Newly diagnosed - looking for help and support

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NYDoggieMom
NYDoggieMom Member Posts: 5 Member
edited April 2023 in Colorectal Cancer #1

I am a 52yo single female just diagnosed with probable stage 3 colon cancer (adenocarcinoma that started in appendix). I'm told it's rare and aggressive. I'm still in the process of testing to determine stage and scope (CT today and Colonoscopy Friday), but trying to line up resources because I know things will need to move fast. Being single and childless, with only friends and a 73yo mother nearby, I'll be doing a lot of this on my own. Any advice for me at this point would be appreciated, as I am overwhelmed and terrified.

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  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
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    Sorry you are here. Often, the initial diagnoses are inaccurate, so hopefully things are not as bad as they seem. But the fear is horrible. I drank heartily when I was diagnosed, and it seemed to help. Also, long walks and solitude helped, but we are all different. Just a word of warning, my CT's were inaccurate as well. You would think the science would be advanced, but sometimes it is shockingly primitive. You are right, things will likely move fast. For me, knowing as much as I could in advance was helpful. Knowing I would need to act as my own advocate helped as well. Lining up someone to help if you need surgery and when you first come home would be helpful. For me, getting my paperwork in order was also calming. I also started keeping a journal, which for some reason, was very calming. Give your dogs a hug and maybe line up someone to look after them if you are in the hospital or not feeling well. Let us know how we can help.

  • Capox Dude
    Capox Dude Member Posts: 127 Member
    edited March 2023 #3
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    it is always terrifying when you learn you joined the club no one wants to belong to, but believe me when I tell you there is no better time to be diagnosed than now. The advances keep coming so quickly, it is truly mind blowing. Ignore any statistics that you googled, as they are likely based on a 10-year-old study, which is likely based on patient experience 10 years before that.

    I also was diagnosed stage three after first being told I was stage four. I know that everyone’s experience is different, and in no way am I claiming your journey will be like mine, but I have to tell you the deepest fears in my mind after diagnosis never came true. I had a positive experience with most of my providers and, for me anyway, the chemo was not as bad as I feared - nor was the surgery and recovery as difficult as the event that I had created in my mind. And in two more weeks it will be four years since my diagnosis …and currently there is no evidence of the disease in my body.

    I hope that you experience a similar path. I am an infrequent poster, but there are some incredible caring and knowledgeable people who are always here to help. Please stay in touch.

  • NYDoggieMom
    NYDoggieMom Member Posts: 5 Member
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    Thank you both. Colonoscopy tomorrow and then meeting with oncologist and then I should know more. I look forward to leaning on folks here who know what this is like. Friends and family mean well, but I feel like if you haven't heard those words yourself, you just don't understand.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
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    Funny, but when I was first diagnosed, I adopted the saying, "the only ones who understand cancer are the ones who have had cancer." Some friends (without cancer) said the oddest things, but I learned to just smile and move along. The real information came from the ones who understood.

    Colonoscopy prep is an isolated joy unto itself. Are you on split prep or one day? (I found split prep to be more tolerable). Best of luck in your adventures tomorrow.

  • NYDoggieMom
    NYDoggieMom Member Posts: 5 Member
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    Right?!?!?? Split prep, thank goodness! No sleep tonight... I'll be lucky to stay awake for the oncologist appt tomorrow afternoon...LOL

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
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  • NYDoggieMom
    NYDoggieMom Member Posts: 5 Member
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    Hi! Thanks for asking. It's been crazy, but I think I've gotten mostly good news since the first really bad news. Appendix margins were clear, colon was clear, CT scans were clear. So next up is surgery for hemicolectomy and hysterectomy, removal of all tissues around drain site, and systematic inspection of abdominal cavity. Based on inspection and lymph node testing, they'll determine what chemo to do, or if more surgery is needed. My biggest fear right now is that the perforation leaked cancer cells into my abdominal cavity, but my hospital doesn't do HIPEC, so if he sees any reason to think I should have it, I'll have to go elsewhere. I am going to look for specialists who would give a second opinion via a virtual visit (I've heard there are some) to confirm this is the right approach, but these docs do consult with the mayo clinic, which has a specialist, so that's a plus.

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
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    Good news should always be celebrated. Congratulations. I hope it all goes well.

  • NYDoggieMom
    NYDoggieMom Member Posts: 5 Member
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    Definitely! Thank you.

  • 73SueS73
    73SueS73 Member Posts: 5 Member
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    Know that you are not alone. Get as much support as you can. It is frightening. Remember to take one step at a time . Being here and having this tool is good. 🤗

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    There is a whole thread, on this forum, where members tell of the wild and weird and often times unsettling comments people have made, when you tell them you have Cancer. It is quite amusing and somewhat shocking, that people can be so insensitive or thoughtless.

    I hope all is going as well as one expects, when they have Cancer.

    Keep us informed.

    Tru

  • steelyshan
    steelyshan Member Posts: 1 *
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    I’m also in New York. ❤️

  • Capox Dude
    Capox Dude Member Posts: 127 Member
    edited April 2023 #15
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    Colon cancer. T3N1. 3 nodes. 3 months Capox chemo after laparoscopic surgery to remove the large tumor in my right side colon