Newly diagnosed

Deek1729
Deek1729 Member Posts: 4 Member
edited April 1 in Anal Cancer #1

I am glad I found this site. I was diagnosed 3/23/24. My first oncology appointment is 4/1. From the pathology and scans it looks like I am stage 3 - scary but survivable. Reading some of the posts I have been able to develop a list of questions for that first visit. I have a number of health issues, including MS and longstanding anemia, so I have been worried about the chemoradiation and how it will affect the other health problems. Again, scary, but I will keep coming back to this site for tips.

Comments

  • mountainrover
    mountainrover Member Posts: 2 Member
    edited April 1 #2

    Hi Deek

    I am just popping in to say hello because I, too, am newly diagnosed and it's quite a ride' when I first found out.

    So I have known for several days and like you I have been scouring the internet and joining forums to glean as much info and support as possible. I had my first body scan this morning which was fun haha and I get the results within two days. Best of luck with yours.

    (EDIT: I found out a few hours later that I am stage 4 with metastasis to the lung and liver. To say I am shicked is an understatement. Wasn't expecting this.)

    There are some good anal Cancer groups on Reddit and a great group on Facebook that is lively and supportive The FB one is called "Colontown" and I highly recommend it - they have several groups so you can either join the general cancer group and/or ask to join the anal group which is called AnalWise. all of the groups are under the banner 'Colontown'

    Best of luck to you moving forward!

    Mountainrover

  • Rebar
    Rebar Member Posts: 25 Member

    This is a great group.

    Also the chat is very good. Lots of support here for sure, and on Reddit like Mountainrover mentioned.

    I am a member of a great RSO group on Facebook, I can send you an invite if you want.

    Be sure to look into RSO, I believe it saved my life; It certainly reduced my time dealing with anal cancer.

    I was diagnosed in September and as of last month am now cancer free.

    I had 6 chemo treatments, no surgery, and minimal side effects from the chemo. ( Mainly fatigue and a touch of neuropathy in my fingertips, which is slowly getting better)

    Feel free to reach out with any questions or concerns you may have, we are here to help!

  • mountainrover
    mountainrover Member Posts: 2 Member
    edited April 1 #4

    Hi there

    Mountainrover here.

    I am interested in the RSO Facebook group. What do you need from me to send me an invite?

    Thanks and congrats on being cancer-free so quickly. Terrific news!

    Also is 'chat' separate from the forum threads here? How do I find the chat option? I don't see it. Cheers

    Just after I posted my first post here in this group I got a call from the hospital a couple hours after my Pet scan. I am stage 4 with mets to lung and liver. I have been very down in the dumps about it but I see my new oncologist tomorrow at 2pm so I hope she will be able to make me feel a bit brighter about beating it cos all Google searches say it's unlikely to be cured.

    Cheers

  • Deek1729
    Deek1729 Member Posts: 4 Member

    Thanks for the support. I had seen mention of RSO in other posts and have been reading about it. The side effects of chemo and radiation frighten me so RSO seems like it would be helpful.

  • Deek1729
    Deek1729 Member Posts: 4 Member

    Thanks for the leads to other support.

  • Rebar
    Rebar Member Posts: 25 Member

    Deek, the RSO will definitely help!

    It immediately helped me with sleep, finally got comfortable enough to get some quality sleep. (LOTS of sleep!)

    And it helped get rid of my pain as well.

    Looking back, I'm sure it had a positive effect on getting rid of my tumor and lesions that I had previously, in a short amount of time.