I know we've all talked about this before

2»

Comments

  • sephie
    sephie Member Posts: 650 Member
    understandable
    hey, my heart goes out to you and to us all because any pain or blood makes us so afraid. the bright red color is good. go to your doc. hugs to you sephie
  • sissy310
    sissy310 Member Posts: 300
    mp327 said:

    I agree!
    There is so much more that needs to be learned about this cancer, starting with the doctors! I am so sick of hearing about new people coming on the forums who were misdiagnosed, some of them for long periods of time. Some doctors seem to be ignorant of the fact that this disease even exists! My internist was so sure I had bleeding hemorrhoids--I can still hear her say "there it is!" as she was doing my rectal exam, then telling me it's "just a hemorrhoid and I'm writing you a prescription for some proctofoam." I'll never forget when she called me a few weeks later as I was lying in bed recovering from my port surgery earlier that day. She had just found out that I was diagnosed with CANCER!, not a hemorrhoid. I was too wiped out from the anesthesia to tell her how stupid she was. Needless to say, she's no longer my doctor.

    I hear you Martha! -- my
    I hear you Martha! -- my doctor, when he found out I had cancer after the hemi surgery was shocked. I really think that most GP's and even general surgeons (both of them misdiagnosed me until after the surgery) either do not know what they are feeling in there or assume if a colonoscopy is done everything is okay (both of mine asked when the colonoscopy was that I had last and I said two years). With that they just figured okay, it's a hemi. Yah, right. I have not gone back to my GP since but he asks my sons and husband if I am okay and how am I feeling. My husband thinks since this happened, he's more diligent about everything now. Doesn't do me any good. I'm not even sure I want to go back to him, even though he's been on spot with everything else. Do I blame him for being ignorant about anal cancer? I don't know. Don't know how I feel about it but I have the feeling if I ever do see him again I'm going to tell him to make sure everyone in his practice is aware that this cancer exists, rare or not. On another note, my first 3 month scans are in two weeks and I'm starting to feel the building up of stress, anxiety and depression. At first I thought I was just overly tired but I think it's the anticipatory anxiety. Every little thing is annoying me or I burst into tears for the dumbest things. My friend Laine who had lung cancer just finished her 6 month scan and is NED so we had a celebration via email. Always good to hear such good news. She said she will relax now for a few months and then the anxiety and such starts again. This truly is a roller coaster ride!
  • mp327
    mp327 Member Posts: 4,440 Member
    sissy310 said:

    I hear you Martha! -- my
    I hear you Martha! -- my doctor, when he found out I had cancer after the hemi surgery was shocked. I really think that most GP's and even general surgeons (both of them misdiagnosed me until after the surgery) either do not know what they are feeling in there or assume if a colonoscopy is done everything is okay (both of mine asked when the colonoscopy was that I had last and I said two years). With that they just figured okay, it's a hemi. Yah, right. I have not gone back to my GP since but he asks my sons and husband if I am okay and how am I feeling. My husband thinks since this happened, he's more diligent about everything now. Doesn't do me any good. I'm not even sure I want to go back to him, even though he's been on spot with everything else. Do I blame him for being ignorant about anal cancer? I don't know. Don't know how I feel about it but I have the feeling if I ever do see him again I'm going to tell him to make sure everyone in his practice is aware that this cancer exists, rare or not. On another note, my first 3 month scans are in two weeks and I'm starting to feel the building up of stress, anxiety and depression. At first I thought I was just overly tired but I think it's the anticipatory anxiety. Every little thing is annoying me or I burst into tears for the dumbest things. My friend Laine who had lung cancer just finished her 6 month scan and is NED so we had a celebration via email. Always good to hear such good news. She said she will relax now for a few months and then the anxiety and such starts again. This truly is a roller coaster ride!

    Marilyne--
    I know the stress that you are feeling right now with your scans coming up. It's really an anxious time and I never deal with that too well, so I won't attempt to give you advice. Just know that lots of us are thinking about you and keeping you in our prayers.

    As for my old internist, I decided I was not going back to her as soon as I found out I had cancer. I know doctors make mistakes and she had tried to get me to get that first colonoscopy a couple of years before my diagnosis. I was just too stubborn. My fault. However, what really made me upset with her was that I went to her for rectal bleeding in June 08 and her only reason for insisting I get a colonoscopy at that time was because I hadn't had one yet--not because of the bleeding. She was pretty nonchalant about it because she was so sure I had a hemorrhoid that she did not stress getting the colonoscopy because of the bleeding. I think this is where so many doctors fall short--they are assuming that their diagnosis is correct and don't refer the patient to a specialist for confirmation by a more thorough exam. I have often thought of writing her a letter and telling her that my experience happens all the time and people are getting misdiagnosed way too often. Also, doctors need to know that colonoscopies are NOT the best exams for finding anal cancer--another misconception.
  • TJ30
    TJ30 Member Posts: 11
    mp327 said:

    Marilyne--
    I know the stress that you are feeling right now with your scans coming up. It's really an anxious time and I never deal with that too well, so I won't attempt to give you advice. Just know that lots of us are thinking about you and keeping you in our prayers.

    As for my old internist, I decided I was not going back to her as soon as I found out I had cancer. I know doctors make mistakes and she had tried to get me to get that first colonoscopy a couple of years before my diagnosis. I was just too stubborn. My fault. However, what really made me upset with her was that I went to her for rectal bleeding in June 08 and her only reason for insisting I get a colonoscopy at that time was because I hadn't had one yet--not because of the bleeding. She was pretty nonchalant about it because she was so sure I had a hemorrhoid that she did not stress getting the colonoscopy because of the bleeding. I think this is where so many doctors fall short--they are assuming that their diagnosis is correct and don't refer the patient to a specialist for confirmation by a more thorough exam. I have often thought of writing her a letter and telling her that my experience happens all the time and people are getting misdiagnosed way too often. Also, doctors need to know that colonoscopies are NOT the best exams for finding anal cancer--another misconception.

    You should write your doctor Martha....
    It may save someones life! And even thou she may never see anyone else with anal cancer it is on the rise so she will keep a look out!

    To others here who worry about recurrence there are some interesting websights that give insight on how to "stop making cancer". Websights such as stopmakingcancer.com, Phmiracleliving.com, cancerangel.com.

    These concepts give a sense of control and hope. while going thru treatment or to prevent.
  • sissy310
    sissy310 Member Posts: 300
    mp327 said:

    Marilyne--
    I know the stress that you are feeling right now with your scans coming up. It's really an anxious time and I never deal with that too well, so I won't attempt to give you advice. Just know that lots of us are thinking about you and keeping you in our prayers.

    As for my old internist, I decided I was not going back to her as soon as I found out I had cancer. I know doctors make mistakes and she had tried to get me to get that first colonoscopy a couple of years before my diagnosis. I was just too stubborn. My fault. However, what really made me upset with her was that I went to her for rectal bleeding in June 08 and her only reason for insisting I get a colonoscopy at that time was because I hadn't had one yet--not because of the bleeding. She was pretty nonchalant about it because she was so sure I had a hemorrhoid that she did not stress getting the colonoscopy because of the bleeding. I think this is where so many doctors fall short--they are assuming that their diagnosis is correct and don't refer the patient to a specialist for confirmation by a more thorough exam. I have often thought of writing her a letter and telling her that my experience happens all the time and people are getting misdiagnosed way too often. Also, doctors need to know that colonoscopies are NOT the best exams for finding anal cancer--another misconception.

    I so agree with you
    I so agree with you Martha...and TJ -- write your doctor a letter if you feel comfortable doing so...if your diagnosis and her finding out has not changed her (like it did my doctor - he's more aware now) maybe a letter will. I know the next time I see mine, he will get an earful (only because he truly listens - I was just naive and did not know about anal cancer at the time either.

    A very heartfelt thank you for understanding what this is I'm going through and confirming that it's normal to feel this way. Honestly, the intense emotions that come and go kind of caught me off guard - not sure why as I've gone through with you and others having the same emotions. It's quite unnerving. All I can say is I cannot wait until November 8th or 11th...whichever one I will hear the results from.
  • lizdeli
    lizdeli Member Posts: 569 Member
    sephie said:

    understandable
    hey, my heart goes out to you and to us all because any pain or blood makes us so afraid. the bright red color is good. go to your doc. hugs to you sephie

    I was so fortunate
    My GP saved my life. I called his office and asked for an appt. Told nurse I had seen a small amount of blood. She said, "come in now". After my GP talked to me he made an appointment on the spot with a colorectal doctor and sent me right over. At the time he said, "it's probably nothing, but I like to rule out things". Same day mass was detected and colonoscopy the next day. I thank God that my GP is so thorough. He's my hero! I had no pain, no bowel problems, no hemis, no weight loss - nothing except a small amount of blood four times over four weeks.

    Liz
  • mp327
    mp327 Member Posts: 4,440 Member
    lizdeli said:

    I was so fortunate
    My GP saved my life. I called his office and asked for an appt. Told nurse I had seen a small amount of blood. She said, "come in now". After my GP talked to me he made an appointment on the spot with a colorectal doctor and sent me right over. At the time he said, "it's probably nothing, but I like to rule out things". Same day mass was detected and colonoscopy the next day. I thank God that my GP is so thorough. He's my hero! I had no pain, no bowel problems, no hemis, no weight loss - nothing except a small amount of blood four times over four weeks.

    Liz

    Hi Liz
    All the other docs who weren't as thorough as yours could learn something from him. It sounds like he practices medicine under the "do not assume" rule, as in do not assume that rectal bleeding is caused by hemorrhoids until that's been confirmed. Too bad there aren't more like him!
  • SueRelays
    SueRelays Member Posts: 485

    To those of us that have
    To those of us that have experienced cancer, im not sure how we can ever feel comfortable with our bodies like we did before being dx with cancer. Every pain, bump, site of blood, a change in our bodies that wasnt present before, abnormal lab test, and illness captures our attention and accelerates our heartbeat. Its like a flashback that never quite leaves, lurking in our shadows as it fades in and out. Personally, I juggle not only the threat of a 3rd cancer recurrance but another organ rejection of my pancreas, a relaspe of type 1 diabetes, progression of heart failure & surgery, and the emergence of a new long term complication from previous chemo treatments. Im 53 years old and the day I was dx with type 1 diabetes in Sept 1977 at the age of 20, nothing has ever been the same. I remind myself how fortunate I have been during my life, including the caring doctors, top medical care, a lovely wife, a 32 yr career in the business world, and the numerous opportunities to turn events of misfortune into focusing on helping others where disease has entered in their lives so rudely. Depressison scares the hell out of me and i refuse to let it be the next intruder to steal what every time I have remaining.

    For everytime there is a human being that crosses our path within our lives, there is a moment to make a difference and offer kindess, compassion and understanding. I aspire to live for those moments. I love the members of CSN.

    thank you

    It is pretty amazing isn't
    It is pretty amazing isn't it that we are able to function somewhat normally mentally, at all isn't it? If I cough, I fear lung cancer is back. if my stomach hurts, then surely it's my liver or stomach cancer, blood, anal cancer must be back..and then you barely get through one scan and it's time to stress out over another! But you know, somehow, I'm pretty damn happy on a daily basis!!!

    AND I LOVE THIS:

    For everytime there is a human being that crosses our path within our lives, there is a moment to make a difference and offer kindess, compassion and understanding. I aspire to live for those moments. I love the members of CSN.

    CHEERS to you...and always wish you strength and wellness!! Thanks for being you and being here again!!!
  • mp327
    mp327 Member Posts: 4,440 Member
    SueRelays said:

    It is pretty amazing isn't
    It is pretty amazing isn't it that we are able to function somewhat normally mentally, at all isn't it? If I cough, I fear lung cancer is back. if my stomach hurts, then surely it's my liver or stomach cancer, blood, anal cancer must be back..and then you barely get through one scan and it's time to stress out over another! But you know, somehow, I'm pretty damn happy on a daily basis!!!

    AND I LOVE THIS:

    For everytime there is a human being that crosses our path within our lives, there is a moment to make a difference and offer kindess, compassion and understanding. I aspire to live for those moments. I love the members of CSN.

    CHEERS to you...and always wish you strength and wellness!! Thanks for being you and being here again!!!

    Cancer is a great teacher!
    I never would have believed that until I was diagnosed with the disease myself. It has taught me so many things: kindness, compassion, patience, tolerance, how to appreciate each and every day. I don't think I would have ever learned all of that without cancer. Granted, I would probably have chosen an easier way if given a choice, but cancer certainly got my attention! Not to mention all of the amazing people I've met because of it!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    sephie said:

    yea for 6 years
    craig, what stage was your's?? i like to hear that you are 6 years post . i am only 15 months post with pain, inflammation, mucous, and a little blood. scary but hopefully just radiation damage. thanks sephie

    HI Sephie:)
    Mine was colorectal cancer and was originally diagnosed as a IIb, as I recall. Once it metastasied, I went to Stage IV. I've had it go to my liver and have had mets to the lung twice.

    And yes, I've been hard at this fighting all the way for almost 6.5 years - when I finish up this round of treatments, I will be at the 7-year mark! I still find that hard to believe, but I am still here and that is why I post.

    I check out you guys site to see if I can offer anything - I know Sue and JoAnne and I stay in touch with them and see if there are any posts that I can help with.

    Radiation damage did me in big time - combined with the rectal resect, and I was a very sick puppy for 2-years and had bleeding alot. They told me after the surgery, I'd never bleed again, LOL:)

    But that was alot of trauma for my body to handle and it just took alot of time for the new bowel to relearn how to be - when you mess with Mother Nature's plumbing, you really can be in for it.

    There were hemohrroids and anal fissures by the handful and those are what was bleeding. So, bright red is a better color than the dark red and indicated "fresh blood." You still never get used to it though, just always makes your mind wander to that dark place. But a scope can always get you some answers and let you know what you're up against too, so that's a good tool to utilize.

    Well, it was good talking with you and nice to meet you:)

    Take care, Sephie

    -Craig
  • pjjenkins
    pjjenkins Member Posts: 173
    Unnerving for sure
    I am going through a round of bloody stools and diarrhea and worrying,too. I am putting a time box around it and if I go over, will call my PCP and colorectal guy.... BUT I have done this before and it always clears up - so far... Nearly three years out also.

    I continue to hold us all in my thoughts and prayers.

    Priscilla
  • pjjenkins
    pjjenkins Member Posts: 173
    sissy310 said:

    I hear you Martha! -- my
    I hear you Martha! -- my doctor, when he found out I had cancer after the hemi surgery was shocked. I really think that most GP's and even general surgeons (both of them misdiagnosed me until after the surgery) either do not know what they are feeling in there or assume if a colonoscopy is done everything is okay (both of mine asked when the colonoscopy was that I had last and I said two years). With that they just figured okay, it's a hemi. Yah, right. I have not gone back to my GP since but he asks my sons and husband if I am okay and how am I feeling. My husband thinks since this happened, he's more diligent about everything now. Doesn't do me any good. I'm not even sure I want to go back to him, even though he's been on spot with everything else. Do I blame him for being ignorant about anal cancer? I don't know. Don't know how I feel about it but I have the feeling if I ever do see him again I'm going to tell him to make sure everyone in his practice is aware that this cancer exists, rare or not. On another note, my first 3 month scans are in two weeks and I'm starting to feel the building up of stress, anxiety and depression. At first I thought I was just overly tired but I think it's the anticipatory anxiety. Every little thing is annoying me or I burst into tears for the dumbest things. My friend Laine who had lung cancer just finished her 6 month scan and is NED so we had a celebration via email. Always good to hear such good news. She said she will relax now for a few months and then the anxiety and such starts again. This truly is a roller coaster ride!

    Stress - anxiety
    They are part of the process. I do think we all need to be busy as we can at things we like or need to do and talk/write to each other, reassure each other, uplift as we can and ...
    Live each day to its fullest. AND remember to eat well, exercise, rest.

    This is a great board! Thanks all and

    I hold us all in thoughts and prayers.

    P
  • SueRelays
    SueRelays Member Posts: 485
    pjjenkins said:

    Unnerving for sure
    I am going through a round of bloody stools and diarrhea and worrying,too. I am putting a time box around it and if I go over, will call my PCP and colorectal guy.... BUT I have done this before and it always clears up - so far... Nearly three years out also.

    I continue to hold us all in my thoughts and prayers.

    Priscilla

    Yeah mine lasted a couple
    Yeah mine lasted a couple days and is gone, so I guess it's what Craig mentioned....fissure or something.
    I have a scan and exam coming up in November so will discuss then....but they never seemed worried!! JUST ME :)!!

    Prayers and positive energies for all!!!
  • sephie
    sephie Member Posts: 650 Member
    Sundanceh said:

    HI Sephie:)
    Mine was colorectal cancer and was originally diagnosed as a IIb, as I recall. Once it metastasied, I went to Stage IV. I've had it go to my liver and have had mets to the lung twice.

    And yes, I've been hard at this fighting all the way for almost 6.5 years - when I finish up this round of treatments, I will be at the 7-year mark! I still find that hard to believe, but I am still here and that is why I post.

    I check out you guys site to see if I can offer anything - I know Sue and JoAnne and I stay in touch with them and see if there are any posts that I can help with.

    Radiation damage did me in big time - combined with the rectal resect, and I was a very sick puppy for 2-years and had bleeding alot. They told me after the surgery, I'd never bleed again, LOL:)

    But that was alot of trauma for my body to handle and it just took alot of time for the new bowel to relearn how to be - when you mess with Mother Nature's plumbing, you really can be in for it.

    There were hemohrroids and anal fissures by the handful and those are what was bleeding. So, bright red is a better color than the dark red and indicated "fresh blood." You still never get used to it though, just always makes your mind wander to that dark place. But a scope can always get you some answers and let you know what you're up against too, so that's a good tool to utilize.

    Well, it was good talking with you and nice to meet you:)

    Take care, Sephie

    -Craig

    bless you
    craig, You are amazing and I love your dog!!! thankyou for telling me your story. your body has been tortured and needs a break. hope it comes soon so you can heal. hem-roids and fissures are what can fool us and doctors regarding anal cancer. mine was misdiagnosed for almost a year with a doc doing anoscopes but the next doctor caught it. I get scoped now at MDA. good luck with the tx. you are still fighting strong. nice to meet you. sephie
  • z
    z Member Posts: 1,414 Member
    SueRelays said:

    Yeah mine lasted a couple
    Yeah mine lasted a couple days and is gone, so I guess it's what Craig mentioned....fissure or something.
    I have a scan and exam coming up in November so will discuss then....but they never seemed worried!! JUST ME :)!!

    Prayers and positive energies for all!!!

    bump
    bump