Please help - Diagnosed yesterday and confused

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Please help - Diagnosed yesterday and confused

Postby SilverWedding » Sat May 18, 2019 6:27 am

Dear Everyone,

My husband was diagnosed yesterday with a 5cm mass called colorectal cancer. We have set up bloodwork and CT scans of abdomen, Pelvis, and thoracic area. We were told by Colonoscopy Dr to see another doctor Thursday. I looked him up - surgeon but says nothing about oncology.

What dr do we need??!!

Oncology?
Colorectal Surgeon?

Are any doctors both of those?

I am crying so hard and see no help groups in Delaware.

Please help us
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

martd
Posts: 128
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Please help - Diagnosed yesterday and confused

Postby martd » Sat May 18, 2019 10:08 am

The surgeon will most likely refer you to an oncologist. It's important that the surgeon is board certified. But the best move right now is get to a major nci designated cancer center. You can do a web search or search this forum, there is a list posted here somewhere, sorry I don't know the topic.

The beginning is very overwhelming and scary but this is a great place for information.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Please help - Diagnosed yesterday and confused

Postby Beckster » Sat May 18, 2019 11:01 am

Your Gastro dr is sending you to a surgeon to see the type of surgery needed to remove the tumor...right sided, left sided? Please make sure that the surgeon is a board certified colon rectal surgeon....this is the most important step. Also, when seeing an oncologist, please make sure that you go to a major cancer center. I think Helen F. Graham Cancer Center & Research Institute in Delaware is one. If not, you have University of Penn, Fox Chase, MD Anderson at Cooper, Jefferson.... I am from NJ...I had my surgery at Cooper University and my Oncologist is from MD Anderson at Cooper. You should not be far from there.

Good luck....once you get all the information, you will feel better... Keep us updated.
57/F
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Please help - Diagnosed yesterday and confused

Postby Green Tea » Sat May 18, 2019 12:58 pm


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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Please help - Diagnosed yesterday and confused

Postby SilverWedding » Sat May 18, 2019 3:33 pm

Thank you so much. This day is the most traumatic I’ve ever had. I am so scared. You are my only help right now.

1) I’m 5 minutes from the Helen F. Graham Center in Delaware. It’s website says it is that NCI thing, yet the link you sent to find NCI Cancer Centers doesn’t list it. In fact it lists nothing for Delaware. I don’t know the truth as to whether it is NCI or not!? Here’s the site https://christianacare.org/facilities/h ... cercenter/

2) Thank you for the link on that Board Certification. Dr. Vaid is indeed listed. Praise God.

3) If you say The Graham Center is NCI, should I call now and get something set up somehow?

Again, the plan is
Monday - bloodwork surgeon Dr Vaid ordered
Wednesday - almost full body CT scans with dye
Thursday - see surgeon Dr. Vaid
Friday - see colonoscopy dr again for some reason

I’m looking at Colonoscopj Report. It says

1) Terminal ileum was normal
2) internal and External Hemorrhoids
3) Diverticulosis of Sigmoid Colon
4) Large, more than 5cm, firm friable mass starting at dentists line extending into rectal vau. The mass occupies 2/3 circumference of dentate line.

Is this the worst it could be?


Thank you sooooo much.

I feel like
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Please help - Diagnosed yesterday and confused

Postby Beckster » Sun May 19, 2019 7:00 am

According to their website....https://christianacare.org/services/cancer/abouthfgcc/, it lists as a NCI community center. I think this is the same as MD Anderson at Cooper...Cooper Umiversity is not listed as a NCI center, but MD Anderson at Cooper is considered NCI due to the community relationship with MD Anderson in Houston. I would assume that he is also getting bloodwork and a CEA test. Depending on pathology after surgery, if you feel that you need a second opinion...get one! Let us know how you make out after you test results and surgeon meeting. I would wait to make an appt....see what the surgeon tells you first. He would recommend the oncologist, but if it is a different cnter, tell him where you want to go. I would use the cancer center website and search medical oncologist that specialize in gastro cancers. Look at their credentials, so you can pick the one that you feel fits the bill.

This forum has great people that will help you through this journey....take a deep breath, make a list of questions, and ask for clarification if needed.
57/F
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Please help - Diagnosed yesterday and confused

Postby Green Tea » Sun May 19, 2019 9:23 am

SilverWedding wrote:...
Again, the plan is
Monday - bloodwork surgeon Dr Vaid ordered
Wednesday - almost full body CT scans with dye
Thursday - see surgeon Dr. Vaid
Friday - see colonoscopy dr again for some reason

I’m looking at Colonoscopy Report. It says

1) Terminal ileum was normal
2) internal and External Hemorrhoids
3) Diverticulosis of Sigmoid Colon
4) Large, more than 5cm, firm friable mass starting at [dentate] line extending into rectal vau. The mass occupies 2/3 circumference of dentate line.
...

Thank you for posting this information. I will reply with some tentative thoughts so that you will at least have some basis for your meeting with the surgeon on Thursday. Between now and next Thursday you will have to do some homework so that you can understand the technical terms that the surgeon may be using in his explanation of your options.

The main issue, in my opinion, is that the tumor is judged to be very, very low and is resting on the dentate line itself. This makes it very difficult to do a clean surgery because both the internal and external anal sphincter muscles are located there, just outside the rectum/anal-canal wall. Furthermore, there may be even other problems once the results of the pelvic scan are in: The scans may show cancer involvement in adjacent areas, such as the bladder, the pelvic lymph nodes or in the sphincter muscles themselves.

First, before next Thursday you should learn more about the anatomy of the rectum and the anal canal. Here is an image showing the area where the pectinate or dentate line is located. It is very close to where the sphincter muscles are located: Anal canal image
For dealing with cancers in this location, I think that there are two (or maybe three) main surgical options available. The first of these is called ULAR (Ultra Low Anterior Resection), and the second is called APR (Abdomino-Perineal Resection). You should familiarize yourself with these two terms before next Thursday.

Here is a prior thread on this forum with 16 posts concerning ULAR vs APR. You can read through the responses to see what the main issues are.
Difficult decision: ULAR or APR?
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53956

And another, more recent, thread:
APR surgery for low rectal tumor
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=62441

Here are two scientific articles that deal with this area:

A retrospective analysis of ultralow anterior resection vs. abdomino-perineal resection for lower rectal cancer.
https://www.ncbi.nlm.nih.gov/pubmed/22246189

Abdominoperineal Resection: How Is It Done and What Are the Results?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2789508/

In addition, you can look at what some of the cancer center websites say about the options for rectal cancer surgery:

Surgery options for rectal cancer
https://www.cancersa.org.au/information/a-z-index/surgery-for-bowel-cancer

https://www.texasoncology.com/types-of-cancer/rectal-cancer/surgery-for-rectal-cancer/

From the plan for next week that you posted above, it looks like your scan results and lab results will be done at the last minute and probably not be available to you until you meet with the surgeon. If that is the case, you will have to be prepared for a barrage of technical terms that you have not yet encountered. You may have to ask the surgeon to slow down and to explain each of the unknown terms that show up in the scan reports and the lab report. It is important that you understand all of the technical details before you are asked to make a decision.

Before next Thursday, try to do as much research as you can about low rectal tumors so that you can follow the surgeon's discussion. Try not to be pressured into making any decision on the spot. Ask for more time to study the issue or to solicit a second opinion if you think you need to.

Here is a sample of an Informed Consent Form for an Abdominal-Perineal Resection. It will give you an idea of what is involved in that type of operation:
https://www.health.qld.gov.au/__data/assets/pdf_file/0034/149695/colorectal_01.pdf

Another resource you can study this week is the NCCN Quick Guide to Rectal Cancer. It gives a good, easy-to-read, summary of the different tests involved and the available treatments for the different stages of Rectal Cancer. You should make yourself familiar with the different stages in the TNM staging system, because tentative staging is the primary objective of the different tests being done this week:

https://www.nccn.org/patients/guidelines/rectal/index.html

About the NCI designation for the Graham Center, it is classified as an NCI Community Cancer Center, not as an NCI Comrehensive Cancer Center. NCI has two levels of cancer center certification. The top level is Comprehensive Cancer Center, of which there are now 70 in the country. Below that are the NCI Community Cancer Centers. The Christiana Hospital has been a Community Cancer Center for over 10 years. This is different from a Comprehensive Cancer Center.
Last edited by Green Tea on Mon May 20, 2019 11:37 pm, edited 4 times in total.

Beckster
Posts: 438
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Please help - Diagnosed yesterday and confused

Postby Beckster » Sun May 19, 2019 11:12 am

"About the NCI designation for the Graham Center, it is classified as an NCI Community Cancer Center, not as an NCI Comrehensive Cancer Center. NCI has two levels of cancer center certification. The top level is Comprehensive Cancer Center, of which there are now 70 in the country. Below that are the NCI Community Cancer Centers. The Christiana Hospital has been a Community Cancer Center for over 10 years. This is different from a Comprehensive Cancer Center."

Yes this is true, but it is the only one in Delaware that is close to an NCI Comprehensive Center guideline facility. Since I live 45 minutes from you, you can also look into going to Phia...Univerisity of Penn, Jefferson, Fox Chase if you want a comprehensive center....If you are closer Maryland, you can look into John Hopkins and University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Center both of which are in Baltimore.
57/F
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
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20,12/21 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, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0 12/20 2.7 6/21 2.9,[color=#000000]12/21 2.7[/color]
Clear Colonoscopy 10/17, 11/19,11/21 :D

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: Please help - Diagnosed yesterday and confused

Postby Soccermom2boys » Sun May 19, 2019 9:31 pm

Silverwedding— Welcome to the group no one willingly wants to join! I am not a one-person support group, but I am from Delaware as well. I did all of my treatments through the HFG cancer center and while it may not be the most renowned, it does a good job. It also doesn’t hurt to get a second opinion if after the scans you find you want an extra set of eyes. I appreciated that I never had to drive more than 15-20 minutes to get to any of my appointments and I always felt like my various doctors knew me and cared about me and listened to me. I do not know the doctor, Dr. Vaid, that you have mentioned. I went to Dr. Denstman who is in with the Colorectal Associates of Delaware practice—he is also board certified. He has done all of my colonoscopies as well as my surgery—I had to have a permanent colostomy due to the anal sphincters being too close to the tumor and I was more concerned about having clean margins for surgery vs keeping my anal sphincters. I have a separate oncologist who did the actual ordering of the chemotherapy treatments and I also needed chemo radiation and that was a separate radiologist—but did all of that at the HFG cancer center. This will be a busy week, but an important one to start getting the pieces all in place to properly treat your husband. Hang in there, it will all come together. As you will soon find out, nothing about this process is quick unfortunately. Keep coming back for support, some excellent people on here who have lists for you on what to ask, etc. I will help out if any questions specific to HFG as I can recall—I had my treatments there three years ago. I still go every six months for follow up appointments, I will be back there next month for my next one.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

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Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Please help - Diagnosed yesterday and confused

Postby Green Tea » Mon May 20, 2019 5:48 am

SilverWedding wrote:...Again, the plan is
Monday - bloodwork surgeon Dr Vaid ordered

For your bloodwork today, would you be able to ask which blood test panels they will be doing? For example...

Complete Blood Count (CBC) and Comprehensive Metabolic Panel (CMP-14) Blood Test Panel
https://christianacare.testcatalog.org/show/CBC
https://christianacare.testcatalog.org/show/CMP

Also, can you confirm with the lab that they will be doing the CEA tumor marker test, because this test is essential to have as part of the pre-surgery baseline. Thank you.

Here are some other tests recommended for inclusion in the comprehensive, pre-surgery baseline:

https://christianacare.testcatalog.org/show/CA-19-9 - $114.00
https://christianacare.testcatalog.org/show/CRP - $58.50
https://christianacare.testcatalog.org/show/LD - $30.00
https://christianacare.testcatalog.org/show/VITD - $244.00

rp1954 wrote:Here are some major problems that most colon cancer patients don't overcome and cost them dearly:
Day 1, day of diagnosis until first major treatment
A. Inadequate "basic bloodwork", add $75 - $300; I advocate even more bloodwork.
The most commonly missing initial "basic bloodwork": CA199, hsCRP, LDH, 25-hydroxy-vitamin D

Ref: https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61741&p=487962#p487962
Last edited by Green Tea on Tue May 21, 2019 7:20 am, edited 6 times in total.

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

Re: Please help - Diagnosed yesterday and confused

Postby NHMike » Mon May 20, 2019 9:01 am

I had a mass and went to the ER and then had a colonoscopy (without full prep) by a GI doc. The GI doc became my point doctor. He set up meetings with the oncologist and radiation oncologist as I had rectal cancer and the protocol for my stage was chemo and radiation first before surgery. I would guess that your husband has colon cancer which is usually surgery first. The GI doctor wanted a second colonoscopy with proper prep to check the rest of the colon.

It's a very scary time as we've grown up in an era where cancer takes a lot of lives but it has gotten a lot better in the last decade for survival rates.
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

User avatar
SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Please help - Diagnosed yesterday and confused

Postby SilverWedding » Wed May 22, 2019 12:18 pm

You are truly my best friends right now in the midst of panic attacks. I don’t say this lightly. Thank you. I haven’t focused enough to figure out how to tag you all in this.

Praise God for you. I need you all.

I just got my husband an appt with colorectal surgeon Dr. Dentsman in Delaware who not only works with oncologists at the Helen Graham Canver Center but who has specialized for years in this. I actually have some hope to have gotten this, but it’s not until Tuesday. It’s because of you that I found him though. My husband is happy about this too. Hope matters.

The CT people now want him back tomorrow for another dye test to get better rectal view. I don’t know why today’s wasnt good enough. More barium again.

Also, the surgeon wants him to have an enema before Tuesday’s meeting. I don’t know why. An exam?

I saw you all writing CEA. That was on the bloodwork order. We see colonoscopist (sp?) Friday. I presume he will point us to an oncologist? Or maybe scans will be clear of spread.

It is possible to have a large rectal mass that hasn’t spread to lymph nodes and organs, right.

Praying that the CT scans show no spread.

Cynthia
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

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

Re: Please help - Diagnosed yesterday and confused

Postby NHMike » Wed May 22, 2019 4:31 pm

SilverWedding wrote:You are truly my best friends right now in the midst of panic attacks. I don’t say this lightly. Thank you. I haven’t focused enough to figure out how to tag you all in this.

Praise God for you. I need you all.

I just got my husband an appt with colorectal surgeon Dr. Dentsman in Delaware who not only works with oncologists at the Helen Graham Canver Center but who has specialized for years in this. I actually have some hope to have gotten this, but it’s not until Tuesday. It’s because of you that I found him though. My husband is happy about this too. Hope matters.

The CT people now want him back tomorrow for another dye test to get better rectal view. I don’t know why today’s wasnt good enough. More barium again.

Also, the surgeon wants him to have an enema before Tuesday’s meeting. I don’t know why. An exam?

I saw you all writing CEA. That was on the bloodwork order. We see colonoscopist (sp?) Friday. I presume he will point us to an oncologist? Or maybe scans will be clear of spread.

It is possible to have a large rectal mass that hasn’t spread to lymph nodes and organs, right.

Praying that the CT scans show no spread.

Cynthia


My first CT was in the pelvic region. They had a second one to cover up to the shoulders to check for possible spread.

The surgeon does a digital rectal scan. Mine never asked for one but I always fasted for two days before going to see her so I was empty.

The doctor doing the colonoscopy is a Gastro-Intestinal doctor. I think that he could refer you or your husband's PCP could do this as well. There may be chemo recommended, after surgery, even if there is no visible spread.

My mass was over 100 cubic inches and that's pretty large. There were three suspicious lymph nodes but I had radiation so they couldn't tell whether or not those lymph nodes were cancerous (or they didn't indicate it on the pathology report). There was no observed organ spread for me.
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

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: Please help - Diagnosed yesterday and confused

Postby AmyG » Wed May 22, 2019 6:09 pm

SilverWedding wrote:
I saw you all writing CEA. That was on the bloodwork order.



So, CEA is a lovely tumor marker for some of us, others, not so much. For example, my post op CEA was 14 (normal for non smokers is less than 3) and during the course of my pregnancy it rose accordingly to over 171 as I was untreated for 8 months after diagnosis. But I know I'm stage 4 with a single tumor in my liver. So I'd call it a good marker. It's since dropped with chemo, so that tells me it's working.

You guys might not learn anything from that particular test but it has the possibility to be helpful!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: Please help - Diagnosed yesterday and confused

Postby Soccermom2boys » Wed May 22, 2019 8:50 pm

Oh good, your husband will be seeing Dr. Denstman. He has been in the business for a while as you saw and has performed quite a few surgeries so it does give you peace of mind. I told him he can’t retire for a long long time! :lol: I have a permanent colostomy and he did a great job with it. As for the enema before the appointment, I had to do that also before my first appointment with him (although I was originally seeing him for a hemorrhoid, but left his office with a tumor :( ). The enema is so your husband is cleaned out for a digital exam. It will give the dr a sense of what he is dealing with. As for the colonoscopy, Dr. Denstman does mine as well—he does them a few mornings out of the DE Surgery Center near the old MBNA buildings on route 4. I liked that he does them because then I feel like he really has a whole picture of my situation. He also was the physician to put in/take out my port for the IV chemo treatments after my surgery. I do want to warn you that you could potentially be waiting on him in the waiting room—it just depends on who he is seeing and how much time they need. When you are the one in his office getting the crushing information you greatly appreciate that he is spending that time with you to explain what all is going on and listen to your questions, etc. so when you are out there sometimes having to wait longer than you want, you try to keep that in mind. I can’t say he is exactly “warm and fuzzy”, but he is caring and compassionate and knowledgeable and truthful in a gentle way and after every appointment with him my husband and I left feeling like I was in good hands—and I was!

Good luck with the CT scans—I will keep you and your husband in my thoughts. Once you are a member on the board for a while you can send/receive personal messages (PM). Once you get to that level we can message each other so I can help you out with any specific info about who your husband is seeing at HFG cancer center, etc. Hang in there!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox


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