News that's not totally unexpected!!

pjs62
pjs62 Member Posts: 95
in Anal Cancer #1
I am still enjoying reading all the good news many of you are posting. It helps me feel there may be a light at the end of my tunnel....eventually. But until then.....there's more decisions to be made in the coming months.
I seen my oncology (surgery) dr Nov 30th for follow up from recent surgery & updated pathology report. Although at first they felt the cancer was gone, they now feel there's still some bad cells hiding. He met with my med team & other drs to discuss my case. They tried the unconventional approach since traditional didn't work the 1st time. He's concerned the cancer could be totally gone within 2 months of biops (& no treatment just surgery). He's wanting me to have a good quality of life & knows I'm still uncomfortable, still not gaining weight (hard to eat with tummy troubles & needing a bathrm very near when I do eat!), basically would prefer to stay home.
The choices we have: continue with scopes/biops every 3 months & pray it stays 'dorment' & not spread. The problem here is the scar tissue & not getting 'good results'.
Or: APR with perm ostomy. Scared of this option because its such a major life change. But trying to be positive. There is a lady who works at my cancer center (about my age & living with an ostomy a few yrs now). So will meet with her & the ostomy nurse next week.
I do have a few good websites I've been checking out along with the colon cancer board here. Just hard to believe still dealing with this cancer mess! Been emotional all day trying to figure things out. As strong as I try to be I'm so ready to put this journey behind me....one way or another! ha! My hubby is very supportive....he wants me to have the best quality of life that would keep me around for a very long time!

Comments

  • z
    z Member Posts: 1,414 Member
    #2
    pjs
    It sounds like you have a major decision to make. I hope you will come to one soon so you may move forward and be happy with the decision you make. I wish you well. Lori
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #3
    z said:

    pjs
    It sounds like you have a major decision to make. I hope you will come to one soon so you may move forward and be happy with the decision you make. I wish you well. Lori

    Decisions
    Sorry to hear this, but good for you for trying. I think it was very brave of you. I know you will make the right choice. with your husbands support you will be able to do it.
  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    pjs62
    I'm so sorry that you have gotten this news that leaves you and your docs unsure of your status. I'm sure this will be a very difficult decision to make. I will say this, the colostomy is probably the more sure bet on getting rid of the cancer for good. However, I certainly understand your fear about having one. Please do talk with the woman at the cancer center and get some feedback from someone who is living with one. I will keep you in my thoughts and prayers.
  • cap630
    cap630 Member Posts: 151 Member
    #5
    pjs62
    I wish you well. You are in my thoughts and prayers ~Carol
  • eihtak
    eihtak Member Posts: 1,473 Member
    #6
    Choices
    Hi, there is always light at the end of the tunnel, just keep pushing through some tunnels are very long!!!!
    I don't post real often but just had to. I am 7.5 months post treatment for Stage 3 AC. I had a colostomy put in before even starting treatment witch actually worked out great during painful radiation and other bathroom urgency issues. I still have it and as of now do not yet know if I will have a reversal or it will be permanent. I am 53yrs old and have always been active with family and friends. I won't lie, it took a while to get used to, but now it is barely an issue at all. I recently went with my husband and friends to a wedding several states away (drove), stayed in a hotel, dressed great, danced, had a wonderful time. There are many different supplies out there for people with colostomies and once you find what works for you things go smoothly. In the biginning I had a few leakage situations but I have learned that certain foods effect me differently now and my digestive system as well. In time you just develop a routine that works for you and your life will be as free as before the colostomy. There is a great site C3Life that was a big help. I find myself nervous about the possible reversal when I hear the stories of people needing to always be near a bathroom or having accidents, I feel I may kind of have it easier in a weird way?????? Anyhow, it won't be as bad as you are thinking if it is what you decide, it just takes a little time. Good luck, as always Im praying for all!!
  • pjs62
    pjs62 Member Posts: 95
    #7
    eihtak said:

    Choices
    Hi, there is always light at the end of the tunnel, just keep pushing through some tunnels are very long!!!!
    I don't post real often but just had to. I am 7.5 months post treatment for Stage 3 AC. I had a colostomy put in before even starting treatment witch actually worked out great during painful radiation and other bathroom urgency issues. I still have it and as of now do not yet know if I will have a reversal or it will be permanent. I am 53yrs old and have always been active with family and friends. I won't lie, it took a while to get used to, but now it is barely an issue at all. I recently went with my husband and friends to a wedding several states away (drove), stayed in a hotel, dressed great, danced, had a wonderful time. There are many different supplies out there for people with colostomies and once you find what works for you things go smoothly. In the biginning I had a few leakage situations but I have learned that certain foods effect me differently now and my digestive system as well. In time you just develop a routine that works for you and your life will be as free as before the colostomy. There is a great site C3Life that was a big help. I find myself nervous about the possible reversal when I hear the stories of people needing to always be near a bathroom or having accidents, I feel I may kind of have it easier in a weird way?????? Anyhow, it won't be as bad as you are thinking if it is what you decide, it just takes a little time. Good luck, as always Im praying for all!!

    Choices
    Thank you all so much for your encouraging words & prayers.
    Eihtak....thank you for your reply. It helps hearing from someone who's had to deal with similar issues. I'm only 49 & having a hard time 'wrapping my brain' around all this! But I'm also growing tired of the pain & lack of energy, not being able to enjoy life more fully. I have checked out that website along with www.ostomy.org which my nurse gave me. Next Thurs. we're meeting with the ostomy nurse along with a lady who's had an ostomy a few yrs now. I don't know anyone personally who's dealt with this so yes the decisions are scary. You're an inspiration because like my dr says, you're enjoying your life now inspite of this 'change'. I want to be stronger to enjoy my family more, keep up with my grandkids, travel with my hubby. I am 'warming to the idea' of doing this surgery & mentally preparing myself for the changes to come. I don't eat much coz of the 'bathrm' issues & its hard to travel far because of this as well. Yes you may have it (alittle) easier when it comes to these issues but just thinking about the 'freedom' it could bring gives me some 'peace of mind'....if that's possible.
  • 7243
    7243 Member Posts: 249 Member
    #8
    Support
    I'm sorry you're dealing with this. I know you don't want a colostomy, however you can do anything for your life. I have a lovely and beautiful friend who has lived decades with an ostomy ... she lives a full and wonderful life!!! Not to mention she has two wonderful children (with an ostomy and all!), grandchildren and all is well! Hang in there! Will pray for strenght!

    xoxo
  • cap630
    cap630 Member Posts: 151 Member
    #9
    pjs62 said:

    Choices
    Thank you all so much for your encouraging words & prayers.
    Eihtak....thank you for your reply. It helps hearing from someone who's had to deal with similar issues. I'm only 49 & having a hard time 'wrapping my brain' around all this! But I'm also growing tired of the pain & lack of energy, not being able to enjoy life more fully. I have checked out that website along with www.ostomy.org which my nurse gave me. Next Thurs. we're meeting with the ostomy nurse along with a lady who's had an ostomy a few yrs now. I don't know anyone personally who's dealt with this so yes the decisions are scary. You're an inspiration because like my dr says, you're enjoying your life now inspite of this 'change'. I want to be stronger to enjoy my family more, keep up with my grandkids, travel with my hubby. I am 'warming to the idea' of doing this surgery & mentally preparing myself for the changes to come. I don't eat much coz of the 'bathrm' issues & its hard to travel far because of this as well. Yes you may have it (alittle) easier when it comes to these issues but just thinking about the 'freedom' it could bring gives me some 'peace of mind'....if that's possible.

    Hope
    Hoping today went well for you. You have been in my thoughts and prayers. ~Carol
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #10
    pjs62 said:

    Choices
    Thank you all so much for your encouraging words & prayers.
    Eihtak....thank you for your reply. It helps hearing from someone who's had to deal with similar issues. I'm only 49 & having a hard time 'wrapping my brain' around all this! But I'm also growing tired of the pain & lack of energy, not being able to enjoy life more fully. I have checked out that website along with www.ostomy.org which my nurse gave me. Next Thurs. we're meeting with the ostomy nurse along with a lady who's had an ostomy a few yrs now. I don't know anyone personally who's dealt with this so yes the decisions are scary. You're an inspiration because like my dr says, you're enjoying your life now inspite of this 'change'. I want to be stronger to enjoy my family more, keep up with my grandkids, travel with my hubby. I am 'warming to the idea' of doing this surgery & mentally preparing myself for the changes to come. I don't eat much coz of the 'bathrm' issues & its hard to travel far because of this as well. Yes you may have it (alittle) easier when it comes to these issues but just thinking about the 'freedom' it could bring gives me some 'peace of mind'....if that's possible.

    If you still have concerns about an ostomy
    I highly recommend this book:

    The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies [Paperback]

    Barbara Dorr Mullen (Author)

    Kerry Anne McGinn RN BSN OCN (Author)

    It was written by a mother who had the ostomy and her daughter who is the RN. I found it to be very helpful in figuring out how to live life after...

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