1. < Colorectal Cancer

Colostomy questions: Adhesion to other organs and odds of survival

Posted by chuckmii @chuckmii, Oct 20, 2023

Wife ended up in the ER after round 6 of 5FU due to an obstruction in her colon. Tried to do a stint to open her up, couldn’t. Had colostomy surgery yesterday. Oncologists and surgeons are fighting over whether the cancer is worse or not. Her CEA has gone down the entire time during the 6 rounds of chemo from 256 to 111 before we ended up here. The surgeon who did the colostomy said the cancer in her colon has spread to multiple places and is adhered to the bladder. The cancer in her peritoneum is adhered to her colon and stomach lining. He said he created a blow hole basically for the stoma because he could not find any flexibility in her intestine to bring it out. She is still partially connected/not a full disconnect of her colon. We are hearing different terminology between the oncologists, who seem to be trying to give us hope vs reality and the doctors. The tumors aren’t bigger, there is now a cyst around the tumor and that’s what’s bigger (when there is now a 6 inch mass in her peritoneum) who cares what it is… the oncologists don’t even want to speak with us now until she gets home from the hospital but we are really starting to question her quality of life and what her outlook really is. It seems the CEA is only one thing to consider and was giving us so much hope and that is now shattered. Sort of venting but also looking for anyone who has been through similar and what happened. Thanks

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 19, 2023

Hello @jt1957 and welcome to the Colorectal Cancer support group on Mayo Connect. I appreciate your encouraging words to @chuckmii.

As this was your first post on Connect, I'm wondering if you have also had colorectal cancer (or perhaps a family member has). If so, would you be comfortable sharing your experience?

REPLY
1 reply
jt1957 | @jt1957 | Nov 19, 2023
In reply to @hopeful33250 "Hello @jt1957 and welcome to the Colorectal Cancer support group on Mayo Connect. I appreciate your..." + (show)
@hopeful33250

Hello @jt1957 and welcome to the Colorectal Cancer support group on Mayo Connect. I appreciate your encouraging words to @chuckmii.

As this was your first post on Connect, I'm wondering if you have also had colorectal cancer (or perhaps a family member has). If so, would you be comfortable sharing your experience?

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A close friend had colon cancer and fought for 11 years, some of them good, and some very difficult for her and her family, especially after it metastasized to her brain. Another friend had rectal cancer and has also died.

I mostly read these posts in memory of those friends in the hope that treatments are being discovered and refined.

My main focus on Mayo Connect is the head and neck group; my husband recently had a laryngectomy after a recurrence of vocal cord cancer. I really appreciate these groups!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 19, 2023
In reply to @jt1957 "A close friend had colon cancer and fought for 11 years, some of them good, and..." + (show)
@jt1957

A close friend had colon cancer and fought for 11 years, some of them good, and some very difficult for her and her family, especially after it metastasized to her brain. Another friend had rectal cancer and has also died.

I mostly read these posts in memory of those friends in the hope that treatments are being discovered and refined.

My main focus on Mayo Connect is the head and neck group; my husband recently had a laryngectomy after a recurrence of vocal cord cancer. I really appreciate these groups!

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@jt1957

I just love it that you said, "I mostly read these posts in memory of those friends in the hope that treatments are being discovered and refined." What a great reason to be part of Connect!

I'm sorry to hear of your husband's recurrence of vocal cord cancer. Please feel free to post any questions or concerns in that group as well.

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1 reply
jt1957 | @jt1957 | Nov 19, 2023
In reply to @hopeful33250 "@jt1957 I just love it that you said, "I mostly read these posts in memory of..." + (show)
@hopeful33250

@jt1957

I just love it that you said, "I mostly read these posts in memory of those friends in the hope that treatments are being discovered and refined." What a great reason to be part of Connect!

I'm sorry to hear of your husband's recurrence of vocal cord cancer. Please feel free to post any questions or concerns in that group as well.

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Thank you!

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chuckmii | @chuckmii | Nov 24, 2023

Major milestone today. She was able to stand up without my assistance. Pain is much better, 30mg morphine twice a day but otherwise, Tylenol. She doesn’t do well on oxy. Doing very well with the ostomy and will start stair PT next week so she will be able to leave the house in the near future. Oncology is still very disappointing to me as they are leaving it up to Hope when/if she does any more chemo. They of course recommend it and based on our discussion of wanting to have a better quality of life, looks like they will cut the 5FU dose in half and drop the oxiplatin and add Avastin. Anyone had someone at this stage and or taken Avastin that can share your experience? I know this is palliative but get the feeling terminal may be coming sooner rather than later. Doing more research looks like the overall survival after a bowel obstruction with all of her other cancer issues is about 6 months. Based on her recovery it will likely be at least another month or 2 before any more chemo. That will be 3 months since the last treatment and I can only imagine how the cancer is spreading during this time. The only positive is she is in less pain but still so weak due to the severe anemia and the toll sepsis took on her in the hospital. Sorry for the long post… needed to get some of this out.

REPLY
2 replies
rjjacobsen | @rjjacobsen | Nov 25, 2023
In reply to @chuckmii "Major milestone today. She was able to stand up without my assistance. Pain is much better,..." + (show)
@chuckmii

Major milestone today. She was able to stand up without my assistance. Pain is much better, 30mg morphine twice a day but otherwise, Tylenol. She doesn’t do well on oxy. Doing very well with the ostomy and will start stair PT next week so she will be able to leave the house in the near future. Oncology is still very disappointing to me as they are leaving it up to Hope when/if she does any more chemo. They of course recommend it and based on our discussion of wanting to have a better quality of life, looks like they will cut the 5FU dose in half and drop the oxiplatin and add Avastin. Anyone had someone at this stage and or taken Avastin that can share your experience? I know this is palliative but get the feeling terminal may be coming sooner rather than later. Doing more research looks like the overall survival after a bowel obstruction with all of her other cancer issues is about 6 months. Based on her recovery it will likely be at least another month or 2 before any more chemo. That will be 3 months since the last treatment and I can only imagine how the cancer is spreading during this time. The only positive is she is in less pain but still so weak due to the severe anemia and the toll sepsis took on her in the hospital. Sorry for the long post… needed to get some of this out.

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Just a note that you two are in my thoughts and prayers.

REPLY
rioa21 | @rioa21 | Nov 27, 2023
In reply to @chuckmii "We did make it home a few days early and have been working through that transition..." + (show)
@chuckmii

We did make it home a few days early and have been working through that transition of becoming the full time support person. Took a week off and then with thanksgiving have 11 days to get into the new routine. It is tough as everyone on here knows. She can’t get up by herself right now so getting up multiple times a night to help her to the bathroom and everything else she needs. Hard doesn’t even begin to describe this phase of this horrible disease.

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So very sorry to read about all that you and your wife have been through. If you’re not completely satisfied with your wife’s oncologist why not get another opinion? You need someone whose going to answer your questions directly and not beat around the bush.

REPLY
monica1234 | @monica1234 | Dec 31, 2023
In reply to @chuckmii "Major milestone today. She was able to stand up without my assistance. Pain is much better,..." + (show)
@chuckmii

Major milestone today. She was able to stand up without my assistance. Pain is much better, 30mg morphine twice a day but otherwise, Tylenol. She doesn’t do well on oxy. Doing very well with the ostomy and will start stair PT next week so she will be able to leave the house in the near future. Oncology is still very disappointing to me as they are leaving it up to Hope when/if she does any more chemo. They of course recommend it and based on our discussion of wanting to have a better quality of life, looks like they will cut the 5FU dose in half and drop the oxiplatin and add Avastin. Anyone had someone at this stage and or taken Avastin that can share your experience? I know this is palliative but get the feeling terminal may be coming sooner rather than later. Doing more research looks like the overall survival after a bowel obstruction with all of her other cancer issues is about 6 months. Based on her recovery it will likely be at least another month or 2 before any more chemo. That will be 3 months since the last treatment and I can only imagine how the cancer is spreading during this time. The only positive is she is in less pain but still so weak due to the severe anemia and the toll sepsis took on her in the hospital. Sorry for the long post… needed to get some of this out.

Jump to this post

My heart just goes out to the both of you.....these things are just so horribly hard, on everyone. I wish your wife the very best and you, too....I see this was posted Nov. 24th....I am hoping and praying (hard) that things are better, hopefully improving. Sending hugs to you both!! < 3

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carol32605 | @carol32605 | Jan 1 6:12am

So sorry you are going through this. Prayers for both of you.

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