Just found out I have colon cancer... time to fight!

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Just found out I have colon cancer... time to fight!

Postby Mystimom » Fri Mar 30, 2018 2:31 am

Hi Everyone...

i have never joined online forums before but I am hoping to contribute to this community as well as get support from you awesome group of people...

I have been anemic for several years...thinking it was a family pattern, as my four other sisters had the same problem, and treated themselves effectively with iron supplements. This was unfortunate for me, as I assumed I only needed to take iron and I'd be fine! And that is what happened...I got my iron levels up and regained my stamina by taking iron three times a day.

However, after no other symptoms, at the end of February, I developed a bad pain in my lower right abdomen. I ignored to for two days, as it was the beginning of my menstrual cycle. Finally, on a Saturday, I drove myself reluctantly to a walk in clinic. When the doctor pressed on my abdomen I screamed and she looked at me with an ominous glance. Sent me off immediately in an ambulance without saying much else to me.

A long night waiting in the ER...back and forth with a CT scan and more waiting.. then I was told I'd be having an appendectomy right away.
At 4am, they cut did a laparoscopic appendectomy. I woke up in pain but smiling...thinking of the children's storybook, Madeleine. Appendicitis is common, and now I can brag about it happening to me!

There was a creepy looking photo next to my bed of the inside of my guts. I assumed it was the matter from the burst appendix...all crusty and gooey and sore looking. No one told me about that photo..I just proudly took it home and stuck it in my medical folder.
It wasn't until 2 days later that my surgeon finally connected with me and told me I had cancer. It came from my colon and perforated the tip of my appendix...releasing an unknown amount of cancer cells inside of my abdominal cavity.

Fast forward one month...I met with Dr. Martin Goodman at Tufts in Boston (I live in CT)..he may be doing the HIPEC in the summer...maybe not.
I begin Chemo tomorrow...Xeloda pills daily for three and Oxaliplatin IV once every 4 weeks.

I still have so many unanswered questions...such as: Why are they waiting to operate? What stage am I? Has it spread to any lymph nodes or organs?
I do have a small spot on my liver, but they don't know what it is...

And the chemo! I'm dreadfully nervous for my first session...still awake at 3:30am. My two huge dogs are sleeping with me..so that helps. :D

Is there anyone out there with a similar situation as mine? I know we are all unique, but no one else understands the feelings we have deep inside unless
one has experienced it as well. Family and friends are great, and I am so grateful for them...but they have their lives and I feel quite lonely.

Thank you for listening to this lonnnnnnnnng message... and I hope you all are sleeping peacefully!


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Joined: Sat Dec 23, 2017 6:01 pm

Re: Just found out I have colon cancer... time to fight!

Postby Caat55 » Fri Mar 30, 2018 9:52 am

Thank goodness for dogs, seriously. The chemo is going to go after any loose cancer cells in your body. I had first chemo last Thursday. I was told about the tingling, discomfort with touching cold things but wasn't prepared for how serious it was. It was painful to hold celery and carrots last night cooking dinner. The first two days I was hyper from the steroids, then I crashed. Now except for cold sensitivity, I am fine.
Be strong, have confidence in yourself and your physician but seek a second opinion just to quiet your questions.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

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Joined: Wed Aug 16, 2017 12:13 am

Re: Just found out I have colon cancer... time to fight!

Postby Mercy110 » Fri Mar 30, 2018 10:41 am

So sorry to hear that. This thing just come without much notice. my mum won’t discover rectal cancer if she hasn’t experience bad pain for the whole night. Unforgettable day for our family indeed. Xeloda was not useful in my mum’s case so I don’t have much to contribute except make sure take them after full meal. Oxa will lead to neuro responses and the effect is accumulative. Take my mum as an example, she can afford ten times of oxa only. Allergic reaction develops gradually for most people I know.

Wish you all the best and stay strong. Prayers to you and your family.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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O Stoma Mia
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Re: Just found out I have colon cancer... time to fight!

Postby O Stoma Mia » Fri Mar 30, 2018 2:26 pm

Mystimom wrote:... I have never joined online forums before but I am hoping to contribute to this community as well as get support ...

In my opinion, if you want to request and receive good support here you need to have a signature that tells everyone at a glance what your current situation is. This is very important when requesting "informational support", because there are so many different scenarios and stages in colorectal cancer that information considered highly relevant in some contexts may be irrelevant or even useless in other contexts. Readers need to have a snapshot of your current situation in order to determine whether or not they will have anything relevant to contribute.

A signature can then appear at the bottom of each of your posts, so that readers do not have to scroll back and forth through all of your old posts to see what your current status is.

Here is a template that can get you started in creating a signature:

O Stoma Mia wrote:To create a signature, click on the link below. You can have up to 512 characters (including spaces) in your signature.


Some items that you could include in your signature are given below:

Age & Sex
DX: Rectal Cancer (RC) or Colon Cancer (CC)
Tumor Location: If RC, then upper, middle or lower rectum, and distance from anal verge (AV). If CC, then cecum, ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
Tumor size (in mm or cm)
Tumor grade:
    G1: Well differentiated (low grade)
    G2: Moderately differentiated (intermediate grade)
    G3: Poorly differentiated (high grade)
    G4: Undifferentiated (high grade)
TNM code: e,g, T3N0M0, etc
Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
Positive lymph nodes: eg., X positive out of Y sampled.
Mets: Location of remote metastases, if any (e.g., mets to liver, mets to lungs, etc)
Baseline CEA value (if known)
Lymphovascular invasion (LVI) (if known): present vs. absent
Perineural invasion (PNI) (if known): present vs. absent
Surgical margins (proximal, distal, circumferential): clear or involved
MSI status (if known): MSI-H, MSS, etc.
Lynch status (if known)
KRAS/BRAF status (if known)
Primary surgery type:
    LAR, ULAR, TME, EMR, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectomy, colectomy, hemi-colectomy, sigmoid-colectomy, etc...
Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
Radiation therapy (if any): Chemo/radiation
Chemotherapy (if any): e.g., XELOX(CAPEOX), FOLFOX, FOLFIRI, Xeloda monotherapy, 5FU/LV, etc.
Immunotherapy, targeted therapy (if any)
Clinical trials (if any)
- - -
NOTE: Here is a list of acronyms if you need some help in understanding the jargon typically used in signatures:


Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: Just found out I have colon cancer... time to fight!

Postby retiredteacher » Fri Mar 30, 2018 3:16 pm

I wanted to mention that the signature can be incomplete - you can add just the information that has come to light so far. I found that trying to construct a signature also helped me formulate questions for my radiologist, oncologist, and surgeon .... and ultimately helped me make important decisions down the road. So it's a good exercise to help get your learning going ....
RC F 63 9/17
Adeno 7 cm MSS G2 PET
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

Posts: 2527
Joined: Fri Jul 21, 2017 3:43 am

Re: Just found out I have colon cancer... time to fight!

Postby NHMike » Sat Mar 31, 2018 9:24 pm

I'm sorry that you're dealing with this along with the uncertainties of what happened. I have not heard of this happening before where cancer cells spill out because of a perforation and I don't know the implications of it. My staging was official after an MRI and pathology report and that was some time after the initial CT scan.

The reason for the Xeloda and Oxaliplatin is to kill cancer cells and shrink tumors. This makes the tumors easier to operate on. My tumor was originally 100 cm^3 and it shrunk to under 10 cm^3 after Xeloda and radiation. I think that radiation is common with rectal cancer - not sure if it's routinely used with colon cancer. I'm sure that you've already been through a chemo training session if you're about to start and you know the potential side-effects and risks and have contact information if you have any adverse reactions. I had very few side-effects from the Xeloda before surgery. I have more side effects from it after surgery. I'm on Xeloda for two weeks and then a week off. I'm on Oxaliplatin at the start of the cycle. I find that the Oxaliplatin is very tough but part of that is that I'm in a cold part of the country. I think that most have difficulties with Oxaliplatinl; but fewer difficulties with Xeloda (or 5FU). Discussions on the side-effects of Oxaliplatin are common here.

I certainly went through periods of anxiety and dread and fear as well. Cancer is brutal on your emotions and it can be on your mental health. The stresses it puts on the patient and family and caregivers are considerable. You may need some support from friends and family but they can't truly understand what you're going through unless they've been through it themselves.

I'm in NH and used the local hospital and local radiation center for chemo and radiation but used a surgeon in Boston at Brigham and Women's. I also got second opinions at Dana Farber Cancer Institute. The folks at Dana Farber agreed with the treatment plan from the local hospital and radiation center so it saved me from going into Boston a lot. Boston does have a lot of great hospitals.

There have been a few here with HIPEC but I think that they got it from Memorial Sloan Kettering in New York. I have read that other hospitals are looking at providing the service and it sounds like it's getting out beyond MSK.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Posts: 3583
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just found out I have colon cancer... time to fight!

Postby DarknessEmbraced » Mon Apr 09, 2018 8:56 am

I'm so sorry you're going through this and hope your chemo goes well!*hugs* Welcome to the forum! :D
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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