moms diagnosis process and peritoneal mets

beomie33
beomie33 Member Posts: 4 Member
in Colorectal Cancer #1

hi there, my mom (53) is currently in the process of receiving a stage 4 crc diagnosis. its a little confusing and very scary right now but i want to share the story up until today, looking for advice.

she went in for a ct scan about 3 weeks ago for abdominal pain, they located a 4.3cm mass on her colon and "extensive peritoneal implants" and "concerning for peritoneal carcinomatosis". she went in for a colonoscopy and they took a biopsy, came back inconclusive (showed a tubulovillous adenoma but doctors are convinced its cancer.) oncologist said its stage 4 because it has spread to her peritoneum... theres a surgical biopsy scheduled for next week. her cea is a 43, she isnt really experiencing any other symptoms.

how can they confirm its stage 4 when they dont even have confirmation from a biopsy, just going off a ct scan? and they havent biopsied any of the peritoneal nodules either. is there a chance they could be benign? does anyone with peri mets have any advice or positive stories? this is such a terrifying and frustrating time because we arent getting answers.

i know about crs and hipec.. should i be trying to stay hopeful? im scared and im there for my mom but this is so hard. the statistics look horrible but ive heard theyre outdated.

Comments

  • Arx001
    Arx001 Member Posts: 30 Member
    #2

    Beomie,

    I’m sorry to hear the bad news. It is normal to be scared and panicked. This feeling (on your part) will mostly go away and you’ll be in a better position to assist your mother as she definitely would need much help.

    Stage 4 colorectal cancer (I’m stage 3 rectal) has worse prognosis than earlier stages. If I’m not mistaken it’d be around 50 % five year survival rate a bit worse than rectal cancer.

    I’m unable to understand the medical details you presented and would be careful not to give medical advice but based on my understanding of cancer as a patient:

    1. What separates a cancerous tumor from a benign one is its desire to metastase and your mother has already a metastatic tumor. Therefore it may satisfy the definition of a remotely metastatic cancer even without any biopsy.
    2. The biopsy may have been inconclusive because that type of a polyp seems to be partly cancerous (25%) and the biopsy may have sampled the non-cancerous part. That is possibly why there will be a surgical intervention and she'd definitely get a PET scan soon. I hope there will be no further metastasis in other organs.

    Unfortunately many types of cancers progress silently and this is especially the case for colorectal cancer. I had no medical complaints and scored (!) a Stage 3 during a screening/check-up colonoscopy. You are a young person but my humble advice is that you should get a colonoscopy no later than 30 years of age. I will make my children do so.

    One possible good news is, whereas colorectal cancers have vastly increased (you already had the bad news) in the sub-50 group, oncologists say the tumors are often weak genetically.

    I assume you’ll get a second medical opinion now and also after the surgical biopsy. Once my grandmother was wrongly diagnosed cancer based on a radiological report which confused osteoporosis with cancer. A GP may make this mistake but it is very unlikely an oncologist would.

    If the concept of death stresses you a lot feel free to write about it…

    Best wishes.

  • beomie33
    beomie33 Member Posts: 4 Member
    #3
    https://csn.cancer.org/discussion/comment/1720155#Comment_1720155

    hello,

    this is definitely an awful time, ive been unable to eat or sleep normally for the past 3 weeks. just trying to get through one day at a time.

    im aware that stage 4 cancer is incurable, but there are still hopes of getting into remission/NED. her ct scan didnt show any other areas of concern besides the peritoneum, which i know there is crs and hipec for as treatment.

    im just confused how they reached the conclusion its a metastatic tumor without any tests, sure a ct scan can detect concern of spread but i thought theyd have to confirm it somehow. yes, i am thinking the same thing about the biopsy. theyre going to go back in surgically and take bigger samples, including some from the peritoneum.

    im so sorry to hear about your diagnosis, its so awful. hope youre getting on well. my gp mentioned to me that a colonoscopy should be done at some point in the near future now, im 20.

    what do you mean by the "sub-50" group? and the tumors are weak genetically?

    we are definitely looking into a second opinion, the oncologist had looked over the ct scan and thats the conclusion he reached. it just frustrates me how they assume its stage 4 yet no treatment plans are being set up, the waiting is excrutiating. i thought theyd move a little faster if its advanced..

    the concept of death is really difficult for me. i have severe anxiety and death has been a super uncomfortable topic since i was very young, its even worse now. i cant even think about it without having a week long mental breakdown, its debilitating. i dont even want to think about it as right now im just trying to stay hopeful that she'll respond well to treatment, etc.

  • Arx001
    Arx001 Member Posts: 30 Member
    #4

    Hi again,

    I read about the peritoneal metastase as well as the CRS and Hipec. These are very tough operations/treatments. I shouldn’t have provided you with a 5 year survival rate for a stage 4 colon cancer bc things change in this situation. I should have been more careful and I’m very sorry about that.

    Is it possible for you to see a good psychologist or a psychiatrist regarding the anxiety?

    And thank you for your kind words regarding my cancer. You said you’re 20. I’m not sure if this would be of any consolation but my aim is (so far I’m doing pretty well) to live until my youngest 7 year old child reaches 20. For many parents seeing that their children have reached adulthood and are doing well… is the ultimate reward in life. You said you’re 20 so I will assume your mother is proud of you, your being and caring for her is perhaps more important than anything else.

    Wishing the best to your mother and your family.

    Note: Colonoscopy is a painless and quite easy procedure it’s just one needs to empty the bowels the night before. I’d advise you to follow your doctor’s advice and do this soon.

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