1. < Colorectal Cancer

Just diagnosed: Surgery not an option, looking for hope

Posted by vcsongradi @vcsongradi, Feb 8 10:11am

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.

chowell111 | @chowell111 | 4 days ago
In reply to @terishep "I agree with Paul, this seems backward. I had a tumor in my colon, the pain..." + (show)
@terishep

I agree with Paul, this seems backward. I had a tumor in my colon, the pain was unbearable towards the end. (while waiting for surgery) I was going to the bathroom about 15 times a day, and the toilet looked like a murder scene. When I got a CT scan I was shocked to see that I had a lot of stool backed up. That was from the tumor not allowing everything to pass. After my surgery (very successful) I had 6 rounds of Folfox chemo. Did your Brother get a mediport put in his chest for the chemo? What Paul said is very important: "I hope you are dealing only with accredited cancer centers, not general hospitals or clinics."

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Thank you for your comment. Yes he has the port. He had to go to the ER yesterday for severe dehydration. It was too painful for him to eat or drink anything for a while so he ended up this way. They are now putting in a bag so he won't have to eliminate through his large intestine.

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chowell111 | @chowell111 | 4 days ago
In reply to @hopenjoy2024 "Hugs to you and your brother, it is difficult to stay strong when you do not..." + (show)
@hopenjoy2024

Hugs to you and your brother, it is difficult to stay strong when you do not know what is happening. Did he get a second opinion? It is a personal choice, but you never want to find yourself in a position where you could have done something more. When I was in treatment, the #1 thing my oncologists said was not to go to ER unless they sent you; it seems maybe something is not working.

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He had to go to the ER yesterday with severe dehydration. Things are happening so fast and he's so sick he can't really get to another doctor at the moment. They are putting a bag on him today. He is in the hospital now.

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hopenjoy2024 | @hopenjoy2024 | 4 days ago

My prayers for your brother and you. Please keep us updated. I wish there was something I could do to help.

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paul28 | @paul28 | 4 days ago
In reply to @terishep "I agree with Paul, this seems backward. I had a tumor in my colon, the pain..." + (show)
@terishep

I agree with Paul, this seems backward. I had a tumor in my colon, the pain was unbearable towards the end. (while waiting for surgery) I was going to the bathroom about 15 times a day, and the toilet looked like a murder scene. When I got a CT scan I was shocked to see that I had a lot of stool backed up. That was from the tumor not allowing everything to pass. After my surgery (very successful) I had 6 rounds of Folfox chemo. Did your Brother get a mediport put in his chest for the chemo? What Paul said is very important: "I hope you are dealing only with accredited cancer centers, not general hospitals or clinics."

Jump to this post

I am so thankful that I live alone. No one else would ever get to use the bathroom! Lol 😆
PAUL

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mjdavey36 | @mjdavey36 | 3 days ago
In reply to @vcsongradi "FOLFOX plus Mvasi appears to be working. Most recent CEA 21 on Monday of this week,..." + (show)
@vcsongradi

FOLFOX plus Mvasi appears to be working. Most recent CEA 21 on Monday of this week, was 58 in January. Side effects are not terrible (yet). Just came back from a 7 day cruise to the southern Caribbean Islands. Retired 2/28/25 after 19 years with the VA. I'm feeling more hopeful 😊 !

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Folfox was very effective for my mother and side effects not too bad. Best wishes to you!!

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myjiggers1 | @myjiggers1 | 2 days ago

Hi Vcsongradi!

Hope is a great word and I believe in the power of prayer and being positive! There is always hope. I hear no surgery and I think what if everything shrinks? I am sure at that time they could look into it. Have you gotten more than one opinion? I could not handle the FOLFOX when I was stage 3c, I was allergic to the oxaliplatin. So when it came back in an unexpected place, upping me to stage 4 after 8 months of freedom from chemo, they now have me on Folfiri. The side effects of the mouth sores are awful, but when I think of the time its buying me to be with my son it is worth everything! I think of Job in the bible and how much he endured and think…. At least its not that bad lol. I was told that I may have a similar timeframe… it was said that if my son, who is 17 and heading to college this fall, accelerates his courses and doesn’t take summers off that I might see him graduate. So that is 2-3 years…. For 4 year degree. I don’t accept that. I am determined to make it to his graduation! I am singing and cracking jokes… anything to stay positive. I have a very aggressive colon cancer that was on the right side which is considerably worse than the left. I have spoken to 2 people, one female one male, who have had this and the male is now 75 and has made it 25 years. The female is my age (48) and is 3 years in remission. We can do this!!!!!! We can be that percentage that does it! Keep your chin up, you are strong! I will pray for you and your hope! ❤️

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knicky | @knicky | 2 days ago

My husband was diagnosed with stage 4 colon cancer almost 4 years ago. He was also took it was inoperable.
I decided at that point to take my husbands into my own hands. With tons of research etc. I discovered the following: I turned down chemo etc. knowing it would kill my husband faster than the cancer, second I discovered the FDA approved Keytruda (immunotherapy) for colon cancer that was a particular type of colon cancer cell usually found from the tumor on the right side of the colon...however, since then they have approved immunotherapy for all colon cancer. So, I demanded genomic/genetic testing and actually found out immunotherapy was the best treatment at that point. I refuse to settle for chemo treatments. I also demanded them to remove the tumor because tumors continue shedding cells. He started his immunotherapy treatment, then he had his tumor removed. They will not operate if you are on chemo because you need at least 6 to 8 weeks after surgery with no treatment. On immunotherapy you can continue treatment even after surgery.
It was been positive and so far he is doing ok. I also have him on a vitamins routine that has help keep his blood levels almost normal. My only advice is to ask tons of questions, call Envita medical center in PHX,.....I learned tons from them because they aren't controlled by the insurance/pharma companies. I talked with them and learned what I should be asking for etc. We can send them your records for review. I also talked with the Williams Immunotherapy Institute which is one of the institutions that treat cancer only with immunotherapy. Honestly, you really need to do your research and don't stop ...it changes all the time. I am now watching Car-T treatments.....advance immunotherapy treatment....you will find it interesting. My thoughts are with everyone....it's not an easy journey.

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