29F. Just got a colonoscopy. They found something and I’m scared.

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Jacques
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Location: Occitanie

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby Jacques » Sat Jul 24, 2021 8:11 am

TiredandTroubled wrote:...I’m trying to gather everything I can think of, do you have any suggestions?

I'm sorry, but I don't have any direct experience with laparoscopic type surgeries, so I can only guess what might be needed in your case. My surgery was an open surgery with a temporary ileostomy, so I had a different set of challenges to deal with.

I would imagine that in your case you would probably need to stay on a low fiber, soft diet at the beginning and do whatever was necessary to avoid having constipation and hard stools passing through the area where the newly created anastomosis junction will be located -- but this is only a guess. I think you would get better feedback from members here who have actually gone through recovery from sigmoid colon laparoscopic surgery.

Good luck on your surgery day! It sounds like you have chosen an excellent surgeon.

====
Edit

Getting ready for surgery
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62768&p=494630#p494587

Hospital packing lists
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50471&p=387437#p387437

On avoiding an incisional hernia
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53704&p=426283#p426283

====
There is also a potential problem with pain medications and constipation. Some of the powerful pain medications have a side effect of causing constipation. You can see what the problem is by googling "PAIN MEDICATION AND CONSTIPATION". So, of you are having a lot of pain in the post-surgery recovery period you have to realize that using powerful pain relievers can be a mixed blessing -- they can relieve the pain for sure, but they might also cause an even bigger problem, namely constipation and difficulty passing stool through the newly formed anastomosis junction.
Last edited by Jacques on Sun Jul 25, 2021 3:56 am, edited 4 times in total.

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horizon
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Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby horizon » Sat Jul 24, 2021 7:05 pm

TiredandTroubled wrote:Now I’m getting concerned? He answered a lot of my questions but I didn’t know he was supposed to give me such detail.


IMO that wouldn't give me reason to be concerned. I barely knew what colon cancer was when I was diagnosed. I, like you, had a board certified surgeon and I just asked the basics about quality of life after surgery, recovery, etc.

I didn't know my staging until after the surgery.
Last edited by horizon on Sat Jul 24, 2021 9:15 pm, edited 1 time in total.
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?

Rock_Robster
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Location: Brisbane, Australia

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby Rock_Robster » Sat Jul 24, 2021 7:27 pm

TiredandTroubled wrote:
Jacques wrote:
TiredandTroubled wrote:... I’m scheduled to get surgery next week ...

Are you all set for your surgery next week? Do you now have all the things that you will need to have at home during the recovery period? For example, all of the right kinds of food and medical supplies that you will need to have close at hand ?

Now is the time to do some last-minute shopping, since you may not feel like doing much shopping just after you have been discharged from the hospital. Just a thought ...


I’m trying to gather everything I can think of, do you have any suggestions?

3 metre (10 foot) phone charging cord :D
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

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ginabeewell
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Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby ginabeewell » Sat Jul 24, 2021 8:25 pm

I second the long phone charger reco, and I might go even longer!

This may be TMI but I found it hard to move quickly enough to get to the bathroom on time, I’m sure it has to do with anesthesia etc. So my reco is to bring plenty of underwear and/or pads.

I was also happy I had my own nice cozy socks with grips on them for the hospital. And my own pillow / pillowcase.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

NoVA21
Posts: 13
Joined: Thu Feb 25, 2021 7:15 pm

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby NoVA21 » Sun Jul 25, 2021 10:19 am

Hello TiredAndTroubled,

I have been there. The anxiety is mostly because of the wait as we were not in control. You will find after surgery that your CEA will go down right away. CEA can be a good indicator in some people but not others. I had a laparoscopic surgery as well. By that afternoon I was able to and encouraged to walk around. By the next day I was able to walk by myself.

My point is - Do not get discouraged and stay positive however difficult that may be. One thing that I learned as well is that I always had another person, my wife, whenever I did a call or met with my doctors. It was overwhelming and I would forget stuff. Having somebody there as an advocate could help you remember those questions you meant to ask.

Though the journey could be difficult, cancer is not a death sentence. We have made so many advancements in medicine. This is coming from someone who never thought would surpass his 5yr mark after a stage IV diagnosis.

I pray and wish you a successful surgery and a speedy recovery.
Dx Jan 2015
Colon Resection Feb 2015 stage 3B
Folfox started Mar 2015
Could only finish 11 out of 12 rounds
Mar 2016 dx mets on both lungs - officially stage 4
Apr 2016 double lung resection
By the grace of God, am still clear today.

margiej
Posts: 109
Joined: Sat Apr 14, 2018 8:46 am

Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby margiej » Sun Jul 25, 2021 5:39 pm

My doctor suggested bringing my own comfy clothes. Loose fitting jammies/sweats...just to feel more normal than wearing a hospital gown. Slippers. You'll be walking around pretty soon after your surgery to get things moving. A kindle or e-reader was really useful for me. I couldn't sleep sometimes at night and it was nice to be able to immerse in a good novel. The nurses pop in at all hours.

Google low residue diet...I think I was on a low residue diet for 3-4 weeks, so stock up on the low residue foods.. white bread, pasta, white rice.

I spent three nights in the hospital.. My pain was managed really well in the hospital and while they sent me home with an Rx for hydrocodone, I never needed it..I think I took some ibuprofen once.

I had never had surgery or been hospitalized except for my two babies, and I was pretty scared, but it was much easier than I thought it would be.

Very best of luck to you... You'll do great!
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

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O Stoma Mia
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Re: 29F. Just got a colonoscopy. They found something and I’m scared.

Postby O Stoma Mia » Tue Aug 10, 2021 9:31 am

TiredandTroubled wrote:...Question: At what point would genetic testing happen? Can they use the biopsy for that or do they need a blood sample? Do you need that information before getting a treatment plan? Do I need to ask them to do genetic testing or do they do that automatically?

First of all there is a difference between genetic testing and genomic testing. Genetic testing tests the DNA of your whole body (based on a blood sample) to see if you have any relevant inherited mutations present since birth, such as an elevated risk for Lynch Syndrome, FAP, endometrial cancer, etc.. Genomic testing, on the other hand, tests for mutations in the tumor tissue only (based on a tissue sample from the original primary tumor), for purposes of finding out what kinds of chemo the tumor and its metastases might be most susceptible to.

You don't need genetic testing right now if you have no family history of colorectal cancer or colorectal polyps.

You don't need genomic testing right now, either, because you are Stage III-B and don't have any confirmed remote metastases. As a Stage III-B patient without a family history of CRC, all of the 1st-line treatments approved for you right now (e.g., FOLFOX, XELOX(CAPOX), etc.), are without restriction. (The exception on genomic testing is MSI testing. All CRC patients need to have MSI testing done, regardless of stage.)

However, if you ever have a recurrence you will definitely need to have genomic testing done because some of the treatment regimens used to treat mCRC come with restrictions. The restrictions for you are indicated in red in the list below.**

Since you are at risk of possibly having a recurrence in the future, you might want to have the relevant testing done right now so that you know what your tumor's genomic profile is. However, for a Stage III-B patient your insurance may not cover this type of testing since it is useful only for confirmed Stage IV / mCRC patients. So you might need to pay for these tests yourself unless your oncologist has made strong arguments to the insurance company that you really need these tests.

    O Stoma Mia wrote:For reference, here are the main chemo drugs and chemo drug-combinations in use right now, along with their dates of original FDA approval :

      Drugs used in colorectal cancer
      1962 5-FU (Fluorouracil Injection) - no restrictions
      1998 Xeloda (Capecitabine) - no restrictions
      2000 Camptosar (Irinotecan Hydrochloride) - no restrictions
      2004 Avastin (Bevacizumab) - mCRC 1st line+
      2004 Eloxatin (Oxaliplatin) - no restrictions
      2004 Erbitux (Cetuximab) - mCRC 1st line+, KRAS wild type only
      2006 Vectibix (Panitumumab) - mCRC 1st line+, KRAS wild type only
      2012 Keytruda (Pembrolizumab) - mCRC 1st line, MSI-H only
      2012 Zaltrap (Ziv-Aflibercept) - mCRC 2nd line
      2012 Stivarga (Regorafenib) - no restrictions
      2014 Cyramza (Ramucirumab) - mCRC 2nd line
      2015 Lonsurf (Trifluridine and Tipiracil Hydrochloride) - no restrictions
      2017 Opdivo (Nivolumab) - mCRC 1st line+, MSI-H only
      2018 Yervoy (Ipilimumab) - mCRC 1st line+, MSI-H only
      2019 Zirabev (Bevacizumab.alt) - mCRC 1st line+
      2020 Braftovi (Encorafenib) - mCRC, BRAF V600E only

      Drug Combinations Used in Colorectal Cancer
      FOLFOX - no restrictions
      XELOX (CAPOX) - no restrictions
      5FU+LV -no restrictions
      FOLFIRI - no restrictions
      FOLFIRINOX - no restrictions
      XELIRI (CAPIRI) - no restrictions
      FOLFIRI+AVASTIN(BEVACIZUMAB) - mCRC 1st-line+
      FOLFIRI+ERBITUX(CETUXIMAB) - mCRC 1st-line+
** Please note that the annotated table above is intended only for the case of Stage III patients without family history of CRC . A different annotated table would be needed for other cases, such as Stage I, Stage II-A, Lynch Syndrome patients, FAP patients, etc., etc.


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