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

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TiredandTroubled
Posts: 22
Joined: Sat Jul 10, 2021 7:11 am

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

Postby TiredandTroubled » Sat Jul 10, 2021 9:38 am

I got a colonoscopy yesterday after noticing blood in my stool/abnormal bowel movements. When I got my results it showed they found and removed a small polyp. They also found a 7cm mass “of malignant appearance” and took a biopsy.

I’m waiting on the results (a week or two away at least) and am getting a CT scan in a week. I feel like I already know it’s going to be bad, it’s going to be colon cancer and then I don’t know what’s next.

I feel numb and angry and sad and don’t know what to do with myself while I wait for confirmation.

I have no family history. I’m too young for this. It isn’t fair.

Any advice would be much appreciated.
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

roadrunner
Posts: 131
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Sat Jul 10, 2021 11:49 am

I’m sorry you got that news and I know you’re going through a tough time right now. At this point, I can just offer the following: It is not necessarily cancer. It sounds concerning, but not confirmed. If it is cancer, you should know that you did the right thing by posting here. There is a wealth of useful information and experience on this board, and many helpful, supportive people post here. It truly is a great resource. I hope you get a good report, but if you don’t, know that it will be a fight you can win. Good luck!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

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beach sunrise
Posts: 500
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Sat Jul 10, 2021 12:20 pm

When taking the biopsy did they take a CBC, Chem14 and CEA blood work?
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

TiredandTroubled
Posts: 22
Joined: Sat Jul 10, 2021 7:11 am

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

Postby TiredandTroubled » Sat Jul 10, 2021 1:42 pm

beach sunrise wrote:When taking the biopsy did they take a CBC, Chem14 and CEA blood work?


No I don’t think so— when I came to the doctor just said they sent it for a biopsy and I need to get a CAT scan.
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

User avatar
beach sunrise
Posts: 500
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Sun Jul 11, 2021 12:53 pm

Might want to request it next week for just in case scenario.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

stu
Posts: 1503
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Tue Jul 13, 2021 3:15 am

I agree , 29 is just way to young to even have to think of these matters .

However I am very proud of you despite the fear advocating for your health and getting assessed . That took courage !

I am still hoping it’s some other benign condition for you but if it is not please remember bowel cancer caught early can have lots of treatment options ! I have been visiting here for over a decade and people get the help they need by coming here but many , many people leave and pick up the pieces of their lives again .

We are here to support you during this rocky part as they pull the information together . I am also holding out that your quick attention to your health will be advantageous to you going forward !
Take special care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

DCook54
Posts: 27
Joined: Sat Sep 05, 2020 10:12 pm

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

Postby DCook54 » Tue Jul 13, 2021 10:27 pm

I hate that you're having to go through this. Waiting is definitely very difficult. Hopefully, it will be something that is not cancerous and that can be easily treated. I'm here if you need to vent!
54 year old mom of 3 grown children and grandmother of 3
Stage IV colon with mets to lungs
KRAS G12V
NRAS Wild
Dec 2019- partial colectomy to remove mass adenocarcinoma 0/31 Lymph nodes positive
Jan 2020-PET showed NED
Jan 2020- Staged at I
July 2020-Ct shows nodules both lungs
July 2020-VATS both lungs positive crc mets Stage IV
August 2020 began 1/6 cycles Folfox
Nov 20 Completed 6 Folfox
Dec 20 Colonoscopy Clean, CTs clean
Dec 20 NED
April 21 Stable scans.one 4 mm lung nodule to watch

User avatar
Jacques
Posts: 600
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

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

Postby Jacques » Wed Jul 14, 2021 3:15 am

TiredandTroubled -

I sent you a PM.

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horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Wed Jul 14, 2021 11:13 am

I know it will be hard to do but don't assume the worst when you don't know the results yet. Worst case if you do need surgery to remove it there are plenty of people who know what you're feeling and will support you. I was in the same place ten years ago. Life isn't fair but you never know how things will work out.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

DanNH
Posts: 4
Joined: Mon Mar 29, 2021 5:25 pm

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

Postby DanNH » Wed Jul 14, 2021 3:52 pm

My wife got a colon cancer diagnosis this February/March. Nothing in her family history. It was a devastating diagnosis. Mets to liver and lungs. We lived on adrenaline and anguish for a couple of months.

Do you have access to your medical on MyChart or something similar? If not be sure to sign up for it so that you can see first hand what your lab results are. Pam’s was 1298 on her first lab. Normal for a non smoker is under 2.5. It has come down to 92 with chemo.

I sure hope yours biopsy shows something other than cancer.

We had a second opinion at Mass General Cancer Center before her first chemo. It essentially confirmed the diagnosis and the doc ordered a Guardant 360 blood test to identify the strains of cancer.

We sought integrative oncology support right away and are doing some treatments outside of the normal standard of care in addition to it.

Don’t read too much into web searches. Everyone is different. Stay positive as much you can although it is hard at times. God willing it is something else. You came to a good place for support.
Caregiver to 61yoa wife, Stage 4 adenocarcinoma
Diagnosed Feb 2021. Mets Liver and Lungs
Needle Biopsy diffusely and strongly positive for CK20 and CDX2, and focally positive for CK7.
Chemo Folfox March 2021.
Vitamin C IV 50g and 45 min hyperbaric 02 weekly
Supplementation and modified Keto - low carb diet
Reaction to Oxaliplatin on 5th treatment.
Chemo FolFiri May 2021, 6th treatment
May 2021 Scan showed reduction to tumors, some lung tumors disappeared.

TiredandTroubled
Posts: 22
Joined: Sat Jul 10, 2021 7:11 am

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

Postby TiredandTroubled » Wed Jul 14, 2021 6:50 pm

Just wanted to share an update: I met with a colorectal surgeon today (board certified) and he conducted a sigmoidoscopy since my GI doctor didn’t label where the mass was.

They also took blood (I’ll finally know my CEA levels) and scheduled me for a CT scan that includes the chest area (previously my GI ordered only abdomen and pelvis).

I’m getting the CT scan this Friday and probably won’t know the results til the following Monday. The surgeon said the CT scan will indicate if it has spread (aka stage 4).

I still haven’t even gotten my biopsy results back yet but I felt so restless I needed to do something, so I set up this consultation with the surgeon and all the above happened.

Still feeling full of dread.
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

User avatar
horizon
Posts: 1623
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Thu Jul 15, 2021 7:51 am

TiredandTroubled wrote:Just wanted to share an update: I met with a colorectal surgeon today (board certified) and he conducted a sigmoidoscopy since my GI doctor didn’t label where the mass was.

They also took blood (I’ll finally know my CEA levels) and scheduled me for a CT scan that includes the chest area (previously my GI ordered only abdomen and pelvis).

I’m getting the CT scan this Friday and probably won’t know the results til the following Monday. The surgeon said the CT scan will indicate if it has spread (aka stage 4).

I still haven’t even gotten my biopsy results back yet but I felt so restless I needed to do something, so I set up this consultation with the surgeon and all the above happened.

Still feeling full of dread.


This part you're at where you have to sit around and wait for results is just awful. I'd second the advice about staying away from Dr. Google. All my web searches did at this stage was upset me. The things I worried about didn't happen and the bad things that did happen I couldn't have predicted.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

User avatar
Jacques
Posts: 600
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

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

Postby Jacques » Thu Jul 15, 2021 8:57 am

TiredandTroubled wrote:...
I still haven’t even gotten my biopsy results back yet but I felt so restless I needed to do something, so I set up this consultation with the surgeon and all the above happened...

Just a few comments/questions about your biopsy. There is the possibility that your biopsy, like your original CT scan request, might be incomplete and it might need yet another sigmoidoscopy for the purpose of obtaining another biopsy sample.

Normally, a complete biopsy report for a mass suspected to be possibly malignant would have a number of required data items listed in several different categories.Some of the tests on the mass can be done locally at your hospital lab, but other more advanced tests might require biopsy samples to be sent out to specialty labs for analysis. For this reason, you might need to have yet another sigmoidoscopy to capture more biopsy tissue to send to other labs so that if the mass turns out to be malignant the oncologist can have all the items needed for a full biopsy report on the tumor.

If the mass is in fact cancer, then the doctors will need a full biopsy report before finalizing any kind of treatment plan because they need to know exactly what kind of cancer they are dealing with, and how aggressive it is.

Question: When you had the recent sigmoidoscopy, did the surgeon take another biopsy sample? Did he/she mention the possibility of requiring additional biopsy tests?

When you eventually receive the results from your biopsy as well as the results of your full CT scan, I think it would be a good idea to post a message here describing all categories of data items displayed in the reports. With this information, people here would be able to spot any missing items that might still require additional tests.

This is because it is a major error (in my opinion) for patients to hastily decide on a course of treatment before all of the relevant diagnosis/staging data items have been evaluated.

It should be noted that the items needed in a colorectal cancer biopsy report are not arbitrary but are specified explicitly in the guidelines of the College of American Pathologists (CAP). This includes ordinary biomarkers as well as genomic biomarkers. Whether an item is declared as required or optional can depend on the stage of the cancer.

https://www.cap.org/protocols-and-guidelines

TiredandTroubled
Posts: 22
Joined: Sat Jul 10, 2021 7:11 am

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

Postby TiredandTroubled » Thu Jul 15, 2021 9:11 am

Jacques wrote:
TiredandTroubled wrote:...
I still haven’t even gotten my biopsy results back yet but I felt so restless I needed to do something, so I set up this consultation with the surgeon and all the above happened...

Just a few comments/questions about your biopsy. There is the possibility that your biopsy, like your original CT scan request, might be incomplete and it might need yet another sigmoidoscopy for the purpose of obtaining another biopsy sample.

Normally, a complete biopsy report for a mass suspected to be possibly malignant would have a number of required data items listed in several different categories.Some of the tests on the mass can be done locally at your hospital lab, but other more advanced tests might require biopsy samples to be sent out to specialty labs for analysis. For this reason, you might need to have yet another sigmoidoscopy to capture more biopsy tissue to send to other labs so that if the mass turns out to be malignant the oncologist can have all the items needed for a full biopsy report on the tumor.

If the mass is in fact cancer, then the doctors will need a full biopsy report before finalizing any kind of treatment plan because they need to know exactly what kind of cancer they are dealing with, and how aggressive it is.

Question: When you had the recent sigmoidoscopy, did the surgeon take another biopsy sample? Did he/she mention the possibility of requiring additional biopsy tests?

When you eventually receive the results from your biopsy as well as the results of your full CT scan, I think it would be a good idea to post a message here describing all categories of data items displayed in the reports. With this information, people here would be able to spot any missing items that might still require additional tests.

This is because it is a major error (in my opinion) for patients to hastily decide on a course of treatment before all of the relevant diagnosis/staging data items have been evaluated.

It should be noted that the items needed in a colorectal cancer biopsy report are not arbitrary but are specified explicitly in the guidelines of the College of American Pathologists (CAP). This includes ordinary biomarkers as well as genomic biomarkers. Whether an item is declared as required or optional can depend on the stage of the cancer.

https://www.cap.org/protocols-and-guidelines



He did take a biopsy with the sigmoidoscopy - he didn’t mention if he would need anymore.

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?
29F DX 7/19
CC Sigmoid Colon
Size: 7CM
CEA before surgery: 16

roadrunner
Posts: 131
Joined: Sun Jan 12, 2020 8:46 pm

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

Postby roadrunner » Thu Jul 15, 2021 11:19 am

In my view, the initial steps are determination of whether the mass contains cancer and whether any cancer is limited to that location. Everything else will flow from that. Genetic testing my be offered if a malignancy is established by pathology, but it becomes far more important if the cancer has metastasized. It was difficult for me to focus on all of the material issues at once. Because I had rectal cancer, there were also big treatment path choices to be made. I found it best to concentrate on those and personnel decisions—do I have the best team here? The test results will determine your next decision points. Obviously, if it’s not cancer, great. If it is, but it hasn’t spread, your approach shouldn’t be too complicated. Metastasis does make it much more complicated.

As for researching, I think it depends on one’s personality and capacity. I am a huge fan of getting as much information as you can. You have to remember that these folks have hundreds of patients, and no matter how good and caring they are you are just one of many. If you can help yourself, I think it best to do so. On the other hand, that too is a skill. It is not productive to get ahead of the established facts, no matter how tempting that may be. That will just lead to distraction and possibly poor judgment. So it’s a balance (and one that I’ve lost many times). But right now I think the best think to do is wait (tough as that may be) for the initial results, then go from there. Just my two cents, of course. Everyone is different.
Last edited by roadrunner on Fri Jul 16, 2021 3:39 pm, edited 1 time in total.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.


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