What were you most afraid of about your diagnosis?

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Sunnycd
Posts: 86
Joined: Fri Feb 26, 2021 10:36 am

What were you most afraid of about your diagnosis?

Postby Sunnycd » Wed Dec 28, 2022 8:17 pm

My friend asked me what I was most afraid of when I heard about my diagnosis? At the time, we didn’t know the stage, we didn’t know if it was colon or ovarian…all they said was that it was massive. And cancer for sure. Besides the fear of pain (I have low tolerance, but that didn’t even cross my mind at the time), I must say, selfishly, my biggest fear was that I would be forgotten as if I never existed. I knew my husband and kids would be fine. They are resilient and strong, and as much as I know they love me, I wanted to be missed dearly, every day, till their passing days. So, I’m curious…what are you all most afraid of and how did the diagnosis change you?
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
MSS, RAS/RAF wild, PIK3CA mutant

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: What were you most afraid of about your diagnosis?

Postby roadrunner » Wed Dec 28, 2022 10:35 pm

Well, that’s an easy one: Death.

Since then, I’ve worked hard to understand and prepare better, more for the rest of my life (whatever it may bring) than for death, perhaps—I’m not quite sure. So far I’ve been granted the chance to do that. Of course, I hope to never put my preparation to the test, or at least not for many years, but it certainly sobered me up (literally—virtually eliminated a close and fairly impressive relationship with alcohol and desert) and made me contemplate things in a deeper, more rewarding way than I’d ever done before (even though I was a Philosophy major in college and then got an MA in the damn subject ; )

How has it changed me? Funny, because I was thinking (gratefully) about that today after a 3-mile run in the balmy (40F) temps. I’ve said it before, but if it doesn’t kill me, cancer will go down as one of the best things that ever happened to me. Not that there haven’t been very tough times and won’t be some lasting dings. But it made me more far more open to others (including family, friends, and coworkers), made me work better and harder at my job and my creative pursuits (on the last chapter of a too-long novel that I started in the midst of all this nonsense, and I’ve made great strides in improving my “marginal” singing and decidedly limited guitar playing) made me see the beauty of things far more often, and most of all, I’ve done a decent job of, in Warren Zevon’s words, “enjoying every sandwich.”

I fully recognize that this is a positive take that I may not be able to sustain if things turn dark again, but I hope I can keep a bit of it in my heart if I have to. As far as being forgotten goes? Well, when I do go—and I fervently hope that day is a long time from now, but who knows?—I hope my kids think of me once or twice with a smile during the course of very long, warm, adventurous lives. That’ll do.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

saltygirl
Posts: 91
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: What were you most afraid of about your diagnosis?

Postby saltygirl » Thu Dec 29, 2022 3:13 pm

I was the most afraid for my children. We don’t have any family in the USA. Have moved a lot around from state to state. Now almost 3 years later my girl is a junior in college preparing for applying to med schools. Son just got accepted to an aviation degree in college. Both college athletes. So happy I was able to get them to this point.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
6 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete response to chemo. No cancer cells found
5 more folfoxiri
NED
2020
2021
2022

DarknessEmbraced
Posts: 3743
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: What were you most afraid of about your diagnosis?

Postby DarknessEmbraced » Sat Dec 31, 2022 11:39 am

I was most afraid of having to go through chemo and having an illeostomy.
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! :)

DCook54
Posts: 31
Joined: Sat Sep 05, 2020 10:12 pm

Re: What were you most afraid of about your diagnosis?

Postby DCook54 » Sun Jan 01, 2023 11:06 pm

I wasn’t really afraid, but I was so damn sad at the possibility of missing out on so many things that I’ve looked forward to my entire life…like watching my grandchildren grow up and travel and taking care of my Mama as she grows older. But, I have learned to enjoy as much time as I can with my family and take advantage of my opportunities to get as much as I can out of every day. I agree that, in some ways, having cancer is a blessing. It really makes me look at my relationships and my priorities in a different light.
54 yo f
Stage IV colon- mets to lungs
KRAS G12V
Dec 2019- partial colect adenocarcinoma
0/31 LN
Jan 2020-PET NED
Jan 2020- Staged at I
July 2020-Ct-nodules both lungs
July 2020-VATS both lungs pos crc mets Stage IV
Aug 2020 began 1/6 cycles Folfox
Nov 20 Comp 6 Folfox
Dec 20 Colonoscopy/CTs clean
Dec 20 NED
April 21 Stable scans. 4 mm lung nodule to watch
Aug 21 VATS 2 nodules cancer
Sept 21-present Xeloda Main.
Nov 22 clear scans = 15 months NED
Dec 22 pleural effusion neg for cancer

Rock_Robster
Posts: 742
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: What were you most afraid of about your diagnosis?

Postby Rock_Robster » Tue Jan 03, 2023 12:03 am

This is such a good question, as I think sometimes identifying what we’re actually most afraid of (and not afraid of) is key to then managing that fear.

So firstly, what I’m not afraid of:
- I’m not afraid of being dead, or the afterlife. I’m not religious, so my only assumption is that it’s the same as before I was born - which as far as I can remember was fine.
- I’m not super afraid of dying itself. I figure I’ll be out of my gills on opiates and anti-anxiety meds if all goes to plan. Worst case scenario, Voluntary Assisted Dying has just been approved in my state, which is definitely a relief.
- I’m not too afraid of treatments. I like action, and can handle procedure. Surgeries are great. Having an ostomy was manageable. Radiation was like a part-time job. Chemo sucks donkey balls, but I can manage it.

So what I am afraid of:
- Firstly, I’d say I’m afraid of fear itself. Getting bad news, hearing ominous things, and the stress and torment it puts my wife and family through. Hearing that no more can reasonably be done. Living life in fear of the next piece of bad news or medical crisis. Even the ‘good times’ being full of foreboding joy.
- Making hard choices. Stopping treatment, starting hospice, using VAD. “Choosing” to die is just unfathomable to me. Easier if it happens to me without my consent.
- Uncontrolled pain. I’m not good with pain. I like pain meds and hope they work and continue to work. I hope to have a good proactive palliative care team.
- Loss of agency. This is probably the biggest one. Being the “sick one”. Not being able to work, to contribute, to be a husband, friend, etc. Only getting sympathy. Life being nothing but medical appointments, pain, treatment. Not being a complete person any more. Losing the things that make me, me.
- More than anything though, I’m afraid of - and most sad about - missing out. At 40 years old, I feel like I’ve been cheated out of another 40 amazing years of my life and time with my wife. That part is just not fair. But nothing about this disease is fair.

Well, that’s my list. Thanks for the audience.

Rob
40M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 > 2
Jun-22: 5
Sep: 10
Nov: 19
Dec/Jan-23: 17-19
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 Lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

saltygirl
Posts: 91
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: What were you most afraid of about your diagnosis?

Postby saltygirl » Tue Jan 03, 2023 10:05 am

Well written Rob! I was originally diagnosed at 39. Now 46. One day (maybe) I will write my story. It’s full of medical mistakes and miracles. Now I live crazy life full of adventure. Midlife crises in full swing :D
Stage 4, distant lymph nodes May 2020, braf/kras mutations
6 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete response to chemo. No cancer cells found
5 more folfoxiri
NED
2020
2021
2022

User avatar
horizon
Posts: 1661
Joined: Tue Apr 12, 2011 10:10 pm

Re: What were you most afraid of about your diagnosis?

Postby horizon » Sat Jan 14, 2023 10:40 am

I was so excited to become an uncle and couldn't wait to be a "fun uncle". After my diagnosis my biggest fear was that I would not only not get to do that, but that they wouldn't even remember me if I died.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 12 years NED). Is this real life?


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