Good news...and I'm at my lowest

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sealdog
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Facebook Username: nathan.seal.3

Good news...and I'm at my lowest

Postby sealdog » Mon Jan 22, 2018 12:33 am

Bit of a rant incoming...

A couple of weeks ago i recieved the news that I had a complete pathological response to treatment confirmed via surgery. My girlfriend cried tears of joy, my family and friends drank for me...and I am at my lowest point of misery as of yet.

They seem so confused why I'm not jumping for joy but all I can think of is my youth being denied, crapping out my stomach into a bag!, fear of my body failing me, fear of not having a family, fear of my manly parts not working, quality of life shot, losing everyone, functioning but not "living", guilty for bringing misery upon everyone, "making it work", the trauma of the process so far etc etc all at 30.

My thoughts are spiralling. Its the first time I felt hopeless when I've recieved the most hopeful news yet. Worst yet I'm making others feel hopeless, loved ones that hold that hope dear. I'm screaming "damage done!" basically. I hope to ride this out to some new point of clarity probably after the reversal surgery. I used to lift myself up, after the surgery i can't seem too.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

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

Re: Good news...and I'm at my lowest

Postby CRguy » Mon Jan 22, 2018 1:10 am

If you are like me, you are in limbo = holding pattern, waiting for the other shoe to drop Right ?

So you pull back into yourself and ramp up the defenses
the news comes in ... may be great, may be good
no matter
no point getting excited 'cos waiting for the other shoe to drop.

Been dealing with all this crap for 10+ years
I get it and I get how you are feeling ... BUTT
I can't give you a quick fix because there isn't one

time
and learning to accept / deal with it

different folks deal differently
somehow
some way

we do find a way

been there
doing that

Harmony bro'
embrace the reality but don't let it consume you

CRguy always here to listen
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

CAGirl
Posts: 59
Joined: Fri Aug 25, 2017 4:55 pm

Re: Good news...and I'm at my lowest

Postby CAGirl » Mon Jan 22, 2018 2:02 am

Yup. Totally get it. I think I had a post back in Sept or Oct about finishing chemo and "not walking on sunshine". People would say, "I'm so glad this is behind you."
HA HA HA!
And you don't want to bring them down, or let them know you're constantly doing math in your head to see how long you hope to live so that your daughters will be old enough to deal with their mother's death (for example).
It's also that we've been processing and researching and fighting and actively treating this all year. So now to just... wait and hope... is tough.
But I agree -- can't let it consume us. Gotta live each day and appreciate each moment and where we are TODAY.
Someone just posted a pic of me from 20 years ago, and my first thought on seeing it was, "I wish I could warn my young self to keep getting colonoscopies." Living in the past and having the "If only this didn't happen"s is just as debilitating as worrying about future CT scans or recurrences.
Dx 2/2017, age 45, 2 kids: 6 yrs & 3 yrs
History of Crohn's disease - dx in 1997; in remission, thus no colonoscopy in over 10 years
Anemia dx 11/16: GI doc assured me "the likelihood of colon cancer" was "very low".
Stage 3C - T3N2b
8/64 lymph nodes; clear margins surgery 3/17
12 cycles of Folfox 4/17-9/17
3-month CT scan midway through chemo, no changes
2-3-mo CT scan post chemo 11/17 slightly larger lung nod (incr. from 7mm to 8 or 9mm)
CT scan 3/18 - NED
clear CT scan 1/2019 NED

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Good news...and I'm at my lowest

Postby NHMike » Mon Jan 22, 2018 5:21 am

The Oxaliplatin is horrible and people don't understand as they think that my cancer is gone (it probably is) but the Adjuvant Chemo has been the most painful part of the treatment for me. Please feel free to rant - it's a tough, tough process. And we really get it.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Good news...and I'm at my lowest

Postby Atoq » Mon Jan 22, 2018 4:57 pm

I also can relate to that, until now I have been positive and trying to live day by day, enjoying all I have (and it is a lot), but it is just a matter of time and it will be too much to handle.

Not to talk about what is waiting, more surgery to remove the tumor, ileostomy (or permanent colostomy), clean up chemo, lung surgery...we need to accept that also that’s life.

For me it is essential to train, work, do everything as before as long as I manage.

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Good news...and I'm at my lowest

Postby stu » Mon Jan 22, 2018 5:24 pm

Sounds totally reasonable to me . You are only getting time now to process the full impact of the sheer trauma of this derailment . I have seen this a lot with other conditions .
Thinking of you ,
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 .

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Good news...and I'm at my lowest

Postby heiders33 » Mon Jan 22, 2018 5:46 pm

Yup, sounds reasonable. I have a feeling that I’m going to cry a lot when my treatment is over. Partly due to relief, but mostly processing the trauma of it all.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Good news...and I'm at my lowest

Postby Caat55 » Mon Jan 22, 2018 8:09 pm

Everything happens so fast when you are diagnosed you really don't get to grieve. This is your time, every milestone may bring more grief. Your feelings are yours, real.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

menreeq
Posts: 70
Joined: Fri Jun 30, 2017 10:26 am

Re: Good news...and I'm at my lowest

Postby menreeq » Tue Jan 23, 2018 1:01 am

I came on here tonight feeling the same way. Stumbling onto this post and seeing the replies... well, it helps.
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41ls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17), 0.8 (2/28/18), 1.0 (9/17/18), 1.1 (4/16/19), 1.0 (9/24/19), 1.7 (7/8/20)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics neg for mutations, 4 VUS
Xeloda monotherapy 8/13/17-1/22/18
PET/CT 3/21/18 NED
CT C/A/P 9/17/18 NED, 3/8/19 NED, 9/19/19 NED, 5/13/20 NED

sealdog
Posts: 19
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Good news...and I'm at my lowest

Postby sealdog » Tue Jan 23, 2018 5:40 am

CRguy wrote:If you are like me, you are in limbo = holding pattern, waiting for the other shoe to drop Right ?

So you pull back into yourself and ramp up the defenses
the news comes in ... may be great, may be good
no matter
no point getting excited 'cos waiting for the other shoe to drop.

Been dealing with all this crap for 10+ years
I get it and I get how you are feeling ... BUTT
I can't give you a quick fix because there isn't one

time
and learning to accept / deal with it

different folks deal differently
somehow
some way

we do find a way

been there
doing that

Harmony bro'
embrace the reality but don't let it consume you

CRguy always here to listen


Nail meet head CRguy :)

It's limbo while everyone else keeps living coupled it with being a transitional period in my life. This is the first truly isolated moment I've had with what has happened, I'm truly grieving. I've only ever dealt with problems in bite sized chunks, one mountain to conqueor at a time. Maybe I've just been lucky to have had that momentum in my life up until now.

This is like an atom bomb. Mum last year, same cancer, lynch syndrome. I had only just started processing that before I was diagnosed a month later. A one year treatment program. A taxing one. Hit after hit after hit. Losing your identity is scary.

My impatience is my worst enemy, it always has been. Next, next, next. I've got to cherish moments of peace more than ever, I never did before.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

sealdog
Posts: 19
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Good news...and I'm at my lowest

Postby sealdog » Tue Jan 23, 2018 6:49 am

NHMike wrote:The Oxaliplatin is horrible and people don't understand as they think that my cancer is gone (it probably is) but the Adjuvant Chemo has been the most painful part of the treatment for me. Please feel free to rant - it's a tough, tough process. And we really get it.


I was dreading this as well, you've been through so much already. My surgeons are already organising reversal steps and didn't mention adjuvant chemo until I brought it up out of interest, I thought it was standard. They then organised a chemo discussion with an oncologist but it seemed to me they had already decided no more chemo. I can't wait to find out why, I was stage 3 at diagnosis.

Maybe they're presuming I'm lynch because of history and getting the ball rolling. Pathology didn't reveal MSI status because it was totally dead, which I'm not complaining about, just thought I'd find out then.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Good news...and I'm at my lowest

Postby heiders33 » Tue Jan 23, 2018 8:13 am

Sorry if I’m not up to date on this, but did you not have an oncologist during your six weeks of chemo/radiation? What does he or she have to say? I think post-op chemo is pretty standard for stage III, although my Croatian oncologist said it’s not standard in Europe - not sure if that’s true.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

sealdog
Posts: 19
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Good news...and I'm at my lowest

Postby sealdog » Tue Jan 23, 2018 8:52 am

I changed from my local team to a team in Melbourne which is only 40 mins away after chemo radiation. This was to Peter Mac, a dedicated cancer research hospital in Australia. They only do cancer, quite an amazing place.

Local surgeon was going to do half lapascropic half open surgery, city surgical oncologist proposed the Da Vinci robot which i decided upon. They're my team now and I trust them greatly so I'll be interested to find out their reasoning on adjuvant chemo.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017

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henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: Good news...and I'm at my lowest

Postby henry123 » Tue Jan 23, 2018 11:16 am

sealdog wrote:Bit of a rant incoming...

A couple of weeks ago i recieved the news that I had a complete pathological response to treatment confirmed via surgery. My girlfriend cried tears of joy, my family and friends drank for me...and I am at my lowest point of misery as of yet.

They seem so confused why I'm obably after the reversal surgery. I used to lift myself up, after the surgery i can't seem too.


Last year I was given just a few months when nothing seemed to work.
After it started working , I am still to get back into flow of things. I grieve for my uncle and grandfather who had lost battle to cancer at young ages due to Lynch. They had no immunotherapy at that time.

Mind needs to adjust to new paradigm . I guess this disease is a roller coaster with extremes of hope and despondency.

BTW Congrats on good news.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

sealdog
Posts: 19
Joined: Fri Jun 09, 2017 8:23 am
Facebook Username: nathan.seal.3

Re: Good news...and I'm at my lowest

Postby sealdog » Tue Jan 30, 2018 1:01 am

heiders33 wrote:Sorry if I’m not up to date on this, but did you not have an oncologist during your six weeks of chemo/radiation? What does he or she have to say? I think post-op chemo is pretty standard for stage III, although my Croatian oncologist said it’s not standard in Europe - not sure if that’s true.


Had my oncologist appointment today. They're all suggesting no chemo based on the response i had and presumed lynch status. Even if I wasn't lynch they still wouldn't recommend chemo. She said Europe and America have different opinions on chemo after a complete response, America saying "until you can prove it doesn't work we will give it regardless."

I'm obviously opting for no more chemo if the odds are already at 90-95 % chance of beating this dread disease. She was fairly optimistic.
Diag 30/04/2017 Stage 3A\B Rectal Cancer
3.5cm's Mid Rectum, 50\50 chance suspicious lymph nodes 2-3
Mum Lynch Syndrome due to EPCAM gene, diagnosed 05/01/2017, had checkup because of this! Grandfather and Great Grandfather also had colon cancer
15/06/2017 ChemoRadiation 6 weeks - Xeloda
Peter Mac Second Opinion 05/07/2017 -Re staging process PET, CT, MRI and Flexible Sigmoidscopy
ULAR proposed using Da Vinci Robot 11/2017


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