Biopsy is in!!! Stage 3 Very Unexpected

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KG60222
Posts: 7
Joined: Thu Jul 07, 2022 10:14 am
Facebook Username: Kriste.Gerhard

Biopsy is in!!! Stage 3 Very Unexpected

Postby KG60222 » Tue Aug 02, 2022 9:09 pm

July 22, 2022 I went in for surgery convinced my cancer was contained in the Sigmoid. When I woke up my husband told me the news. Apparently, my tumor had escaped the colon and they found a second tumor in addition to 23 of 42 lymph nodes were infected with cancer as well. Why didn't the tests show lymph nodes show up? Why didn't they know it had left the colon? What about the second tumor? Why should I trust this entire system? Do I need a PET Scan next? MRI?

My mind is spinning, moment to moment my thoughts and plans change. As I sit here recovering from major surgery, I have no idea what my life looks like anymore.

4aN2b . Stage 3. Folfox here I come. Or should I ?

Before my routine colonoscopy on June 2, 2022 I was living my best life. Empty Nest!!! Finally doing me !!! Always putting everyone else first, it was my turn to do ME! What does doing me look like ? Do I have three years? Five? Will I waste a year doing Chemo that will cause health issues I never had?

I am all over the place. I am angry, scared, worried! I want to completely ignore this and live my life... I want to travel, I want to see things I have never seen. I also want to see my children have children. Ugh!!!!
July 22, 2022 Colon resection - Invasive adenocarcinoma
23/43 Lymph Nodes Metastatic carcinoma detected
Lmph Vascular Invasion
pT4a -pN2b
Additional Peritoneal Nodule - Adenocarcinoma
50 year old married Female
June 2,2022 standard screening colonoscopy
3-4 cm tumor in the sigmoid
7.1 CEA
Moderately diff adenocarcinoma
Ct scan clear
Ultrasound polyp on gallbladder
MMR proficient
Eccentric mural thickening of the distal sigmoid

User avatar
ANDRETEXAS
Posts: 659
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby ANDRETEXAS » Wed Aug 03, 2022 12:24 am

You are going to do something for yourself. You are going to stay positive, take one day at a time, develop a plan with your doctor and then begin that plan for your recovery. I know how difficult it is when you hear the news. I had a clean colonoscopy in 2008. My GI told me everything was great and to come back in 10 years. Five years later while going to the ER for a different matter, the hospital ran some tests. I was informed I had anemia. They insisted on giving me another colonoscopy. Found out I had a flat polyp in my cecum. My signature below will summarize my recovery - 8 years cancer free this year. My advice is to not visit Google because it won't help you, but just cause you confusion. You are you and no one else is like you or will have the same cancer as you have. The statistics online cover a wide variety of people and is not indicative of your cancer. Once you get a plan established, come back here. There are many people who can help you with answers, thoughts and personal experiences. Stay confident and defiant. You will recover and then do all the things you mentioned you wanted to do, but with the confidence that you can overcome any obstacle put in front of you. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

roadrunner
Posts: 272
Joined: Sun Jan 12, 2020 8:46 pm

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby roadrunner » Wed Aug 03, 2022 8:43 am

I agree with Andre’s advice—it’s well-expressed and sound—but I differ on one point. Research, including tons and tons of Internet (yes, Google) research, has been essential to me. It has helped me in innumerable ways. It can be confusing, but without it IMO we patients are passive receivers of care, with little or no role in our treatment plan or strategy. That didn’t suit my personality, and while many cancer physicians are spectacular, some are disengaged, inexperienced, or just substandard. I figured in the end this was my life, and nobody else’s.

On this point, I think the key is self-assessment: Do you want to play an active, sometimes admittedly difficult, role in your care? Do you have the ability (intellectual and emotional) to do that? Or are you more comfortable putting your full trust in trained professionals? Either choice can be good, or not so good. But I am
convinced it’s not one-size-fits-all.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

MadMed
Posts: 166
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby MadMed » Wed Aug 03, 2022 11:22 am

As usual, I agree with RR and Andre. My sense is that moderation in googling is a good thing. I went through phases where it was not healthy, more obsessive than useful.
The key is to know what to google and what not to google. Anything prognosis is not useful. Details about treatment,side effects, procedures is a good thing.

This board gives much more useful details than most of the stuff on google too!
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

KG60222
Posts: 7
Joined: Thu Jul 07, 2022 10:14 am
Facebook Username: Kriste.Gerhard

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby KG60222 » Thu Aug 04, 2022 7:15 pm

I appreciate the responses.

I am a strong independent woman, married to an engineer... Research is going to happen one way or another. Trust is really not in my vocabulary, especially because I moved to this area in NY only 4 years ago and really don't have a relationship with my medical professionals. I do not like, not knowing ANYTHING about what I am up against, I have no footing. As a mom, I am the one that always knows what is needed in every situation. NOT THIS TIME

Google is a source but not the only source. My daughter in law is an RN for oncology back home. I lean on her for support and direction often. I am the first person in my family to have Cancer, so my family isn't really a resource.

Tomorrow I see the oncologist for the second time but the first time since my surgery. I hope he left a big hole in his schedule for my list of questions. I feel like I need a 24 hr coach ! Anxiety, and fear is heavy.

Folfox is in my future , the research I have done says I should be prepared to be sick!!! I see most of you have been there and done that. How do I prepare emotionally? What do I need to do at home to prepare?

Conversations of genetic testing for Proteins for my kids is becoming a topic. Questions I need to ask for them? What do I tell them? (all adult children)
July 22, 2022 Colon resection - Invasive adenocarcinoma
23/43 Lymph Nodes Metastatic carcinoma detected
Lmph Vascular Invasion
pT4a -pN2b
Additional Peritoneal Nodule - Adenocarcinoma
50 year old married Female
June 2,2022 standard screening colonoscopy
3-4 cm tumor in the sigmoid
7.1 CEA
Moderately diff adenocarcinoma
Ct scan clear
Ultrasound polyp on gallbladder
MMR proficient
Eccentric mural thickening of the distal sigmoid

Nor Cal
Posts: 64
Joined: Sun Dec 06, 2020 8:18 pm

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby Nor Cal » Thu Aug 04, 2022 8:39 pm

KG60222 wrote:Folfox is in my future , the research I have done says I should be prepared to be sick!!! I see most of you have been there and done that. How do I prepare emotionally? What do I need to do at home to prepare?


You'll definitely want to be prepared for the Oxaliplatin side effects. I was extremely sensitive the next day to touching anything cold, and my first bite of every meal was an adventure of weird jaw pain. Have a couple different kinds of nausea meds on hand and hopefully you'll be fine. Fatigue seemed to peak on days 3-4 for me so be prepared for plenty of naps. I'm a very diet conscious person, but the first few days after chemo I generally just eat whatever sounds okay - mac'n'cheese, bland rice dishes - the stuff I don't normally eat in real life. And pay attention to any potential nerve damage in your hands and feet - your oncologist should be on top of that.

Emotionally, I am relentlessly positive about outcomes. I celebrate every little bit of good news. I get a walk every day. And when it comes to Google I get in and get out. I find one bit of encouraging data or one good story, and then shut it down. The rabbit hole fuels relentless anxiety.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 34 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

prayingforccr
Posts: 368
Joined: Sun Jun 28, 2020 4:44 pm

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby prayingforccr » Fri Aug 05, 2022 5:29 pm

KG60222 wrote:I appreciate the responses.

I am a strong independent woman, married to an engineer... Research is going to happen one way or another. Trust is really not in my vocabulary, especially because I moved to this area in NY only 4 years ago and really don't have a relationship with my medical professionals. I do not like, not knowing ANYTHING about what I am up against, I have no footing. As a mom, I am the one that always knows what is needed in every situation. NOT THIS TIME

Google is a source but not the only source. My daughter in law is an RN for oncology back home. I lean on her for support and direction often. I am the first person in my family to have Cancer, so my family isn't really a resource.

Tomorrow I see the oncologist for the second time but the first time since my surgery. I hope he left a big hole in his schedule for my list of questions. I feel like I need a 24 hr coach ! Anxiety, and fear is heavy.

Folfox is in my future , the research I have done says I should be prepared to be sick!!! I see most of you have been there and done that. How do I prepare emotionally? What do I need to do at home to prepare?

Conversations of genetic testing for Proteins for my kids is becoming a topic. Questions I need to ask for them? What do I tell them? (all adult children)


I drank ginger tea before, during and after infusions, and chewed ice as much as possible during the infusion.

The ginger tea really worked for me as far as the nausea went. I did experience some pretty bad neuropathy in the feet and hands which I dealt with afterwards with hbot, acupuncture, and foot and hand rubs.

Variation: Stovetop Ginger Tea
Makes 4 servings

Ingredients:
2-inch piece of fresh ginger root
4 cups of filtered water
optional: honey, to taste
Directions:
Peel the ginger root and slice it into thin slices.
Bring the water to a boil in a saucepan. Once it is boiling, add the ginger.
Cover the pan and turn off the heat. Allow it to steep for 10 minutes.
Remove the ginger slices and pour it into your favorite mug. Add honey to taste
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

DarknessEmbraced
Posts: 3701
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby DarknessEmbraced » Sat Aug 06, 2022 8:23 am

I'm sorry for your diagnosis. *hugs* I hope your chemo goes well.
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! :)

michelle c
Posts: 1926
Joined: Wed Dec 02, 2009 3:58 am

Re: Biopsy is in!!! Stage 3 Very Unexpected

Postby michelle c » Tue Aug 09, 2022 9:35 am

Hello,

You sound a lot like me when I was diagnosed in 2009.

I am still here, just wanted you to know that.

Hang in there xx
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


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