Really??!!?? UNEXPECTED GOOD NEWS!

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SoConfused
Posts: 1026
Joined: Mon Jan 30, 2012 2:40 pm

Re: Really??!!??

Postby SoConfused » Thu May 07, 2015 10:27 am

I am in SHOCK as surely were you to hear this news ... how ridiculously unfair. There is still a chance that these mediastinal tumors are benign - that can happen and hopefully, that'll be the case for you.

The good news (silver lining) is that your onc doesn't seem to think this is metastatic colon cancer. I am thinking of you and praying for a positive outcome from the PET and bronchoscopy.
Stage IV CC

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teacher49
Posts: 183
Joined: Sun Aug 14, 2011 10:34 am

Re: Really??!!??

Postby teacher49 » Thu May 07, 2015 10:56 am

Noooooo! You are a survivor.....you've supported your husband through his illness. Hoping for some better news for you.
F, 62,CRC, Adenoca, mod diff
cT3N0M0 Stage IIA May 2011
chemorad
APR on 9/27/11 Margins & Nodes Neg
comp.after surg/2 pelvic abscesses/Sepsis/Hosp 40 days
10th FOLFOX 6/6/2012 feet went numb
5FU to finish
NED 12/21/2020

jvaime21
Posts: 308
Joined: Sat Sep 14, 2013 5:35 am
Facebook Username: alpha21_2003

Re: Really??!!??

Postby jvaime21 » Thu May 07, 2015 7:58 pm

Hi Bev, since I'd got here few years ago.. You're
One Of the very supportive and active for my post,. Making me feel better I guess and giving me more knowledge in this beastly C____r . I look on your signature and lightning me that somehow there is a chance of curing this. Some of you are still on this board. Many of them left us.. I always think of you. Even I know my husband situation wont be cured. You'r like a shining star that I always look up.
But this is it.. The reality of our C_ n cr..You know what to do. Back to routine .. And I know you can handle it again..

Love and hugs
Retchel

P.s -- you are always be my shining star..
wife of Stg 4 SRC
Diag.'12-2013(rd+Xeloda+oxi)
04/16/14 Clear CT-
8/25/14Kidney blockd nepro.
Rec. lung 1 enlrg. Abdomen
Inoperable/incurable /Chemo for life
11/21/14 Xeloda+Irinetocan 6x
hoping for a bright sunny day

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TheLadySkye
Posts: 269
Joined: Thu Oct 24, 2013 1:40 pm

Re: Really??!!??

Postby TheLadySkye » Thu May 07, 2015 8:04 pm

Perhaps I have no right, but I am so mad at this. Of all the unfairs in cancer, THIS seems perhaps the most cruel. I am hoping and praying that the followup tests will find that cancer has most definitely left the building and won't dare darken your doorstep again.

*hugs you to itty bitty pieces*
TheLadySkye
Stage 2b (T4N0M0) small intestine (jejunum) 8/13
Small bowel resection 9/13
CT 10/13 - NED
FOLFOX chemotherapy 11/13 - 4/14
CT 6/14 - NED and my nemesis (the power port) out!
Clean colonoscopy and endoscopy 9/14
CT 12/14, 6/15 - NED!!!

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Bev G
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Location: Quechee, VT

Re: Really??!!??

Postby Bev G » Fri May 08, 2015 12:10 am

Thank you all with my whole heart. I'm in very rough shape right now...very confused, and this is bringing back all of the weirdness with my original diagnosis (PTSD-wise). My husband was a nightmare of a caregiver when I was very sick with the CRC. I am DREADING going through that again. When he yelled at me this morning I told him no yelling this time around...if he did he was out.

I keep telling myself to make no assumptions, and although I don't tend to be much of a worrier, not knowing what the heck is going on is making me less docile than usual. I have the exact same feelings of unreality that I experienced with the stage IV CRC diagnosis. Also, I don't know if I already said this butt apparently (according to my husband) my oncologist also said yesterday that there is something else (lesion) in my abdomen. I did not hear him say that, butt I was, frankly, checked out. From my experience as a pretty severely abused kid, I developed a knack of dissociating under severe stress. It is not voluntary or intentional, butt results in me "being there" in reality, and apparently behaving perfectly normally, butt I lose the ability to really be there cognitively and lose the content of the conversation in question.

So today I had many questions of my husband, who was with me at the appointment. Did my doc describe the lesions as solid or lymph nodes (he didn't know) What is the exact location (he didn't know) Did my doc say "it's most likely nothing" (NO) Did my doc seem very concerned (YES) Why didn't my husband ask about location (he IS a physician)? (No comment)

I keep reminding myself of what I always tell our newbies: everyone knows the waiting for information is really hard, butt there's no rushing it. Stay off Dr Google (I am because I don't even have a clue what to look up) Worrying is a waste of energy. Don't forget to B-R-E-A-T-H-E. These are all good reminders. I'm working on doing this. I'm breathing a lot :-)

I miss Maia!!!

Thank you all again. I appreciate your support so much. This is, overall, a bit too weird to wrap my head around. Should be getting my PET/CT appointment tomorrow, then appt with lung guy, then bronchoscopy, then probably biopsy (OF WHAT???) then I'll have a plan. I like plans.

Thank you all again. You're wonderful!
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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ANDRETEXAS
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Location: Austin, Texas (University of Tennessee alumnus)

Re: Really??!!??

Postby ANDRETEXAS » Fri May 08, 2015 1:53 am

Bev. I'm feeling for you and this disruption. I know you are telling your mind not to worry, but having the unknown before you leaves you little else what with the psyche being what it is. I can only recommend the term "mind over matter." Usually this means using willpower to overcome physical problems. But since my CC diagnosis, I use it to mean forcing my mind to overcome any obstacle mental (itself) or physical. I described this to my oncologist after I started chemo. He didn't act like I was crazy, so I have continued it. I won't even go into the details of how I do this, but I talk to my brain before I go to sleep. Is the brain talking to itself? Probably. But my brain is in charge of the rest of my body, Physically....I tell it what I want done. I handle the spirit and force my mind not to worry, but to move forward with the tasks at hand. I know it sounds psycho, but it's worked for me. I also know it's more difficult when you don't know what's wrong, but you can make yourself not worry. And in this case, I hope you have nothing to worry about. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

Leeloo
Posts: 58
Joined: Sat Oct 04, 2014 5:02 pm
Location: Glasgow, Scotland, UK

Re: Really??!!??

Postby Leeloo » Fri May 08, 2015 3:12 am

Dear Bev,
This is so tough... You have always been an inspiration and strength to me and so many others here, so I hope we can send you back some courage and hope and hugs.
This time it is OK to shout back. You husband sounds scared but this is about you. So shout and punch cushions as much as you want.
And this time you know the routine - wait for scan - wait for results - wait for a plan - wait for them to share it with you. And the whole time we will be waiting here too for your news and wishing you well.
Leeloo
(R) hemicolectomy 13/08/13
Stage IIB T4N0(0/6)M0
Xelox x 4 (Scot trial)
NED

Kiwi Debz
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Facebook Username: Deb Goldby

Re: Really??!!??

Postby Kiwi Debz » Fri May 08, 2015 6:04 am

Dearest Bev

I can only imagine what you must be feeling right now. I understand what you mean about detaching and not being present. When I had to make the decisions around stopping treatment for my son Tom before he died the only way I was able to make those decisions was by emotionally detaching myself. Thing is I now do this all the time. With the Cancer I detach and then I can get through. Not very healthy behavior as all the emotion then is stored up. I now get accused of being cold because of it. I am not, in fact I am emotionally very sensitive and very vulnerable. Please Bev, be kind to yourself and allow yourself to let go sometimes and feel. Being free to express emotion of any kind is good .... I wish you the strength to be weak. ((((Hugs)))))

Your comments from this board have helped me immensely in some of my decisions, you and Dianne saying to be aggressive, opt for surgery etc .... They have all played a part in my decisions thus far. Thank you Bev. It is now time for us to give back to you what you have given to us .... Draw on us, use us.

Peace.
Deb
6/14 DX mCrc stage 4
7/14 R. hemicolectomy; 4/17 LN; liver res. peri met; repair to illiac artery
8/14 FOLFOX
10/14 PET recurrence LN; liver ? Peri met Continue FOLFOX
12/14 PET: stable .Liver only! FOLFOX
02/15 Liver resection. NED
03/15 foundation One testing - BRAF mutant
05/15 progression; Hilum node; both lungs?
08/15 NED !!!!
Age 51 Mum to Tom (RIP) and Jose 18
KIA KAHA - Be strong!

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Patience
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Re: Really??!!??

Postby Patience » Fri May 08, 2015 7:34 am

Hello Bev.
What can I say, besides "HUGGS".

With you in hope,
Patience
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

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Patience
Posts: 834
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Re: Really??!!??

Postby Patience » Fri May 08, 2015 7:34 am

Hello Bev.
What can I say, besides "HUGGS".

With you in hope,
Patience
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

michelle c
Posts: 1912
Joined: Wed Dec 02, 2009 3:58 am

Re: Really??!!??

Postby michelle c » Fri May 08, 2015 8:28 am

Dear Bev,

I've been thinking of you a lot. I can only imagine what you're going through - the not knowing is awful and then you have the associated feelings of despair and helplessness. I wish I could come over and hug you and even scream with you, but never at you. I wish your husband could give you the love, care and compassion that you truly deserve. Boy, he'll only make you feel so much worse emotionally with the way he treats you :(

I also dissociate from reality in times of stress - even when somewhat anxious I do it. I find it hard to function at the best of times. I also had a stressful childhood.

Bev, you've got wonderful doctors and I'm sure that they'll put a plan in place to get over this next hurdle. You give so much comfort and strength to others, I just wish I could give some back to you. Yes, keep reminding yourself of what you tell the newbies :wink: Hang in there. All the best for your upcoming tests and appointments.

Much love coming your way xxx ❤️❤️
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

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rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: Really??!!??

Postby rwightman » Fri May 08, 2015 8:45 am

Bev, I am pretty new to the game here, but I think everything you are feeling right now is completely "normal". I think there is only so much stress and anxiety a person can take before they check out until they are ready to process. Plan are good - you then feel somewhat in control! Hoping and wishing the best for you.
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: Really??!!??

Postby Delinda2 » Fri May 08, 2015 9:15 am

Dearest Bev, how I wish I had wings to fly in, scoop you up, and bring you home to be coddled, cuddled, pampered, and spoiled. I want to cook special dishes to tempt the appetite & bring you coffee fixed just the way you like it. I'm sure there are dozens of members here who feel the same.
There are so many people like your hubby who suck at nurturing. I sincerely hope there are others in your life who can give you that. In a perfect world it would be your spouse who wants to be that person for you. Butt in a perfect world we wouldn't be sick. You deserve to be treated like the angel that you are. So when hubby is being a jerk just ignore him & let your CC family wrap you up in our love.
We can also arrange a few lessons from hubs if he gets too far out of line. Bet'cha Kenny, CRguy, Frenchie, (to name only a few) would love to have a "talk" with him right now. I know I certainly would!
We love you. We need you. We appreciate you. Never forget that. XXOXO, Delinda
P.S. Your breakfast tray is ready. Would you like lilacs or bluebells in the little vase?
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

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abuttigi
Posts: 669
Joined: Tue Feb 08, 2011 9:39 am
Location: SE Michigan

Re: Really??!!??

Postby abuttigi » Fri May 08, 2015 9:32 am

UUUGGGHHHHHH!!!! I have no words other than this is so freaking ridiculous. Thinking and praying for you, Bev!! Hope your broch and scans went well!

Ang
Daughter to George (64)
Dx'ed Jan '11 Stage IV CC liver and peritoneum, KRAS mutant
Folfox
Folfori, Avastin
SIRT
Aug '12- progression in liver, mets to lungs
Oct '12- mets to bone, Regorafenib
Nov '12- Hospice
12/10/12- Became my beautiful angel in heaven

Bob_Weiss
Posts: 743
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: Really??!!??

Postby Bob_Weiss » Fri May 08, 2015 9:37 am

As the typical character in the comic books yells when he gets angry: " @#!!&@@!! "

I have asked a few oncologists about whether a patient who had one cancer episode may have a general susceptibility to other types of cancer in the future. Does my episode of CR cancer 5+ years ago indicate I am more likely than the average person to get some other cancer? They have all claimed that there is no general tendency to get cancers, but I have my doubts. There seem to have been many episodes of members of ColonTalk coming down with non-CR cancers either before or after their CR cancer episode. I hope I am imagining things.

In any case, let us hope that this is one of the numerous false alarms that occur here. Best wishes.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED


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