New member first post

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4packcan

New member first post

Postby 4packcan » Sat Jul 02, 2016 7:11 am

Hello,
Newly diagnosed on weds. With 4cm ulcerated tumor in sigmoid that is partially blocking colon. I went in totally expecting to be told it was internal hemoroids and polyps. I had blood work and scans Thursday/Friday and now just waiting for surgeon appt on weds of next week. The waiting and not knowing is making me crazy. One minute I am fine the next I am crying. Trying to keep it together until we know more. Aside from my husband, no one else knows. We thought it best to have the whole story before telling our kids. Any advice at this point would be great. I hope you are doing great and are well on the other side of this issue.


combined your second post here :
Hi.,
New to the board. Diagnosed weds with 3cm tumor in sigmoid. Scans were done yesterday- right before long holiday weekend. The wait and not knowing is awful. At this point all I know is that the dr performing colonscopy said looks like stage 3 and far enough up that the section can be removed followed by chemo. At this point hoping and praying for clear scans. I don't meet any of the risk factors so when I stated seeing a little trace of blood on tissue occasionally-and occasional stomach aches- I chalked it up to hemoroids or constipation. Kicking myself for not going to Doctor sooner. I didn't go until my stomach started hurting sometimes after eating. I guess all I can do is take it one day at a time now. Holding off on telling our kids until we know more.
Last edited by 4packcan on Sat Jul 02, 2016 3:49 pm, edited 1 time in total.

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CRguy
Posts: 10264
Joined: Sun Feb 10, 2008 6:00 pm

Re: New member first post

Postby CRguy » Sat Jul 02, 2016 2:14 pm

Welcome to the forum.

Just FYI we have started a new topic for you, so you will get more feedback specific to your own situation.

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: New member first post

Postby NateA » Sat Jul 02, 2016 3:09 pm

Heads up, you're going to be okay!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

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Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: New member first post

Postby Marylandmaniac » Sat Jul 02, 2016 4:02 pm

4Packcan,

You and I are going through the same thing. I also was diagnosed on Wednesday. Mine is a 7cm ulcerating tumor in the proximal rectum. I thought I had hemorrhoids too. I had no symptoms other than seeing blood on the tissue. Luckily I went to a GI recommended from a good friend. He too thought it would be hemorrhoids but when he heard my dad died of esophageal cancer he got very serious. He said there is a genetic link and wanted to scan me. I really went in thinking it would be no big deal and was so shocked when I heard the C word. I have to wait til Friday to get my CT scan because I had a lot of inflammation from the scope and my GI wants me to heal so that the area doesn't look bigger than it really is. The waiting is driving me crazy. But I have created a big support group already and I am determined I will do whatever it takes to beat this. Another member on here suggested a combination of cimetidine and some other supplements to improve immunity before surgery. I am going to check with my doctor on Tuesday but I am thinking I will do cimetidine and Modified Citrus Pectin plus eat a diet full of vegetables and fruits and limit red meat and no processed meats. I figure my diet is the one thing I can control right now and anything I can do to prep it before going through this is good.
I am a 46 year old woman with 2 great kids (17 and 15) that I want to live to put through college, see married and then see their kids. I want to grow old with my husband and look back at this time as the time that brought us closer than ever.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

4packcan

Re: New member first post

Postby 4packcan » Sat Jul 02, 2016 5:38 pm

Yes..the waiting is torture. I am trying not to let my mind wander to the worst outcome and stay off of google. Right now it is just my husband and I that know. We wanted to be able to give my kids the full story with an explanation of how we are going to fight this thing. Next 4th of July hopefully the two of us can share that we are one year cancer free.

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: New member first post

Postby Soccermom2boys » Sat Jul 02, 2016 8:25 pm

Welcome to the club nobody ever wants to join, but you will find some of the best people and advice around with regards to colorectal cancer. Yeah, waiting totally sucks and it's amazing how the brain can so easily derail your thoughts to cancer, cancer, cancer. I imagine it is how we all felt after getting our initial diagnoses, you are totally not alone in that department. While you will most likely be surrounded by love and support from your family and friends, you will also feel so alone because unless they have personally had cancer, it's so overwhelming mentally for anyone else to truly get--and that is what is so great about this forum, we have all been in your shoes and still dealing with the grip of cancer.

Those damn hemorrhoids--they seem to fake quite a few of us out, myself included! So are you dealing with colon cancer correct, if it is in sigmoid? I had rectal cancer so different treatment route, but usually the same chemo drugs (Folfox, etc). Best to go with a colorectal surgeon (board certified) as they specialize in surgery of the colon and rectum and you want to be in the best possible hands to get the best results.

Good idea to wait to tell your kids and the rest of your circle of friends until you know more details and are starting to get more of a plan of action in place. I have two boys who were 13 and 16 at the time of my diagnosis last August and we sat down as a family and talked it out and I always let them know they could ask me whatever whenever. I would like to think it hasn't affected them drastically and if anything, it has helped them to be more caring and empathetic. I want to see them grow up and graduate, marry, start families--that is absolutely what motivates me on my roughest days. And my husband has been so loving and amazing and I want to grow old together and try to repay him in kind for his unwavering love and support.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

DarknessEmbraced
Posts: 3548
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New member first post

Postby DarknessEmbraced » Sat Jul 02, 2016 8:48 pm

Welcome to the board and sorry for the reason you are here!*hugs* It is such a shock when you are diagnosed.*hugs* You feel like the ground has fallen out from under you! I hope that your ct scans are clear!*hugs* We are here for you!*hugs*
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! :)

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: New member first post

Postby AbbyDoo » Sat Jul 02, 2016 8:52 pm

I'm sorry your here.
Attitude, rember Attitude of gratitude and you will beat this.
Getting diagnosed and staged is the scariest part. Once treatment starts you will feel some relief mentally.
PLease stay away from Dr. Google it will just scare you and there is no better info than here. I know it's scary not knowing what the next normal will be and believe me there will be no normal for a while. So go with the flow and take it one day at a time.
It took me along time to accept I had cancer and only told my wife. It took me months before I could say it out loud. I only told my kids and family after chemo/radiation and just before surgery. I think they were hurt by not knowing sooner. Build a good support group and let them help you. You will feel better and they will to.

I think one of the best thing you could do now is walk. It will make surgery easier and recovery easier. I have a 2 year old pup and we walked and trained all threw my treatments. I don't know how I could of done it without her.
Don't give up your steak and enjoy what you like. Doctors might put you on a diet or if you do chemo your going to miss it.
So you might as well enjoy it now.

The only other thing I got for now is: get a note spiral note book. Write down your questions to dr. Take an extra set of ears to appointments and walk.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

4packcan

Re: New member first post

Postby 4packcan » Sun Jul 03, 2016 5:29 am

Thank you all for the support. It means so much. I am thinking my surgery will be fairly soon since the colonscopy indicated partially blocked. I guess I will know on weds. The checked and the surgeon is board certified. So that is good based off of all of your comments.

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HopeForJesse
Posts: 249
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Location: Philadelphia

Re: New member first post

Postby HopeForJesse » Sun Jul 03, 2016 9:08 am

Just reiterating what others have already said. This site will be your lifeline for information and understanding and will arm you with the questions you need to ask your docs as you navigate through the the next months of surgery and treatment. Hugs and prayers for you!
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

mike1965
Posts: 118
Joined: Mon Jan 25, 2016 11:07 pm

Re: New member first post

Postby mike1965 » Sun Jul 03, 2016 4:02 pm

Pray all goes well.
Colonoscopy 09/06/15 Doctor removed polyp
DX - Rectal cancer 09/10/2015 T1M0N0
Surgeon recommended wait and see approach 09/2015
Tumor board recommended LARs Surgery 10/2015
Oncologist and PCP recommended LARs Surgery 11/2015
Seeking 2nd opinion from another Surgeon 01/2016
Having Sigmoidscopy on 02/01/16.
Figured out treatment 02/2016
LARS Surgery 03/2016
Stage 3A T1 N1C M0
Chemo Folfox to begin 04/18/16

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Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: New member first post

Postby Marylandmaniac » Sun Jul 03, 2016 5:09 pm

4Packcan,
Yes we are going to celebrate a year from now, then 5 years, 10 years and so on :) I know some people like to keep things to them selves but I seem to be the opposite. I told some of my close friends as well as family members. I told my sister she needs to get scanned since my doctor thinks this is genetic. Her appointment is scheduled for later this month. I am lucky that I have a friend who is a nurse practioner. She is pretty knowledgeable and is the one who recommended my GI. Talking to her and some other friends have really helped. People don't normally talk about colon cancer but as I have shared my experience I am learning so many people have battled and survived it. One friend told me her step mom not only survived colon cancer but also breast and kidney cancer! And she is still doing great at 73! Another friend of a friend's husband survived stage 4 colon cancer and I am hoping he is at a 4th of July BBQ I am going to tomorrow so I can talk to him. For me just hearing stories of people who have gone through this and have lived for 10+ years just makes me feel better. And this board and being able to talk to people who have or are going through this just helps. I was a complete basket case for the first few days but each day gets a little better.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

Swirdfish
Posts: 290
Joined: Sun Jun 19, 2016 3:57 am

Re: New member first post

Postby Swirdfish » Sun Jul 03, 2016 6:49 pm

Looks like their is a few of us recently diagnosed including me 2 weeks ago at 35. Cancer sucks.

I'm the same partially blocked sigmoid and surgery was the first route they wanted to go. But now they believe chemo and radiation will be better to shrink it for better margins as down near the pelvis bones it gets quite tight. So stoma for me about 5 days ago as radiation will likely enlarge the Tumor initially.

I did the opposite Google became my friend it helped me understand what's going on, made understanding the doctors much clearer, and I read so many other people's posts with similar conditions. Been on google daily I can't help it. But there is so much information on fighting chemo and radiation with side effects which will all be good information when the time comes.

Yes the first few weeks are hard waiting and getting results but I've accepted it now as its not going away. I'm arming myself with all the knowledge I can obtain to help me fight this.

Even though some of us aren't staged yet, all stages are quite treatable with high success rates.

Hang in there it will all be fine.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

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Marylandmaniac
Posts: 234
Joined: Wed Jun 29, 2016 6:22 pm

Re: New member first post

Postby Marylandmaniac » Mon Jul 04, 2016 7:46 am

Swirdfish,

So sorry to hear about what you are going through. WTH??? I am struck by how young people are on here. I think it is great that you are getting as much knowledge as possible. Please share what helps you. I emailed my doctor that I want to start taking Cimetidine along with modified citrus pectin now before I do any surgery. Hopefully he doesn't see any issues with that. Thanks to another member on here I have started researching that and there are many studies that show Cimetidine really helps long term survival after surgery. I am also changing my diet to one that is mostly vegetables, fruits, grains and seafood. I still love meat but will try to keep it to more chicken and turkey. I exercise every day so I will keep that up as long as I can.
DX 6/29/16 7 cm tumor, 10 cm fr av
CT scan ab,MRI abdomen - 9mm spot on liver,CT scan of chest lungs clear
Special staging MRI - clinical staging stage 3b - T3N2M0 (unless spot proves to be met)
8/11 PET scan - spot lit up not nodes
8/16 Port in, 8/17 liver microwave abltn - spot gone
8/23 6 rds FOLFOX started
PET scan 10-13 43% red of tumor and no mets shown
Exam tumor greatly reduced. Surgery 12-14-16.
Clear margins, 7 out of 13 nodes positive. Tumor 2.1 cm
Kras wild, MMS, not MSI. 6 more rds FOLFOX

Big Jay
Posts: 35
Joined: Fri Jun 17, 2016 5:41 pm
Location: Baltimore, MD

Re: New member first post

Postby Big Jay » Mon Jul 04, 2016 8:48 am

Hi all. I recently found out that I'm a member of the club as well. Went to get a colonoscopy to take care of a hemorrhoid and found out it's rectal cancer.

Unfortunately my GI doctor attempted to remove the thing when he shouldn't have and so the resulting swelling is making the staging difficult. However, assuming the enlarged lymphs are actually involved it's probably Stage 3C... assuming the CT results come back clear.

Like you all I'm still in the early stages of this adventure. Met w/ the surgeon last week, probably the Rad Oncologist next week, then planning on the next steps.

I too am disturbed by the number of young club members on the site. I'm only 45 myself. If I'd waited until I was 50, per the guidelines, this thing would definitely have killed me. I recently read somewhere that 17% of new CRC cases are being discovered in patients under 50yo.
DX at 45yo 6/9/16, 2.4cm tumor, 9cm from Anal Verge, 6/27/16
Clinical staging IIIC, CEA 3.1 7/1/16
30x Chemorad 8/5/16 - 9/16/16
CT/MRI/Scope => CCR 11/1/16... Rolling the dice on Watch & Wait
Snake Eyes: Tiny regrowth at scar 11/1/17
LAR 1/17/18: Path = 3mm tumor, 0/12 nodes Med Onc doesn't recommend chemo.
Reversal 4/17/18


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