Hope for Stage 3 and 4 - one man's story

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HSEternal
Posts: 1
Joined: Mon Feb 03, 2020 5:46 pm
Facebook Username: JED

Hope for Stage 3 and 4 - one man's story

Postby HSEternal » Mon Feb 03, 2020 6:51 pm

I've been a long-time lurker but this is my first and likely only post. I wanted to give some hope to those who have just been diagnosd at the 3C stage.

On Nov. 1 2013, my husband went for what I thought was a routine colonoscopy. (In Canada, you get a letter telling you to go for one when you turn 50, so it's very routine.) We were actually laughing about it. All of our similar-aged friends were going through the same thing regarding "the letter; everyone was relating their good results. My husband was a strapping, strong man, with good eating habits, good weight, non-smoker who drank only socially. So I was shocked when, driving my husband home from the hospital, he casually said, "So by the way, I do have colon cancer."

I was shocked.

He wasn't.

Unknown to me, he'd been telling our family (female) doctor about some rather alarming symptoms for at least seven years at that point. She'd brushed him off over and over and over again, for years, telling him to eat more bran. She often joked about men being wimps when it came to health--the old "man-flu" type of thing that we often see in memes or TV commercials. She actually posted little cartoons about this on her wall. I was annoyed by her sexism but let it go. I shouldn't have. In retrospect, her sexist and misandric attitude was a big part of the reason my husband never sought a second opinion, never sought treatment earlier, and basically "shut up" and followed her direction. For years. As he told me later, he just didn't want to be seen as that man whining to his wife about where the cough syrup was. Since then, this common internet joke has never been funny to me.

That doctor changed to a new practice, and my husband was assigned a new (male) doctor. During the patient intake survey, he described the same symptoms he had for years. He didn't want to be labelled a wimp again, so he actually thought twice about listing these symptoms. But he did, thank God. The new doctor was actually "alarmed" (his words) and immediately sent my husband for a colonoscopy.

Long story short, DH was immediately diagnosed within two minutes of the colonscopy with Stage 3C Sigmoid colon cancer, and later with 13 of 24 lymph nodes positive, spots on his lungs and liver, and "something" that looked like cancer on his spine--it had been giving him pain for about a year. Things were not just grim, but presented to us as "get your affairs in order. We still had minor children. And, what I will never forgive our original doctor for, they said the cancer had been growing for about 10 years.

And yet...

They never could figure out what exactly was on his spine, but it somehow disappeared after chemo. The pain went away. The liver spots were dismissed as cysts, and the lung spots just disappeared as well or were confirmed as benign. Three surgeries were involved in total (ask me if you want details) and 12 chemo treatments were administered. He had an emergency in which he almost died halfway through his chemo, and spent two weeks in hospital.

But today he's beat the odds. He's 6 years out from a diagnosis that gave him only an 8% chance of surviving 5 years. He has a few symptoms from chemo--a little numbness on his feet, a bit of chemo brain--but he's alive and well, literally no other symptoms since he had chemo. He never looked back.

Bottom line, just wanted other people to know there is hope--and never, ever, keep taking your doctor's word as final. Get a second opinion. And if your doctor mocks you for being a male complaining about a health problem, ask to switch to a new doctor. An online joke may not seem like much, but too many men already put off doctor's visits because they're mocked or believe they must be strong. Consider that.

Deb m
Posts: 554
Joined: Tue Jan 14, 2014 10:08 am

Re: Hope for Stage 3 and 4 - one man's story

Postby Deb m » Tue Feb 04, 2020 8:47 am

Wow! What a story. So glad that things are going well for him. I love happy endings.

Claudine
Posts: 267
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Hope for Stage 3 and 4 - one man's story

Postby Claudine » Tue Feb 04, 2020 11:26 am

Thank you so much for this post. I really needed to read something like this today :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

CF_69
Posts: 102
Joined: Sat Dec 22, 2018 9:44 pm

Re: Hope for Stage 3 and 4 - one man's story

Postby CF_69 » Tue Feb 04, 2020 11:51 pm

I had a similar, though far less egregious experience with a doctor when I finally decided to get checked out after months of rationalizing away the symptoms I did have. Drank too much the night before, ate the wrong thing, probably just hemorrhoids, etc.

The doctor actually told me it was just hemorrhoids and sent me away with a tube of Preparation H. He didn’t bother to do a rectal exam. I went home relieved. I had sporadic blood on tissue, and it seemed to go away for a week or so, but then it came back. I went back to the Doctor I would guess about 10 days later and a different doctor was on duty. He gave me a rectal exam and sent me for a colonoscopy the next day.

I’ve read this same story too many times.

You really have to be persistent it seems. I often think of what could have or would have happened if I did not go back so soon. I almost didn’t. I put off going in the first place for months because I didn’t think my symptoms were too serious.

I could have found my cancer 6-12 months sooner had I recognized the seriousness of my symptoms.

Misdiagnosis does seem to happen a whole lot. Doesn’t seem to be a whole lot you can do about it either.
47 at diagnosis
Distal sigmoid near rectosigmoid junction adjacent to upper rectum
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0 after pathology
CEA:
Dec 2018 - 1.9
September 2019 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019

JJH
Posts: 218
Joined: Mon Apr 24, 2017 7:26 am
Location: Europe

Re: Hope for Stage 3 and 4 - one man's story

Postby JJH » Sat Feb 08, 2020 12:36 am

HSEternal -

Thank you for posting your husband's story. This story delivers a very powerful message and deserves to be widely disseminated.

Have you considered sending a version of this story to one of the colorectal cancer awareness organizations? There are several organizations out there that prepare Social Media Toolkits every March for Colorectal Cancer Awareness Month. They are always looking for new stories and new memes to add to their toolkits. Here's an example of one such organization's toolkit.

Social Media Toolkit - Colorectal Cancer
http://bit.ly/CRC2019Toolkit

And here's one place where you could submit your story or meme for wider dissemination under the rubric of Colorectal Cancer - Awareness:
https://smhs.gwu.edu/cancercontroltap/content/submit-your-success-story

Image

DarknessEmbraced
Posts: 3418
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Hope for Stage 3 and 4 - one man's story

Postby DarknessEmbraced » Sat Feb 08, 2020 6:28 pm

I'm so glad things are going well for him! :)
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! :)

3legs
Posts: 4
Joined: Mon Feb 03, 2020 10:42 pm

Re: Hope for Stage 3 and 4 - one man's story

Postby 3legs » Wed Feb 12, 2020 9:34 pm

Glad he is doing well and thankyou for posting. Gives me hope.
I too am currently going through 12 sessions of chemo for stage 3 cancer however I got lucky and they only found some cells in 1 out of 23 lymph nodes and scans show it hasn't spread.
I totally agree with you about the Doctors attitude.
Here in Australia anyone over 50 gets the poo test in the mail every 2 years.
Ever since I turned 50 on my birthday I got a full medical checkup for liver, kidneys, heart, prostate and poo test.
Up until last year all was good until they found blood on the poo test, then colonoscopy and found the tumour which had been growing for at least 3 years.
The thing that really annoyed me was my Doctor (same Doctor since I turned 50. Now 60) never gave me the option to have routine colonoscopy's.
To be honest I wasn't even aware of what a colonoscopy was and what it does until last year.
As the poo test is not 100% accurate I would have got a colonoscopy every 2 years since turning 50 had I known they were the gold standard of tests.
I now tell everyone regardless of their age to get regular colonoscopy's once they turn 45.
For the sake of 1 day out of their lives and around $800 every 2 years they would not have to go through what I went through.
Finding a Doctor who is sympathetic to your needs is a must.


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