NEW-Need some positivity here.

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: NEW-Need some positivity here.

Postby Robino1 » Fri Sep 29, 2017 2:58 pm

With my first colonoscopy, I didn't have a polyp. Nothing that was raised. It just looked like a discoloration on my colon wall. Someone told me that usually means that the polyp could have flattened out? Like I said, it was my first colonoscopy and the polyp could have been there for years and years.

It was very close to getting to the outer wall.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

teacher2017
Posts: 261
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Fri Sep 29, 2017 5:07 pm

I think mine says flattened somewhere. My pathology report is in but my appt is Monday. This weekend will be torture. I asked the nurse to email the surgeon and ask if the he could call me with the results. No reply. No urgency- just my fate.
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

teacher2017
Posts: 261
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 30, 2017 2:39 pm

So I meet with the surgeon for post-op and we will review the report. Is there anything I should ask? Anything you wish you had asked at your meeting? I definitely think I need a therapist regardless of the results. I've been shaken to the core. With colon cancer is radiation required? When do I ask treatment questions? How did you get names of oncologists to discuss your case with?
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: NEW-Need some positivity here.

Postby Aqx99 » Sat Sep 30, 2017 3:40 pm

teacher2017 wrote:So I meet with the surgeon for post-op and we will review the report. Is there anything I should ask? Anything you wish you had asked at your meeting? I definitely think I need a therapist regardless of the results. I've been shaken to the core. With colon cancer is radiation required? When do I ask treatment questions? How did you get names of oncologists to discuss your case with?


I know I have posted this before, but I wanted to make sure you had it as a resource for your questions. This is the NCCN guidelines for patients with colon cancer. It has a ton of information on the treatment of colon cancer, as well as a section with questions that you might want to ask your doctors.

https://www.nccn.org/patients/guideline ... index.html

My cancer center uses nurse navigators to help patients move through the treatment process. My nurse navigator is a constant in my life, as doctors come and go as the various treatments start and end. She is my point person for any questions I may have, if I need to get in contact with someone, or even if I have no clue who to ask. She gets me to the right person and the right answer. She is the person I asked about finding a counselor when I needed one. That is how I found out that my cancer center had an oncology counselor on staff. Do you have a similar person that can help you find the help you are looking for?
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Sat Sep 30, 2017 5:06 pm

I am 17 months out of treatment and just made an appt with an oncology counselor. Felt I needed to talk to someone. Please inquire if you can talk to a professional there are a lot of feelings and emotions to deal with
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

teacher2017
Posts: 261
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Sat Sep 30, 2017 7:29 pm

susie0915 wrote:I am 17 months out of treatment and just made an appt with an oncology counselor. Felt I needed to talk to someone. Please inquire if you can talk to a professional there are a lot of feelings and emotions to deal with


I agree that this is just life changing and overwhelming. I look at my children and tear up. Every channel has a cancer commercial. I will inquire on Monday when I get these results. I have no idea how I'm going to walk into the chemo place. September has been a terrible month.
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

teacher2017
Posts: 261
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Oct 02, 2017 12:49 pm

Just go to back from the dr. Very sad. Totally blindsided. Stage 3- 11/17 lymph nodes affected. All cancer was removed. Chemo with port needed. I'm so distraught.
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: NEW-Need some positivity here.

Postby susie0915 » Mon Oct 02, 2017 1:09 pm

I'm sorry, I know you were not expecting that news. You will get through the chemo to erase any cancer cells that may remain. Chemo can be challenging, but side effects can be controlled. It's not like the old days. Were you told what type of chemo you will be receiving, Folfox or Xelox? I had Xelox, I think they're equally effective just administered differently. I remembering being upset when I found I needed chemo after surgery, but I made it through and don't regret doing it. So many stage 3 patients on this forum have had successful treatments and have been NED for many years. Again, if you can ask your oncologist is there is a counselor you can talk to, it may be helpful.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

teacher2017
Posts: 261
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Mon Oct 02, 2017 6:32 pm

susie0915 wrote:I'm sorry, I know you were not expecting that news. You will get through the chemo to erase any cancer cells that may remain. Chemo can be challenging, but side effects can be controlled. It's not like the old days. Were you told what type of chemo you will be receiving, Folfox or Xelox? I had Xelox, I think they're equally effective just administered differently. I remembering being upset when I found I needed chemo after surgery, but I made it through and don't regret doing it. So many stage 3 patients on this forum have had successful treatments and have been NED for many years. Again, if you can ask your oncologist is there is a counselor you can talk to, it may be helpful.


I'm so upset. I feel like I can not control anything. Even the Ct scan was wrong? What do drs use them then? I knew chemo was in my future but I never imagined how badly it went to the lymph nodes. I'm just sick. I am going to see the oncologist and. Get myself a therapist too. I can't kick its ass unless the mind is in it!
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: NEW-Need some positivity here.

Postby ams5796 » Mon Oct 02, 2017 9:15 pm

That news can sure be overwhelming. You will get through it. It's a lot, but it's doable. Take it one step at a time. That sounds like such a cliche, but it's really the way I got through it. Think about it in small steps. You can do it.



Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

jep
Posts: 206
Joined: Sun Jun 11, 2017 7:45 pm

Re: NEW-Need some positivity here.

Postby jep » Mon Oct 02, 2017 9:47 pm

Hi Teacher2017.....if you peek at my signature (about my hubby) you'll notice a few similarities in your situations.... (my husband and I are also both teachers)....I've learned so much from this group, but a very important point from some members that my man and I keep in our minds is chemo as an ally....we think of each treatment as a step toward victory....my husband has completed 4 of 12 folfox treatments and he's doing well! He's staying super positive and enjoying life. Once he kind of, sort of recovered from surgery, we've been in a much better place. If I think back to mid May, I never would have thought that we'd be Ok right now. I wish you much rest, healing, and positivity! Take it slow and accept help when offered.
jep
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - 4/3/20
?

teacher2017
Posts: 261
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 03, 2017 5:59 pm

Question about post-op-
I seem to have a cough- a flemy one. Is this just a result from the surgery or do I have pneumonia?
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

teacher2017
Posts: 261
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: NEW-Need some positivity here.

Postby teacher2017 » Tue Oct 03, 2017 6:26 pm

jep wrote:Hi Teacher2017.....if you peek at my signature (about my hubby) you'll notice a few similarities in your situations.... (my husband and I are also both teachers)....I've learned so much from this group, but a very important point from some members that my man and I keep in our minds is chemo as an ally....we think of each treatment as a step toward victory....my husband has completed 4 of 12 folfox treatments and he's doing well! He's staying super positive and enjoying life. Once he kind of, sort of recovered from surgery, we've been in a much better place. If I think back to mid May, I never would have thought that we'd be Ok right now. I wish you much rest, healing, and positivity! Take it slow and accept help when offered.
jep


We are very alike. I pmed you. Did you get an option for chemo? Or was folfox the only thing for you?
50 yo mom of 2 (14, 17)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/8/17-4/18
CEA - 1.4 11/8/17
Colonoscopy- 5/18 - CLEAR!
Cea - 1.8 6/18
Cea - 2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/18
Cea level- 1.5 10/18
Cea level- 1.2 12/18
Clear scan- 12/5/18
Cea level- 1.1 3/19
Clear scan- 3/19
Cea level- 1.2 6/19
Clear scan- 6/2/19
Colonoscopy - 7/19 CLEAR
Cea level- 1.5 8/19
Clear scan - 8/19
Port removal- 9/19
Cea level- 1.2 10/19

jep
Posts: 206
Joined: Sun Jun 11, 2017 7:45 pm

Re: NEW-Need some positivity here.

Postby jep » Tue Oct 03, 2017 7:02 pm

I responded to your PM in more detail, but after getting an opinion from MSK and from our local cancer center, both agreed that Folfox was the way to go.
Wife of DH (47) Stage IV CC 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8/20
Baseline CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery: 8/21/19 (aborted)
Phase 1 Trial 10/19 - 12/19
Bypass surgery 12/6/19
Folfox + vectibix 1/2/19 - 4/3/20
?

DonutHead
Posts: 63
Joined: Tue Oct 03, 2017 6:45 pm
Facebook Username: mark

Re: NEW-Scared but Positive and Optimistic! Need Help on Putting Things into Perspective...

Postby DonutHead » Tue Oct 03, 2017 7:19 pm

On 10 August 2017, my colonoscopy reavealed a growth in my sigmoid colon and the Dr. expressed his confidence that it was cancer. The biopsy revealed lowest grade, non aggressive, and encapsulated variety of adenocarcinoma. The Dr. gave me a 95 percent plus prognosis for full recovey. After a blood test revealed I was in excellent health, had a normal CEA count, no markers for cancer in the blood, normal WBC count...A clean CR scan showing no metastisis and a localized tumor....a clean chest xray, i fought for immediate surgery.

Nine days later I had laproscopic surgery and an 8 inch resection of my sigmoid colon with 25 lymph nodes removed. The surgeon was confident that was it. While my life came to a screaching halt, i was confident from the Dr.’s 25 years experience that I would not need chemo, but the biopsy revealed a single lymph node out of 25 that was mildly showing a cancer influence. So from a strong pre-diagnosis ot T1/2 N1a M0 and Stage I, I quickly went to T3a N1 Mx and Stage IIIa.

This was yesterday and I am devestated. My wife broke down...

Tomorrow we go in to discuss options with an oncologist that has the highest reviews and over 31 years experience in treating colon cancer. While not afraid to undergo chemo - it has to be done - I am concerned about how much it will affect me physically. My wife and I have two boys and were planning on working on a girl as our third and final child once we were settled in our next overseas assignment...now I am worried about retrograde ejaculation, infertility from surgery and chemo, everything. The cancer is not genetic.

I want chemo now, I want it out if my body completely, but I do not know what to expect from treatment, side effects, duration, long term effects...I am scared.

As an aside, my beautiful wife saved my life. At our last assignment and while sitting on the toilet reading a men’s health magazine, where the article read, ‘10 signs a man should never ignore!’, i noticed light blood in my stool. it was number one on the list! i told my wife and we watched it come and go over 3 months and then when in between assignments, she made the colonoscopy appointment and made me keep it! She was certain it was a hemorrhoid, but alas it was game changing cancer.

i have a brilliant family and support network, but my life which was just hitting it’s stride on the way up from a hard slog with work over the past several years, came to a screeching halt! I have my health, my family, a positive attitude, outlook, and overall perspective...but i am damn scared!

i am not a smoker, occassional whiskey and red wine drinker, run 4 miles a day, work out, eat healthy, no junk food, no sugar, no fried foods, processed meats, limited red meat intake, fruits and vegetables guy...nothing! but here i am...

sorry, guys! you are all dealing with your own circumstances, but i greatly appreciate anything you can give me in terms of encouragement or good news stories. my family, my wife, my friends are all there for me, but i really need to hear from others who know what i am thinking, feeling, fearing...

God Bless You All!

DH
Male 49 yrs.
09/2017: Colonoscopy 2.2x2 cm lesion - Invasive Adenocarcinoma
- CT - slightly enlarged LN; CEA 2.0
- LAP Rectosigmoid - 8' and 25 LNs removed
- Biopsy - 1/25 LN slight molecular invasion
- Stage IIIa - T3 N1 M0
- Chemo: 3 of 8 rds Ox; 8 rds 4000mg Xeloda
10/2017: PET - NED
03/2018: PET/CT - NED
09/2018: Colonoscopy & PET/CT - NED
03/2019: CT - NED
09/2019: Colonoscopy & CT - NED (0.9 CEA)
Still Here!


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