DCIS Stage 0

mirj523
mirj523 Member Posts: 22
edited March 2014 in Breast Cancer #1
Hi Diagnosed with DCIS stage 0, I was told by one of the breast surgeons that I was lucky but I do not feel lucky I have a masectomy scheduled for 2/16 with latissmus dorsal flap because the DCIS is in 2 areas of my breast, I am scared to death. Every time I think I can do this I get sick to my stomach. I have two young children that need their mom. How do you get the courage to move ahead.

Comments

  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #2
    one day at a time
    Hi mirj,

    I too was diagnosed with DCIS and I'm in my 30's. I've opted for a bi-lateral masectomy because of strong family history. It is terrifying, especially knowing that there are no guarantees. One thing I'm learning through this whole bc experience is that I can choose to be controlled by fear or I can choose to set my mind on other things and focus on today. And focus on those kids who do indeed need their mom.

    Where does the courage come from? I don't know. Some days I want to bury my head in the sand and just pretend that it will all go away. Other days I feel strong and feel like I can make it. I think the ups and downs are normal and you need to not stifle those feelings but let them come out, because they will come out one way or another, months or even years down the road. Give yourself permission to get angry, to cry, to lament, all of that is OK and perfectly normal and even healthy. Courage can come from reading these boards, from finding others who've been there and who've made it through. Come here often and read and post if you're able. I've found great comfort, encouragement and strength from the women (and men) who are on here.

    Hang in there, mirj. Take it one day at a time, sometimes through all of this, I've had to take one minute at a time because the fear, anxiety and dread can be paralyzing.

    You're not alone. You've an army behind you and we're cheering you on and holding your hand.

    blessings,
    dh
  • GreeneyedGirl
    GreeneyedGirl Member Posts: 1,077
    #3
    Dawne.Hope said:

    one day at a time
    Hi mirj,

    I too was diagnosed with DCIS and I'm in my 30's. I've opted for a bi-lateral masectomy because of strong family history. It is terrifying, especially knowing that there are no guarantees. One thing I'm learning through this whole bc experience is that I can choose to be controlled by fear or I can choose to set my mind on other things and focus on today. And focus on those kids who do indeed need their mom.

    Where does the courage come from? I don't know. Some days I want to bury my head in the sand and just pretend that it will all go away. Other days I feel strong and feel like I can make it. I think the ups and downs are normal and you need to not stifle those feelings but let them come out, because they will come out one way or another, months or even years down the road. Give yourself permission to get angry, to cry, to lament, all of that is OK and perfectly normal and even healthy. Courage can come from reading these boards, from finding others who've been there and who've made it through. Come here often and read and post if you're able. I've found great comfort, encouragement and strength from the women (and men) who are on here.

    Hang in there, mirj. Take it one day at a time, sometimes through all of this, I've had to take one minute at a time because the fear, anxiety and dread can be paralyzing.

    You're not alone. You've an army behind you and we're cheering you on and holding your hand.

    blessings,
    dh

    Hey I'm in that boat!
    ~~the dcis, stage 0 boat. My diagnosis was in 06. Long story short (read my profile for the details, click on my name GreeneyedGirl) I had a unilateral mastectomy (left breast only) with a lattisimus flap for reconstruction. It is very frightening to process all this information, make decisions, and prepare for surgery...and raise a family, work and all. We women are great multi-taskers. Some can and try to do it all, but most of us just take it one day at a time. One suggestion that helped me, was to journal my thoughts and emotions. It helped to put it on paper, and writing just helped me to process it. Also, my faith helped me to stay grounded and focused. I had/have a huge support system too. Keeping positive people around me when I feel unsure, and need encouragement. Talk with your team of doctor(s) depending on treatment and such. Ask lots of questions. Anxiety is an issue sometimes, and there are meds to help you get through that. I will add that I am 7 mo out from reconstruction, and am so happy with my results. I healed up wonderfully. And my lat flap was Oct 08~and 7 weeks later I was out christmas shopping with girlfriends.
    We are here to help you, and answer what questions we can. This is a great support network!
    You will grow to love us~~
    Melanie
  • lucks
    lucks Member Posts: 10
    #4
    Me too!
    I too am diagnosed with DCIS stage 0, my surgeon recommended lumpectomy followed by radiation since there is no family history and yes my surgery is scheduled 2/16. I am just shy of my big 50 birthday, have 3 children, work full-time, husband only working part-time so yes we must pull through for each other. Where is your surgery?
  • lucks
    lucks Member Posts: 10
    #5
    Me too!
    I too am diagnosed with DCIS stage 0, my surgeon recommended lumpectomy followed by radiation since there is no family history and yes my surgery is scheduled 2/16. I am just shy of my big 50 birthday, have 3 children, work full-time, husband only working part-time so yes we must pull through for each other. Where is your surgery?
  • jk1952
    jk1952 Member Posts: 613
    #6
    lucks said:

    Me too!
    I too am diagnosed with DCIS stage 0, my surgeon recommended lumpectomy followed by radiation since there is no family history and yes my surgery is scheduled 2/16. I am just shy of my big 50 birthday, have 3 children, work full-time, husband only working part-time so yes we must pull through for each other. Where is your surgery?

    I'd like to welcome mirj523
    I'd like to welcome mirj523 and lucks, although I'm so sorry that you have to go through this. You've found a great group of people to help you through your journey. You've received a lot of good advice about how to deal with your anxiety, and I'd just like to tell you that there is a great life as a cancer survivor, and you should not fear the post-BC future.

    I was originally diagnosed with DCIS in early 2000. When the lumpectomy was done, a small amount of invasive cancer was found. I had radiation and took Tamoxifen for a period of time. Last year, DCIS was discovered in the same breast, and I chose a bilateral mastectomy and immediate DIEP reconstruction. The path report from the mastectomy showed more than one area of DCIS in that breast, but the other breast was fine. In the years between 2000 and 2009, I had had several tests on the 'good' breast because of things that were seen on a mammogram or MRI, so it was a relief that there had been nothing there.

    Both times, although the treatments were sometimes difficult, I just had to focus on the fact that I was doing everything I could to prevent any further cancer. Eventually, you stop thinking about cancer all the time, and it is a wonderful feeling when you realize that you've gone an hour, a few hours, a day, without thinking about it.

    Joyce
  • mirj523
    mirj523 Member Posts: 22
    #7
    lucks said:

    Me too!
    I too am diagnosed with DCIS stage 0, my surgeon recommended lumpectomy followed by radiation since there is no family history and yes my surgery is scheduled 2/16. I am just shy of my big 50 birthday, have 3 children, work full-time, husband only working part-time so yes we must pull through for each other. Where is your surgery?

    DCIS Stage 0
    Thank you guys so much for replying, it is difficult for people who are not in the same situation to truly understand what I am feeling, although everyone has been great I truly appreciate hearing from all of you, I am having my surgery in Hackensack NJ. I don't know how long I will be in the hospital either one or two nights. I am healthy other than the cancer thing and just went through my surgery clearance exam on Friday. I still can't help but to be terrified at what is ahead of me. I am 45 and have two 5 year olds that keep me very busy and a very supportive husband, I also work full time
  • lucks
    lucks Member Posts: 10
    #8
    mirj523 said:

    DCIS Stage 0
    Thank you guys so much for replying, it is difficult for people who are not in the same situation to truly understand what I am feeling, although everyone has been great I truly appreciate hearing from all of you, I am having my surgery in Hackensack NJ. I don't know how long I will be in the hospital either one or two nights. I am healthy other than the cancer thing and just went through my surgery clearance exam on Friday. I still can't help but to be terrified at what is ahead of me. I am 45 and have two 5 year olds that keep me very busy and a very supportive husband, I also work full time

    Good Luck!
    Mirj, I just want to wish you the best of luck. My surgery is scheduled at Sloan-Kettering and anticipate being back to work after 2 weeks followed by radiation at a local facility in NJ & then I can put this all behind me. I am grateful for all the support from family, friends, co-workers. Hang in there, mirj.
  • jbug
    jbug Member Posts: 285
    #9
    lucks said:

    Me too!
    I too am diagnosed with DCIS stage 0, my surgeon recommended lumpectomy followed by radiation since there is no family history and yes my surgery is scheduled 2/16. I am just shy of my big 50 birthday, have 3 children, work full-time, husband only working part-time so yes we must pull through for each other. Where is your surgery?

    Welcome to you both!
    Just wanted to welcome you! The early stage is so frightening, we've all been there. As others have said, there are so many women here to support you as you begin this unwanted journey. Take your time, ask lots of questions, and write everything down.

    I am 45, had IBC and DCIS, lumpectomy, rads and have started tamoxifen. I had 2 surgeries, 1 lumpectomy and that was followed by the sentinal node biopsy (because my original lumpectomy was not for cancer but "abnormal tissue", IBC found in the sample). These are usually done at the same time. Overall, I didn't have too much pain...I had the procedures done on Thurs and was back at work on Monday. The radiation affects everyone very differently...i had tremendous fatigue and was on half days (thank God for my job and boss!). I didn't expect that at all. You'll read that lots of women didn't have any probs w/the rads...just know you have to go each day.

    For now, take it one day at a time.

    God Bless....
    Julie
  • mirj523
    mirj523 Member Posts: 22
    #10
    GreeneyedGirl said:

    Hey I'm in that boat!
    ~~the dcis, stage 0 boat. My diagnosis was in 06. Long story short (read my profile for the details, click on my name GreeneyedGirl) I had a unilateral mastectomy (left breast only) with a lattisimus flap for reconstruction. It is very frightening to process all this information, make decisions, and prepare for surgery...and raise a family, work and all. We women are great multi-taskers. Some can and try to do it all, but most of us just take it one day at a time. One suggestion that helped me, was to journal my thoughts and emotions. It helped to put it on paper, and writing just helped me to process it. Also, my faith helped me to stay grounded and focused. I had/have a huge support system too. Keeping positive people around me when I feel unsure, and need encouragement. Talk with your team of doctor(s) depending on treatment and such. Ask lots of questions. Anxiety is an issue sometimes, and there are meds to help you get through that. I will add that I am 7 mo out from reconstruction, and am so happy with my results. I healed up wonderfully. And my lat flap was Oct 08~and 7 weeks later I was out christmas shopping with girlfriends.
    We are here to help you, and answer what questions we can. This is a great support network!
    You will grow to love us~~
    Melanie

    DCIS Stage 0
    Melanie For how long did you need help doing the everyday normal things? I heard that having the lattisimus flap surgery makes the recovery longer and it takes a while to carry things or lift your arm. Will I be able to pick the kids up at the bus stop if they carry their backpacks?
  • phillis313
    phillis313 Member Posts: 16
    #11
    jbug said:

    Welcome to you both!
    Just wanted to welcome you! The early stage is so frightening, we've all been there. As others have said, there are so many women here to support you as you begin this unwanted journey. Take your time, ask lots of questions, and write everything down.

    I am 45, had IBC and DCIS, lumpectomy, rads and have started tamoxifen. I had 2 surgeries, 1 lumpectomy and that was followed by the sentinal node biopsy (because my original lumpectomy was not for cancer but "abnormal tissue", IBC found in the sample). These are usually done at the same time. Overall, I didn't have too much pain...I had the procedures done on Thurs and was back at work on Monday. The radiation affects everyone very differently...i had tremendous fatigue and was on half days (thank God for my job and boss!). I didn't expect that at all. You'll read that lots of women didn't have any probs w/the rads...just know you have to go each day.

    For now, take it one day at a time.

    God Bless....
    Julie

    DCIS
    Such great advice from everyone! We are here for you! As you see there are so many similarities, yet you also see how it is somewhat different and unique for each person. I too had DCIS with a lumpectomy and rads in October 08. Having fun with tamoxifen now, but hey, things could always be worse.

    I really loved two books freinds gave to me that have helped me. One is called, "Praying Through Cancer...Set Your Heart Free from Fear." It's a 90-day devotional for women, but I still use it. It's by Susan Sorensen and Laura Geist. Another one I like is "What Cancer Cannot Do". Most any bookstore or Christian bookstore would probably have it.

    Thoughts and prayers are with you all!
  • Different Ballgame
    Different Ballgame Member Posts: 868
    #12
    You Are Lucky
    I am much older than you and was diagnosed with 0 Stage DCIS when I was 65 years old. it makes no difference how old you are when you are told that you have cancer. You are shocked. I had 2 surgical biopsies wherein my margins were not clear. To make a long story short, I was extremely aggressive and ended up with a contralateral mastectomy, my choice, (both breasts - the cancerous breast and the good breasts were removed). I had breast reconstruction - silicone - and am very happy with the results.

    You can't have a better stage than 0. 0 Stage is precancer. DCIS - means that your cancer is self-contained - it has not left the cell - another plus. It is amazing, though, that DCIS can be scattered throughout the breast. I am still trying to figure that one out.

    I don't know what you fear. There is very little pain with a mastectomy if pain is what you fear. Every person's body is different. I felt heaviness after my surgery but not pain. I also made sure that I took those pain killers - they worked beautifully.

    It takes time to adjust to the fact that you have cancer and I'm guessing that things are moving quickly for you and you have not had sufficient time to totally digest what is happening to you.

    Journaling - writing down your thoughts and feelings - is an excellent source for healing - mentally.

    Since you are very young, it is extremely important that you keep a diary of all your tests, procedures, doctor visits, etc., etc. Document everything relating to your health in a book. If you document on the computer, make sure you print a hard copy - insurance in case you ever get a virus and your computer crashes. Then you will have a hard copy of all your information.

    Most important, buy Dr. Susan Love's Breast Book, 4th Edition. This book is an absolute must have because it is truly a bible for breast cancer. Refer to it often.

    Finally, never look backwards. Look forward to the days of raising your family and all the joys you are yet to experience in life. Believe me, there are many wonderful years ahead for you.

    Lots of Hugs and Lots of Love,
    Janelle
  • sandycr
    sandycr Member Posts: 16
    #13
    DCIS Stage 0-too
    I was diagnosed in July and had a bilateral mastectomy in October. I am now in the reconstruction phase. I had the tissue expanders and two weeks ago had the exchange~expanders to silicone. I consider myself lucky. After meeting others with BC and reading posts, I consider myself very lucky. The BC was found early enough that I did not require radiation, chemo or tamoxifin. Each day that I wake up I feel lucky that I am able to get out of bed, care for myself, care for my children. I know you are very scared right now but keep in mind all the things you ARE able to do, don't let the BC beast get the best of you. Hold your head up high and move forward.

    Your new friend who really does know how you feel,
    Sandy
    : )
  • mirj523
    mirj523 Member Posts: 22
    #14
    Different Ballgame said:

    You Are Lucky
    I am much older than you and was diagnosed with 0 Stage DCIS when I was 65 years old. it makes no difference how old you are when you are told that you have cancer. You are shocked. I had 2 surgical biopsies wherein my margins were not clear. To make a long story short, I was extremely aggressive and ended up with a contralateral mastectomy, my choice, (both breasts - the cancerous breast and the good breasts were removed). I had breast reconstruction - silicone - and am very happy with the results.

    You can't have a better stage than 0. 0 Stage is precancer. DCIS - means that your cancer is self-contained - it has not left the cell - another plus. It is amazing, though, that DCIS can be scattered throughout the breast. I am still trying to figure that one out.

    I don't know what you fear. There is very little pain with a mastectomy if pain is what you fear. Every person's body is different. I felt heaviness after my surgery but not pain. I also made sure that I took those pain killers - they worked beautifully.

    It takes time to adjust to the fact that you have cancer and I'm guessing that things are moving quickly for you and you have not had sufficient time to totally digest what is happening to you.

    Journaling - writing down your thoughts and feelings - is an excellent source for healing - mentally.

    Since you are very young, it is extremely important that you keep a diary of all your tests, procedures, doctor visits, etc., etc. Document everything relating to your health in a book. If you document on the computer, make sure you print a hard copy - insurance in case you ever get a virus and your computer crashes. Then you will have a hard copy of all your information.

    Most important, buy Dr. Susan Love's Breast Book, 4th Edition. This book is an absolute must have because it is truly a bible for breast cancer. Refer to it often.

    Finally, never look backwards. Look forward to the days of raising your family and all the joys you are yet to experience in life. Believe me, there are many wonderful years ahead for you.

    Lots of Hugs and Lots of Love,
    Janelle

    DCIS STAGE 0
    Janelle and all my new friends, thank you all for your wise comments, I do truly feel better. I just need to get through the next two weeks and surgery. I guess in a way I am lucky that they found my cancer so early. I am curently reading two books that my sister sent to me "Cancer is a ****" by Gail Konop Baker and "Crazy Sexy Cancer Tips" by Kris Carr. Lots of hugs and love back at you
  • LadyParvati
    LadyParvati Member Posts: 328
    #15
    mirj523 said:

    DCIS STAGE 0
    Janelle and all my new friends, thank you all for your wise comments, I do truly feel better. I just need to get through the next two weeks and surgery. I guess in a way I am lucky that they found my cancer so early. I am curently reading two books that my sister sent to me "Cancer is a ****" by Gail Konop Baker and "Crazy Sexy Cancer Tips" by Kris Carr. Lots of hugs and love back at you

    It's a lot to take in all at once!
    The information overload can be amazing. The two books your sister sent are good, uplifting books that will help you feel more positive about the future.

    The book that Janelle recommended is an information bible, indeed--she gave you an excellent recommendation! It will help you understand all the tests and treatment options in relation to your type of cancer, which the two books your sister sent can't really do. Read through the sections about the tests you've been given and the options your docs are recommending and it will help you feel even better!

    Hang in there!

    Sandy
  • GreeneyedGirl
    GreeneyedGirl Member Posts: 1,077
    #16
    sandycr said:

    DCIS Stage 0-too
    I was diagnosed in July and had a bilateral mastectomy in October. I am now in the reconstruction phase. I had the tissue expanders and two weeks ago had the exchange~expanders to silicone. I consider myself lucky. After meeting others with BC and reading posts, I consider myself very lucky. The BC was found early enough that I did not require radiation, chemo or tamoxifin. Each day that I wake up I feel lucky that I am able to get out of bed, care for myself, care for my children. I know you are very scared right now but keep in mind all the things you ARE able to do, don't let the BC beast get the best of you. Hold your head up high and move forward.

    Your new friend who really does know how you feel,
    Sandy
    : )

    Sorry I am days behind~~
    Mirj523 I apologize for not staying on top of this post~
    How long for getting back to a routine, depends on your doctors advice. As long as I was on pain meds I could not drive. And you want to heal with out a possibility of an accident happening and doing damage to your new surgery. My doc had me up to eat, go to the bathroom and walk around only a little for the first 2 weeks. Then, just taking it really easy at home for the next 2-4 weeks. I didn't work. Have your kids help you as much as 5 year olds can. And recruit any help available to you. I have a huge support system through my church. You can prepare meals and freeze them. I couldn't even push a vacuum (per doctors orders~rats!) for 4-6 weeks. He wanted me to heal up good! I obeyed, and did fabulous. Your body will also tell you what it is willing to do, and won't. Set backs would not be fun. Eventually you do return to normal duties, and I just eased back in. The dust can collect, the mirrors can wait. You learn what is most important and what can wait.
    M
  • retsfcsc
    retsfcsc Member Posts: 3
    #17
    DCIS stage 0
    Hello, my name is Sara and I too have been diagnosed with DCIS Stage 0. It was Dec 15, 2009. I'm sorry for what you have to go through. My cancer is in my right breast. I had a lumpectomy and two lymph nodes removed. The cancer had not spread. I started radiation on Feb 11, 2010 and I will be taking the tamoxifen pill. I hope everything goes well for you. My daughter is 31 yrs old an only child and I wondered the same thing when I found out I had cancer. I did not know how to tell her. She lives out of town. I told her on the phone and she said ok mom what do we do now. I know it's not the same because your children are young, but still no mother wants to leave her child no matter how old they are. I will be praying for you. Prayer helps.
  • Datsy
    Datsy Member Posts: 31
    #18
    sandycr said:

    DCIS Stage 0-too
    I was diagnosed in July and had a bilateral mastectomy in October. I am now in the reconstruction phase. I had the tissue expanders and two weeks ago had the exchange~expanders to silicone. I consider myself lucky. After meeting others with BC and reading posts, I consider myself very lucky. The BC was found early enough that I did not require radiation, chemo or tamoxifin. Each day that I wake up I feel lucky that I am able to get out of bed, care for myself, care for my children. I know you are very scared right now but keep in mind all the things you ARE able to do, don't let the BC beast get the best of you. Hold your head up high and move forward.

    Your new friend who really does know how you feel,
    Sandy
    : )

    DCIS Stage 0

    I was diagnosed with DCIS, Stage 0, on April 15, 2015. I chose to have a double mastectomy on Ma5, 2015.  I have tissue expanders that will hopfully come out in about 6-7 weeks.  My oncologists said I didn't require radiation, chemo or tamoxifin.  That is hard to believe.  Has anyone else had that diagnosis and do you always worry it will come back?

  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #19
    Datsy said:

    DCIS Stage 0

    I was diagnosed with DCIS, Stage 0, on April 15, 2015. I chose to have a double mastectomy on Ma5, 2015.  I have tissue expanders that will hopfully come out in about 6-7 weeks.  My oncologists said I didn't require radiation, chemo or tamoxifin.  That is hard to believe.  Has anyone else had that diagnosis and do you always worry it will come back?

    Chemo for ONLY DCIS is NOT

    Chemo for ONLY DCIS is NOT standard treatment. Chemo is a systemic treatment and DCIS is only found in the milk ducts, so no need for a systemic treatment unless one would have a microinvasion or a stage 1 or higher bc.

    Since DCIS is ONLY in the milk ducts, I was told that by having the double mastectomy, I was cancer free, that I wouldn't need rads because my margins were clean and that I would NOT need Tamoxifen. The head of the oncology department told me that since the milk ducts and cancer were gone, giving me Tamoxifen would be overkill.

    I don't worry that it will come back.

    There is a great website called breastcancer.org that has a section for just those with DCIS. I highly suggest you join. There is some awesome information pinned to the top of the discussion thread for DCIS called A Layperson's Guide to DCIS that I think you should read.

    https://community.breastcancer.org/forum/68

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