newly diagnosed and don't want to tell what kind of cancer

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Comments

  • StruTanToot
    StruTanToot Member Posts: 126 Member
    torrance said:

    Go Duke!
    I support your decesion to go with Duke. Everything I have read, learned and discussed with my rad onc says IMRT is the way to go. Also the pet scan can detect if there is any cancer in lymph nodes. Try not to be scared, it won't help you cope. Do what you are doing, seek support and guidance from those that you trust.

    Joanne

    Thank you all again for the
    Thank you all again for the encouragement and for providing some info on IMRT.

    I've seen that anal cancer has also been treated successfully with proton therapy. I've gotten some info on proton therapy, but the closest place around me that uses it is in VA. I talked to a couple of doctors...it's supposedly less damaging that IMRT or 3D, but if there is a recurrence, the only option is still a colostomy.

    So IMRT it is. I am going to Duke and had my PET scan yesterday. Treatment starts Monday and begins at 11:00 with getting a picc line.

    I'm grateful for this site and for all of you.
  • Marynb
    Marynb Member Posts: 1,118
    I understand
    Hi. I have struggled with the same issue, but I am not gay, have never had anal sex, and have not had multiple partners. I was, however, married to the same man for 20 years and he was unfaithful for much of the marriage. When I first got the diagnosis, I told people it was a gastrointestinal cancer and that seemed enough. After treatment, I was diagnosed with another rare, unrelated, cancer,so now I just tell people about that cancer.

    I think there is a misunderstanding about the causes of anal cancer. Clearly, it is not a gay man's disease. We are lucky that it is highly treatable. I wish there was another name for this cancer,really. I think there needs to be a public awareness campaign to inform the public about the symptoms. It took many years for the doctors to diagnose me. They kept telling me I had hemmoroids.
  • Marynb
    Marynb Member Posts: 1,118
    I understand
    Hi. I have struggled with the same issue, but I am not gay, have never had anal sex, and have not had multiple partners. I was, however, married to the same man for 20 years and he was unfaithful for much of the marriage. When I first got the diagnosis, I told people it was a gastrointestinal cancer and that seemed enough. After treatment, I was diagnosed with another rare, unrelated, cancer,so now I just tell people about that cancer.

    I think there is a misunderstanding about the causes of anal cancer. Clearly, it is not a gay man's disease. We are lucky that it is highly treatable. I wish there was another name for this cancer,really. I think there needs to be a public awareness campaign to inform the public about the symptoms. It took many years for the doctors to diagnose me. They kept telling me I had hemmoroids.
  • MARIE777
    MARIE777 Member Posts: 4
    Type of cancer
    Stru Tan Toot,
    I feel the same about telling people I have anal cancer. I always say I have colon/rectal cancer and only discuss the truth with family and very close friends. It is hard to say 'anal' and wonder what people think. I am post 1 year from treatment, and doing well, except I had to do 6 more weeks this last month because cancer cells showed in a lymph node. Anal canal is clear!! My scan last week was clear. I am blessed. Stay strong...you can do it! God bless...Marie
  • mp327
    mp327 Member Posts: 4,440 Member
    MARIE777 said:

    Type of cancer
    Stru Tan Toot,
    I feel the same about telling people I have anal cancer. I always say I have colon/rectal cancer and only discuss the truth with family and very close friends. It is hard to say 'anal' and wonder what people think. I am post 1 year from treatment, and doing well, except I had to do 6 more weeks this last month because cancer cells showed in a lymph node. Anal canal is clear!! My scan last week was clear. I am blessed. Stay strong...you can do it! God bless...Marie

    MARIE777
    I'm so glad to hear that your scan was clear! Congratulations!
  • shirlann54
    shirlann54 Member Posts: 162

    Thank you all again for the
    Thank you all again for the encouragement and for providing some info on IMRT.

    I've seen that anal cancer has also been treated successfully with proton therapy. I've gotten some info on proton therapy, but the closest place around me that uses it is in VA. I talked to a couple of doctors...it's supposedly less damaging that IMRT or 3D, but if there is a recurrence, the only option is still a colostomy.

    So IMRT it is. I am going to Duke and had my PET scan yesterday. Treatment starts Monday and begins at 11:00 with getting a picc line.

    I'm grateful for this site and for all of you.

    StruTanToot
    So glad your going to Duke .For one thing the PET scan .You need'nt that test.I had the pic line too.As soon as you get done with your treatments they will take it out.I know i was glad i had the pic line for that reason.I will be glad when this is over for you.And you will get better faster then you think.When you need to talk we will be here for you...SHIRLEY
  • so_confused
    so_confused Member Posts: 1

    thank you all so much
    To each and every one of you...thank you for your support and suggestions. I simply decided to tell my family that I have colorectal cancer and that's as much as I want to go into it.

    I told my brother with the nurse for his wife that I'm a private person and have told him as much as I'm comfortable telling him at this point. He responded very well.

    Finally...I received good news from my CT scan and the radiation oncologist. I'm stage one, so I know I'm very blessed.

    Thanks again to all of you. I do feel like I have another family on this site.

    to tell or not..
    Stru,
    I am new here and was recently dx. I am a 45yr old single female, who is normally pretty open, but this was just a little too personal for me to blurt out at work and other places.
    My parents and daughter know that it is anal cancer, but there are some things my co-workers do NOT need to know. I have told everyone that it is a rare form of colon cancer,so that they get the general idea of where the treatment would effect, without having to explain it, justify it (why i feel the need I'm not sure) or here one more time... "isn't that what Farah Faucet just died from" I am stage 3 and the LAST thing I want to think about is someone dying! jeez some people are just insensitive! lol Just thought I would make my 1st post here to you since I understand the desire to be private. Thanks for listening..
  • mp327
    mp327 Member Posts: 4,440 Member

    to tell or not..
    Stru,
    I am new here and was recently dx. I am a 45yr old single female, who is normally pretty open, but this was just a little too personal for me to blurt out at work and other places.
    My parents and daughter know that it is anal cancer, but there are some things my co-workers do NOT need to know. I have told everyone that it is a rare form of colon cancer,so that they get the general idea of where the treatment would effect, without having to explain it, justify it (why i feel the need I'm not sure) or here one more time... "isn't that what Farah Faucet just died from" I am stage 3 and the LAST thing I want to think about is someone dying! jeez some people are just insensitive! lol Just thought I would make my 1st post here to you since I understand the desire to be private. Thanks for listening..

    Hi so_confused
    I'm sorry your diagnosis has brought you here, but it's good that you have found this site--there's great support here. I think all of us would admit to struggling with this diagnosis and telling people. It's difficult. Each person has the right to handle it as they wish and what is comfortable for them. I hope you'll let us support you throughout your journey. Please update us when you can.
  • StruTanToot
    StruTanToot Member Posts: 126 Member

    to tell or not..
    Stru,
    I am new here and was recently dx. I am a 45yr old single female, who is normally pretty open, but this was just a little too personal for me to blurt out at work and other places.
    My parents and daughter know that it is anal cancer, but there are some things my co-workers do NOT need to know. I have told everyone that it is a rare form of colon cancer,so that they get the general idea of where the treatment would effect, without having to explain it, justify it (why i feel the need I'm not sure) or here one more time... "isn't that what Farah Faucet just died from" I am stage 3 and the LAST thing I want to think about is someone dying! jeez some people are just insensitive! lol Just thought I would make my 1st post here to you since I understand the desire to be private. Thanks for listening..

    Dear so_confused...thank you
    Dear so_confused...thank you for your post. As you can see, the people on this site are so very supportive and fully understand the need to handle our diagnoses and what to tell people in our own ways.

    For me, it's been a journey of baby steps. At first, I thought more about what I would tell people than what I needed to do to fight this thing. People on this site helped me to realize it's more important to take care of myself than to worry about what other people think.

    I have always been a very private person. That is probably because I'm gay and grew up in a very small and conservative town. I learned to hide my true self very early in life, and those habits are hard to break. Then came HIV and now anal cancer. Very few people know about the HIV and I only told one family member, and I regret telling him.

    You have to do what is right for you. The most important thing right now is you. People love to ask a lot of questions. I think some are being nosy and some just don't know better. I think it's probably natural to ask a person what kind of cancer, but since I have it now, I don't want people asking me.

    As you are probably hearing, people ask what kind of cancer or where, how was it found, what symptoms you had, and so on. As I write this, I'm realizing people probably ask questions out of fear; that is, if you can get cancer, then they can get cancer.

    People can also seem insensitive, but I hope that's not out of maliciousness. For example, my neighbor came over last night and gave me something that is used in CA to treat nausea. She started telling me about a trip she is taking and ended up mentioning an old friend who had died of bone cancer. I could tell she did not mean to go there, but didn't know how to stop once she started. I guess people think of other people they have known with cancer when they hear we have cancer.

    I'm sorry...I seem to have gone through a process here of trying to understand why people ask questions. All I really know to tell you is to think of yourself right now and getting well.

    One strategy I've used that has stopped all the questions is that I'll tell one person about how I told another person and how that other person bombarded me with questions and how uncomfortable it made me. I'll ask, "what does it matter what kind of cancer; it's cancer." Then that person does not ask questions and usually tells me just to tell him or her as much as I want.

    Go easy on yourself. Tell people what you want to tell them and tell them you just don't feel like answering a lot of questions, that you've got so much on your mind and so much to do...and that is true. You and your family are the top priorities.

    You are in my prayers.-
  • Ninjacat
    Ninjacat Member Posts: 5
    mp327 said:

    MARIE777
    I'm so glad to hear that your scan was clear! Congratulations!

    I original hated the "anal"
    I original hated the "anal" part too and them got over it.
    Originally, I was mortified to have my hemorrhoids fixed for the same reason, didn't want the whole worlds knowing about my parts!

    Instead, I found as much humor in it as I could and decided at the very least, I could get over myself and help educated people about it
  • danker
    danker Member Posts: 1,276 Member
    StruTanToot
    Just say rectal cancer. My tumor was at the north end of my rectum. The docs refer to it al colo=rectal. It is no indication of your lifestyle=affects females equally as men. Good luck. With such personal question, ask if they are writing a book==then leave that chaper out!!!LOL
  • 7243
    7243 Member Posts: 249 Member
    How are you?
    I just want to send you well wishes. I hope all is well with you and that you are perhaps post treatment? I understand your expressed fear about telling family and friends, in time you will come to a comfort with this. I want you to know that I'm almost two years post diagnosis and elected not to discuss the details of the cancer with friends and family, except with my husband. I'm sure some of my friends in medicine assume the situation ... however, I never discussed the details. I had so much shame ... overwhelming shame that actually impacted my ability to make good treatment decisions. I had never been diagnosed with HPV and that is the cause of the tumor I had. So I was shocked and I was ashamed. So sad that was the case, however there are many woman and men who deal with HPV ... 80% of all sexually active human beings have HPV. And so I run on ... you're not alone is what I want to say. Hang in there. I hope you provide an update ... and I might see one as I move along the topic list (given I've not been on the site in some time). Take care and love yourself! Its a tough journey ... Did you go with Duke for treatment?
  • StruTanToot
    StruTanToot Member Posts: 126 Member
    7243 said:

    How are you?
    I just want to send you well wishes. I hope all is well with you and that you are perhaps post treatment? I understand your expressed fear about telling family and friends, in time you will come to a comfort with this. I want you to know that I'm almost two years post diagnosis and elected not to discuss the details of the cancer with friends and family, except with my husband. I'm sure some of my friends in medicine assume the situation ... however, I never discussed the details. I had so much shame ... overwhelming shame that actually impacted my ability to make good treatment decisions. I had never been diagnosed with HPV and that is the cause of the tumor I had. So I was shocked and I was ashamed. So sad that was the case, however there are many woman and men who deal with HPV ... 80% of all sexually active human beings have HPV. And so I run on ... you're not alone is what I want to say. Hang in there. I hope you provide an update ... and I might see one as I move along the topic list (given I've not been on the site in some time). Take care and love yourself! Its a tough journey ... Did you go with Duke for treatment?

    Yes...I went to Duke for
    Yes...I went to Duke for treatment. The radiation folks were great, but I can't say that about the chemo side. Very disappointed.

    I've basically tried to quit worrying about what people know or think. I'll tell them what I want, and if they want to continue to ask questions, I ignore them.