:58 pm

I'm sorry for the reason you are here but glad you found this informative and supportive board!*hugs* It's good that you have your ct scan set up. I hope you don't have to wait long to get it done.*hugs* It's very hard to wait to find out test results. The more information you have the better it will be. Please keep us updated.*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! :)

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Re: Just diagnosed at 43

Postby mypinkheaven » Mon Oct 03, 2016 2:59 pm

Need2talk wrote:Hi I was just told on Friday that I have a 1 inch pedunculated polyp with agreessive cancer that was removed from my colon. I am super scared. I just joined this group and am looking for any insight and advice. I already am set up for a ct scan to see if it spread. Super nervous

I think the most important thing is to ask if the margins were clear - were there cancer cells in the stalk of the polyp? If there were, I'm sure the GI doc would have spoken to you about a colon resection, which you didn't mention. I hope that's the case that the margins were clear. And if it is, the doc is being very cautious by having a CT scan and that's a good thing.

If everything is clear, you'll probably need to have colonoscopies more frequently.

Wishing you the best! 8)
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

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Re: Just diagnosed at 43

Postby Need2talk » Mon Oct 03, 2016 5:25 pm

Thanks for all the kind words. There were still margins where she burned the polyp and stalk and then she went back in and removed more pieces of the stalk. This is where I don't understand. It's those pieces got caught in the suction area? So we don't know if she ever hit clear margins. I have an appointment at Sloan tomorrow. Cat scan today and slides being overnighted to Sloan. I just have this back pain that scares me that something has spread. Thanks again

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Re: Just diagnosed at 43

Postby HopeForJesse » Wed Oct 05, 2016 6:39 am

You are in excellent hand at Sloan. Hang in there - search this forum along the way and take a deep breath. Let Us know how things go. Big prayers for you.
DH DX 01/16 49 YO inop RC stage IV liver mets
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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Re: Just diagnosed at 43

Postby mike1965 » Thu Oct 06, 2016 10:53 pm

Praying all goes well.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

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