Question...Cancer and privacy vs openness

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Nik Colon

Question...Cancer and privacy vs openness

Postby Nik Colon » Sat Oct 08, 2016 11:33 pm

Just out of curiosity...Why do you choose to be private or open about your diagnosis?

I personally choose to be open for awareness. You?
Last edited by Nik Colon on Sun Oct 09, 2016 12:04 am, edited 1 time in total.

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Question...Cancer and privacy vs openness

Postby CRguy » Sun Oct 09, 2016 12:01 am

do you mean in real life ?
or online ?

Here I have spilled my guts because there is a greater good to be achieved when we all share ...
the Good, the Bad and the Ugly

IRL ... I am more selective unless I know the person is also "one of us"
if that makes sense ?
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Nik Colon

Re: Question...Cancer and privacy vs openness

Postby Nik Colon » Sun Oct 09, 2016 12:03 am

CRguy wrote:do you mean in real life ?
or online ?

Here I have spilled my guts because there is a greater good to be achieved when we all share ...
the Good, the Bad and the Ugly

IRL ... I am more selective unless I know the person is also "one of us"
if that makes sense ?

Didn't think of that, but good you brought it up. I guess my question was more about IRL.

Nik Colon

Re: Question...Cancer and privacy vs openness

Postby Nik Colon » Sun Oct 09, 2016 12:10 am

My mom was always a private person, but it was more about her wanting others to think she had a good life (my dad was a bad alcoholic back then). But when it comes to something like cancer, I don't feel it's something to be hidden. Tbh, I talk to everyone I can about it. Not that it's something to brag about, but it let's me educate people of the risks, how CRC is on the rise in younger people, etc.

ETA: after my dx, my friends hub had a colonoscopy (he had bleeding and issues a yr prior, he was 40). They found 11 polyps, 8 rectal, 3 colon, 3 precancerous biggest 12mm. Now, if he wouldn't have and waited, I'm pretty sure he would have gotten cancer, and if at 50, the recommended age, probably stage 4 or even b4 or dead. His mom died of another cancer. If he didn't go in, he could/would be way worse. So, I may have prevented his or saved his life. THAT is why I tell people. If I only save or help even one person, it's worth it to me.

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BeansMama
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Location: North Carolina

Re: Question...Cancer and privacy vs openness

Postby BeansMama » Sun Oct 09, 2016 4:17 am

For me I suppose it depends on the person. Sometimes I prefer to keep things private, but sometimes there is this one person I come across that the topic comes up and I am pretty open about my illness.

I wait for them to bring the subject up first, some people are not comfortable talking about it while others want to know everything.

Personally I would prefer people ask questions instead of staring when we are out.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: Question...Cancer and privacy vs openness

Postby teri3 » Sun Oct 09, 2016 7:31 am

I am very open IRL and on here. I too do it to promote awareness. I also do it because I want people to know that cancer doesn't have to be end all thing. Being on chemo sucks but you can still have a life, you still can be a positive person. I try to be as upbeat as possible about my diagnosis and explain what I'm going through using humor. I don't want people to be afraid or feel sorry for me.

Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

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Kick'nAssCancer'sAss
Posts: 248
Joined: Tue Feb 25, 2014 4:38 pm

Re: Question...Cancer and privacy vs openness

Postby Kick'nAssCancer'sAss » Sun Oct 09, 2016 7:43 am

For me it has always been about awareness. After dx I was very public about what I was going through, it was not as if I walked around with a sandwich board sign stating I have cancer but with hockey buddies and other friends I pushed the need for colonoscopies. Most are in that 40 plus age group.. I used my fb page to document my battle and preach that I could of avoided all of this misery with an earlier colonoscopy (my first one was done at 53) I was open about everything I was going through and happy to say that most of them have been scoped and are good. Some have flat out told me they got it done because they were sick of my constant nagging. I just got a e mail last week from a friend who thanked me for pushing him since they found three pre cancerous polyps and have marked the areas for future reference. If anyone gets a scope because of fear, my nagging or me just sharing my experience then that is a positive that comes out of such a negative as cancer and I feel I have done my job.
Last edited by Kick'nAssCancer'sAss on Sun Oct 09, 2016 5:17 pm, edited 1 time in total.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kickingasscancersass.blogspot.com/

zephyr
Posts: 363
Joined: Thu Aug 18, 2016 7:31 am

Re: Question...Cancer and privacy vs openness

Postby zephyr » Sun Oct 09, 2016 10:20 am

I'm open about it but, at the same time, I don't talk about it except with a handful of close friends and family members. It's not that it's a secret, but I don't want to keep answering the same questions over and over. I know people care and I appreciate the concern, truly, but it's a little depressing to keep covering the same ground. We have explained that to people and asked that they please not call and ask for updates - that we would send updates when we have new information. As much as things change, they pretty much stay the same for weeks at a time (my experience).
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy
Feb-2023 Folfiri & Avastin
Nov-2023 Xeloda & Avastin

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MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Question...Cancer and privacy vs openness

Postby MikeManess » Sun Oct 09, 2016 10:44 am

I'm totally open about it. I made sure my bosses and co-workers at work know about it. Not only for awareness, but also for understanding on those days that I work from home plus all the many doctor appointments I have. They're totally understanding about my issues, and it helps a lot. In fact, I joke about it to them so that they don't tip-toe around the issue. Being Stage 4 (mets to the liver) I feel I have to be open about it. Anything could happen.

Same for church, friends, and neighbors. I'm not after sympathy .. whatever happens, happens. I do, however, ask everyone I know to pray. Not for me, but for my wife. The chemo and surgery is not fun, but what my wife is going through is far worse. I know, because I lost my late wife to cancer (ovarian) and I know just how difficult a diagnosis is on your spouse and family. It's strange, but it's more difficult for them than it is for me.
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
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

Nik Colon

Re: Question...Cancer and privacy vs openness

Postby Nik Colon » Sun Oct 09, 2016 5:54 pm

Yes, it is easier (I feel) for me than it is for my family. I know I would have a harder time coping with it if it were someone else I love going through it.

LaciK
Posts: 62
Joined: Mon Oct 12, 2015 2:10 pm

Re: Question...Cancer and privacy vs openness

Postby LaciK » Sun Oct 09, 2016 7:58 pm

I am also totally open here and with close friends and family. However, I do not feel it is appropriate to tell my clients. I do not want them thinking they are bothering me, nor do I want them questioning my competency.

There seems to be a stigma associated with having a cancer diagnosis. Unfortunate, but true.
DX 9/23/15 rc (age 50)
CT & EUS revealed T3N1 Stage 3b
Chemo/Radiation Oct/Nov 2015
LAR 1/15/16 w/temp ilieostomy
Xelox 3/17/16 - 2 rounds then paused for ilieostomy reversal 4/22/16
& to Clear up C. Diff infection
Restart Xelox 5/19/16 - Final infusion 7/21/16
Finish Xelox (oral Xeloda) 8/3/16
8/17/16 CMP & CBC normal; CEA Zero!
9/26/16 Colonoscopy clear
10/5/16 CT clear

LHCwife
Posts: 8
Joined: Wed Sep 07, 2016 10:16 pm

Re: Question...Cancer and privacy vs openness

Postby LHCwife » Sun Oct 09, 2016 10:42 pm

I have been very open, but I was in an awkward position as I worked at the hospital I had my colonoscopy and diagnosis at. I am certain some people outside of the OR suite knew even before I did as my doctor and husband were both visibly upset.

So I had to make a choice and either walk around the facility with people pretending they didn't know or being open about it. It took a week for me to announce it publicly and at times I regreted it. It took several weeks from diagnosis to surgery and going to the hospital everyday was very difficult, and I went back the following day after diagnosis.

I'm sure many of us have experienced reactions that were completely unexpected, many coworkers I felt close to completely avoided me and by the time I left for my surgery it was almost like everyone forgot what I was dealing with. My direct supervisor never once checked in with me to see how I was doing or offered any support.

On the other hand I have a huge support system outside of work and I wanted to raise awareness as I had my colonoscopy as my 50th bday routine screening, I had no symptoms and I'm at stage 3c. I know of at least 3 people so far who have gotten colonoscopies because of me including my older sister who had polyps. I will continue to raise awareness
I have plans, this is going to be a real pain in the BUTT!
Rectosigmoid Adenocarcinoma
LAR 9/21/16
DX pT3N2b MX Stage IIIC
Tumor 3.7CM x 2.7CM
13 of 31 lymph nodes positive
Pet Negative

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

Re: Question...Cancer and privacy vs openness

Postby Marylandmaniac » Mon Oct 10, 2016 7:56 am

Nik Colon wrote:My mom was always a private person, but it was more about her wanting others to think she had a good life (my dad was a bad alcoholic back then). But when it comes to something like cancer, I don't feel it's something to be hidden. Tbh, I talk to everyone I can about it. Not that it's something to brag about, but it let's me educate people of the risks, how CRC is on the rise in younger people, etc.

ETA: after my dx, my friends hub had a colonoscopy (he had bleeding and issues a yr prior, he was 40). They found 11 polyps, 8 rectal, 3 colon, 3 precancerous biggest 12mm. Now, if he wouldn't have and waited, I'm pretty sure he would have gotten cancer, and if at 50, the recommended age, probably stage 4 or even b4 or dead. His mom died of another cancer. If he didn't go in, he could/would be way worse. So, I may have prevented his or saved his life. THAT is why I tell people. If I only save or help even one person, it's worth it to me.


I am open as well. I agree that if I can help save one person then this all has some meaning. When I first got dx I wasn't sure how to handle but then I realized I am a pretty open person so why keep the greatest struggle I have yet to handle private? It has been good because I don't have to pretend everything is okay when it isn't. My friends and family and even people I don't know have shown me such compassion and love that I am overwhelmed at times. I feel very blessed as crazy as that sounds.
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

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Question...Cancer and privacy vs openness

Postby AnnClare » Mon Oct 10, 2016 8:46 am

I told my family, close friends, and my boss (who I also consider to be a friend). My boss publicized it on Facebook in order to host a fundraiser. At first I was horrified that SO many people would know my business, as I tend to be a private person. But the support I received from people, some of whom I didn't even know, made me grateful she'd spoken up. There are several clients at work who know and will ask how things are going, how I'm doing, and tell me that I "look great." It's nice to have the support. Now I tend to speak up more, and I certainly make a point of stating that colonoscopies should be done WAAAAY before the age of 50. One of my clients is a nurse and saw a girl get Dx'ed at 27. TWENTY-SEVEN! Until I was Dx'd, everything I read online led me to believe this was something that afflicted people 50 and over. Or were in poor health. Or had bad diets, didn't exercise, and / or had a family history. I had ZERO risk factors. It can happen to anyone, and I want people to be aware of that. As others have said, if I can make a positive difference in just one person's life, then that's amazing.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

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ABMom
Posts: 54
Joined: Sat Sep 10, 2016 6:04 pm
Location: Calgaryish

Re: Question...Cancer and privacy vs openness

Postby ABMom » Mon Oct 10, 2016 4:17 pm

I'm still pretty new to this game but, right now, I'm keeping things quiet unless someone asks. I've told direct family (parents, siblings and in-laws). I stepped down from a few volunteer positions some of them know I have cancer but not where. Some I just told I was sick and would need to focus on my health for a while. If someone has asked (and very few have asked), I've told them but I'm still at the embarrassed part. I'm not sure if that's something I'll ever get past.
39 Stage 1 RC
T2N0Mx - 2016-10-07
LAR - 2016-11-01
Illeo-reversal - 2017-01-27


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