new - stage 3

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  • LisaMMiles
    LisaMMiles Member Posts: 38
    pem said:

    stage 3

    AS SOON AS I SAW I HAD RESPONSES GO FIGURE I STARTED TO CRY..  ALL YOUR RESPONSES ARE GREATLY APPRECIATED AND I THANK YOU ALL  FROM THE BOTTOM OF MY HEART.  THRILLED TO HEAR PEOPLY ARE DOING WELL WITH ALL STAGES. MY PRAYERS ARE WITH ALL OF YOU.  PEM

    Just finished my treatments

    Pem, I just finished my treatments and am only 5 days out. I had 30 rad treatments and only the first round of chemo as my body was pretty worn out from the rad that they would not give me any more chemo. I was only a stage 1 as they got like 99% of the tumor out. I had all the same fears and cried all the time too as I am a mom of 4 kids and I am only 46 yrs old. I was told before surgery that it was just a polyp that would go bad eventually. After it was removed as I am in recovery they came in to tell me that it is a very rare cancer that only 1% get. And at that moment had no idea what kind it really was and had not idea if there was a cure :( I went from that Thurs till the next Monday not knowing what I had. But knew that because it was so close to the colan that they could not remove it all without hurting the colan which woud cause a lot more problems. So we had to move on with the treatments. I did find out I was like 98% curable, which put my mind at ease a little but still my world came crashing down!! I cried a lot! And still do. I finished treatments last Friday, and am now in the two weeks of the first part of healing. I will be honest and I know everyone is different, but the treatments were horrible for me. Lots of side effects! Chemo made me really sick and tired, and gave me mouth sores all the way down through my body which was horribly painfull, and the radiation has my lower end pretty much a mess, and am still hurting really bad 5 days out. I wish I would have been told these things were gonna be like this. But even if you prepare yourself, I dont think you are ever prepared for this :( They say that the radiation keeps on radiating you even up to 6 day or so after you are done. And it does. I started to get the pain about 3 1/2 weeks into radiation and it continued to get worse for me. And even 5 days out I am still on fire and hurting real bad and acually got flu symptoms the last few days. So really hope I dont get any sicker. If you have any more questions dont hesitate to ask :)

  • Eliz3
    Eliz3 Member Posts: 32
    mp327 said:

    Eliz3

    I can understand your concerns with the delay in your sister's treatment.  And yes, they do staging for anal cancer.  It's necessary in order for the doctors to know exactly what they're dealing with, such as is the tumor localized, is there lymph node involvement, or any sign of spread to other organs.  I'm sorry that her doctors don't seem to be forthcoming with more information and that she is hesitant to ask questions, making for a concerning equation.  I totally understand your frustration!

    Perhaps your sister's desire to not know what lies ahead has to do with fear.  Some people just do not want too much information.

    MP327 and Pializ

    Thank you for your reply MP327.  I do get worried about the delay in treatment, I think I have to calm down a bit.

    I told my sister to ask about her staging and he told her they don't do that!  I am sure they must, feel like calling and asking them why not?

    Pializ, I did a mindfulness course about six months ago, it was wonderful.  I had trouble staying awake when meditating, which of course is not the idea.  You really have to keep reminding yourself to take the time to 'smell the roses', it takes discipline.

    I also really enjoyed your post, thank you.  I hope all goes well with your latest scan, will keep my fingers crossed for you, please let us know how you go.

  • sephie
    sephie Member Posts: 650 Member
    Eliz3 said:

    MP327 and Pializ

    Thank you for your reply MP327.  I do get worried about the delay in treatment, I think I have to calm down a bit.

    I told my sister to ask about her staging and he told her they don't do that!  I am sure they must, feel like calling and asking them why not?

    Pializ, I did a mindfulness course about six months ago, it was wonderful.  I had trouble staying awake when meditating, which of course is not the idea.  You really have to keep reminding yourself to take the time to 'smell the roses', it takes discipline.

    I also really enjoyed your post, thank you.  I hope all goes well with your latest scan, will keep my fingers crossed for you, please let us know how you go.

    Eliz3, wrong answer from doc

    i have missed where your sis is located but i would try to get 2nd opinion fast..... and did pathology do biopsy???? they will know stage....if her doc is saying that they do not stage it ,,,, could it be that they think she has pre cancerous lesion which would be stage 0 or bowen's disease???? i do not know but this is absurd.... i probably have missed all of your info about your sis....but remember that this is a RARE cancer and docs mis diagnosis it all the time.....and treatment is very hard so go where they have great xray machines (imrt) and docs who have seen hundreds of these anal monsters......... my town had only seen about 3 and the next biggest town saw about 10 per year so i went to MD Anderson  but there are lots of great hospitals...... hugs    sephie

  • Marynb
    Marynb Member Posts: 1,118
    sephie said:

    Eliz3, wrong answer from doc

    i have missed where your sis is located but i would try to get 2nd opinion fast..... and did pathology do biopsy???? they will know stage....if her doc is saying that they do not stage it ,,,, could it be that they think she has pre cancerous lesion which would be stage 0 or bowen's disease???? i do not know but this is absurd.... i probably have missed all of your info about your sis....but remember that this is a RARE cancer and docs mis diagnosis it all the time.....and treatment is very hard so go where they have great xray machines (imrt) and docs who have seen hundreds of these anal monsters......... my town had only seen about 3 and the next biggest town saw about 10 per year so i went to MD Anderson  but there are lots of great hospitals...... hugs    sephie

    Eliz3
    I agree with Sephie. I am going to go straight to the point. It sounds like your sister needs to get to a good cancer hospital. It's her life they are playing with. I know there are patients here who went to a local hosptial and they are satisfied with their care. When a doctor tells ana anal cancer patient that they don't stage anal cancer.........run!
  • Eliz3
    Eliz3 Member Posts: 32
    A good talk.

    Thank you Sephie and Mary.  I will have a good talk about it all with my sister when I visit next week.  I just can't come up with any reasons why he would have told her that, other than if it is the standard treatment given to all patients initially, when it is still in the pelvic area only, and he doesn't stage it then, who knows.  We will get on to it next week, I need to know!

    This is a major cancer hospital here in Australia, a very good one, so we shall have to have faith.  I just want to get the treatment started and get it over with, the wait is agony, so i don't know how she manages holding up so well.  One week to go.  I do know they have changed the position she will be in on the radiotherapy table, from legs bent to sraight out, does that mean anything to anyone?

    Hope you are all keeping well.

  • sephie
    sephie Member Posts: 650 Member
    Eliz3 said:

    A good talk.

    Thank you Sephie and Mary.  I will have a good talk about it all with my sister when I visit next week.  I just can't come up with any reasons why he would have told her that, other than if it is the standard treatment given to all patients initially, when it is still in the pelvic area only, and he doesn't stage it then, who knows.  We will get on to it next week, I need to know!

    This is a major cancer hospital here in Australia, a very good one, so we shall have to have faith.  I just want to get the treatment started and get it over with, the wait is agony, so i don't know how she manages holding up so well.  One week to go.  I do know they have changed the position she will be in on the radiotherapy table, from legs bent to sraight out, does that mean anything to anyone?

    Hope you are all keeping well.

    australia differs from america

    who knows about hospitals.... i was in a bull frog position in a mold ( so that i would not move at all) with my arms behind my head and legs with knees out to side like frog ....the mold kept me from moving as the xray machine moved all the way around my pelvis and back end..... this is IMRT...... sooooooo who knows.......   sephie

  • M1234
    M1234 Member Posts: 17
    Eliz3 said:

    A good talk.

    Thank you Sephie and Mary.  I will have a good talk about it all with my sister when I visit next week.  I just can't come up with any reasons why he would have told her that, other than if it is the standard treatment given to all patients initially, when it is still in the pelvic area only, and he doesn't stage it then, who knows.  We will get on to it next week, I need to know!

    This is a major cancer hospital here in Australia, a very good one, so we shall have to have faith.  I just want to get the treatment started and get it over with, the wait is agony, so i don't know how she manages holding up so well.  One week to go.  I do know they have changed the position she will be in on the radiotherapy table, from legs bent to sraight out, does that mean anything to anyone?

    Hope you are all keeping well.

    treatment postion

    I layed flat on my back arms to side and/or on stomach.  My legs were in a mold to hold my postion consistant each treatment.  I received radiation via an IMRT machine.  My stage was 2.  However, my friend who was stage 3 received the same chemo treatment just had 5 more radiation treatments than I did.  She was postiioned face down with a pelvic mold.  I think the positioning has to do with location of tumor and radiation machine.  I do not believe my friend received radiation treatments via an IRMT machine.

  • horsepad
    horsepad Member Posts: 146 Member
    I am a stage 4 survivor,

    I am a stage 4 survivor, cancer in my lympth nodes and liver.  I finished treatment in Sept. 2011.  I feel great, I look great (or so I've been told) and I am full of gratitude for all my blessings.  My life has changed significantly, not physically but mentally.  Cancer has made me a better person.   I had the same treatment as everyone else and also had a liver resection.  I

  • eihtak
    eihtak Member Posts: 1,473 Member
    horsepad said:

    I am a stage 4 survivor,

    I am a stage 4 survivor, cancer in my lympth nodes and liver.  I finished treatment in Sept. 2011.  I feel great, I look great (or so I've been told) and I am full of gratitude for all my blessings.  My life has changed significantly, not physically but mentally.  Cancer has made me a better person.   I had the same treatment as everyone else and also had a liver resection.  I

    horsepad.....

    I love your positive attitude. I too, once told someone that in a weird way, having cancer was one of the greatest blessings of my life. (they thought I was crazy) It has a way of making you a better person. Maybe it just depends on where a person is in life before, then how treatment goes, and then again where you are in recovery and as you move forward.....glad you are doing so well!