Just diagnosed: Surgery not an option, looking for hope

Posted by vcsongradi @vcsongradi, Feb 8, 2025

Went in for my first colonoscopy in December, F age 58. Had negative Cologuards for the last 4 or 5 years. My PCP gave me a FIT test in September which came back positive. Colonoscopy revealed a rectal mass (close to the sigmoid colon junction) she said was typical cancer presentation. Had some abdominal pain and went to ER. PET scan found mets to liver and both lungs, stage IV. Colorectal surgeon told me that surgery, "would not benefit me." Oncologist gave me 2 to 3 years prognosis, said treatment would be palliative and not curative, and surgery, "would never be an option." Started FOLFOX + Mvasi in January; just finished my 2nd round. CEA was initially 58, and is now 46, so that is good news I think. Don't really have a question, just looking for some hope from the stories of other people.

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

sbelyea | @sbelyea | Jul 17 4:52am

In reply to @ccdean "@sbelyea who was your liver surgeon?" + (show)

@ccdean
She had two liver surgeries - one in Boston at MGH by Dr. Omar Qatan and one in Toronto Canada at Toronto General UHN by Dr. Trevor Reichman

julieraney | @julieraney | Jul 18 5:08pm

Talk to a liver surgeon. I don’t know anything about how they treat lung mets but my husband has it in both lines of his liver and they are still considering surgery.

Colleen Young, Connect Director | @colleenyoung | Jul 29 7:00pm

In reply to @vcsongradi "Hey, all -- wanted to post an update. I stopped maintenance treatment the end of February..." + (show)

@vcsongradi

Hey, all -- wanted to post an update. I stopped maintenance treatment the end of February this year. It started to become unbearable for me. I was smelling things at the clinic (I want to say saline solution but it could have been something else they were flushing the port with) that made me violently ill to the point where I started wearing a mask with a cotton ball under my nose that had some kind of essential oil on it so I wouldn't smell whatever it was that was causing me to vomit. I started getting anxiety two or three days before the treatment day, and I just got to the point where I said enough is enough with the infusions and the 46 hour ball. So, since the cancer remained stable, I told my oncologist that I wanted to just get a repeat CT scan in June and see where things were then. Lo and behold, the rectal tumor was too small to be seen on CT, the liver spots were unchanged, but the lung spots had increased in number and size. So, we decided to start Avastin infusion with Xeloda for four 3 week cycles which I started on July 8th. I haven't yet had side effects that I'm aware of but did have some fairly significant pain and redness on the soles of my feet after 3 days of Xeloda. I also sprayed an herbicide on my lawn around that same time wearing sandals, so it may have gotten on my feet and caused the pain and redness. Anyway, I bought Udderly Smooth cream with 20% urea as well as Voltaren ointment in anticipation of hand foot syndrome. I have put on either the cream or the ointment under socks twice a day since Saturday, and now it's Tuesday and my feet are so much better I can actually walk without pain now.

I will continue the Mvasi/Xeloda for a total of 4 cycles and get a repeat CT scan to see if there are any changes in the lung spots. After that we'll see where things are, but I anticipate taking a four week break from Xeloda and restart it if needed.

Hope everyone is doing alright. Would love to hear how things are going for all of you.

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@vcsongradi, I appreciate getting your update. It sounds like you and your team made treatment adjustments that are right for where you are right now and with side effects that you can tolerate.

4fs | @4fs | 3 days ago

In reply to @4fs "I would suggest that the Drs test you dna , turned out my husband is allergic..." + (show)

@4fs Update: Sadly my husband of almost 48 years passed on 7/05 after watching the fireworks with me on the boat ( witch was his wish)
I completely agree with musicjewishcarp2008
My husband was able to be on our houseboat through his hospice and those people are amazing care givers ! In fact his urologist said he’ll get better care there, prayers for you on your journey

jolw | @jolw | 1 day ago

Hello everyone,
I am a 68 yr old woman and was diagnosed in Feb. 2026 with an inside rectal tumor stage 3C. I can't recall the size, however it was big and covered 1/3 of the area. I underwent radiation and 1 month of capesideabien pills before I became extremely reactive to them and had to stop all chemo. I also underwent 36 sessions of radiation. Just had my scans, biopsies and sigmoid to find out that no cancer cells were found, however there is a sliver of tumor left that the Drs are concerned about. They are suggesting removal of rectum and bowls and all lymph nodes. Which I forgot to mentions lymphs are very tiny now. I can't see going through all this surgery and recovery at my age. I am sure someone out there has gone through this. Do I get a second opinion? Id like to hear your story. thanks JO.

kristyc | @kristyc | 12 hours ago

In reply to @jolw "Hello everyone, I am a 68 yr old woman and was diagnosed in Feb. 2026 with..." + (show)

@jolw you may want to check out colontown . and it has helped me immensely by others experiences and information. I believe getting multiple opinions is very helpful in deciding what is best for you and your goals.