• Jayne's Avatar

    Jayne posted an update

    Well I'll be darned! After 13 years of dealing with symptoms and feeling so isolated and frustrated, there is actually a "syndrome" many patients experience following a Lower Anterior Resection - called LARS. Not sure if I am the only one who didn't know about this but wanted to share: https://fightcolorectalcancer.org/blog/what-is-lars/

    2 Comments
    • JaneA's Avatar
      JaneA

      Yes, that's what it's called. It's actually been called that for quite a few years. LARS is the major reason that I chose to have the most aggressive surgery for my Stage IV rectal cancer and have a permanent colostomy. I didn't want to deal with LARS for the rest of my life. I have never regretted my decision.

      I am so sorry that you are dealing with this.

      2 months ago
    • Jayne's Avatar
      Jayne

      Oh that is so interesting! Sometimes I feel the same way about the colostomy. I guess it depends on when you were diagnosed, there is so much more information provided to you now than ever before. I was never offered any type of rehab or PT to help find my "new normal." But I'm getting there now! So glad to see this type of info more readily available and grateful for others like us!

      2 months ago
  • Jayne's Avatar

    Jayne posted an update

    Interesting article on another chemo option for lung cancer: https://medlineplus.gov/news/fullstory_164456.html

  • Jayne's Avatar

    Jayne posted an update

    Going for my final (!) scan next week. I've been 5 years NED so am hoping this is the end of the never ending CT scans! I'm nervous but optimistic that it will go well. What are olthers experiencing in terms of follow on monitoring after the magical 5 year mark?

    2 Comments
    • MizzVisual's Avatar
      MizzVisual

      Congratulations! I am also "NED", looking forward to hearing those words..No more scans. I'm continuing to enjoy my extended life. Life is extremely Good!

      over 2 years ago
    • BoiseB's Avatar
      BoiseB

      I am told that stage IV cancer survivors are monitored at least once a year for life. However reaching the five year mark is cause for celebration.

      over 2 years ago
  • Jayne's Avatar

    Jayne posted an update

    I saw a great saying over the weekend which resonated with me: "Your life consists of 2 dates and a dash - make the most of the dash". Love this!

  • Jayne's Avatar

    Jayne posted an update

    My mother in law's Leiomyosarcoma has come back in her liver. Is there anyone out there with a similar diagnosis?

  • Jayne's Avatar

    Jayne posted an update

    For me (colon cancer) the radiation was way easier than chemo. I did develop a sever bladder infection towards the end, due to the area they were radiation and also got quite fatigued towards the end of the six weeks. But, compared to the chemo, it was way easier. As stated by others, the daily trips were the biggest nuisance. I needed some help getting there towards the end due to the fatigue, but the majority of the time I was able to handle it on my own. Keep up the good work, you can do it!

  • Jayne's Avatar

    Jayne posted an update

    Ugh, possible problem again after CT scan. Keep finding spots of colon cancer in my lungs but not sure if this is cancer or scar tissue now. Will follow up with PET in September. Have already had 4 surgeries on these lungs, and last time was a lobectomy. I wonder what the record is? Anyone else have similar?

  • Jayne's Avatar

    Jayne posted an update

    Going for my quarterly scans tomorrow, does this ever get to the point where it becomes routine and stops being so stressful? Also, I struggle with telling my family about these scans because they worry so much. Do you tell people close to you or just surprise them afterwards (either good or bad)?

    1 Comment
    • Jane's Avatar
      Jane

      I have been having quarterly scans for 8 years and it does seen to become less stressful. But my cancer seems to come back every two years and that may make it not quite so stressful. It was hard on the beginning and I became pretty hard to live with before each test but it is better now. I know some of them will be clean and then we will find another spot and need to decide on treatment. Chemo has been taken off the table as a treatment so that has been an enormous relief.

      over 7 years ago