People Minimalize What Is Happening to Me

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Newmol
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Joined: Mon May 16, 2016 4:36 am

People Minimalize What Is Happening to Me

Postby Newmol » Thu Jun 16, 2016 10:33 am

I had a right Hemicolectomy 10 days ago. I am recuperating well having a small amount of discomfort at this point but I am still experiencing sudden loose bowel movements. My issue is this. Though I am still waiting for the biopsy report from the surgery but the ones from the two colonoscopies indicate that the cancer was caught early. People have made comments to me and to others that "It is not a big deal since it was caught really early" or " I had a pre-cancerous polyp and it was nothing" or "it sounds like it is pre-cancer and not really cancer" or worse "Why did your doctor remove so much of your colon for such a little thing?" People may be minimalizing this to try to offer me comfort but instead it makes me feel maybe I am overacting to what is happening. This IS a big deal to me! Am I exaggerating the seriousness of what I am going through?
Routine colonoscopy 4/19/16 tubulovilois adenoma partially removed piecemeal - high grade dysplasia
Follow-up colonoscop 5/11/16 partial removal of remnants - suspicion of intra mucosal carcinoma
Right Hemicolectomy 6/7/16 margins and 39 lymph nodes - negative

DarknessEmbraced
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Location: New Brunswick, Canada

Re: People Minimalize What Is Happening to Me

Postby DarknessEmbraced » Thu Jun 16, 2016 10:44 am

You are not minimizing at all! It's a major surgery and recovery takes a while. Cancer is cancer no matter the size! *hugs* No are not overreacting at all!*hugs* I had half of my rectum and half of my sigmoid removed. I had 23 staples in my incision. It took me a long time to recover especially my stamina. The surgery changes everything and your diagnosis really upsets your sense of security!
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! :)

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: People Minimalize What Is Happening to Me

Postby Lydia666 » Thu Jun 16, 2016 11:24 am

Newmol wrote:I had a right Hemicolectomy 10 days ago. I am recuperating well having a small amount of discomfort at this point but I am still experiencing sudden loose bowel movements. My issue is this. Though I am still waiting for the biopsy report from the surgery but the ones from the two colonoscopies indicate that the cancer was caught early. People have made comments to me and to others that "It is not a big deal since it was caught really early" or " I had a pre-cancerous polyp and it was nothing" or "it sounds like it is pre-cancer and not really cancer" or worse "Why did your doctor remove so much of your colon for such a little thing?" People may be minimalizing this to try to offer me comfort but instead it makes me feel maybe I am overacting to what is happening. This IS a big deal to me! Am I exaggerating the seriousness of what I am going through?


People say terrible things- i had people minimize my cancer and going overboard too like 'how much time do docs give you'- it's awful and a constant struggle for me. When i had genetic testing indicate i have a faulty gene that makes me prone to all sorts of cancer, someone said : we probably all have that if we got tested! Drives me nuts! So basically, my advice, try to ignore people's comments- they just don't know what to say like we probably would not know what to say to other people's problems.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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mypinkheaven
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Re: People Minimalize What Is Happening to Me

Postby mypinkheaven » Thu Jun 16, 2016 11:39 am

Of course it's a BIG DEAL! I'm glad your recuperation is going well, but it's still very hard. And waiting for biopsy results is not easy.

I'm sure the people are trying to comfort you, but many people are uncomfortable talking about cancer and end up saying things that aren't "comforting" - even though they mean well. Don't let the comments get to you. You are not exaggerating the seriousness of what you're going through.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Noon32316
Posts: 34
Joined: Sun May 08, 2016 11:33 am

Re: People Minimalize What Is Happening to Me

Postby Noon32316 » Thu Jun 16, 2016 2:15 pm

You're not overreacting and your worries are completely legit. Your health is serious business. I agree with the comment about people being uncomfortable talking about cancer and illness in general. Some just have difficulty translating good intentions and concern into comforting words. They may minimize the situation or downplay it thinking that will ease your fears and anxiety so you or they simply just don't know that much about the condition. I wish you the best.
3/16: Dx colon cancer (sigmoid). Age: 36
4/16: PET/CT, Sigmoidectomy, Port installed
5/23/16 to 11/30/16: Folfox - 12 tx, no oxaliplatin for #11 & #12
11/5/16: PET/CT - NED
3/21/17: Colonoscopy = clear
9/27/17: CT scan = pathologically enlarged retroperitoneal lymph nodes - nodal metastases
10/5/17: CT guided needle biopsy
10/13/17: Confirmed - Recurrence

CEA '16 & '17: < 0.5
Original Dx: Stage 3C, T4a, N2b, Grade 3, 16/16 lymph nodes, infiltrating signet-ring cell carcinoma
Lynch negative

Colon King
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Location: Canada
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Re: People Minimalize What Is Happening to Me

Postby Colon King » Thu Jun 16, 2016 2:54 pm

There is a way out of the suffering of dealing with people's ignorance and stupid comments.

And truly, the comments you've received come from sheer ignorance and lack of knowledge.

The Way Out is a one word mantra that will calm you down when you are on the receiving end of people who say foolish things in the hopes of comforting you? themselves?

That word is: COMPASSION.

Have mercy on these poor souls, who are really trying to make you feel better. they are trying their best. They are usually in denial. You can't possibly have anything serious because it just doesn't happen to people like you; it happens to other people.

Once you accept that this is they way THEY deal with grief - minimizing, denying, challenging, avoiding - it will open your heart from anger to mercy.
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

tarheelmom
Posts: 168
Joined: Mon Mar 07, 2016 5:55 pm

Re: People Minimalize What Is Happening to Me

Postby tarheelmom » Thu Jun 16, 2016 3:08 pm

Newmol - it is a big deal. You have had major surgery that removed a significant part of your anatomy that may leave you with life long (but manageable) effects. I am in a similar situation in that my tumor was detected early enough to put in a Stage 1 category, but I still had to have two surgeries, wear a bag of poop for a few months, and now have new plumbing that will never be as good as the initial. People consistently say, "Oh it was caught early so you'll be fine." "It's great that all you need is surgery." "My (put in a random relative) had it much worse and now he/she is wonderful and just ran a marathon." While they are all well meaning, the right thing to say is, "I'm so sorry. What can I do to help you." If someone had part of their arm removed and their elbow connected to their wrist, people would be aghast, but that is what resection does to many of us - it's just not visible. Sorry for the rant - you struck a chord with me.

All the best for your recovery.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

cancer2015
Posts: 17
Joined: Fri Jun 03, 2016 4:05 pm
Location: Northeast Pa.

Re: People Minimalize What Is Happening to Me

Postby cancer2015 » Thu Jun 16, 2016 6:37 pm

I do believe that people mean well, they just don't THINK before they talk. No matter what stage how big or small, CANCER is CANCER!! It effects us for you the rest of our lives! Not just the scar on the external that we can all see, but ever aspect of us! I had someone tell me that Colon cancer is the BEST type of cancer to get. REALLY?? My response was my colon didn't get that memo.... WOW really??? Hugs to you and hoping biopsy has good news!!
57y/o female.
Sept 2015 CT shows thickening in transverse colon.
Colonoscopy looks like cancer.
Path, Cancer.
Surgery to be done lap, NOPE, tumor to large. Ascending and transverse colon resected, anastomosis done.
Path re[ort Oct. peritoneal spread and lymph nodes +.
Nov. 2015 chemo 5 rounds 5fu,oxi. Liver didn't like oxi so last treatment just 5fu.
March 2016 HIPEC done.
June 2016 scans and bloodwork...NED. :)surgical oncologist return visit in July.

Pyro
Posts: 305
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Location: Tucson, AZ

Re: People Minimalize What Is Happening to Me

Postby Pyro » Thu Jun 16, 2016 9:55 pm

Not cancer, but a survivor of Boston bombings. Good bit on people saying stupid things and great Ted talk.

https://m.youtube.com/watch?v=QuaIMgzIOn8
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

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

Re: People Minimalize What Is Happening to Me

Postby horizon » Thu Jun 16, 2016 9:56 pm

Wow. Those comments are unbelievably clueless and/or cruel.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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

Re: People Minimalize What Is Happening to Me

Postby LaciK » Fri Jun 17, 2016 1:59 am

People are clueless! I have not shared my cancer with many people outside of my close family and friends and what you are describing is partially why. I've heard the "best cancer to get" too. I want to ask them if they hear themselves? Why would you put best and cancer in the same sentence? Hello! They all seem sucky to me and I bet if it was happening to them they wouldn't minimize it.

Anything that impacts your ability to make it to the bathroom in time or causes gastrointestinal upset can be very difficult to deal with both physically and mentally.

I had my reversal surgery and now I am on the 4th Xelox adjuvant chemo out of six (2 prior and 4 after my reversal). It's been very rough lately. Has anyone noticed how food centric our society is and how much food there is on TV?

I'm trying to stay positive but sometimes it's difficult.

Keep the faith and try to keep in mind that their responses are about them and not you. Have you checked out the cancer owl cartoons about things people say? They made me laugh and realize that I wasn't alone in my frustration.

Good luck in your journey and take care.
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

stu
Posts: 1343
Joined: Sat Aug 17, 2013 5:46 pm

Re: People Minimalize What Is Happening to Me

Postby stu » Fri Jun 17, 2016 3:39 am

Hi.
I am not the patient and despite working in health care for years I was shocked by the comments. Whilst recognising they were out of their depth I decided early on to filter who to tell and not make the details fully public. Selecting a few people who were careful worked best for us.
Take care
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Nichoebe
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Facebook Username: Michael.Rosenbach

Re: People Minimalize What Is Happening to Me

Postby Nichoebe » Fri Jun 17, 2016 4:00 pm

People say the stupidest things very insensitive and not thought out. I also found some people treated me like they would " catch" it I had to say you can't catch it it's not the flu. Also keep in mind some just don't no what the hell to say. It's a tough deal but f@&k anyone who minimizes this sick trip we're on it ain't no fun and I like to see the ones who talk take a walk in our shoes then we'll see what they say. Just keep on keeping on do what you can follow Drs orders and live your life as you can and mostly ignore asshole people and stick with the good ones I know I found out who my real friends are
Stay Strong
Fight The Fight
Diagnosed colorectal cancer 9/27/13 3B

Chemo/radiation 28days Xeloda Oxaliplatin
Surgery 2/5/14 0/27 nodes upgraded 3A
Negative Lynch
3/28/14 Chemo 5FU Oxaliplatin 6month
9/27/14 ileostomy reversal
Mid October 2014 wound infected
Mid November 2014 Blood Clot Lovenox 6 months
Colonoscopy 2014

December 2015 Colonoscopy
I Can't Believe It's Back
1/22/16 Salvage surgery
Permanent Colostomy
1 week from surgery in hospital insane pain
60 treatments hyperbaric oxygen therapy
6 months Xeloda 5000 mg/day

Nik Colon

Re: People Minimalize What Is Happening to Me

Postby Nik Colon » Fri Jun 17, 2016 6:30 pm

Sadly, people who don't understand will not understand. Try not to let it get to you. Hugs

Newmol
Posts: 34
Joined: Mon May 16, 2016 4:36 am

Re: People Minimalize What Is Happening to Me

Postby Newmol » Sat Jun 18, 2016 3:57 am

You have no idea what your responses mean to me. You have validated my feelings and given me strength as no one else can. Thank you.

I will be getting the biopsy results from the surgery on Monday.
Routine colonoscopy 4/19/16 tubulovilois adenoma partially removed piecemeal - high grade dysplasia
Follow-up colonoscop 5/11/16 partial removal of remnants - suspicion of intra mucosal carcinoma
Right Hemicolectomy 6/7/16 margins and 39 lymph nodes - negative


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