Please help - Diagnosed yesterday and confused

[Pyro]

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.

However, it’s not the same unfortunately. My Onc wouldn’t let me go to “MDA” in Phoenix, only Houston.

[Green Tea]

.... 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!

SilverWedding - Good luck with your meeting with Dr. V. today. We'll be thinking about you and hoping for a productive meeting. Be sure to ask questions and take good notes.

After your appointments today and tomorrow you should try to post several separate messages about the various meetings and outcomes this week. This is so that you can increase your message count here and eventually qualify for promotion to "Registered User" status with private messaging (PM) privileges. So far, you have posted only 3 messages, and that is not quite enough for advancement to regular user status. You need to post at least half-a-dozen to a dozen good, serious, non-trivial, non-spamlike messages to be promoted. It doesn't come automatically. It depends on how many good messages you have posted so far.

One of your goals this week, then, should be to post a few more messages so that by next Tuesday's meeting with the new doctor you can send and receive PM messages to/from people who are willing to help you here.

[michelle c]

Hello,

I just wanted to reply as I understand your fear and to let you know a bit of my story. I was diagnosed ten years ago with colon cancer. Wow, it's gone fast. I had blood in my stools and was referred for a colonoscopy. Gastroenterologist knew straight away it was cancer when she saw the tumor. She referred me to a surgeon and I had a CT scan of the chest, abdomen and pelvis. I had surgery the next week and was staged as Stage III colon cancer. Referred to an oncologist and had six months of chemo, follow up bloods and annual CT's and colonoscopies. It's a scary time but my advice is to stay away from Dr Google as it only heightened my anxiety. One day at a time. Best wishes xx

[Green Tea]

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

One reason might be that they do not have access right now to MRI services If so, then they will have to make do with a high-definition CT scan with contrast.

In the article below, they explain why MRI imaging might be better than CT scan for initial diagnosis of the primary tumor, in particular for assessing the depth of invasion of the tumor into the rectal wall (i.e., the "T" element in the TNM staging framework). A pelvic CT scan with contrast can give some infomation on this, but (according to the article below) an MRI can give a better, highly detailed, 3-dimensional definition.

For your husband's initial diagnosis, a crucial point of information is the level of penetration (if any) of the tumor into the rectum wall since this determines the difficulty of any subsequent surgery. They have to get a very, very good estimate of how far (if at all) the tumor has infiltrated the rectal wall before they can decide which surgical technique is best to use.

CT Scan vs. MRI

"For purposes of tumor detection and identification, MRI is generally superior. However, CT usually is more widely available, faster, much less expensive, and may be less likely to require the person to be sedated or anesthetized."

"[MRI] provides much more soft tissue detail than a CT scan."

Ref: https://www.diffen.com/difference/CT_Scan_vs_MRI

[SilverWedding]

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! 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!

Thank you! I hope we can meet. I REALLY like Dr. Denstman too - he was clear and kept us focused on the objective - curing the disease.

His plan was more than i expected as follows:
1) Radiation and chemo now this summer
2) Surgery PART 1 in fall
3) Healing rest time while temp colostomy
4) Winter surgery PART 2 to reconnect
5) Chemo till next summer

It’s so so so much. And he is laid off. A lot of weight here.

I am very thankful for your info.

[SilverWedding]

...
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.

Thank you for all of this!!! HUGE help. I so appreciate the advice. I was well prepared to understand and ask questions because of this.

I hope we are right to go to Graham Center. Our surgeon works with them. I sure hope this is just as good as traveling to the higher tier.

Chemo and radiation first
Then first surgery for temp bag
Then heal
Then second surgery to rid of bag
Then chemonfor six months.

Sound good?????

[Rock_Robster]

Hi SilverWedding,

Looks like you’ve got a plan now, which is a much better place to be. Well done.

This is very similar to the plan we arrived at for my rectal tumour treatment (once the liver was dealt with)... the only difference is that my oncologist wants me to do the chemo after the resection (ie while I have the temp bag), then the reversal after chemo is done. This could however be because I’ve already done 6 cycles of neoadjuvant chemo (due to metastasis), so I only have max 3 months of FOLFOX left.

Best of luck!

[Green Tea]

...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!

Thank you! I hope we can meet. I REALLY like Dr. Denstman too - he was clear and kept us focused on the objective - curing the disease.

SilverWedding -I noticed that you now have enough posted messages to be promoted to regular member status, so you should now be able to send/receive private messages (PMs) to/from those members who wish to help you. You have to be logged in to see your private messages. If you have a message waiting in your Inbox, then you will see something like Private messages [1] on the upper right side of the banner after you log in.

[Green Tea]

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

Please help us

Actually, there are quite a few cancer support groups right there in the Wilmington area, with one of them not too far from you. Here is one with weekly meetings on Lancaster Pike with an initial orientation session for newcomer registration this Tuesday:

https://cancersupportdelaware.org/event/welcome-meeting-learn-about-programs-at-cscde/?instance_id=2653

In addition, this group apparently has a number of other events scheduled each month:

https://cancersupportdelaware.org/support/calendar/cat_ids~3/

There are other types of support groups available, too, like private online support groups that require prior registration

https://www.cancercare.org/support_groups/45-colorectal_cancer_patient_support_group: Start date, Monday, June 3.

Also, you might be interested in some of the specialized counseling opportunities available there in the Wilmington area:

https://www.psychologytoday.com/us/groups/de/wilmington
https://www.knowcancer.com/emotional-support/delaware/wilmington/

Then there are some church-affiliated spiritual support groups nearby in the Newark, DE area.

I think if you look long and hard enough you will find something that will give you the kind of support that you need.

... And don't overlook the support opportunities available there at your own hospital -- for example:

https://events.christianacare.org/event/faith-uncertainty-and-cancer/2019-06-06/

https://events.christianacare.org/event/health-info-on-the-go/

https://news.christianacare.org/2018/08/christiana-care-one-of-only-29-hospitals-with-top-ratings-from-u-s-news-world-report/