1. < Colorectal Cancer

Standard of Care, and non surgical options (Rectal Cancer)

Posted by paulecar @paulecar, Oct 13, 2023

Hi All

My wife was diagnosed with Stage II/III rectal cancer, 7 cm from anus, in the Spring and has just completed 6 cycle of FOLFOX infusion treatments. It's grueling for her. But scans show no signs of the tumor or the lymph node involvement - so, "woo hoo!".

Standard of Care says we are at the 'radio followed by surgery' stage. I'm reading up on the latest data in NEJM, and it appears adding radio doesn't necessarily improve outcomes. I am also interested to know if there are non-surgical options (very afraid the lifestyle changes will be intolerable for her). Again, does surgery improve outcomes?

Experiences or advice, and pointers to studies, research, articles would be appreciated.

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

billbills | @daledales | Oct 14, 2023

I would recommend discussing the watch and wait approach with your doctor. You may need to get a second or third opinion, not all doctors are comfortable with this approach.
I had colon cancer 3 years ago and achieved pathlogical complete response (pcr)
I am on a watch and wait protocol, no surgery. I am extremely happy with my results and quality of life.
This approach is not the "standard of care" for most surgeons.

I have blood work every 6 months(CBC and comprehensive metabolic panel)with CEA ,PSA tests, scans every 6 months-MRI alternating with PET scan, colonoscopy annually, Ctdna blood tests annually

Article on ctdna testing
https://www.nejm.org/doi/full/10.1056/NEJMoa2200075
I have attached a link to Memorial Sloan Kettering Cancer Center
https://www.mskcc.org/news/how-watch-and-wait-approach-may-help-people-rectal-cancer-preserve-their-quality-life
I have attached some articles from National Library of Medicine- you will need to register but it is free
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7422545/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8887849/
Keep reaching out and learning , good luck

REPLY
1 reply
paulecar | @paulecar | Oct 14, 2023

@daledales Thank you so much for taking the time to respond. And to everyone who might be reading. Also congrats on your positive results.

May I ask, was the FOLFOX regimen the only protocol you followed? I.e. same as my wife? PCR was achieved with that alone?

Here’s the NEJM article for everyone: I can’t post links yet, but the article is titled “ Preoperative Treatment of Locally Advanced Rectal Cancer”
https://www.nejm.org/doi/full/10.1056/NEJMoa2303269
I was talking to some friends who also recommended getting a second opinion. The Mayo facility in Jacksonville, FL and the MUSC in Charleston are close by enough to make it worth the trouble, I think.

REPLY
2 replies
billbills | @daledales | Oct 14, 2023
In reply to @daledales "I would recommend discussing the watch and wait approach with your doctor. You may need to..." + (show)
@daledales

I would recommend discussing the watch and wait approach with your doctor. You may need to get a second or third opinion, not all doctors are comfortable with this approach.
I had colon cancer 3 years ago and achieved pathlogical complete response (pcr)
I am on a watch and wait protocol, no surgery. I am extremely happy with my results and quality of life.
This approach is not the "standard of care" for most surgeons.

I have blood work every 6 months(CBC and comprehensive metabolic panel)with CEA ,PSA tests, scans every 6 months-MRI alternating with PET scan, colonoscopy annually, Ctdna blood tests annually

Article on ctdna testing
https://www.nejm.org/doi/full/10.1056/NEJMoa2200075
I have attached a link to Memorial Sloan Kettering Cancer Center
https://www.mskcc.org/news/how-watch-and-wait-approach-may-help-people-rectal-cancer-preserve-their-quality-life
I have attached some articles from National Library of Medicine- you will need to register but it is free
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7422545/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8887849/
Keep reaching out and learning , good luck

Jump to this post

My path to pcr was short course radition, oxaliplatin, and capecitabine pills. Some studies show 20 to 35% can achieve no residual disease with these type of treatments

REPLY
1 reply
k8kent | @k8kent | Oct 15, 2023
In reply to @daledales "My path to pcr was short course radition, oxaliplatin, and capecitabine pills. Some studies show 20..." + (show)
@daledales

My path to pcr was short course radition, oxaliplatin, and capecitabine pills. Some studies show 20 to 35% can achieve no residual disease with these type of treatments

Jump to this post

Bill bills, I hope you dont mind me asking questions… I also am on Capeox…… can I ask how many cycles you had. And did you have radiation after? My doctors have me on four cycles, every other week on pills, and three to four weeks for the infusion. I am just wondering if there is morereatment to come?
Thanks

REPLY
1 reply
cjay | @cjay | Oct 15, 2023
In reply to @paulecar "@daledales Thank you so much for taking the time to respond. And to everyone who might..." + (show)
@paulecar

@daledales Thank you so much for taking the time to respond. And to everyone who might be reading. Also congrats on your positive results.

May I ask, was the FOLFOX regimen the only protocol you followed? I.e. same as my wife? PCR was achieved with that alone?

Here’s the NEJM article for everyone: I can’t post links yet, but the article is titled “ Preoperative Treatment of Locally Advanced Rectal Cancer”
https://www.nejm.org/doi/full/10.1056/NEJMoa2303269
I was talking to some friends who also recommended getting a second opinion. The Mayo facility in Jacksonville, FL and the MUSC in Charleston are close by enough to make it worth the trouble, I think.

Jump to this post

If you do go to MUSC in Charleston, make sure you see Dr. Colleen Donahue. Rectal cancer is all she does, and she saved my life. She’s a straight talker and will answer as many questions as you have, truthfully and honestly. I can’t recommend her enough!
Good luck

REPLY
billbills | @daledales | Oct 15, 2023
In reply to @k8kent "Bill bills, I hope you dont mind me asking questions… I also am on Capeox…… can..." + (show)
@k8kent

Bill bills, I hope you dont mind me asking questions… I also am on Capeox…… can I ask how many cycles you had. And did you have radiation after? My doctors have me on four cycles, every other week on pills, and three to four weeks for the infusion. I am just wondering if there is morereatment to come?
Thanks

Jump to this post

my treatment was 4 rounds of chemo and
short course radiation (5 days), radiation was given before chemo started, chemo started next day after radiation stopped

REPLY
marty28 | @marty28 | Oct 15, 2023

I was diagnosed with Stage IV Anal cancer almost three years ago at the Mayo Clinic in Jacksonville, Florida. I did not have surgery to remove the tumors. I had one 6cm tumor and 10 small tumors in my abdomen. After ten days of radiation treatments, I had almost a year of chemotherapy. When the PET scan showed no sign of the tumors I began two years of infusions of the immunotherapy drug, Keytruda. I still remain in remission. I wish your wife well.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 24, 2023
In reply to @paulecar "@daledales Thank you so much for taking the time to respond. And to everyone who might..." + (show)
@paulecar

@daledales Thank you so much for taking the time to respond. And to everyone who might be reading. Also congrats on your positive results.

May I ask, was the FOLFOX regimen the only protocol you followed? I.e. same as my wife? PCR was achieved with that alone?

Here’s the NEJM article for everyone: I can’t post links yet, but the article is titled “ Preoperative Treatment of Locally Advanced Rectal Cancer”
https://www.nejm.org/doi/full/10.1056/NEJMoa2303269
I was talking to some friends who also recommended getting a second opinion. The Mayo facility in Jacksonville, FL and the MUSC in Charleston are close by enough to make it worth the trouble, I think.

Jump to this post

@paulecar, if you would like to get a second opinion from Mayo Clinic experts in rectal cancer, you can submit a request here: http://mayocl.in/1mtmR63

How are you and your wife doing?

REPLY
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