1. < Colorectal Cancer

Unresolved Colon/Appendix Issues and Spinal Epidural Lipomatosis (SEL)

Posted by bonnieb81 @bonnieb81, Jun 23, 2020

In 2018 (Nov) I had colonoscopy showing 2 polyps one in my appendix or appendices orifice(not sure.. it was unclear to me) and no follow up by surgeon, so I pursued... he orders another Catscan which showed ‘thickening in cecum ... and mass concerning if malignancy... still no follow up... I pursued, so then yet another colonoscopy 12/24/2019... nothing stated of importance to me though after colonoscopy the surgeon stated by my bedside after procedure that I would need appendix removed and resection of colon... my friend was in room hearing this... still nothing came of it.. I got the reports only to find ‘diverticulitis! Never had that diagnosis and even that was inconclusive I believe! Now in 2/2020 he ordered another Catscan only report stated “too much stool in colon to see mass”... I’m still in the dark and the surgeon tells me all my pain, fecal incontinance... etc. is common... “he stated all the people in waiting room has fecal incontinance probably” making light of my situation I told him I must have closure... he’s done nothing! I’ve been dealing with manager of Tx oncology and still not getting cooperation for expedient second opinion.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

bonnieb81 | @bonnieb81 | Jan 2, 2021
In reply to @bonnieb81 "Thank you for your reply. I’m at my wits end!! I think the reason I can’t..." + (show)
@bonnieb81

Thank you for your reply. I’m at my wits end!! I think the reason I can’t get into Mayo may be due to Covid. But I wish they could give me at least some hope!!

Jump to this post

I’m replying to my reply! I have seen yet another surgeon, another colonoscopy, he’s scheduling an appendectomy to remove the 1. (Or 2) precancerous polyps in my appendeceal orifice. (If beds are available in all hospitals in Dallas are, I’m supposed to have surgery this month I think (I’ll know on Teleview w/new surgeon on Jan. 4th, 2021! Any help for ideas, or suggestions welcome. My husband is in decline, now almost 91, me soon to be 83. I’m concerned that once operating and polyps seen in appendeceal orifice is a Resection going to be needed... my concern I’ll ask surgeon on 1/4/21!! Thanks for any ideas or suggestions!

REPLY
3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 2, 2021
In reply to @bonnieb81 "I’m replying to my reply! I have seen yet another surgeon, another colonoscopy, he’s scheduling an..." + (show)
@bonnieb81

I’m replying to my reply! I have seen yet another surgeon, another colonoscopy, he’s scheduling an appendectomy to remove the 1. (Or 2) precancerous polyps in my appendeceal orifice. (If beds are available in all hospitals in Dallas are, I’m supposed to have surgery this month I think (I’ll know on Teleview w/new surgeon on Jan. 4th, 2021! Any help for ideas, or suggestions welcome. My husband is in decline, now almost 91, me soon to be 83. I’m concerned that once operating and polyps seen in appendeceal orifice is a Resection going to be needed... my concern I’ll ask surgeon on 1/4/21!! Thanks for any ideas or suggestions!

Jump to this post

Hello @bonnieb81,

No problem if you reply to your reply! Did you happen to read the biopsy report where it said that you have, "precancerous polyps in my appendiceal orifice"? I'm wondering if there was another name for this precancerous condition. I have had a rare form of cancer, carcinoid cancer, and I know that it can occur in the appendix, although it is rare.

The question about the resection is a good one to discuss with the surgeon on 1/4. Here is a link to a conversation on Connect on how to get started with a new specialist. I would encourage you to read it and see if it might prompt some more ideas prior to your meeting on the 4th,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Here are some other suggestions that were posted by Colleen Young recently,

Getting Your Doctor to Really See You https://thedoctorweighsin.com/getting-your-doctor-to-really-see-you/

It provides strategies about how you can, as a patient, get your doctor to engage with you as a person. It is divided into 3 parts:
– Individual flair can ignite conversation
– Appeal to the physician as both scientist and healer
– Let technology pave the path

Do you have someone who can stay with your husband while you are having surgery?

REPLY
1 reply
Sundance(RB) | @sundance6 | Jan 2, 2021
In reply to @bonnieb81 "I’m replying to my reply! I have seen yet another surgeon, another colonoscopy, he’s scheduling an..." + (show)
@bonnieb81

I’m replying to my reply! I have seen yet another surgeon, another colonoscopy, he’s scheduling an appendectomy to remove the 1. (Or 2) precancerous polyps in my appendeceal orifice. (If beds are available in all hospitals in Dallas are, I’m supposed to have surgery this month I think (I’ll know on Teleview w/new surgeon on Jan. 4th, 2021! Any help for ideas, or suggestions welcome. My husband is in decline, now almost 91, me soon to be 83. I’m concerned that once operating and polyps seen in appendeceal orifice is a Resection going to be needed... my concern I’ll ask surgeon on 1/4/21!! Thanks for any ideas or suggestions!

Jump to this post

Also, If you don't know, take a HOT BATH when you get home from the colonoscopy! A nurse told ne that 20 years ago. Have had manny in the 21 years since my resection!
Blessings
Sundance(RB)

REPLY
Sundance(RB) | @sundance6 | Jan 2, 2021
In reply to @hopeful33250 "Hello @bonnieb81, No problem if you reply to your reply! Did you happen to read the..." + (show)
@hopeful33250

Hello @bonnieb81,

No problem if you reply to your reply! Did you happen to read the biopsy report where it said that you have, "precancerous polyps in my appendiceal orifice"? I'm wondering if there was another name for this precancerous condition. I have had a rare form of cancer, carcinoid cancer, and I know that it can occur in the appendix, although it is rare.

The question about the resection is a good one to discuss with the surgeon on 1/4. Here is a link to a conversation on Connect on how to get started with a new specialist. I would encourage you to read it and see if it might prompt some more ideas prior to your meeting on the 4th,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Here are some other suggestions that were posted by Colleen Young recently,

Getting Your Doctor to Really See You https://thedoctorweighsin.com/getting-your-doctor-to-really-see-you/

It provides strategies about how you can, as a patient, get your doctor to engage with you as a person. It is divided into 3 parts:
– Individual flair can ignite conversation
– Appeal to the physician as both scientist and healer
– Let technology pave the path

Do you have someone who can stay with your husband while you are having surgery?

Jump to this post

EXCELLANT INFORMATION!
SUNDANCE(rb)

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 8, 2021
In reply to @bonnieb81 "I’m replying to my reply! I have seen yet another surgeon, another colonoscopy, he’s scheduling an..." + (show)
@bonnieb81

I’m replying to my reply! I have seen yet another surgeon, another colonoscopy, he’s scheduling an appendectomy to remove the 1. (Or 2) precancerous polyps in my appendeceal orifice. (If beds are available in all hospitals in Dallas are, I’m supposed to have surgery this month I think (I’ll know on Teleview w/new surgeon on Jan. 4th, 2021! Any help for ideas, or suggestions welcome. My husband is in decline, now almost 91, me soon to be 83. I’m concerned that once operating and polyps seen in appendeceal orifice is a Resection going to be needed... my concern I’ll ask surgeon on 1/4/21!! Thanks for any ideas or suggestions!

Jump to this post

Hi @bonnieb81,

As you mentioned in your last post you were going to have a phone appointment with your surgeon on Jan. 4. I was wondering if you got answers to your questions at that appointment.

Do you have a surgery date set yet?

REPLY
bonnieb81 | @bonnieb81 | Oct 15, 2021
In reply to @sueinmn "@bonnieb81 Wow, this has been quite a wait. No wonder you are concerned. You state you..." + (show)
@sueinmn

@bonnieb81 Wow, this has been quite a wait. No wonder you are concerned. You state you are frustrated working with TX Oncology - where are you located? Perhaps someone in the group can suggest another physician or group to see you. Are you still your husband's caregiver as well?
Sue

Jump to this post

Hi all… I’m in Dallas area, if anyone has an oncology specialist ,(colon) I still need closure on my initial diagnosis 2018 … Surgery July14, 2021… with a written explanation of the surgical procedure which completely changed in description ‘after’ surgery!!! Still no explanations if why the descrepancy in details of procedure… ! Now a follow up another colonoscopy July 2022!
I’ll be 84!!!!

REPLY
View MoreView Less
Please sign in or register to post a reply.