New Member here needs support !

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jenkinsjacqueline73
Posts: 1
Joined: Sun Apr 15, 2018 9:39 pm

New Member here needs support !

Postby jenkinsjacqueline73 » Sun Apr 15, 2018 9:53 pm

I am new member, confused, feasted, feeling sad. I had a colonscopy on Friday. Dr. came in and said he had bad news, i have cancer. I am scheduled to have lab work and catscan on tomorrow. I have 4cm mass 7cm, don't know what is what, my mind in a fog.

Caat55
Posts: 284
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here needs support !

Postby Caat55 » Sun Apr 15, 2018 10:58 pm

jenkinsjacqueline73 wrote:I am new member, confused, feasted, feeling sad. I had a colonscopy on Friday. Dr. came in and said he had bad news, i have cancer. I am scheduled to have lab work and catscan on tomorrow. I have 4cm mass 7cm, don't know what is what, my mind in a fog.



I am sorry that you have found our group. We have all felt that fog. The people here are great, so kind and knowledgeable. Hang tight.
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

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Robino1
Posts: 417
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New Member here needs support !

Postby Robino1 » Sun Apr 15, 2018 11:25 pm

jenkinsjacqueline73 wrote:I am new member, confused, feasted, feeling sad. I had a colonscopy on Friday. Dr. came in and said he had bad news, i have cancer. I am scheduled to have lab work and catscan on tomorrow. I have 4cm mass 7cm, don't know what is what, my mind in a fog.


I'm so sorry that you are going through this. The first time we hear that diagnosis, it shakes us to our core. Just know that it can be beatable. You are just starting this journey, one that none of want to take, and you've found the best place to start it at.

As you get more info, you will learn terms we never, ever, wanted to know. The more you learn will help you on this path.

Welcome to the colon club. There are many very knowledgeable people here. And they are nice too :)

Take a deep breath and try not to panic.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8
BRAF V600e

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O Stoma Mia
Posts: 1202
Joined: Sat Jun 22, 2013 6:29 am
Location: Budapest

Re: New Member here needs support !

Postby O Stoma Mia » Mon Apr 16, 2018 2:41 am

jenkinsjacqueline73 wrote:I am new member, confused, feasted, feeling sad. I had a colonscopy on Friday. Dr. came in and said he had bad news, i have cancer. I am scheduled to have lab work and catscan on tomorrow. I have 4cm mass 7cm, don't know what is what, my mind in a fog.

Welcome to the Forum and I'm sorry you have to be here.

In the next few weeks, there are a few things you can do that can have an impact on your treatment plan and future prognosis. If you start working on these things now, then you will begin to have an action plan in place, which, in turn, will help reduce your anxiety level.

  1. Ask for a written copy of your colonoscopy report so that you can have it as reference, especially the part on the pathology report of the biopsy.
  2. Find out exactly where the large tumor is located, because it makes a difference. (Is it 7cm from the Anal Verge? If so, it would be Rectal Cancer)
  3. Ask when they will have the results of your CT scans (this is to check for possible spread to lymph nodes, the liver or the lungs) and ask for a printed copy of the CTscan report.
  4. Ask when they will have enough information to establish a tentative TNM Staging level for you, and if so, what it is. (They might have to do an MRI scan or another kind of scan in order to do this.)
  5. Try to find a board certified colorectal surgeon in your area in case you need surgery for cancer. This is important, especially if the large tumour is in the rectal area.
    How to Find a Board-Certified Surgeon http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280
  6. Look into the suggestion already given about getting a prescription for Cimetidine (Tagamet) before surgery. Try to talk to surgeon about getting permission to do this because it might help prevent further spread of cancer.
  7. Also, make sure that your lab work involves a good set of blood tests done before they start any sort of treatment. You will need to have a good set of baseline values for the major lab tests, including the CEA tumor marker, so that they can tell later on whether or not you are improving.
  8. Read the prior post below so that over the next couple of weeks you can tell which of the four primary diagnosis groups (RC:MØ), (RC:M+), (CC:MØ), (CC:M+ ) you fall into with your initial diagnosis:
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53422#p422956
  9. Also, when you get enough information together, you can create and update a signature so that others here can know where things stand from week to week
    How to add/edit your signature:
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=414489#p421597

NHMike
Posts: 1106
Joined: Fri Jul 21, 2017 3:43 am

Re: New Member here needs support !

Postby NHMike » Mon Apr 16, 2018 9:01 am

jenkinsjacqueline73 wrote:I am new member, confused, feasted, feeling sad. I had a colonscopy on Friday. Dr. came in and said he had bad news, i have cancer. I am scheduled to have lab work and catscan on tomorrow. I have 4cm mass 7cm, don't know what is what, my mind in a fog.


I was in your position last summer (bigger tumor, a bit lower). A lot of us here have been in your position or were diagnosed recently. You're going to get more tests to rule out spread and find out other things. This is all scary, scary stuff but we have been there, either ourselves or with our spouses, parents or other relatives. Survival rates for CRC are a lot better than they were ten years ago. Treatment is a tough process but we'll help you through it.

Please feel free to ask questions, either specific or general; and we'll do our best to answer them.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
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; 12/20 1.4
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 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

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juliej
Posts: 2801
Joined: Thu Aug 05, 2010 12:59 pm

Re: New Member here needs support !

Postby juliej » Mon Apr 16, 2018 5:49 pm

Jacqueline, it's completely normal to feel sad, angry, disbelief, etc. Take time to deal with the news. When I was first diagnosed I was in complete shock and felt like I was outside my body. I couldn't think. I couldn't sleep. I could hardly breath.

These first few weeks are scary but you can do this! You'll actually feel less rattled once your treatment starts and you have a plan of action. Lean on us for support as you need to. There are things we understand that others just don't.

If you have a close friend or family member, ask them to go to appointments with you. It's easy to be overwhelmed by all the new terminology and only hear half of what the oncologist is saying. Having an extra person in the room is helpful for remembering what was said after you get home. Also, get a notebook that can hold all your CT, PET, pathology, and blood test results. Ask for copies of everything and put them in it.

Hope this helps!
Juliej
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 12/13/2017, CEA<1

rp1954
Posts: 1286
Joined: Mon Jun 13, 2011 1:13 am

those first steps

Postby rp1954 » Mon Apr 16, 2018 8:14 pm

I hope you'll consider our experience and actions immediately following diagnosis until surgery. A bad situation might be dramatically changed by patients through immediate actions in these first days. Our story.

We added strong, inexpensive chemistry and immune support from the first days after diagnosis, to make a U turn. We've had unusually good results compared to normal, before and after surgery. Each step, after the first surgery and by the second surgery, we used even stronger and better off label chemistries.

We added extra blood tests when their CRC uses became known to us, because the default standard tests weren't enough to guide us successfully. These tests before surgery(s) were useful even later, and can be a literal lifesaver for a few dollars more. Informed, more specialized use(s) actually saved us a lot of cash costs.

These Life Extension articles on colorectal cancer specifically; cancer generally; surgery article and special report were particularly helpful in the weeks between diagnosis and surgery.
Last edited by rp1954 on Mon Apr 16, 2018 11:54 pm, edited 1 time in total.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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horizon
Posts: 1459
Joined: Tue Apr 12, 2011 10:10 pm

Re: New Member here needs support !

Postby horizon » Mon Apr 16, 2018 9:07 pm

juliej wrote:Jacqueline, it's completely normal to feel sad, angry, disbelief, etc. Take time to deal with the news. When I was first diagnosed I was in complete shock and felt like I was outside my body. I couldn't think. I couldn't sleep. I could hardly breath.

These first few weeks are scary but you can do this! You'll actually feel less rattled once your treatment starts and you have a plan of action. Lean on us for support as you need to. There are things we understand that others just don't.


All of what Julie said is so true! It's just a complete shock when this happens to you. Waiting for results and waiting for the treatment to start was so hard. The people here definitely understand how it is.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

CAGirl
Posts: 39
Joined: Fri Aug 25, 2017 4:55 pm

Re: New Member here needs support !

Postby CAGirl » Tue Apr 17, 2018 12:48 pm

SUPPORT is here!
As others have said, the first couple of weeks after diagnosis are the scariest. I kept feeling like I was caught in an ocean wave and couldn't come up for air. You WILL feel better when you have a plan of action and notebooks to fill, etc. I was in your shoes a year ago. Actually, about to start chemo right about now. I got through all 12 rounds of Folfox AND took care of (then) 3 and 6-year-olds. And I am no Superwoman Overacheiver type at all! It was tough but manageable.
IT IS NOW part of last year, a not-so-distant memory, but I have moved on and am living a cancer-free 2018.
Take it one step at a time. Do what you need to get informed and take care of yourself and get rid of this thing.
How was your CT scan and bloodwork?
I was Stage 3C, but I know there are even Stage 4s on here who are keeping it under control.
The people on this site are tremendous and loving and knowledgeable and inspirational. Glad we have it.
Now, I gotta get back to my "back-to-normal" life. There's a very good chance you will be here soon, too!
Last edited by CAGirl on Wed Apr 18, 2018 11:56 am, edited 1 time in total.
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-month CT scan post chemo 11/17 slightly larger lung nodule (incr. from 7mm to 8 or 9mm)
follow-up CT scan 3/18 - NED!

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WriterGirl1969
Posts: 489
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: New Member here needs support !

Postby WriterGirl1969 » Tue Apr 17, 2018 4:09 pm

jenkinsjacqueline73 wrote:I am new member, confused, feasted, feeling sad. I had a colonscopy on Friday. Dr. came in and said he had bad news, i have cancer. I am scheduled to have lab work and catscan on tomorrow. I have 4cm mass 7cm, don't know what is what, my mind in a fog.


So sorry that you had to find us, but so very glad that you did. As others have already said, the people here are amazing, and full of information, knowledge and support. This group made a real difference in my life when I was diagnosed. I doubt that any of us will ever forget that day. The shock, the anguish... and this time of waiting is probably the hardest part. Just remember to breathe. You'll know more as you get test results, and you can go from there. We'll be here to help you sort through the information, the results, and whatever else you might need.

Hugs,
Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”


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