New here, my spouse colonscopy likely. Scared.

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Nycomomohead
Posts: 22
Joined: Sat Oct 30, 2021 7:34 pm

New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Sun Oct 31, 2021 7:07 am

I thank God that I found this forum.

On 11.29.2021 my wife had her colonscopy. She is 49, they found 6 polyps and a 2cm mass 10cm from the anal verge. Also, they found inflamation in her stomach with a endoscopy which is also getting biospy.

The doctor removed the polyps and applied clips. Tumor was sampled for biospy. She requested a rapid biopsy for Monday.

I have been researching what lies ahead. The doctor told my wife and listed in the report that the mass is likely malignant. Regardless, she said surgery will be needed.

My wife did not have a CT scan or MRI done and due the clips, no MRI for 2 weeks.

Leading up to this, my wife started seeing some bloody stool in Jan. We thought hemorrhoids. The bleeding was not consistent, and seemed to be more prevalent on longer car rides.

Fast forward and we are here today.

I have been reading different options for rectal cancer, and it looks like my wife has a tumor in her mid rectum? Does this put her as a candidate for TME, or WW. Would she need stoma. Radiation, chemo.

So many things in my mind and my wife. I can't sleep.

We are located in South Jersey, near Philly. I have reached out to my primary to see if we can get her a CEA. I have requested a consultation with MSK. They said they need to see the biopsy.

MSK can be 2+ hours away, dependent on traffic. I reached out to my network for recommendations on Surgeons, and will schedule with one based out of UPenn.

Should I also try to find an Oncologist, now?

I am starting to document everything. At the least, thank you for listening.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

roadrunner
Posts: 186
Joined: Sun Jan 12, 2020 8:46 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby roadrunner » Sun Oct 31, 2021 7:13 pm

This is a challenging situation, but I urge you to try to try to clear your mind and consider what you know, as opposed to what you don’t—what might happen next. There is a rectal mass, and it’s not tiny, but it’s not huge. Your wife’s doctor said it’s likely malignant, and they’re usually right, but nothing is certain yet. The big issue is initial staging. Even if the mass is cancer, the biggest issue there is whether it has spread beyond the rectum. That will likely be determined through scans, which may take a while.

I would urge you to: (1) learn if that feels right to you—this forum is a good source of information but there are many others; (2) take cues from your wife as to how she wants to approach this and try to work with her to make things as productive, as smooth, and as easy as possible; (3) be patient with this initial, information gathering stage; (4) base your questions and decisions on facts, not other questions or speculation; (5) do a signature below as soon as you can (that helps others understand your situation better).

I will say this much. It seems like there’s a decent chance it’s cancer, but it could be almost anywhere on the spectrum even if it is. And no, surgery is not a given. If it turns out neoadjuvant chemotherapy and/or chemoradiation are options and work out well your wife could be a candidate for a “watch & wait” protocol (some colorectal surgeons and programs do this for rectal cancer, others don’t). There are less invasive/more targeted surgeries for certain rectal cancers as well, such as TAE.

Once you have the biopsy you will likely start with the scans. After that your wife should receive a proposed treatment plan. That’s the time to be well-informed and consider all options. Right now, I know it’s tough, but you need more information.

Good luck!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

Dennyp
Posts: 24
Joined: Thu Oct 29, 2020 9:28 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Dennyp » Sun Oct 31, 2021 9:15 pm

I agree with Roadrunner, don’t get ahead of yourself, wait until you have more information before you set things in motion. Getting a second opinion from MSK is a good start. Once you know what you are dealing with MSK, or whoever will treat your wife will help you with the next steps. Stay off the internet as much as you can. This forum is very helpful, some others less so.

Good luck!
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/2 CT NED

Nycomomohead
Posts: 22
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Mon Nov 01, 2021 5:28 am

Thank you, I will take your advice to heart.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

Nycomomohead
Posts: 22
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Tue Nov 02, 2021 6:21 pm

My wife has biopsy was returned. The 2cm mass, 10cm from the anal verge is adenocarcinoma moderately differentiated.

I have an appointment with a the first surgeon tomorrow. CT scans, bloodwork, etc. have not been done yet. He will order it, but will require scheduling and pre-approval. I will request urgent approval.

What else can I expect from the consultation? Will he walk through scenarios, or apply what was found in the colonscopy, biospy, placement of the tumor, etc. as guidance to potential options? Or will they await results of CT scan, blood work, etc.

Thank you.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

roadrunner
Posts: 186
Joined: Sun Jan 12, 2020 8:46 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby roadrunner » Wed Nov 03, 2021 11:27 am

I think the most important initial question is: How will they do initial staging (what exams and scans)? I think I had an MRI, CTs, and physical examinations. Eventually had a PET. The treatment question will await the initial staging. Stages 2 and 3, for example, are quite different. Once you know the stage (and in particular whether there is metastatic disease or local lymph node involvement) you will need to hear their proposal, then evaluate it against other options (there are options at each stage, and it gets more complicated as stages increase.).

A big question for you right now is how much to research. Some avoid this like the plague, others dive in. I did the latter. I agree, however, that worrying about eventual outcomes right now is far too speculative. If I were in your shoes, I’d certainly look no farther than staging issues and potential treatment options for locally advanced disease. Not that your wife even clearly has that, but Stage 4 is too complex and situation-specific to worry about yet, and stage 1 is comparatively straightforward, so 2 and 3 (locally advanced) treatment options might theoretically be interesting to look at. This will move fast, so it may help to be prepared. At these stages, the biggest questions in recital cancer are around proposed surgical approach, chemo, radiation, and timing/order of these.

But it would be perfectly reasonable to take a breath and wait for initial staging.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

Dennyp
Posts: 24
Joined: Thu Oct 29, 2020 9:28 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Dennyp » Thu Nov 04, 2021 8:07 am

Nycomomohead wrote:My wife has biopsy was returned. The 2cm mass, 10cm from the anal verge is adenocarcinoma moderately differentiated.

I have an appointment with a the first surgeon tomorrow. CT scans, bloodwork, etc. have not been done yet. He will order it, but will require scheduling and pre-approval. I will request urgent approval.

What else can I expect from the consultation? Will he walk through scenarios, or apply what was found in the colonscopy, biospy, placement of the tumor, etc. as guidance to potential options? Or will they await results of CT scan, blood work, etc.

Thank you.


It sounds like you are on top of everything. My first meeting with my surgeon after diagnosis consisted of him presenting me with options (I had a ct scan and blood work almost immediately, I’m not sure how the conversation would have proceeded without that data) and him telling me what he thought the best course of action. I got a second opinion at MSK and they presented me with a broader spectrum of options and suggested a different option as the best way to move forward. I decided to go with the surgeon at MSK. It was the best decision for me and I have been very happy with my care and the outcome.

As you move through the diagnostic process you learn more about your disease. The pathology from surgery gives you the clearest picture of the nature of your particular disease. Cancer is such a heterogeneous disease, patients presenting with similar characteristics can have very different outcomes. Statistics about outcomes are of little value when evaluating your particular disease. Once you settle on a team and treatment plan trust the process.
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/2 CT NED

MadMed
Posts: 55
Joined: Sun May 02, 2021 5:52 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby MadMed » Thu Nov 04, 2021 10:39 am

Nycomomohead wrote:My wife has biopsy was returned. The 2cm mass, 10cm from the anal verge is adenocarcinoma moderately differentiated.

I have an appointment with a the first surgeon tomorrow. CT scans, bloodwork, etc. have not been done yet. He will order it, but will require scheduling and pre-approval. I will request urgent approval.

What else can I expect from the consultation? Will he walk through scenarios, or apply what was found in the colonscopy, biospy, placement of the tumor, etc. as guidance to potential options? Or will they await results of CT scan, blood work, etc.

Thank you.



Sorry you are here, you'll get a lot of help from reading and posting. I think the key to start is the staging, that'll come from getting an MRI. Oncologist or surgeon will order one.
You need to put the team together, for example i was diagnosed Friday, the next week i had setup appointments with oncologist, radiation and surgeon. You want them all to be board certified. Surgery is the most critical step, you want the best surgeon you can get. I wrote down questions before meeting with each Dr. That helped, also some will allow you to record or take notes. My surgeon asked me to record the meeting. You'll get an avalanche of info, and that's a good thing, you don't want a Dr that tells you little.

My surgeon meeting was a crash course into the digestive system and the various options for rectal cancer, Watch and Wait, TME, Pelvic exenteration etc..

For RC the "standard of care" currently is called Total Neoadjuvant Therapy: Chemo then Radiation followed by surgery. Or Radiation then Chemo and then surgery. Staging and pathology is important.

You will want a signature like we all have, it'll help keep notes and get specific help. Here's the advice I got when I joined:

A link to the signature creation page is here. (NOTE: Signatures are limited to 512 characters including spaces.)

http://coloncancersupport.colonclub.com ... =signature

The kinds of things that you might want to put in your signature are listed in this post:

http://coloncancersupport.colonclub.com ... 97#p421597

You might also want to look at this post, which gives some perspectives on Rectal Cancer diagnosis and treatment options:

viewtopic.php?f=1&t=65286&p=507636#p507636

Quick Edit, you will want to know from the biopsy the genetic make up of the tumor. MSI or MSS is important for the next step, chemo or immunotherapy.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
Break before surgery scheduled 1/27/22

Nycomomohead
Posts: 22
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Fri Nov 05, 2021 7:26 am

Thank you so much.

I will get my signature updated.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

Beckster
Posts: 437
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New here, my spouse colonscopy likely. Scared.

Postby Beckster » Sat Nov 06, 2021 5:41 am

I am located in South Jersey also! If you want a rock star colon rectal surgeon, I would highly recommend Steven McClane at the MD Anderson at Cooper...https://www.cooperhealth.org/doctors/st ... al-listing
a He is the department head and co director of the MD Anderson Gastro Center.

He did my surgery 5 years ago and I would recommend him to anyone. When I needed an oncologist, I stayed at MD Anderson with Dr. Jamin Morrison. I have received excellent care and in my last year of surveillance. If you need another gastroenterologist consult, I would highly recommend Dr. Chris Deitch. All of these doctors work together as a multi disciplinary approach and each specialize in colon cancer. If you want more info, please feel free to message me.

Good Luck
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 reaction
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20 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
Clear Colonoscopy 10/17, 11/19 :D

DarknessEmbraced
Posts: 3666
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New here, my spouse colonscopy likely. Scared.

Postby DarknessEmbraced » Sat Nov 06, 2021 7:57 am

I'm sorry for your wife's diagnosis. *hugs* I hope you will get more information soon. *hugs*
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Nycomomohead
Posts: 22
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Sun Nov 07, 2021 11:27 am

Beckster, thank you so much. How would I be able to contact you?



Beckster wrote:I am located in South Jersey also! If you want a rock star colon rectal surgeon, I would highly recommend Steven McClane at the MD Anderson at Cooper...https://www.cooperhealth.org/doctors/st ... al-listing
a He is the department head and co director of the MD Anderson Gastro Center.

He did my surgery 5 years ago and I would recommend him to anyone. When I needed an oncologist, I stayed at MD Anderson with Dr. Jamin Morrison. I have received excellent care and in my last year of surveillance. If you need another gastroenterologist consult, I would highly recommend Dr. Chris Deitch. All of these doctors work together as a multi disciplinary approach and each specialize in colon cancer. If you want more info, please feel free to message me.

Good Luck
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.

Beckster
Posts: 437
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New here, my spouse colonscopy likely. Scared.

Postby Beckster » Mon Nov 08, 2021 10:31 am

You should be able to private message me on the forum....I will try to contact you for a reply...check "private message" on the upper right side


Nycomomohead wrote:Beckster, thank you so much. How would I be able to contact you?



Beckster wrote:I am located in South Jersey also! If you want a rock star colon rectal surgeon, I would highly recommend Steven McClane at the MD Anderson at Cooper...https://www.cooperhealth.org/doctors/st ... al-listing
a He is the department head and co director of the MD Anderson Gastro Center.

He did my surgery 5 years ago and I would recommend him to anyone. When I needed an oncologist, I stayed at MD Anderson with Dr. Jamin Morrison. I have received excellent care and in my last year of surveillance. If you need another gastroenterologist consult, I would highly recommend Dr. Chris Deitch. All of these doctors work together as a multi disciplinary approach and each specialize in colon cancer. If you want more info, please feel free to message me.

Good Luck
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 reaction
1/2/17 to 6/9/17- Xeloda
6/17,12/17,6/18,12/18,6/19,12/19,12/20 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
Clear Colonoscopy 10/17, 11/19 :D

JJH
Posts: 331
Joined: Mon Apr 24, 2017 7:26 am

Re: New here, my spouse colonscopy likely. Scared.

Postby JJH » Mon Nov 08, 2021 1:12 pm

Nycomomohead wrote:Beckster, thank you so much. How would I be able to contact you?

You can contact Beckster by sending her a Private Message (PM). Here is the link for that:

https://coloncancersupport.colonclub.com/ucp.php?i=pm&mode=compose&u=105145
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Nycomomohead
Posts: 22
Joined: Sat Oct 30, 2021 7:34 pm

Re: New here, my spouse colonscopy likely. Scared.

Postby Nycomomohead » Wed Nov 10, 2021 10:42 am

I contacted Becky. Thank you so much for her support and advice.

Update: I have placed a signature, I hope I have done it correctly.

My wife has been staged as a Stage 1 T2NOMO, Rectal, 2CM - 7.8 from AV. The doctor is recommending surgery only. LAR. Potential of a temporary ileostomy (surgery call).

For Stage 1, T2NO. I understand the current gold standard for rectal is to do a LAR, but my wife and I obviously have some concerns about this major surgery and post-impact. Further, the goal is to do our best to avoid reoccurrence. I see that some have gone down the path of radio, chemo and then W&W. Some have gone with radio, chemo, and TEM vs LAR. The surgeon really only is recommending LAR. Post the surgery, pull the biopsy to see what additional course of action may be required.

Additionally, the surgeon is bringing up the consideration of a hysterectomy. Have any of you had experience in being asked to consider this, and why? I believe one of the indicators that may lean towards this, is Lynch (following up on this).

To date, this Surgeon has been wonderful, and the team has also been very responsive, professional, and shown care.

As we weigh the decisions, I am attempting to get a consultation with a major CC out of Philly (scheduling is not easy). I also have a consultation with MSK. With that said, I don't want to prolong the decision-making process.

Any advice on what else I should be asking? I have a schedule with the Genetics team. Should I look at any genetics or DNA now vs post?

Any advice on what I should do in advance, post-surgery if we go for LAR.

Thank you.
Spouse, DX, 49F - Rectal Stage 1 - T2NOMO - 2CM - 7.8 from AV.
10.29.21 Rectal tumor 2cm, 10cm from AV | colonoscopy
11.01.21 Biospy - Malignant - adenocarcinoma
11.03.21 First consultation with Surgeon & Onc
11.04.21 CBC blood work looked good. CEA at 1.1
11.05.21 CT Scan. Good, no sign of spread. Precautionary Liver MRI scheduled.
11.09.21 MRI Pelvis. MRI Liver.
11.09.21 Staged as Stage 1. T2NOMO - 2CM - 7.8 from AV.


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