Hi, new here

jamievee2
jamievee2 Member Posts: 4 **

I've recently been diagnosed with rectal cancer and begin radiation/oral chemo on Monday.

Here to get educated and feedback and learn as much as I can from others. It appears I am still going to ultimately need surgery and an ostomy bag.

Thanks for any feedback.

Comments

  • NewHere
    NewHere Member Posts: 1,380 **

    Hi

    But there is no space in my name 😀

    Sorry you are here and going through this. But this place is filled with great people. I have colon cancer (7 years today basically) Stage IV. Some others have cancer more similar to yours and I am sure they will jump in.

    First, bit of advice, try to ignore stats. Stats are generalizations. Per stats, only 10% make it 5 years. I am doing well even after 57 rounds of chemo.

    Second, there is always something happening, though sitting as patients we do not see it all the time. Started my third trial prep today. The drug that kept me going for a year and a half in 2020 was not approved until a year after I was diagnosed. The drugs I am testing did not exist until December, 2019 and they are pretty sure it will keep me stable or improve things for another year to year and a half at least.

    Third, it is okay to spoil yourself as you go through this. Binge some shows (though pre-Covid this did come across differently ;) ). Grab a coffee if that is something that makes you smile. Etc.

    Four, the whole radiation (I had some) and chemotherapy thing, together with cancer, is the monster under the bed or in the closet. Before my diagnosis or treatment there is no way I ever thought I could deal with it. I am responding in a manner I did not realize I had in me. So you got this. You may (will?) have down times, try to shake out of them if you can. It is okay to have them, but don't let them drag you down. Come here and vent or yell if needed. We are here.

    Maybe provide a bit more on the drugs they will prescribe/location/plan, may help get some feedback that is a bit specific.

    Again sorry you are here and wishes for you to be NED (No Evidence of Disease, in case you do not know the term. I didn't, and I was a bit lost on that one when I joined.)

    NewHere

  • SnapDragon2
    SnapDragon2 Member Posts: 607 **

    What is clinical stage?

    CEA?

    Any other tests you can share?

    Length of presurgery treatment plan?

  • jamievee2
    jamievee2 Member Posts: 4 **

    Thanks for your reply and positivity. I'm in So California. I start Xeloda and Radiation for 6 weeks on Monday and will do a round of iv chemo after a break of about a month.Yes it's pretty overwhelming to think down the road. Trying to stay positive!

  • jamievee2
    jamievee2 Member Posts: 4 **

    Stage is 2-3 Don't know what CEA means?? Oral Chemo? Radiation for 6 weeks and iv chemo after a break of 4-6 weeks. Had a colonoscopy, CAT and PET and lots of bloodwork.

  • NewHere
    NewHere Member Posts: 1,380 **
    edited January 15 #6

    CEA is short for carcinoembryonic antigen. It is a tumor marker often associated with colon cancer and some other cancers.

    Couple of things to keep in mind:

    a.) CEA can be measured on different scales (or really reported) , so sometimes a number seems really large compared to others you will see for people. In other words, I may say my CEA is 3, while you are told you have a CEA of 3000. It may be the same number, just expressed differently.

    b.) Things other than cancer can drive up the CEA, including infections and smoking. So an increase in CEA may be due to something other than cancer being active.

    c.) Along point B, CEA can go up when chemotherapy is working - as cancer is getting knocked up, it may increase. (There are studies discussing how CEA increases/patterns are part of prognosis)

    d.) For many people CEA does not seem to be a reliable indication of cancer activity. So try not to worry too much. (For me, after 7 years, it really good marker for me.)

    e.) Oral chemo are pills (compared to infusions/IV) Xeloda is an oral chemotherapy.

    f.) Clinical Staging of 2-3 based on the tests is something that is good. You also have a letter after the number. So 2A, 2B etc. Lower numbers/lower letters better. 2A is better than 2B. 2B is better than 3A. But again, try not to get too caught up if they tell you something that sounds bad. I am Stage 4C (IVC). Which is one of the "worst." I am 7 years in and in better shape then most people who are not dealing with cancer. PET scan would show where cancer may be active elsewhere in your body. Quick overview (just in case to add to what your doctors may have told you), a PET scan use radioactive sugar. It is injected into you. Cancer is more active and take up the radioactive sugar quicker than normal cells. So it shows on the scan as being more active.

    g.) It sounds like you have a plan laid out well, you may want to find out which IV chemo you will get so people can help/advise on that one. I have not had Xeloda, but others have.

    h.) Southern California - I am jealous. I am not sure if you are near the ocean - I am from New York, so I always assume that anyone in Cali, especially SoCal, are near the water😀 I had a chance to get to see the ocean a few times these last 7 years (pre-Covid times), and I loved watching the waves. That would be on my list of spoil times for sure :)

  • jamievee2
    jamievee2 Member Posts: 4 **

    Thanks!

    I'm from NY too. City girl.....been here 30+ years (but once a NYer, always a NYer) LOL...

    Yes, I'm near the beach :)