Hello...I'm new :-)

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  • Dizzie
    Dizzie Member Posts: 13
    #22
    khl8 said:

    Dizzie,
    I am sorry that you
    Dizzie,
    I am sorry that you had to find us, but you will be so glad that you did. this journey you are on will be scary at best, but we all have been there, or are there, or going there, and you can get the support you need right here.
    I pwersonally think the fear of the unknown is the worst. for every step i had to take and to learn what was happening was the hardest, but you know what? After I did it once I could manage to get through it. You have alot of choices to make and you need to decide what is best for you and your life. Just remain strong and be prepared to make decisions that you and you alone can live with. this is a roller coaster and don't forget to "remian seated until the ride comes to a complete stop"
    Kathy

    Kathy khl8
    Hi Kathy,

    Thank you for the reply to my post. I have made my decisions now after meeting with my surgeon on Wednesday this week.
    I have decided that I have exhausted all avenues, done my research and tried my best to find an alternative solution but the fact remains that APR is the most sensible route for me to take now.

    Am I happy about this? ....Well, no...BUT I've moved into an acceptance mode. My surgery will take place around the 28th September and I'm absolutely terrified but know I have no other choices - apart from refusing surgery which is NOT a valid choice.

    Thank you all on this board for both the very warm welcome and also the positive posts that made me think and believe that I 'can' do this.

    Much luv, Dizzie xx
  • Dizzie
    Dizzie Member Posts: 13
    #23
    pepebcn said:

    Welcome from Barcelona Dizzie
    It starts to be an international forum! First of all be aware that im the worst english
    speaker of this board so anything you understand to me is a big achievement from
    from your side! So congratulations!.
    Here you will fin answers to your conncerns ,strength for your soul ,
    some tears,and why not big laughs and friends!

    Pepebcn....
    If you're the worst English speaker on this board I shall have no problems whatsoever....I'm not even going to tell you how bad my Spanish is :-)

    Answers, strength, tears, laughter and friends sounds like a perfect recipe to me

    Dizzie xx
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #24
    Welcome
    Hello,

    Welcome to the site. Sorry you're going through such a tough time and having such tough decisions to make. Yes, this is a friendly site and everyone here is always very supportive. I find it's one of the more active sites & when you make a post, usually there are replies within the hour or even sooner.
    Hopefully Sonia32 will see this post of yours and reply- she also lives in London, England. If you don't hear from her, try and contact her. She is stage III and currently has no evidence of disease. I've had the pleasure of making my first ever overseas phone call to her and enjoyed talking with her a couple of times recently.

    I'm stage IV- diagnosed at age 41 in Aug. 2007 with mets to the liver and lungs. Just over 3 years now & I'm still here, still kicking, and still fighting. There is definitely a lot to deal with and news to digest with this disease. I've found that over time I am capable of digesting more information. My advice to you is always do your own research and stay on top of things. It is always helpful to get a 2nd and even a 3rd opinion. I've discovered through others on this board and my own experiences that what one doctor says might be completely contrary to what another one says. Perhaps you could even talk to someone else to see if you actually need a permanent colostomy or if a temporary ileostomy could work for you. -I know you said you have zero options because "the tumor is too low"... how low is low? Mine was 3 cm up from the anus & I was originally told I would also need a permanent colostomy by one colorectal surgeon, then I decided to get another opinion and was told by her that she thought I had about an 80-90% chance of being able to get the anal sphincter saving surgery and not needing the permanent colostomy, but could get a temporary ileostomy instead. (I had radiation first & had a complete response to the radiation & didn't actually end up getting the surgery at all- that's another story) But it's definitely worth checking into with another colorectal surgeon who specializes in that kind of surgery (not just a general surgeon) for sure!

    Blessings to you, my dear-
    Lisa
  • Dizzie
    Dizzie Member Posts: 13
    #25
    lisa42 said:

    Welcome
    Hello,

    Welcome to the site. Sorry you're going through such a tough time and having such tough decisions to make. Yes, this is a friendly site and everyone here is always very supportive. I find it's one of the more active sites & when you make a post, usually there are replies within the hour or even sooner.
    Hopefully Sonia32 will see this post of yours and reply- she also lives in London, England. If you don't hear from her, try and contact her. She is stage III and currently has no evidence of disease. I've had the pleasure of making my first ever overseas phone call to her and enjoyed talking with her a couple of times recently.

    I'm stage IV- diagnosed at age 41 in Aug. 2007 with mets to the liver and lungs. Just over 3 years now & I'm still here, still kicking, and still fighting. There is definitely a lot to deal with and news to digest with this disease. I've found that over time I am capable of digesting more information. My advice to you is always do your own research and stay on top of things. It is always helpful to get a 2nd and even a 3rd opinion. I've discovered through others on this board and my own experiences that what one doctor says might be completely contrary to what another one says. Perhaps you could even talk to someone else to see if you actually need a permanent colostomy or if a temporary ileostomy could work for you. -I know you said you have zero options because "the tumor is too low"... how low is low? Mine was 3 cm up from the anus & I was originally told I would also need a permanent colostomy by one colorectal surgeon, then I decided to get another opinion and was told by her that she thought I had about an 80-90% chance of being able to get the anal sphincter saving surgery and not needing the permanent colostomy, but could get a temporary ileostomy instead. (I had radiation first & had a complete response to the radiation & didn't actually end up getting the surgery at all- that's another story) But it's definitely worth checking into with another colorectal surgeon who specializes in that kind of surgery (not just a general surgeon) for sure!

    Blessings to you, my dear-
    Lisa

    Thank you Lisa
    Thank you Lisa for the thoughtful advice in your post.

    I've been a complete pain to my medical team by questioning and requestioning everything. I have had a 2nd opinion which was the same as the first.

    The Radiotherapy had only a very limited effect on the tumour, the MRI showed there was virtually no difference but the recent PET scan (that I really had to fight hard for) showed a reduction - but sadly not enough of one.

    The tumour is 'straddling the anal verge and the sphincters' according to the surgeon. This apparently is why he cannot get a good enough margin.
    He has informed me (and the other doctor agreed) that because the tumour has grown into the sphincter muscle it would be impossible for me to have any resemblence of bowel control if they even attempted to remove the tumour - he said that he definitely would not be able to get it all and he guarantees I will be left incontinent.
    Not viable options so against all my instincts I have to do the op...and I have to find a way to cope with a Stoma and permanant colostomy - and I will, with help.

    I think your advice about always questioning and doing your own research is excellent. I definitely had to do that and I've found that in the UK they give limited information compared to what you get from your medical teams in the US. We get no copies of blood test results, MRI's, Scans etc here - it's all given verbally.
    I've had to ask and re-ask so many questions but I've really exhausted all avenues now.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #26
    Dizzie said:

    Thank you Lisa
    Thank you Lisa for the thoughtful advice in your post.

    I've been a complete pain to my medical team by questioning and requestioning everything. I have had a 2nd opinion which was the same as the first.

    The Radiotherapy had only a very limited effect on the tumour, the MRI showed there was virtually no difference but the recent PET scan (that I really had to fight hard for) showed a reduction - but sadly not enough of one.

    The tumour is 'straddling the anal verge and the sphincters' according to the surgeon. This apparently is why he cannot get a good enough margin.
    He has informed me (and the other doctor agreed) that because the tumour has grown into the sphincter muscle it would be impossible for me to have any resemblence of bowel control if they even attempted to remove the tumour - he said that he definitely would not be able to get it all and he guarantees I will be left incontinent.
    Not viable options so against all my instincts I have to do the op...and I have to find a way to cope with a Stoma and permanant colostomy - and I will, with help.

    I think your advice about always questioning and doing your own research is excellent. I definitely had to do that and I've found that in the UK they give limited information compared to what you get from your medical teams in the US. We get no copies of blood test results, MRI's, Scans etc here - it's all given verbally.
    I've had to ask and re-ask so many questions but I've really exhausted all avenues now.

    Hey Dizz
    I just wanted to say "Hi".... Looking forward to sharing "LIFE" with you from here on out. You take care.

    Jennie

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