Just found out I have cancer

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ScaredButGottaWin
Posts: 11
Joined: Sat Nov 18, 2017 5:53 am

Just found out I have cancer

Postby ScaredButGottaWin » Sat Nov 18, 2017 6:16 am

Male, 40 y/o. Had a colongoscopy yesterday, following abdominal pain and blood in stool. They found a large mass in the descending colon. Awaiting biopsy, but doc said it is almost certainly cancer.

I am scared, and frightened of the future. I know I am supposed to be positive, but dont know how.

How do I deal with telling people at work, etc? Should I just go with local hospital (which is fine), or seek out some colon cancer expert? I dont know where to begin.
Colonoscopy Nov ‘17
Peri Mets discovered Dec ‘17
CEA 2.4
Start Chemo Dec '17 - FOLFIRI plus Avastin

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Just found out I have cancer

Postby Aqx99 » Sat Nov 18, 2017 12:42 pm

First of all, BREATHE. There is a lot of information to process all at once. My gastroenterologist referred me to a colorectal surgeon after finding my rectal cancer. My surgeon was the one who set me up with my medical oncologist and radiation oncologist. There is a standard treatment that they start with for each kind of cancer, so going with a local hospital is perfectly fine if you have confidence in them. I have been treated locally and feel that I have gotten top notch care. You could always get a second opinion elsewhere if you are concerned at all about the plan of care. I did not get a second opinion, I started treatment immediately because I was happy with my medical team. As for telling your coworkers, etc. that is up to you. I work with a small group of people, so I told each of them individually because I knew word would get out. I have been open and honest with them the entire time. If you are feeling overwhelmed, I would recommend seeing if your cancer center has an oncology counselor on staff. I have been seeing the one at mine for the last couple of months and she has helped me immensely.

Here is the NCCN treatment guide for colon cancer, it explains everything you need to know. It also has some suggestions for questions to ask your doctors:
https://www.nccn.org/patients/guideline ... index.html
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
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 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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susie0915
Posts: 818
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Just found out I have cancer

Postby susie0915 » Sat Nov 18, 2017 1:02 pm

First, you will have to probably have a ct scan to check if there is any spread. You will need to be staged in order to determine your treatment plan. I was referred to a surgeon the next day, and he also referred the radiation oncologist and oncologist. I did seek a second opinion. Even though the treatment was going to be the same I wanted to talk to other doctors. Especially regarding the surgery, mine was rectal cancer so surgery options were pretty important to me. I did end up going with the second hospital, as I just felt more confident in the team of doctors and the hospital. I know you are overwhelmed, but once you talk to your doctors, know where you are staged, and have a plan of treatment, you will feel more in charge. I'm sorry you have to deal with this, but know there are many here that are doing very well after treatment for all stages.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Beckster
Posts: 263
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Just found out I have cancer

Postby Beckster » Sat Nov 18, 2017 1:23 pm

I agree....TAKE A DEEP BREATH!! Your mind right know is trying to comprehend what happened. Once you get all your information, you will be able to make decisions.

When I woke up from my first routine screening, I was told b my GI that he found a cancerous lesion. :shock: Before I left, he gave me paperwork for a colon-rectal surgeon, blood work, CT scan and chest xray. By the time the biopsy came back to confirm, all of my tests were done and I went into surgery the following week.

You came to the right place...the people on this forum will help you through the process....
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
lymph nodes: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
Clear Colonoscopy 10/17 :D

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peanut_8
Posts: 2240
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Just found out I have cancer

Postby peanut_8 » Sat Nov 18, 2017 2:28 pm

At this point, it seems like the best plan will be to find a board certified color rectal surgeon. I'm including a link which will assist you.

http://www.abcrs.org/verify-a-physician-2/

Sorry about your diagnosis. The folks here on Colon Talk are friendly and knowledgable. Please keep us apprised of your progress, and let us know if you have any questions.

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

ScaredButGottaWin
Posts: 11
Joined: Sat Nov 18, 2017 5:53 am

Re: Just found out I have cancer

Postby ScaredButGottaWin » Sat Nov 18, 2017 6:56 pm

Thank you all so much for your advice and support. I feel like I could run through a wall to do whatever surgery or chemo I need to do. It's the mental game that seems the toughest. CT scan Monday, meet with oncologist surgeon in 10 days. I will keep y'all updated.
Colonoscopy Nov ‘17
Peri Mets discovered Dec ‘17
CEA 2.4
Start Chemo Dec '17 - FOLFIRI plus Avastin

heiders33
Posts: 250
Joined: Sat Nov 04, 2017 11:08 am

Re: Just found out I have cancer

Postby heiders33 » Sat Nov 18, 2017 8:55 pm

I told my boss and my two direct reports and HR right away, so that they would know why I would be out a few days for tests. I told a few other coworkers in stages, either by text or in person. The rest of my coworkers I told via a written update that was read by my boss at a staff meeting, after I was already in the hospital for surgery. It’s up to you who you want to tell, although definitely communicate with your boss and HR. I wanted my coworkers to know why I would be out of the office for five weeks, especially to spare my direct reports a constant barrage of questions. I found that when I told people in person, I got really nervous. I recommend designating someone to tell others for you.

Keep coming back to this board for support! It’s been a lifeline for me.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI inconclusive
August 2018: PET abnormal, liver enzymes normal, CEA 2.4

Basil
Posts: 243
Joined: Thu Mar 16, 2017 12:33 pm

Re: Just found out I have cancer

Postby Basil » Sat Nov 18, 2017 9:33 pm

ScaredButGottaWin wrote:Male, 40 y/o. Had a colongoscopy yesterday, following abdominal pain and blood in stool. They found a large mass in the descending colon. Awaiting biopsy, but doc said it is almost certainly cancer.

I am scared, and frightened of the future. I know I am supposed to be positive, but dont know how.

How do I deal with telling people at work, etc? Should I just go with local hospital (which is fine), or seek out some colon cancer expert? I dont know where to begin.


I am also forty years old and had the same days you are having back in March, when I was diagnosed with the same symptoms. First and foremost, I was treated and am now cancer-free (or at least a resident of NEDville). Odds are you will be too in six months or so.

Second, work situations are different depending on your situation, but I couldn’t figure out a better way than just emailing my boss with, “No easy way to say this so I’m just going to say it - I have cancer and will be treated to beat it. I’ll get with you as soon as I can to discuss logistics.” That worked for me.

Third, and most importantly, you need to really consider your best treatment options. You should not “go with a local hospital” if you can get treated at a major cancer center. You may be fine with a local hospital or you may be at a big disadvantage. You won’t know until you are “pot commited” so to speak. It is axiomatic, but the best hospitals will likely give you the best treatment. Routine colon cancer can be treated at a local hospital, so long as it’s routine. If it’s not, you want to be in the care of the best doctors you can find.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear

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Maggie Nell
Posts: 745
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Just found out I have cancer

Postby Maggie Nell » Sat Nov 18, 2017 10:56 pm

Last time I looked, 'supposed to be positive' wasn't a law. Having confidence and
trust in your medical team of surgeon and oncologist, and their expertise and experience
in producing optimal outcomes for your survivorship is far more important.

Once you get your biopsy results, everything will fall into place and when it comes
to telling people initially, only on a 'need to know basis' is a good rule of thumb. Your
employer needs to know that you will be in hospital and incapacitated for a while as
you recover.

It's a devastating diagnosis, the shock has to run its course and in the alphabet, between
C for cancer and P for positive there is F for fuck, I for I'm gonna die!, N for No way and...
you get the idea? Don't skip a letter - you can't go straight to P.

Cross-fingers that your biopsy results return a low-stage pathology for your mass.
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Utwo
Posts: 204
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: Just found out I have cancer

Postby Utwo » Sat Nov 18, 2017 11:23 pm

ScaredButGottaWin wrote:I am scared, and frightened of the future. I know I am supposed to be positive, but dont know how.
Please do not feel obligated to feel positive.
According to the latest science, it's OK to be said.
Your original intensity of emotions would subside soon.

ScaredButGottaWin wrote:How do I deal with telling people at work, etc?
I did not tell anybody at my work about my diagnosis. I just told my supervisor that I would have a schedulled surgery and would be back in a week or two.
I was back to work in five weeks due to a few complications.
I even did not share this diagnosis with my HR.
In our company management of Short Term Disability is outsoursed to a third party.
Officially my diagnosis should not be shared with my HR.

Can I assume that you are from the US?
In this case your privacy should be protected the same way.

You need to decide what to share and when.

Considering your young age, I would not recommend sharing of such info until you have chemo/radiation scheduled.
If you do not need chemo/radiation, you may keep your diagnosis secret from your coworkers and your supervisor.
Welcome to the 21st century! :)
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

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O Stoma Mia
Posts: 1364
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Just found out I have cancer

Postby O Stoma Mia » Sun Nov 19, 2017 12:38 am

ScaredButGottaWin wrote:.. CT scan Monday, meet with oncologist surgeon in 10 days...

Ten days seems to me to be a long time to wait. I'm sorry that you have to go through such a long period of uncertainty. Once they have the information from the scans they will be able to come up with an initial staging, and from there they can map out a tentative plan for treatment.

The main unknown right now is whether you have any remote metastases (e.g., in liver, lungs, etc.). If you do, then this will require Stage IV first-line treatment. If you don't have any detectable remote metastases, then you are in a different category of treatment that involves surgery followed by adjuvant therapy.

Since the large mass is in the colon and not in the rectum you will not be having any pre-surgery radiation. Thus, the next expected intervention for you would probably be the surgery to remove the primary tumor and the nearby lymph nodes. Then after the surgery there will be a pathology report on the tumor and the local lymph nodes, and from this they will be able to come up with your final staging. All of this takes several weeks to complete.

In the mean time, you could have a look at the TNM staging definitions so that you are prepared to discuss your staging and proposed treatment plan with the surgeon and oncologist.

Also, you could spend some time checking out the qualifications of the surgeons at your local hospital, and looking for the nearest major cancer center. You may want to be treated at a major cancer center rsther than your local hospitsl.

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: Just found out I have cancer

Postby rp1954 » Sun Nov 19, 2017 1:53 am

We used Life Extension's articles to immediately start "first aid for CRC" and gain important opportunities that conventional medicine hasn't recognized yet, within the first days and weeks. This worked well for us, despite what turned out to be stage 4b, confused information, delays, and some drs that gave up too soon or were too circumspect.

Our CRC first aid plan:
1. Cimetidine and high potency immune supplements, with some extras beyond LEF to immediately launch an immune attack, reduce surgical mets and complications, and remove gross deficiencies e.g. vitamin D.
2. Extra bloodwork. You can't measure, plan, treat or talk about what you can't see. I wheedled the first improvement out of the surgeon but just ordered and paid cash for extra blood tests, most of the time after that.

"Investment in/of a lifetime"
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

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O Stoma Mia
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Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Re: Just found out I have cancer

Postby O Stoma Mia » Sun Nov 19, 2017 2:05 pm

ScaredButGottaWin wrote:Thank you all so much for your advice and support. I feel like I could run through a wall to do whatever surgery or chemo I need to do. It's the mental game that seems the toughest. CT scan Monday, meet with oncologist surgeon in 10 days. I will keep y'all updated.

You haven't mentioned anything about blood tests. Before you start any kind of treatment or intervention, you will need to have a comprehensive battery of blood tests to establish a baselne showing where you are now with respect to normal values. These tests should include CEA and other relevant tumour markers. Also, be sure to explore all of the links in rp1954's post because they contain important information on issues to be addressed before the start of treatment.

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chrisca
Posts: 233
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Re: Just found out I have cancer

Postby chrisca » Mon Nov 20, 2017 4:46 am

Some good news: Descending colon is one of the better places for a tumor to be. If caught early, you may have little to no long-term consequences.
Get baseline testosterone checked so you know if you'll need supplementation post-chemoradiation. Also if the radiation field is close to the testes, ask for gonadal shielding. (a lead glove over the jewels.)
Also get baseline levels for folic acid, homocysteine, thyroid as chemo can affect these.
During chemo, eat a blander diet and avoid your favorite foods! Chemo can cause long-term food sensitivities and it's better to adopt a different diet until it's over to minimize the chances of not being able to eat your favorites in the future.
Choose your surgeon carefully. Once you know your treatment plan, we can provide more details on what questions to ask.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 6 years

Deb m
Posts: 417
Joined: Tue Jan 14, 2014 10:08 am

Re: Just found out I have cancer

Postby Deb m » Mon Nov 20, 2017 9:35 am

The anxiety your feeling now is very normal. Once you get the whole picture and find out exactly where things stand and what needs to be done you will feel a bit more in control. I started feeling better when I knew things were being done to kill the cancer . The worst is knowing it's there, and nothing is being done to start killing it yet. Remember that colo-rectal cancer is one of the slowest growing cancers there is, so you have time. I'm a big advocate of second opinions, they almost 100% of the time prove to be beneficial in some way. Even if you seem comfortable with the team you have now, I would highly recommend a second opinion from a MAJOR cancer center. It's more effort on your part when you already feel overwhelmed, but it will , if nothing else, give you GREAT peace of mind down the road that you are doing the correct thing. Sometimes you only get one shot at this, so make sure it's correct! We went to MDA. I have nothing but excellent things to say about the docs and the whole place. If you need any information, let me know and I'll try and help. Famous last words, try and relax, and I will be hoping and praying that it's a early find.

deb


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