Stage 2- no follow up care???

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child#6
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Stage 2- no follow up care???

Postby child#6 » Tue Jun 12, 2018 11:30 am

My husband's pathology is back. Stage 2 with no node involvement. Surgeon said they are confident they got it all. Husband will need no further care except for yearly colonoscopy for a few years. Is this right? Should I feel confident with this? Next appointment is in one week so I want to be sure.

Beckster
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Location: New Jersey

Re: Stage 2- no follow up care???

Postby Beckster » Tue Jun 12, 2018 12:20 pm

A surgeon is not an oncologist and should not make that call. There are 3 types of stage 2 colon cancer: 2A, 2B and 2C. Which one does he have? In addition, how many lymph nodes were removed, was there obstruction or perforation, LVI or PNI, Grade of tumor, T4 tumor? All of this should be on the pathology report. Even if there are no high risk factor and he does not need chemo, your husband should see the oncologist to begin surveillance. Scans and bloodwork (3 months for bloodwork and possibly every 6 months for scan) first 2-3 years and every 6 months years 4-5. Stage 2 is a grey area. I had stage 2 and it is something that definitely warrants a trip to the oncologist.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8
Clear Colonoscopy 10/17 :D

erins
Posts: 28
Joined: Sun May 27, 2018 12:41 pm

Re: Stage 2- no follow up care???

Postby erins » Tue Jun 12, 2018 12:37 pm

I was just diagnosed as having stage 2a, and still met with an oncologist about a week after surgery. I had no risk factors (T3, clear margins, low grade (G1), no LVI, no PNI) so the oncologist recommended no chemo, but I will go back in 3 months for bloodwork, and will have bloodwork+ CT scan in 6 months). I’m also getting a genetic screening since I’m 38. Your surgeon should refer you to an oncologist, and they’ll help determine next steps. At the very least you’ll need bloodwork and regular scans to check there’s no recurrence. You’ll also have a colonoscopy in one year to check the colon, but that isn’t enough, even for low-risk Stage 2, since it only tells you about the colon.

Good luck!
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS

child#6
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Re: Stage 2- no follow up care???

Postby child#6 » Tue Jun 12, 2018 12:41 pm

11 nodes were taken and came back clear. I do not know if he was 2A, B, or C? There was no obstruction or preferation.

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betsydoglover
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Re: Stage 2- no follow up care???

Postby betsydoglover » Tue Jun 12, 2018 12:53 pm

Sorry you have to be here.

Stage 2 is definitely better than some other stages, but you should definitely see an oncologist - surgeons, no matter how good, are not equipped to handle ongoing cancer care following surgery. I think that you should always consult an oncologist when deciding post-surgery options. - even if you were "only" Stage 1.

I am not at all trying to scare you, but I've known some Stage 2 folks who ended up with metastatic disease. Please find an oncologist and work with him/her to develop a treatment / monitoring plan that you both are comfortable with. I think you will be glad you did.

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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kellywin
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Location: Northern CA

Re: Stage 2- no follow up care???

Postby kellywin » Tue Jun 12, 2018 1:15 pm

I echo what others have said. Stage II is kind of a grey area for treatment, but he should at least be referred to an Oncologist to talk about options.
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

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Robino1
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Location: Florida

Re: Stage 2- no follow up care???

Postby Robino1 » Tue Jun 12, 2018 1:51 pm

I was 2A. I really don't mean to scare you.

I'm now dealing with a nasty metastasis. I had no chemo after the initial surgery. No lymph nodes were involved, all margins clear.

3 years after the resection, metastasis. And now here I am. Fighting a huge battle.


I'm just unlucky, or so I've been told.

Do whatever you can to keep an eye on things.
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

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O Stoma Mia
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Re: Stage 2- no follow up care???

Postby O Stoma Mia » Tue Jun 12, 2018 2:55 pm

According to NCCN guidelines, all Stage II patients should be given a written survivorship plan and should have 5-year follow-up.
Some of the follow-up guidelines mentioned by NCCN for Stage II patients are:
History and physical every 3–6 mo for 2 y, then every 6 mo for a total of 5 y
• CEA every 3–6 mo for 2 y, then every 6 mo for a total of 5 y
• Chest/abdominal/pelvic CT every 6–12 mo ... for a total of 5 y
• Colonoscopy in 1 y except if no preoperative colonoscopy due to obstructing lesion, colonoscopy in 3–6 mo; if advanced adenoma, repeat in 1 y ;if no advanced adenoma,repeat in 3 y, then every 5
. . .
Also,
Counseling Regarding Healthy Lifestyle and Wellness:
• Maintain a healthy body weight throughout life.
• Adopt a physically active lifestyle (at least 30 minutes of moderate intensity activity on most days of the week).
• Consume a healthy diet with emphasis on plant sources. Diet recommendations may be modified based on severity of bowel dysfunction.
• Consider low-dose aspirin.
• Limit alcohol consumption.
• Receive smoking cessation counseling as appropriate.

Reference: https://www.tri-kobe.org/nccn/guideline/colorectal/english/colon.pdf


You should select a doctor who agrees to be in charge of overseeing your 5 year plan and who will make sure that periodic follow-up check-ups are done according to schedule.

You should also have a look at your overall risk factor profile for colon cancer.

Do you have any risk factors for colon cancer? Here is a link to the Mayo Clinic website where they give a list of thirteen risk factors for colon cancer. Do you have any of these 13 risk factors?

Risk Factors - Factors that may increase your risk of colon cancer (scroll to bottom of the web page below to see the list)
https://www.mayoclinic.org/diseases-conditions/colon-cancer/symptoms-causes/syc-20353669

If you are Stage II and don't have any of these 13 risk factors, then you are in good shape. However, if you are Stage II and have one or more of the 13 risk factors on the list, then you should probably see an oncologist and discuss how your risk-factor profile may affect your overall survival and discuss ways that you could lower your overall risk.

Violet
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Joined: Mon Aug 15, 2016 6:43 am

Re: Stage 2- no follow up care???

Postby Violet » Tue Jun 12, 2018 8:53 pm

Hello,

I second the need for referral to an oncologist. That follow-up care doesn't sound standard to me. My husband had a stage one rectal cancer (T2N0MO) 2.5 years ago. The surgeon initially told us we didn't need to see an oncologist because no chemo was required. In my opinion, patients with colorectal cancer, regardless of stage, should consult with an oncologist. I insisted we did and though he ultimately decided not to give chemo, he gave us a lot of important and useful advice such as use of aspirin to reduce risk of recurrence, role of regular exercise in reducing risk of recurrence and an appropriate follow-up plan which includes three monthly blood tests (CEA) and CT chest abdomen and pelvis initially six monthly and then yearly for five years. The role of aspirin and exercise were not mentioned once by the surgeon and I feel very grateful we saw the oncologist who also explained the rationale for no chemo and the risks and benefits of chemo.

Don't be afraid to be pushy if they say its not necessary- its your life!

Violet

Teddybear
Posts: 37
Joined: Sun Feb 11, 2018 3:23 pm

Re: Stage 2- no follow up care???

Postby Teddybear » Tue Jun 12, 2018 10:21 pm

I am stage 2A colon cancer as well. When making my decision about follow up I did a few things you might want to consider.
1. I asked for second review of pathology. Oncologist told me the best second opinion is a second review of pathology from major cancer center. My insurance did cover this. Everything I discussed with oncologist was based on pathology being accurate. Your oncologist can easily order this.

2. Gene testing from oncogene dx. You can look this up online. It was designed for stage 2 and questionable stage 3. It evaluates your tumor gene profile to determine recurance rate. My doctor liked this, but it is considered not necessary by a lot of oncologist. I believe this is because of the price. $4000 is what is quoted, but my insurance paid $2000. Many insurances don’t cover this for colon yet. However I was told it is standard for breast cancer. It did help me determine if Xeloda would be a good choice for me.

3. I consulted 3 oncologist and I learned something different from them all. They all said blood work, scans and colonoscopy were mandatory for 5 years. You really need to consult an oncologist because they handle your follow up care.

Sorry you are going through this and I hope the responses help.
DX CC Feb 2018
Feb 2018 Lap sigmoind resection
2A
T3N0M0/G2
0/14 nodes
no invasion
Margins clear
MSS
April-June 2018 Xeloda

emkaye
Posts: 37
Joined: Tue May 22, 2018 1:37 am

Re: Stage 2- no follow up care???

Postby emkaye » Fri Jun 15, 2018 6:56 am

So I'm in the same place with my mom. Just diagnosed with IIA.
She was advised by oncologist that no chemo was needed. I want to trust this but am a bit scared as well.
We live near a major cancer center (they did not do the surgery) so I might have them take a 2nd look. That is good advice.
I just want to be sure we're doing everything we can to be sure that this does not come back.

dauofcamom
Posts: 30
Joined: Sun Apr 22, 2018 7:11 pm

Re: Stage 2- no follow up care???

Postby dauofcamom » Fri Jun 15, 2018 7:32 am

emkaye wrote:So I'm in the same place with my mom. Just diagnosed with IIA.
She was advised by oncologist that no chemo was needed. I want to trust this but am a bit scared as well.
We live near a major cancer center (they did not do the surgery) so I might have them take a 2nd look. That is good advice.
I just want to be sure we're doing everything we can to be sure that this does not come back.


I am so happy for you and your Mom that her staging wasn’t more advanced! Definitely get a second look though.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime

NHMike
Posts: 1799
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage 2- no follow up care???

Postby NHMike » Fri Jun 15, 2018 10:06 am

I've spoken to my surgeon about oncology stuff and my oncologist about surgeon stuff. They are not the experts in the area and the expert has the final say. I would at least talk to an oncologist to look over the situation and get a recommendation.
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; 9/8: 1.8; 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
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

DarknessEmbraced
Posts: 3156
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Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stage 2- no follow up care???

Postby DarknessEmbraced » Tue Jun 19, 2018 8:29 am

I was diagnosed as 2a in 2014. Chemo wasn't recommended. I had a colonoscopy the first year after surgery which was clear. I was told no colonoscopy for 3 years. My colonoscopy was due this year but because I had a colonoscopy in 2016 due to ongoing symptoms my surgeon said no colonoscopy for 5 years. I don't see an oncologist because I didn't have chemo. I get CEA and CA 125(tumor markers) tested every 3 months and have yearly ct scans with contrast. Next year is my last year for follow up care. I'm not certain if I will get scans later on or tumor markers tested.
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

Deb m
Posts: 441
Joined: Tue Jan 14, 2014 10:08 am

Re: Stage 2- no follow up care???

Postby Deb m » Tue Jun 19, 2018 3:38 pm

You need to see an oncologist and get all the specifics from your pathology report. Many stage two's require treatment with very close surveillance for up to 5 years. You need to fine out if it was poorly differentiated, or highly differentiated, or moderately differentiated. What was the T rating, Were you positive for Lymph channel invasion. You say that you had 11 nodes removed. I was told that by our oncologist that if less than 12 nodes were removed, that alone puts you in the high risk stage II category and chemo is highly. recommended. As others have said, it's not up to the surgeon to make the call as whether to do chemo or not.


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