Newly diagnosed and scared stiff

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motherducky
Posts: 2
Joined: Wed Jun 22, 2016 11:24 am

Newly diagnosed and scared stiff

Postby motherducky » Wed Jun 22, 2016 11:37 am

Yesterday received the news officially. Doctor found a large mass in my ascending colon and it is cancer. Surgery scheduled for Monday, June 27th. Scared out of my mind. Didn't realize I was sick really. Just thought my body was tired. A small nagging pain near where my gall bladder used to be. Ran a low grade fever for a month. My bowels have never worked right. Thought they would find nothing really. During colonoscopy a dead relative came to tell me that I had cancer and to be brave.
Told family and close friends. Told my boss. Doctor said I have to wait until after surgery to find out what stage I am in and whether I need chemo or something. He said he was not good with what he found. I am 41 years old. My family on my father's side has a long history of colon cancer.
I don't know what to ask. I don't know what to feel. I put on my brave face for my kids and husband and just keep hoping it seeps in to my body. The bravery that is. I want to cry. But I don't want to break down. Don't want to scare my family. I hurt. I don't know how to handle this.
What advice do you have?
What helps make this not the scariest thing?
Don't dream it, Be it.

crazylife
Posts: 251
Joined: Wed Dec 30, 2015 11:29 am

Re: Newly diagnosed and scared stiff

Postby crazylife » Wed Jun 22, 2016 3:20 pm

So sorry you are going through this! Can you get to a major cancer center? Also, I think a CT scan before surgery is fairly common.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

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kellywin
Posts: 483
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Newly diagnosed and scared stiff

Postby kellywin » Wed Jun 22, 2016 3:33 pm

You're feelings are like so many of us felt when that first diagnosis hits. It's probably the hardest and scariest part of the journey you are going to be on. But personally, I think you need to let your guard down, at least to your husband, don't keep it bottled up, that won't help. You don't need to be brave, you're human, you're scared, numb, devastated, angry, I could go on and on. That's normal. As I said, this is going to be the scariest part. Don't be afraid to ask for something to help you cope, something like Xanax can be a live-saver. A couple of things I think you need to consider right now is making sure your docs order a CT scan to check the rest of your organs and make sure you have a board certified colorectal surgeon.

Good luck. I know it's hard. Everyone here gets it and there's a wealth of information shared here.
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Newly diagnosed and scared stiff

Postby midlifemom » Wed Jun 22, 2016 3:45 pm

This is scary.
But, let your emotions out, at least to your husband. It could help. If not to your hubby, at least to someone.
Make sure your surgeon is colorectal surgeon, not a general surgeon. You want the best care you can get.
Come back and ask questions , we have lots of info to share. ((Hugs))
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

DarknessEmbraced
Posts: 3085
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Newly diagnosed and scared stiff

Postby DarknessEmbraced » Wed Jun 22, 2016 4:09 pm

Welcome to the board and sorry for the reason you're here. *hugs* It's natural to feel scared.*hugs* It's good to either open up to your husband and to someone else. When I was first diagnosed I was in such shock that I felt like the ground had fallen out from beneath me. I don't know what I would have done without my boyfriend and this board. A ct scan definitely needs to be performed and blood tests to check your CEA(tumor marker) levels. I would write down all the questions you have for the doctor. I would also if possible bring someone with you when you see your doctor. There is a lot of support and knowledge on this board. Good luck with your surgery!*hugs* We are here for you!
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

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juliej
Posts: 2852
Joined: Thu Aug 05, 2010 12:59 pm

Re: Newly diagnosed and scared stiff

Postby juliej » Wed Jun 22, 2016 4:43 pm

As others have said, please make sure you go to a board-certified colorectal surgeon, preferably at a major cancer center. And make sure to get a CT scan to see if there is spread to other organs. Also, since you have a family history of colon cancer, make sure you are tested for Lynch syndrome, a genetic condition that is passed from generation to generation.

I know how you feel. I was gutted by the news. Thoughts like “What do I want for lunch today?” were quickly replaced with “How did I not realize I was so sick? I’m too young for this! What stage is it? How long do I have? How do I tell my family?"

The next few weeks will become an exhausting series of medical appointments and waiting for test results. There will be lots of paperwork, appointments, and test results to keep track of. If at all possible, have another person, a close friend or family member, accompany you to your appointments. Sometimes it's easy to shut down while the doctor is talking and miss important information. That's when the extra person comes in handy. They can write notes or just remind you of what the doctor said afterwards.

I also recommend using a notebook or a 3-ring binder to keep track of all your medical information. Get colored tab dividers for the notebook and make several sections: Schedules (dates of appointments you have had, when the next ones are due, etc. ), Test Results (CT, PET, pathology, etc.), Medications (drug names, dosage, schedule, etc.), Medical History (handy when you're filling out forms that ask for that info). Being organized gives you a sense of control and helps you feel more prepared for doctor's appointments.

Remember that the common factor in all of this is you. It’s your health. It’s your life. You've just been told what no one ever wants to hear. Give yourself a few weeks to process everything. Cry, vent, scream, let it all out. It's unfair. It sucks. There were days at the beginning when I didn't even want to get out of bed. But then I got in battle mode and fought the cancer with everything I had.

I know you don't want to be here, but you have found a great source of support and information in this forum. Talk to us when you get sad or upset or have questions or need advice. We're here for you!

Hugs to you!
Julie
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 7/13/2018, CEA<1

janklo
Posts: 1565
Joined: Wed Mar 03, 2010 11:10 pm
Facebook Username: JanetKlostermann

Re: Newly diagnosed and scared stiff

Postby janklo » Wed Jun 22, 2016 5:05 pm

You did the hardest part--you have family history and you got the colonoscopy. The thing I would say is if you have to get cancer, now is the best time in history to get it. Scientists are so so close to way more effective treatments and even a cure. You just have to get through the surgery and get your pathology, then you'll know more. You will get through this!

Then come back here where you have very knowledgeable people and get advice. The chemo for colon cancer is very manageable. I've only observed as a caregiver, but I'm confident you will get through it (if Chemo is needed).

Keep us informed motherducky.
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

rp1954
Posts: 1341
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly diagnosed and scared stiff

Postby rp1954 » Wed Jun 22, 2016 5:20 pm

The more you read, the more options you have this early in the journey. We found extra, nonstandard options to be of great value against the cancer, starting on the first day/week, several weeks before surgery.

Perioperative cimetidine, extra blood work, potent supplements, and celecoxib are all things we used early on to great advantage. They have saved us lots of money and misery. You might read here about ADAPT for a possible future chemo backbone without the side effects of Folfox and Folfiri.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

michiganBarb
Posts: 1
Joined: Wed Jun 22, 2016 9:16 pm

Re: Newly diagnosed and scared stiff

Postby michiganBarb » Wed Jun 22, 2016 9:25 pm

my husband has been diagnosed with colon cancer stage 4 that spread to the liver,he had a colonostopy and got a ruptured colon,it was a terrible time,He starts chemo again next week.he has lost a lot of weight, I dont know what to expect lm scared for my husband

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MikeManess
Posts: 83
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Newly diagnosed and scared stiff

Postby MikeManess » Wed Jun 22, 2016 9:44 pm

Take a deep breath.

I'm 60 and my cancer sort of mirrors yours. Large mass in right ascending colon. It's scary. I'm 60 and this is my first brush with mortality. And you know what? It's not as scary once you accept that you have cancer. It's a concern, but it's far harder on my wife than it is for me. Why? Because I believe in my heart that I'm going to beat this monster. I'm sorry, I don't believe .. I KNOW!

First steps .. like others have said, don't go with a general surgeon. Sure, they can do it, but what you need right now - especially with a large mass - is a colorectal surgeon. Someone that does this type of surgery every day of the week. I'm lucky, I live near Dallas and we have a really good cancer center at UT Southwestern. One of the best in Texas. My surgeon is a surgical oncologist, and I also have a medical oncologist (for the chemo). The team approach will give you the best results.

Once you meet with a doctor (in my case, the first meeting was with the medical oncologist) he'll probably want a CT scan to have some kind of idea about what you're facing. Next, surgery. Surgery is going to happen, but you know what? Surgery is not scary at all. I was given a drug in pre-op and wheeled out to surgery. I don't remember ever arriving in surgery. All I remember is part of the ride and then being woke up in post-op. Very easy.

Recovery from surgery is next. Two suggestions that you'll find elsewhere on this forum .. walk, walk, walk, walk, walk .. and breathe into the little thing they'll give you. I spent 3 days and 2 nights in the hospital. And once home, I kept walking until I was so sore I could hardly walk. But it helped me recover very quickly.

Beyond that will depend on your particular case. But the best suggestion I can give, and others will agree, is to stay away from Dr. Google. It's easy to start checking statistics, etc, but those statistics are wrong for a number of reasons. First, a 5 year average is from people that had cancer diagnosed 5 years ago and more. Treatment has come a ways since then. And it will continue to improve over the next few years. Next, many of those did not receive treatment in a timely fashion. And many were not treated in a cancer center. All of that, plus other factors, skews the survival rates downward. So don't get caught up in that stuff. It'll make you very depressed.

I'm just finished my third round of chemo and it's not bad. I've had several CT scans and a PET scan. And I'm still here and I'm getting results from the chemo. Surgery later to remove tumors in my liver and lung. And possibly a bit more chemo. And then, if all the I's are dotted and T's crossed, plus the stars align correctly, I'll be cured. Or at least reach that plateau of No Evidence of Disease. That's the only results I will accept. Anything less is unacceptable.

So take another deep breath. You're just getting started and have quite a journey ahead of you. Go into it with the attitude that you can do this and you will survive. I believe I can beat it, and I believe you can beat it, too.

Hang in there. We're all in this together.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Newly diagnosed and scared stiff

Postby Pita » Thu Jun 23, 2016 2:13 am

Sorry you're here md, but it's a good place to be and the responses you've received should really help you out.
Only a few things I want to say, one being you need a confidant that you can tell all to, you'll find that sharing makes you feel stronger and not alone. Also have a breakdown it will help relieve the stress on you. I only do this when I'm alone, my husband is more stressed then I am and he doesn't need to see me fall apart. I don't do it very often, maybe once a month then I pull my big girl pantries up, wash my face and grab my cat and we go take a nap. Feel so refreshed when I wake up and ready to fight again for my life.
Good luck to you and your treatments...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

Utwo
Posts: 203
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Newly diagnosed and scared stiff

Postby Utwo » Thu Jun 23, 2016 7:26 am

There is no need to worry untill you received your first histology report.
Just follow all useful advice in this thread.
Accept that it's not a black and white binary world and be prepared to receive a lot of conflicting "yes ... but" messages.
Learn to live with such uncertainty.

Good luck!
Last edited by Utwo on Thu Jun 23, 2016 6:21 pm, edited 1 time in total.
58 yo male at diagnosis - T1bN0, 0/15 lymph nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 CT scan, blood test ...
05/2016 "prophylactic" laparoscopic right hemicolectomy with a few complications (bleeding, leak, infection)
06/2017 CT scan (lower body), colonoscopy OK; CEA = 1.6

Colon King
Posts: 52
Joined: Tue May 17, 2016 9:13 pm
Location: Canada
Contact:

Re: Newly diagnosed and scared stiff

Postby Colon King » Thu Jun 23, 2016 9:33 am

I hope you can find solace in the fact that there are strangers around the world who care and share deeply in your stresses about your health.
As much as possible, take it one day at a time.
39 year old male, Canada.
Husband; father of 4.

5/16/16: 3cm x 4cm Intermediate Serrated Polyp found by fluke (elective colonoscopy)
5/20/16: CEA 1.7 (phew)
06/10/16: EMR complete
06/16/16: Biopsy result: Fragments of tubulovillous adenoma; negative for high grade dysplasia
09/08/16: Follow up Colonoscopy scheduled.

My blog: https://colonking.com

thehunter
Posts: 65
Joined: Thu May 19, 2016 10:13 am

Re: Newly diagnosed and scared stiff

Postby thehunter » Thu Jun 23, 2016 10:14 am

Hey motherducky,
sorry you have found yourself here but you are not alone - and there are many success stories. More each day..
Take one day at a time.
Keep fit healthy and happy.
Try not to think too far ahead.

the guys in here will be happy to offer you loads of advice and try and let the doctors worry about beating your cancer.
Mar 15 stage 3 colon cancer
Apr 15 Colon resection
Cancer found LN & in fat in back
Jun 15 - 6 months chemo oxi & 5fu
Dec 15 scan : colon clear but mark on liver
Feb 16 mark on liver is a tumour
Feb 29/16 - liver resection
1 Tumour liver & attached to diapgrham & LN
May 16 - pet scan - peritoneal seeding, pelvic mass & marks in lungs & Lymph node by collarbone.
May 16 - TX: IRINOTICAN & 5 FU
Aug 16 chemo stopped. Not working.
lynch syndrome negative
KRAS Mutation present

motherducky
Posts: 2
Joined: Wed Jun 22, 2016 11:24 am

Re: Newly diagnosed and scared stiff

Postby motherducky » Thu Jun 23, 2016 3:29 pm

Thank you so much everyone! I completely lost it on my way home from work yesterday. Music had always been one thing that calms me. Yesterday, it knocked me in the dirt. I talked to a person today from Cancer treatment centers of America. She was very helpful but now I'm worried about the surgery Monday. She seemed to think that I don't have the full picture yet as there are some tests that my doctor has not done. It's all so overwhelming but my husband is amazing. I don't know how I would handle this without him. And all of your advice is helping read my mind. I thought I was invincible... that I would decide one day that it's time and death would take me. I really never thought that it might try to sneak in the back door, so to speak.
Thank you all again for your words.
Don't dream it, Be it.


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