It's not suppose to happen to me; I work for the American Cancer Society!!

robin1965
robin1965 Member Posts: 10
edited March 2014 in Breast Cancer #1
Okay, here's the deal. I work on a daily basis with cancer patients, survivors, volunteers that are helping people get well, stay well, finding cures and fighting back. I am in charge of Relay For Life events that fund and aid the American Cancer Society's ground breaking research as well as other researchers. I teach prevention and early detection! I go into schools and talk about healthy eating habits as a measure for prevention! I encourage survivors to fight back against the disease.... So, how the crap did this happen to me!
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Comments

  • Kat11
    Kat11 Member Posts: 1,931 Member
    Welcome As stupid as this
    Welcome As stupid as this may sound, looks like God felt you could do more. Just when you think your plate is full, there is always room for jello. We are here for you.
  • CR1954
    CR1954 Member Posts: 1,390 Member
    Robin......
    I'm very sorry about your dx.

    But hang with us! We are here for each other, and you know how important something like that is.

    Have you started treatment?

    CR
  • Akiss4me
    Akiss4me Member Posts: 2,188
    If it's any consolation....
    at least you knew right where to go :) Welcome Robin, We are here for you as you have been there to help others. Have they made the diagnosis yet or are you waiting on path report? :) Pammy
  • phoenixrising
    phoenixrising Member Posts: 1,508
    Because they don't know what
    Because they don't know what causes it. How do you prevent something you don't know how you caused.? ~80% have no known risk factors. There seems to be an attitude in places that if you got bc then you didn't eat healthy or never exercised, poured all sorts of pollutants in your body upon which you need to detoxify. Just couch potatoes with chips and pop. But that is so not true. Many many women getting this disease were healthy, felt in great shape, had low body fat and were very active. There are many studies speculating on numerous issues but in the end if bc were caused by eating red meat and saturated fat, then all of our ancestors would have gotten bc.

    Still, it doesn't take the shock away does it? Robin, I am so sorry you have to experience this. It sucks, it really does. But you have come to the right place for friendship and support. The women here will guide you through the maze and you will come out the other side a stronger woman indeed, perhaps with a few battle wounds but here nonetheless. We wish you well and hope you let us know how you're doing.

    hugs
    jan
  • robin1965
    robin1965 Member Posts: 10
    CR1954 said:

    Robin......
    I'm very sorry about your dx.

    But hang with us! We are here for each other, and you know how important something like that is.

    Have you started treatment?

    CR

    Thanks for the welcome!
    No,

    Thanks for the welcome!

    No, I have not started treaments. I am scheduled for a double radical mastectomy on the 18th of June, followed by treatments and reconstruction.

    I must confess, I am not actually scared of the surgery, I am more afraid of the side effects! Lymphadema and possible hair loss (if I have to have chemo... will find out after the surgery) scares the willies out of me!
  • robin1965
    robin1965 Member Posts: 10

    Because they don't know what
    Because they don't know what causes it. How do you prevent something you don't know how you caused.? ~80% have no known risk factors. There seems to be an attitude in places that if you got bc then you didn't eat healthy or never exercised, poured all sorts of pollutants in your body upon which you need to detoxify. Just couch potatoes with chips and pop. But that is so not true. Many many women getting this disease were healthy, felt in great shape, had low body fat and were very active. There are many studies speculating on numerous issues but in the end if bc were caused by eating red meat and saturated fat, then all of our ancestors would have gotten bc.

    Still, it doesn't take the shock away does it? Robin, I am so sorry you have to experience this. It sucks, it really does. But you have come to the right place for friendship and support. The women here will guide you through the maze and you will come out the other side a stronger woman indeed, perhaps with a few battle wounds but here nonetheless. We wish you well and hope you let us know how you're doing.

    hugs
    jan

    I love your picture!
    I love your picture! ahahahahahaaaa...

    You are right! Cancer knows no boundries, it gets it claws into young, old, fat, skinny, weak and strong! It's a deadly disease, however, it is beatable!
    ( dont' you just love the grammar!)

    I really need this support group, I feel like I have to be totally positive and A-OK with everything because of what I do for a living.....BUT, I need one place that I can truly air out my dirty laundry!

    Thanks ladies for the constant support... I'm sure I will be blogging everyday or so since I can't seem to sleep!

    Hugs back to ya!
  • CR1954
    CR1954 Member Posts: 1,390 Member
    robin1965 said:

    Thanks for the welcome!
    No,

    Thanks for the welcome!

    No, I have not started treaments. I am scheduled for a double radical mastectomy on the 18th of June, followed by treatments and reconstruction.

    I must confess, I am not actually scared of the surgery, I am more afraid of the side effects! Lymphadema and possible hair loss (if I have to have chemo... will find out after the surgery) scares the willies out of me!

    I have not ........
    I have not experienced lymphedema, although some here have. I know that it is always a possibility, and I try to be careful. But you have to live your life too. So, if it ever happens, then I guess it will be just one more thing to deal with.

    I HAVE lost my hair....every hair I owned. But the good news there, is that it's only a temporary loss. Mine has just come in enough that I recently started going "scarfless".
    Of course, I will be happy when it gets to be a couple of inches longer, but at least my head doesn't "shine" now...lol!

    CR
  • CR1954
    CR1954 Member Posts: 1,390 Member
    robin1965 said:

    I love your picture!
    I love your picture! ahahahahahaaaa...

    You are right! Cancer knows no boundries, it gets it claws into young, old, fat, skinny, weak and strong! It's a deadly disease, however, it is beatable!
    ( dont' you just love the grammar!)

    I really need this support group, I feel like I have to be totally positive and A-OK with everything because of what I do for a living.....BUT, I need one place that I can truly air out my dirty laundry!

    Thanks ladies for the constant support... I'm sure I will be blogging everyday or so since I can't seem to sleep!

    Hugs back to ya!

    Haha........
    We're open 24/7 Robin. Believe me, we all voice our fears and our pain. But we also find comfort in each other and we are so good at cheering each other on!

    I'm very, very glad that you found us!

    CR
  • robin1965
    robin1965 Member Posts: 10
    CR1954 said:

    I have not ........
    I have not experienced lymphedema, although some here have. I know that it is always a possibility, and I try to be careful. But you have to live your life too. So, if it ever happens, then I guess it will be just one more thing to deal with.

    I HAVE lost my hair....every hair I owned. But the good news there, is that it's only a temporary loss. Mine has just come in enough that I recently started going "scarfless".
    Of course, I will be happy when it gets to be a couple of inches longer, but at least my head doesn't "shine" now...lol!

    CR

    Congratulation on going
    Congratulation on going scarfless! When my mom's hair began coming back in, she decided she loved the spiked hair doo's, and she still sports one today! She has been cancer free for 4 years now.

    Do you every just feel overwhelmed with it all! That is the way I feel now.... My dad is going through radiation and chemo right now. My daughter just got married last Saturday and NOW, I have to actually begin to believe.... I HAVE CANCER! Something is inside of me and trying to kill me!
  • robin1965
    robin1965 Member Posts: 10
    CR1954 said:

    Haha........
    We're open 24/7 Robin. Believe me, we all voice our fears and our pain. But we also find comfort in each other and we are so good at cheering each other on!

    I'm very, very glad that you found us!

    CR

    Me too! I just created a
    Me too! I just created a short cut to my desktop!
  • taleena
    taleena Member Posts: 1,612 Member
    I'm so sorry you received
    I'm so sorry you received the dx that you did... the perspective kind of changes when it's you on the other side of that word. I'm glad you knew right were to go... this for now has become almost like (more than almost) a life line for me... I'm glad you knew where to find us.. we're here for you.

    ~T
  • CR1954
    CR1954 Member Posts: 1,390 Member
    robin1965 said:

    Congratulation on going
    Congratulation on going scarfless! When my mom's hair began coming back in, she decided she loved the spiked hair doo's, and she still sports one today! She has been cancer free for 4 years now.

    Do you every just feel overwhelmed with it all! That is the way I feel now.... My dad is going through radiation and chemo right now. My daughter just got married last Saturday and NOW, I have to actually begin to believe.... I HAVE CANCER! Something is inside of me and trying to kill me!

    Well, I was
    I was diagnosed last July, and first it was sheer terror and disbelief. Then, when they laid out all of my treatments, I became overwhelmed in a hurry.
    I had to take not only each treatment, but also each day, one step at a time. If i thought about how long it would actually take to complete everything, I just melted into a puddle. I couldn't do it.
    I had to just keep saying to myself...one step at a time..

    Sometimes acceptance of what is happening is pretty hard to do. But when I finally accepted that yes, I had breast cancer, it made things easier. Then I knew that I HAD to do whatever I could to get rid of it, and that I could not run away from it. I had to have faith in my doctors and in God. But mostly in myself. That I could get through whatever it took, and I could find my way back to "normal".

    There are many wise and lovely people here, each with a different story, but all with one thing in common. And all, ready and willing to help in any way possible.

    You have really had a lot to deal with, so it's no wonder that you are overwhelmed! Hurray for your Mom!! Love the sound of her spikey doo!! I might have to think about doing that.
    I have always thought that I was pretty cool..lol!

    CR
  • Christmas Girl
    Christmas Girl Member Posts: 3,682 Member
    Warm welcome, robin1965!
    So glad you came here, to us. Though I'm sorry for the reason.

    We do not "give ourselves" breast cancer. It does not occur because of a lifestyle choice. As other members have already stated - it can happen to the healthiest. That's me. No family history of ANY type of cancer, at all. All of my pre-surgery and pre-chemo tests determined that my physical condition was that of someone ten years younger than my age (I was 45 at the time of diagnosis). I was medically deemed to be in "unusually extraordinary good health" - yeah, big time oxymoron! So, please - do not blame yourself. Don't look back and wonder: "What did I do?" nor "What didn't I do?"

    We're all here to support and encourage each other. Please visit often, share your feelings, keep us informed of your progress. We travel the journey one step at a time. And, can only move forward.

    Best wishes to you.

    Kind regards, Susan
  • phoenixrising
    phoenixrising Member Posts: 1,508
    robin1965 said:

    I love your picture!
    I love your picture! ahahahahahaaaa...

    You are right! Cancer knows no boundries, it gets it claws into young, old, fat, skinny, weak and strong! It's a deadly disease, however, it is beatable!
    ( dont' you just love the grammar!)

    I really need this support group, I feel like I have to be totally positive and A-OK with everything because of what I do for a living.....BUT, I need one place that I can truly air out my dirty laundry!

    Thanks ladies for the constant support... I'm sure I will be blogging everyday or so since I can't seem to sleep!

    Hugs back to ya!

    I can understand how you
    I can understand how you would want to put on a brave strong front for everyone else esp with what you do for a living but you know, maybe just being yourself and "real" is the best thing to do for yourself, your co-workers and the cancer patients you deal with. Your cancer patients would really feel that you know what they are feeling even though they too have been putting on their "happy" face for the world.

    Feel free to vent or have a pity party whenever you like. (we all have had many :)
    and we look forward to your blogs.

    hugs
    jan
  • robin1965
    robin1965 Member Posts: 10

    Warm welcome, robin1965!
    So glad you came here, to us. Though I'm sorry for the reason.

    We do not "give ourselves" breast cancer. It does not occur because of a lifestyle choice. As other members have already stated - it can happen to the healthiest. That's me. No family history of ANY type of cancer, at all. All of my pre-surgery and pre-chemo tests determined that my physical condition was that of someone ten years younger than my age (I was 45 at the time of diagnosis). I was medically deemed to be in "unusually extraordinary good health" - yeah, big time oxymoron! So, please - do not blame yourself. Don't look back and wonder: "What did I do?" nor "What didn't I do?"

    We're all here to support and encourage each other. Please visit often, share your feelings, keep us informed of your progress. We travel the journey one step at a time. And, can only move forward.

    Best wishes to you.

    Kind regards, Susan

    Thank you ladies! I feel
    Thank you ladies! I feel better already; And,I will take it one day at a time!!

    Can you tell me what to expect after having a double rad mast? I keep thinking about the stupidest things... Like, will I be able to wear regular sleep shirts, or will I have to have button up pj's? giggle, I really have lost it... Here I have the big "C" and I am worrying about pajamas! lol
  • CR1954
    CR1954 Member Posts: 1,390 Member
    robin1965 said:

    Thank you ladies! I feel
    Thank you ladies! I feel better already; And,I will take it one day at a time!!

    Can you tell me what to expect after having a double rad mast? I keep thinking about the stupidest things... Like, will I be able to wear regular sleep shirts, or will I have to have button up pj's? giggle, I really have lost it... Here I have the big "C" and I am worrying about pajamas! lol

    Hi Robin........
    I didn't have double rad mast. Wish I had. But I came home with one and left one there. Which of course makes me lopsided, and now too, I have to worry about the remaining girl.
    But before I went for surgery, I went and bought some sleep shirts and even a couple of short, lightweight nightgowns, that were loose fitting, and that snapped or button at least partway up the front. Just to make it a little easier. I was pretty sure that they would be removing lymph nodes, and knew that I wouldn't have a lot of use in my arm at first. As it turned out, they did remove a lot of lymph nodes, as many contained cancer, so I was glad that I had gotten "easy on/easy off" sleepwear.

    My biggest pain in the backside however, were the drains. I ended up pinning them to the inside of my shirts and sleepwear, so that I didn't constantly have them dangling and banging against eash other. And it kept them from getting tangled in my sleep too.

    Then, right before I started chemo, I bought some cute polo-type shirts that had a few buttons, so that my port could be accessed easily. Although, I saw others at chemo, who just had the line run up from under their shirt to their port.

    CR
  • zahalene
    zahalene Member Posts: 670
    robin1965 said:

    Thank you ladies! I feel
    Thank you ladies! I feel better already; And,I will take it one day at a time!!

    Can you tell me what to expect after having a double rad mast? I keep thinking about the stupidest things... Like, will I be able to wear regular sleep shirts, or will I have to have button up pj's? giggle, I really have lost it... Here I have the big "C" and I am worrying about pajamas! lol

    Robin, I had....
    two radical mastectomies, but not at one time...less than two years apart. Your pic shows you with a baby. I had a 12 year old and a 1 1/2 year old when first dx. Regardless of what family situation you are in just now, my first suggestion would be to get a support system in place. It is good that you are thinking about things like jammies and shirts because those are things that are of a manageable size and they are within your control. But there are going to be things you need help with.
    Whether it is primarily family members, or friends, or a church group, Merry Maids, or a combination of all the above, now is the time to reach out and marshal your troops. When people call or drop buy and say,...'if there's anything I can do'....be ready with a list of your needs and don't hesitate to say, ....'well, in fact'.....
    This is 'doable'...I did it for 15 years (in active cancer treatment to some degree or another), but no one should attempt to do it on their own. Coming here is a great first step. Now, get your 'real life' ducks in a row so that when you are physically and emotionally and spiritually challenged you will be ready with a band of angels (otherwise known as caregivers) to see you through. God bless.
  • sunnygirl
    sunnygirl Member Posts: 57 Member
    robin1965 said:

    Thank you ladies! I feel
    Thank you ladies! I feel better already; And,I will take it one day at a time!!

    Can you tell me what to expect after having a double rad mast? I keep thinking about the stupidest things... Like, will I be able to wear regular sleep shirts, or will I have to have button up pj's? giggle, I really have lost it... Here I have the big "C" and I am worrying about pajamas! lol

    what to wear after mast
    Robin, I had one mast (right side) but used a camisole with pockets to hold the drains, which was a huge help. The hospital supplied my camisoles, but they're available from ACS--in the tlc wear section. I did use things that buttoned easily for a few weeks--pj's and shirts. For showers, I wore a belt that I could hang the drains from. The exercises help with movement--walking the wall, etc.

    Sorry you are joining us, but you're in my prayers. Hugs, Cheryl
  • Bill.S
    Bill.S Member Posts: 177
    Welcome to the club Robin
    I had modified radical mastectomy 5/22/08 after discovering a lump.
    Went for mamogram then off to the surgeon for a lumpectomy----- only it turned out to be cancer so I ended up with a mast.
    Been through TCH chemo--- still doing Herceptin for several more treatments.
    Triple positive so I am on Tamoxifin. (ER+, PR+, HER2 + )
    Breast cancer knows no boundries although it is rare in men.
    Best wishes as you begin your journey.
    Bill S.
  • tgf
    tgf Member Posts: 950 Member
    Bill.S said:

    Welcome to the club Robin
    I had modified radical mastectomy 5/22/08 after discovering a lump.
    Went for mamogram then off to the surgeon for a lumpectomy----- only it turned out to be cancer so I ended up with a mast.
    Been through TCH chemo--- still doing Herceptin for several more treatments.
    Triple positive so I am on Tamoxifin. (ER+, PR+, HER2 + )
    Breast cancer knows no boundries although it is rare in men.
    Best wishes as you begin your journey.
    Bill S.

    Robin ...
    I think the others have just about said it all ... but to get my two cents in ... I cannot tell you what a blessing this discussion board is. One thing brought us all together ... breast cancer. We do not judge each other ... we have respect for everyone and we are here to share our knowledge and experiences. In other words ... we are a very special family. We are from all over the place ... different ages ... different backgrounds ...etc ... but we are all in this together ... and I believe there is strength in numbers. We are all at various stages of diagnosis and treatment ... but no matter what you say or ask ... we are out here to offer encouragement and support.

    As you read posts ... and write your own questions/comments ... you will begin to feel those "virtual hugs" and I can't tell you how much that helps. Just knowing I'm not alone on this journey is so comforting.

    So ... we are very glad you found us ... and welcome to the family.

    hugs.
    teena