New here. Just found out I have stage 3

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Hopegirl
Posts: 9
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

New here. Just found out I have stage 3

Postby Hopegirl » Mon Nov 13, 2017 10:20 pm

Hi , I’m sorry if I don’t make any sense . Still in a state of shock and very scared . I had to ask for the test for myself because I been having cramps on my stomach. My primary and my ob dr.’s kept ordering ultrasound and X-rays . Nothing showed so I asked for mri and that’s how it started . MRI shows mass but not sure what it was . I had colonoscopy done on October 6th than the following week the dr called about the results . He says it was positive for colon cancer . Had surgery on October 19th to remove the disease and they also found 5/26 lymph nodes . Not sure when I will start chemo . I see my oncologist tomorrow. Feeling very nervous n scared . I also have severe anxiety disorder so this doesn’t help . My anxiety has been so bad that I don’t know if it’s anxiety or something else . I’m 46 with 4 kids , 25,21,11,9 year olds . Being hypochondriac didn’t help . I had so many test done how did I miss this test :cry: . I just need to know if I’m gonna be ok. I know it’s a crazy question . I’m just so scared . I need to be here for my kids . Again sorry if I am saying too much . My first time being on here not sure if I’m explaining it right . Thanks for reading
Diagnosed 10/11/17 46 years old female 4 kids 25,21,11,9
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: New here. Just found out I have stage 3

Postby Lee » Mon Nov 13, 2017 11:51 pm

Please know that you are not alone. I was diagnosed stage 3 IIIC almost 14 yrs ago. Very much alive and kicking today. You have found the right place for information and support. You are NOT alone here,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
ocstacy
Posts: 207
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: New here. Just found out I have stage 3

Postby ocstacy » Tue Nov 14, 2017 2:16 am

Feeling very nervous n scared . I also have severe anxiety disorder so this doesn’t help . My anxiety has been so bad that I don’t know if it’s anxiety or something else . I’m 46 with 4 kids , 25,21,11,9 year olds . Being hypochondriac didn’t help . I had so many test done how did I miss this test :cry: . I just need to know if I’m gonna be ok. I know it’s a crazy question . I’m just so scared . I need to be here for my kids . Again sorry if I am saying too much . My first time being on here not sure if I’m explaining it right . Thanks for reading


Welcome and sorry to hear about your new DX. I know it's scary in the beginning and new. That is how I felt with my mom when she got DX this past May 2017. This is a great resourceful site with a ton of helpful advice! I learned so much about radiation, Xeloda, food restrictions, recipes, toiletries, what to expect, proper verbage, surgery prep, post op info, etc. I would like to recommend to you to make a signature info page like 90% of the people on this site so you don' t have to repeat yourself over and over again. It's just nice to read your DX and etc so people get to know you. I am an advocate for my dear mother who is 78 and she has no idea on how to use a computer, etc. I am her voice, her brain, and resources. I am my mom's side kick and guess what? She lives two homes down from me like "My Big Greek Wedding". :D She is lucky to have me as I am her nurse, caregiver, driver, meal planner, insurance rep, accounts payable, etc. My mom had her surgery 10/17 and it was a rocky recovery as she ended up having an abscess/hernia. She got discharged a week ago. Prob the hardest thing for me to see my mom in recovery mode. I stayed with her at the hospital so I saw everything and anything. I made sure she was SAFE and taken care of.. even though I know that is the nurse's job. I wanted to be there for her unconditionally. Oxycodone was not a good match for her but now she is doing AWESOME after antibiotics! Gaining weight, eating good, taking showers, getting out little by little, etc. She still gets very tired, but her body went through a lot starting in July with radiation, chemo, surgery, recovery. Good news is that none of her lymph nodes were involved and the surgeon said that he got most of the cancer so we are crossing our fingers that it's a no evidence of disease or complete pathological response. We were handed a brochure today that said "Life after Cancer" :mrgreen: :shock: This site is a huge support and I have learned so much from every single person. I hope that you will experience the same. I used to suffer from the same disorder as you. Mine has completely gone away and I got off all my medication and just take vitamins and work out daily. Best of luck to you! XXX
Caregiver/daughter to dear mother age 77, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Chemo Xeloda post-surgery following reversal 2018
Me: Colonoscopy age 38. 08/17 Benign polp.
Hemmy's post partum:roll:

NHMike
Posts: 686
Joined: Fri Jul 21, 2017 3:43 am

Re: New here. Just found out I have stage 3

Postby NHMike » Tue Nov 14, 2017 4:36 am

Sorry that you have to go through this with young kids. Many of us are going through something similar with ourselves, spouses, parents or friends so we know a lot about your concerns along with the processes and problems of what you are going through.

It is not an easy journey but many have made it through the long term. Survival rates have improved considerably over the pas decade, especially for Stage 3. I’m also Stage 3 though rectal instead of colon.

Please feel free to ask questions, vent steam and make general requests. I found that following or chatting with people that were going through the same things around the same times helpful.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

SweetC80
Posts: 72
Joined: Fri Sep 01, 2017 1:28 pm

Re: New here. Just found out I have stage 3

Postby SweetC80 » Tue Nov 14, 2017 9:27 am

I am so sorry you find yourself here. This is a fantastic board with great information and support.

My mother's anxiety and depression has really reared it's ugly head since she was diagnosed, but she has been open about her struggles and has been seeing her PCP to get on the best medication to help her mentally. This has really made a big difference for her and her mental health. No matter how "easy" or hard your battle is ahead of you your mental health will be important for you and your family. I'm glad you have acknowledged this is a struggle for you so you can keep on top of it.

I wish you the best and your oncologist help finds your way to NEDville.
Mom's history
68yo at diagnoses
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum and Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met and suspicious 7mm Lung Nodule CEA 197
9/17 Irincotecan CEA 160
10/17 Confirmed KRAS Positive CEA 210
11/17 Met growths, Liver 10cm and Lung 8mm CEA 425
12/17 Onco Apt to discuss options after treatment for abscess. Mom's not giving up

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: New here. Just found out I have stage 3

Postby Aqx99 » Tue Nov 14, 2017 2:40 pm

I was diagnosed with stage 3 rectal cancer at 39. It is a very scary thing to hear. You have come to the right place. Feel free to ask any questions you have, vent, whatever. We are all here for you.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

fumaros
Posts: 218
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: New here. Just found out I have stage 3

Postby fumaros » Tue Nov 14, 2017 3:16 pm

Hi Hopegirl,

I come on the site all the time just to read the stories of all the many people on here who are alive and "well." You are going to be okay, you can beat this.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: New here. Just found out I have stage 3

Postby teacher2017 » Tue Nov 14, 2017 10:00 pm

Hey Hopegirl-
I'm right here with you. Totally blindsided at 48 with stage 3c. 12/17 Lns and scared out of my mind. Terrible dreams and morbid thoughts. PTSD definitely. I am finished with chemo 1. It was a hard road to get here. I have learned a lot about myself. I am stronger than I seem and I'm fragile like a bomb not a flower. You are too. You will survive the port placement, the chemo, and anything else this throws your way. Your attitude will speak volumes and your resolve is what you have to show your kids. Message me and we can do this together. You are not alone. Don't google. All that is wrong. Please believe me. We can do this.
Lydia
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

kiwiinoz
Posts: 1085
Joined: Thu Jan 03, 2013 11:44 pm

Re: New here. Just found out I have stage 3

Postby kiwiinoz » Thu Nov 16, 2017 7:26 pm

Been in the same place with a worse diagnosis and felt like the world was falling around my ears.
I am still here, doing well and almost at the 5 year mark.
There is hope and you just need to deal with each issue, one at a time. I found if I looked at the bigger picture it got too overwhelming so I didn't :D and just dealt with it in small digestible chunks, which was so much more manageable.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 March 2017
Port Out 26 March 2015

Hopegirl
Posts: 9
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Re: New here. Just found out I have stage 3

Postby Hopegirl » Fri Nov 17, 2017 1:42 am

teacher2017 wrote:Hey Hopegirl-
I'm right here with you. Totally blindsided at 48 with stage 3c. 12/17 Lns and scared out of my mind. Terrible dreams and morbid thoughts. PTSD definitely. I am finished with chemo 1. It was a hard road to get here. I have learned a lot about myself. I am stronger than I seem and I'm fragile like a bomb not a flower. You are too. You will survive the port placement, the chemo, and anything else this throws your way. Your attitude will speak volumes and your resolve is what you have to show your kids. Message me and we can do this together. You are not alone. Don't google. All that is wrong. Please believe me. We can do this.
Lydia

Hi , I was wondering What chemo did you choose . And how bad is the side affects . My oncologist recommends xelox I think that’s what it’s called . Sigh I’m still confuse about all this still trying to learn all these names . Finding out I have cancer was the worst and now chemo also scares me . My appointment to put in my port is 11/27 and I see my oncologist on 11/28 to see which chemo . And when I will start my chemo. Does it hurt after the port is put in? Sorry so many questions
Diagnosed 10/11/17 46 years old female 4 kids 25,21,11,9
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17

NHMike
Posts: 686
Joined: Fri Jul 21, 2017 3:43 am

Re: New here. Just found out I have stage 3

Postby NHMike » Fri Nov 17, 2017 5:36 am

Hopegirl wrote:Hi , I was wondering What chemo did you choose . And how bad is the side affects . My oncologist recommends xelox I think that’s what it’s called . Sigh I’m still confuse about all this still trying to learn all these names . Finding out I have cancer was the worst and now chemo also scares me . My appointment to put in my port is 11/27 and I see my oncologist on 11/28 to see which chemo . And when I will start my chemo. Does it hurt after the port is put in? Sorry so many questions


I've only had Neo-Adjuvant chemo and that was Xeloda. XELOX is oral Xeloda and Infused Oxaliplatin. I had minimal side-effects with Xeloda but I've heard from others with stronger side-effects. I've not had the Oxaliplatin but the main concern with it is neuropathy (cold sensitivity, nerve issues in fingertips and maybe toes). It appears to be permanent in some people or it could take a fairly long time to go away. Some people don't seem to have too many problems with it as well. The side-effects seem to vary widely from person to person.

I worked through my chemo and radiation treatments and my oncology nurse indicated that most people do the same. You will feel more tired from the Xeloda as your Red and White Blood Counts will go lower. I also ran and played tennis while on treatments.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

teacher2017
Posts: 126
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: lydia Clark

Re: New here. Just found out I have stage 3

Postby teacher2017 » Fri Nov 17, 2017 6:11 am

Hopegirl wrote:
teacher2017 wrote:Hey Hopegirl-
I'm right here with you. Totally blindsided at 48 with stage 3c. 12/17 Lns and scared out of my mind. Terrible dreams and morbid thoughts. PTSD definitely. I am finished with chemo 1. It was a hard road to get here. I have learned a lot about myself. I am stronger than I seem and I'm fragile like a bomb not a flower. You are too. You will survive the port placement, the chemo, and anything else this throws your way. Your attitude will speak volumes and your resolve is what you have to show your kids. Message me and we can do this together. You are not alone. Don't google. All that is wrong. Please believe me. We can do this.
Lydia

Hi , I was wondering What chemo did you choose . And how bad is the side affects . My oncologist recommends xelox I think that’s what it’s called . Sigh I’m still confuse about all this still trying to learn all these names . Finding out I have cancer was the worst and now chemo also scares me . My appointment to put in my port is 11/27 and I see my oncologist on 11/28 to see which chemo . And when I will start my chemo. Does it hurt after the port is put in? Sorry so many questions


I hear you. It's all so traumatizing. My port placement was uneventful. It takes 1/2 hr and you are in a twilight state. I feel a bit like a cyborg. Yes it's sore after the surgery. Tylenol takes care of the pain. It heals up in about two weeks. I feel nothing unless I bang it somehow. It really does make blood work and treatment easier. I decided to do the folfox which is the infusion and then I take home the fanny pack for about 40hrs. I chose it because the dr said with a lot of LNs involved she wanted it to go straight into my bloodstream. That pills sometimes are not fully absorbed. So I get disconnected at home by a family member. I hate it so much but I think of it as a tiny army going in and cleaning up any stray cancer cells. I sit there and pray it works. I will feel better once I am in the single digit treatments. I plan on having a party at my last one and I swear I may rip out the port myself. You will feel better once treatment starts. Why? You will feel like you are being productive and preventative. As for side effects, I've only had one treatment. It was also uneventful. After the disconnect day I got very sleepy. Mild nausea. Dry mouth. No cold sensitivity. Some first bite which sucks. It all wore off. I'm ok now. My mind made this a lot worse than it is. Yes I'm scared too death. But you still have a life to live. LIve it. Make plans. This will help you through it.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8 started
CEA level- 1.4 11/8
Hoping clean up chemo works!

heiders33
Posts: 42
Joined: Sat Nov 04, 2017 11:08 am

Re: New here. Just found out I have stage 3

Postby heiders33 » Fri Nov 17, 2017 7:47 am

Hopegirl wrote:
teacher2017 wrote:Hey Hopegirl-
I'm right here with you. Totally blindsided at 48 with stage 3c. 12/17 Lns and scared out of my mind. Terrible dreams and morbid thoughts. PTSD definitely. I am finished with chemo 1. It was a hard road to get here. I have learned a lot about myself. I am stronger than I seem and I'm fragile like a bomb not a flower. You are too. You will survive the port placement, the chemo, and anything else this throws your way. Your attitude will speak volumes and your resolve is what you have to show your kids. Message me and we can do this together. You are not alone. Don't google. All that is wrong. Please believe me. We can do this.
Lydia

Hi , I was wondering What chemo did you choose . And how bad is the side affects . My oncologist recommends xelox I think that’s what it’s called . Sigh I’m still confuse about all this still trying to learn all these names . Finding out I have cancer was the worst and now chemo also scares me . My appointment to put in my port is 11/27 and I see my oncologist on 11/28 to see which chemo . And when I will start my chemo. Does it hurt after the port is put in? Sorry so many questions


Hopegirl, I am currently on the Xelox regime. I take Xeloda pills for 14 days on, 7 days off and go in for an Oxaliplatin infusion once every three weeks (hence the name "Xelox'). I'm currently in my second of six rounds. I had a port put in and it was no problem at all. i was actually alert the whole time but they had a sheet over me so I couldn't see anything. :) It was a little sore for a few days afterward, but now I pretty much forget that it's there. The port is great because it spares your veins the irritation from the Oxi. I've had very minimal side effects from Xeloda, just some dry skin here and there. With the Oxi, I get cold sensitivity right away - tingling in my feet, fingers, and throat when hit by cold, as well as muscle twitching in random spots and in my eyelids when they're hit by wind. Also my lips react to even room temperature liquid, and my fingers cramp up. But this is only in the first few days, then it wears off. Everyone reacts differently. My nervous system is clearly hypersensitive, while my immune system is great and I have not gotten sick at all during treatment. I had nausea during my first round, but this time I fended it off with anti-nausea drugs and it never came. After your first round, you will know what to expect and it will be much more manageable, believe me! I highly encourage you to keep a journal of your side effects each day. This will help you to anticipate the side effects when they come the next time, and you will know how to alleviate them. It does get better, and there is light at the end of the tunnel! Don't be scared by the chemo - I was anxious the night before my first infusion, but now I feel so much more in control.
35 year-old female
May 2017: Dx at T3N2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

Aqx99
Posts: 279
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: New here. Just found out I have stage 3

Postby Aqx99 » Fri Nov 17, 2017 8:19 am

Hopegirl wrote:Hi , I was wondering What chemo did you choose . And how bad is the side affects . My oncologist recommends xelox I think that’s what it’s called . Sigh I’m still confuse about all this still trying to learn all these names . Finding out I have cancer was the worst and now chemo also scares me . My appointment to put in my port is 11/27 and I see my oncologist on 11/28 to see which chemo . And when I will start my chemo. Does it hurt after the port is put in? Sorry so many questions


I didn't get a choice with chemotherapy, my oncologist told me that she felt CapeOx (the generic form of XelOx) was best for me, so that is what I am doing. They numb you to put the port in, but once the numbing agent wears off, it does hurt for several days afterwards. I managed my pain with Tylenol. Once it heals, you won't notice it is there unless you bump it. They will give you a prescription for lidocaine cream to put on your port before infusions, so you won't feel the needle going in. Keep asking questions, knowledge is power.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

User avatar
Robino1
Posts: 222
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New here. Just found out I have stage 3

Postby Robino1 » Fri Nov 17, 2017 8:24 am

Sometimes they don't just give the prescription for the lidocaine. I had to ask for it. I had no clue about it until I read either on this forum or another cancer site.

Ask the nurse or the doctor to prescribe it for you. The nurses are super helpful.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(


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