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

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chuckmii | @chuckmii | Oct 27, 2023

Wife has stage 4 MCRC spread to liver, peritoneum and adrenal glands. 12 days ago had “emergency” surgery for obstruction. Surgeon said the colon tumor was adhered to her bladder and the other tumors were adhered to her intestines. There was no flexibility or “slack” for him to do a normal colostomy because everything is now basically stuck together. Anyone had this and survived. Trying to determine how serious it is and if more chemo would be effective.

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3 replies
myjiggers1 | @myjiggers1 | Oct 28, 2023
In reply to @chuckmii "Wife has stage 4 MCRC spread to liver, peritoneum and adrenal glands. 12 days ago had..." + (show)
@chuckmii

Wife has stage 4 MCRC spread to liver, peritoneum and adrenal glands. 12 days ago had “emergency” surgery for obstruction. Surgeon said the colon tumor was adhered to her bladder and the other tumors were adhered to her intestines. There was no flexibility or “slack” for him to do a normal colostomy because everything is now basically stuck together. Anyone had this and survived. Trying to determine how serious it is and if more chemo would be effective.

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This sound beyond serious and I am so so sorry. I will be praying for your wife. I would not focus on how much time she has to survive this, but on making memories and drawing closer to each other thru this and God. Miracles happen every day. I have not yet heard of a case to this degree. I am sorry I can’t be helpful! I know it’s a scary thing. I have stage 3c, but nothing went to other organs. Radiation is what shrinks tumors. Did they say anything about that? I pray you have a support system at home and a wonderful church family like I have to to help get you guys thru this. But it’s very serious. No getting around it. 😔❤️

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rjjacobsen | @rjjacobsen | Oct 29, 2023
In reply to @chuckmii "Wife has stage 4 MCRC spread to liver, peritoneum and adrenal glands. 12 days ago had..." + (show)
@chuckmii

Wife has stage 4 MCRC spread to liver, peritoneum and adrenal glands. 12 days ago had “emergency” surgery for obstruction. Surgeon said the colon tumor was adhered to her bladder and the other tumors were adhered to her intestines. There was no flexibility or “slack” for him to do a normal colostomy because everything is now basically stuck together. Anyone had this and survived. Trying to determine how serious it is and if more chemo would be effective.

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Commenting here to say I'm also sorry and I don't know what else to do other than to pray. There are no words. Hopefully someone who is more helpful can comment further.

I'll follow up on this discussion - I have prayed and will continue pray for you and your wife. Sometimes, we don't even know what to pray for - but the Holy Spirit prays on our behalf.

Please update us. Thanks.

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chuckmii | @chuckmii | Oct 29, 2023
In reply to @chuckmii "Wife has stage 4 MCRC spread to liver, peritoneum and adrenal glands. 12 days ago had..." + (show)
@chuckmii

Wife has stage 4 MCRC spread to liver, peritoneum and adrenal glands. 12 days ago had “emergency” surgery for obstruction. Surgeon said the colon tumor was adhered to her bladder and the other tumors were adhered to her intestines. There was no flexibility or “slack” for him to do a normal colostomy because everything is now basically stuck together. Anyone had this and survived. Trying to determine how serious it is and if more chemo would be effective.

Jump to this post

Still in the hospital, due to an infection and low blood pressure, was in the ICU for 4 days and got flooded with fluids and antibiotics. She has 60lbs of water retained and is so swollen it is blistering and seeping out of her skin everywhere. Oncology won’t even talk to us until she gets out of the hospital, which is very disappointing. Feel a bit abandoned by them.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 30, 2023
In reply to @chuckmii "Still in the hospital, due to an infection and low blood pressure, was in the ICU..." + (show)
@chuckmii

Still in the hospital, due to an infection and low blood pressure, was in the ICU for 4 days and got flooded with fluids and antibiotics. She has 60lbs of water retained and is so swollen it is blistering and seeping out of her skin everywhere. Oncology won’t even talk to us until she gets out of the hospital, which is very disappointing. Feel a bit abandoned by them.

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@chuckmii, I'm sorry you feel abandoned. This is when you need support the most. Have you considered contacting hospice? They may be able to provide support and care for you and your family as well as your wife while in ICU and the transition after ICU.

REPLY
myjiggers1 | @myjiggers1 | Oct 31, 2023
In reply to @chuckmii "Still in the hospital, due to an infection and low blood pressure, was in the ICU..." + (show)
@chuckmii

Still in the hospital, due to an infection and low blood pressure, was in the ICU for 4 days and got flooded with fluids and antibiotics. She has 60lbs of water retained and is so swollen it is blistering and seeping out of her skin everywhere. Oncology won’t even talk to us until she gets out of the hospital, which is very disappointing. Feel a bit abandoned by them.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6465391/

I found 2 cases where it spread to other organs and adrenal glands where they were able to do a resection/ colectomy/ chemo and then removal of the adrenal glands after. And survival was longer than 9 years. I believe you’re not getting a lot of information because for it to spread to the adrenal glands, it sounds like it’s very very rare, and they may not have any experience with it. It doesn’t excuse them from ignoring you, or not addressing the issues, but that may be why. I will pray for your wife. It sounds like there could be hope but with everything else that’s going on with her it’s going to be a uphill battle for sure. It’s very hard, but try to stay positive and keep an upbeat attitude because it really does help with the outcome. ❤️. Stacy

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chuckmii | @chuckmii | Nov 13, 2023

still in the hospital, today is 1 month but hopefully going home on Friday. Finally had a video call with the oncologist and my feeling is they are just trying to buy us time but won't actually say it. The consensus now is the 5FU was a mixed response. Liver had more but smaller lesions and other spread or in the case of the peritoneum has grown cysts. The palliative doctors I believe are trying to prepare me for the future by telling me her pain med use is going to increase, probably sooner rather than later. Currently on 30mg ER morphine twice a day and still taking Norco for breakthrough pain. Wife is definitely still in denial of some aspects and I don't blame her. She is focusing on the pain being from the surgery but that was over 3 weeks ago now and the internal med doc was trying to tell her delicately today that pain should be gone or very minimal by now. I believe the pain is being caused by the peritoneum tumor/cysts pushing on everything (surgery incision split open on the surface due to bloating). Wife is trying to take it half a day by half a day but that's hard. One thing she is starting to say now is "IF" we do more chemo. I know the oncologist is going to recommend it but she does want to keep a semi-decent quality of life and not be stuck in bed all day and have all the side effects like she did the first 6 rounds. This all just sucks. Everything I have read and researched puts us on a very similar timeline of progression. approx 7 months from diagnosis to hospitalization for complications (we only went 4) and then 2-8 months overall survival after that. I am not even sure she will make it to her next birthday... June

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 17, 2023
In reply to @chuckmii "still in the hospital, today is 1 month but hopefully going home on Friday. Finally had..." + (show)
@chuckmii

still in the hospital, today is 1 month but hopefully going home on Friday. Finally had a video call with the oncologist and my feeling is they are just trying to buy us time but won't actually say it. The consensus now is the 5FU was a mixed response. Liver had more but smaller lesions and other spread or in the case of the peritoneum has grown cysts. The palliative doctors I believe are trying to prepare me for the future by telling me her pain med use is going to increase, probably sooner rather than later. Currently on 30mg ER morphine twice a day and still taking Norco for breakthrough pain. Wife is definitely still in denial of some aspects and I don't blame her. She is focusing on the pain being from the surgery but that was over 3 weeks ago now and the internal med doc was trying to tell her delicately today that pain should be gone or very minimal by now. I believe the pain is being caused by the peritoneum tumor/cysts pushing on everything (surgery incision split open on the surface due to bloating). Wife is trying to take it half a day by half a day but that's hard. One thing she is starting to say now is "IF" we do more chemo. I know the oncologist is going to recommend it but she does want to keep a semi-decent quality of life and not be stuck in bed all day and have all the side effects like she did the first 6 rounds. This all just sucks. Everything I have read and researched puts us on a very similar timeline of progression. approx 7 months from diagnosis to hospitalization for complications (we only went 4) and then 2-8 months overall survival after that. I am not even sure she will make it to her next birthday... June

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Chuck, I hope you made it home today. Thinking of you as you adjust with the move.

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chuckmii | @chuckmii | Nov 17, 2023

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.

REPLY
2 replies
jt1957 | @jt1957 | Nov 18, 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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Thinking of you and your wife and hoping things get easier for both of you.

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