DCIS

rsnewman41
rsnewman41 Member Posts: 4
edited March 2014 in Breast Cancer #1
Hi, my name is Robin and I'm new here. I had my mastectomy a few months ago and have been looking for someplace to get info and advise. I had DCIS left breast with mastectomy being my only choice. No chemo or rads and I'm ER-, PR- so no hormone therapy. I never found a support group that fit for me and maybe that was my fault but when I sit and listen to what other women have gone through with the chemo, hair falling out, nausea, etc. I just don't feel like I fit in. I'm not even sure I have the right to call myself a breast cancer survivor since I didn't have to go through any of it. When I have looked into programs that I've heard about I usually am told they are for women going through chemo or rads so I'm still looking. I saw an oncologist that said DCIS isn't really cancer! Than can someone please explain to me why I had to loose my breast? Is there anything for those of us with DCIS?
I feel so awful feeling like this but I can't tell my friends or family-they think I'm so strong and over it. This is my fault because when I had my surgery they were so worried so I just acted like it was fine, I was fine no problems and I went back to work after 3 weeks so on the outside I have to be ok. On the inside I'm a mess! I'm scared of the cancer coming back and having to do this again, I'm still having pain and I really feel UGLY! Although my husband says I'm beautiful and he didn't marry me for my breasts I still feel like an alien.

Well at least I have been able to vent here and hopefully no one will think I'm a whiner (even though I am) I do feel a little better. Thanks for letting me vent.
«13

Comments

  • chickad52
    chickad52 Member Posts: 497
    #2
    rsnewman
    Hi and welcome to the site no one wants to be in! Please don't feel you are whining! Not at all! Cancer is cancer no matter what form it is. I have stage 2a, had chemo, and a left mastectomy on Nov. 23. Next will be rads. Reconstruction and a right mastectomy will follow later. It sounds like you have a very supporting husband and family, but I feel you never get over how you feel. I think I will live with fear all my life. I was told it is normal. Please don't feel ugly! You are a stong beautiful woman. And thank God we are getting through this!! You will find alot of wonderful people on this site who are so full of information and everyone has their own story that they may share. Good Luck to you and lots of Hugs, Diane
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #3
    Dear rsnewman,
    I too have
    Dear rsnewman,

    I too have had DCIS. Some say it's 'pre-cancer' but cancer is cancer and you're right, you lost your breast so it had to be something that was considered pretty serious. I was diagnosed in August and have delayed on making a decision on whether I want to do radiation or go ahead and have a double prophylatic masectomy.

    I think what you're going through is normal. We're strong because we have to be at first to get through it and once everything has happened, there is often a delayed emotional response to what we've been through. Be it Post-Traumatic Stress Disorder ... or whatever ... a lot of women on here have experienced what you're experiencing.

    Don't believe it when it creeps in to your mind that you're no less a survivor because you haven't had chemo ... you've had your breast removed and that is BIG DEAL!!!! You have every right to feel sad, to mourn, to lament, to scream, whatever it takes. It's a loss and it takes time to physically and emotionally heal from it.

    Do find your local of chapter of the American Cancer Society and try to find a support group. And you'll find help and encouragement from the women (and men) on here too.

    Hang in there and take care!
    dh
  • Dot53
    Dot53 Member Posts: 239 Member
    #4
    Hi Robin
    I too have DCIS and had a double mastectomy just a few weeks ago. I never heard that this kind of cancer was considered pre-cancerous or not even cancer... what the heck? I am going to see my oncologist tomorrow and am going to ask him about that..

    I feel just as you do.. ugly.. probably uglier cause I lost both. I said as much to my husband and he flipped out and said the same thing your husband did. It is a hard thing to accept but I have to think that I did the right thing b/c I can't go back and change it.

    You found the right place to vent... there are so many wonderful women on this site at all times of the day that are more than happy to listen and respond.

    Best wishes,
    Dot
  • rsnewman41
    rsnewman41 Member Posts: 4
    #5
    Dot53 said:

    Hi Robin
    I too have DCIS and had a double mastectomy just a few weeks ago. I never heard that this kind of cancer was considered pre-cancerous or not even cancer... what the heck? I am going to see my oncologist tomorrow and am going to ask him about that..

    I feel just as you do.. ugly.. probably uglier cause I lost both. I said as much to my husband and he flipped out and said the same thing your husband did. It is a hard thing to accept but I have to think that I did the right thing b/c I can't go back and change it.

    You found the right place to vent... there are so many wonderful women on this site at all times of the day that are more than happy to listen and respond.

    Best wishes,
    Dot

    thanks for all of the kind
    thanks for all of the kind comments. I try not to have a pity party because it really doesn't solve anything but some days I can't help it. I'm going to start reconstruction on jan. 20th so I know there are some bad days ahead. I keep telling myself I made it through the mastectomy and I'll make it through this too but I keep hearing about all of the pain that comes with the fills to the expander. I wanted to have both breasts removed at the time of my first surgery but my BS said no, he wouldn't do it. I have no HX of cancer in my family and he (as well as 3 other surgeons) wouldn't do it. I have found a very good PS than my friend used for her reconstruction so I'm confident that in the end I'll look pretty good but it's just getting there! I wish it was over!

    thanks!
    Robin
  • sparky72156
    sparky72156 Member Posts: 61
    #6
    I know exactly how you feel,
    I know exactly how you feel, Robin. I've been told that my DCIS is a pre-cancer and that surgery will take care of it (provided that the final pathology remains DCIS). So I, too, have had that "survivor's guilt" of not really being a survivor in the true sense of the word. It feels to me as though, if I get out of this with surgery only, I haven't endured what other women have, so I can't really call myself a survivor. On the other hand, the stress that I am under right now.....trying to make the decision to have a bilateral mastectomy for peace of mind, or risk keeping my left breast with all the fears that go along with it, is pretty tough, too. I lost my husband four years ago to brain cancer, so I don't have someone who will say to me "I love you no matter what your breasts look like", so I am trying to factor a future dating life into this, too. My breasts have never been a selling point for me.........they are small and the reconstruction may make them smaller.....but let's face it.......men like boobs. Maybe it's because they ARE boobs..who knows? But I have to say that I think that this stress level has to count for something. So when I do the Susan G. Komen 5K next year, I will probably put myself in the survivor catagory, if for the stress of it alone.
  • lanie940
    lanie940 Member Posts: 490 Member
    #7
    My best friend I grew up
    My best friend I grew up with must of had the exact same as you, her's was also DCIS, she had immediate reconstruction, TRAM flap. this was 11 years ago. She is doing fine today. She told me she never had to have RADS or Chemo. So, it must be similar to you. I hope this gives you some encouragement.
  • sparky72156
    sparky72156 Member Posts: 61
    #8
    lanie940 said:

    My best friend I grew up
    My best friend I grew up with must of had the exact same as you, her's was also DCIS, she had immediate reconstruction, TRAM flap. this was 11 years ago. She is doing fine today. She told me she never had to have RADS or Chemo. So, it must be similar to you. I hope this gives you some encouragement.

    Lanie.........did she have a
    Lanie.........did she have a bilateral mastectomy or just on the side that the DCIS was in?
  • jk1952
    jk1952 Member Posts: 613
    #9
    sparky72156 said:

    Lanie.........did she have a
    Lanie.........did she have a bilateral mastectomy or just on the side that the DCIS was in?

    I had a small amount of
    I had a small amount of invasive cancer in 2000 and had a lumpectomy and radiation, and this year, DCIS was discovered in the same breast. A mastectomy was my only treatment option and I decided to have a bilateral mastectomy with immediate DIEP reconstruction, which was done in April. In my case, the lumpectomy and radiation (for the invasive cancer) were a walk in the park compared to the mastectomy and reconstruction (for the DCIS). I believe that anyone who has lost a breast or had a lumpectomy and radiation because of DCIS should be considered a survivor.

    I, too, have felt that I 'wasn't worthy' because I had never had chemo. (I have also thanked God that I never had chemo). And, both times that cancer was found, it was found very early. That doesn't make it any less traumatic or emotional, so please don't be afraid to vent when you need. It is a roller coaster ride, but there is a good life after cancer and treatments.

    Joyce
  • lanie940
    lanie940 Member Posts: 490 Member
    #10
    sparky72156 said:

    Lanie.........did she have a
    Lanie.........did she have a bilateral mastectomy or just on the side that the DCIS was in?

    Just her left breast was
    Just her left breast was removed.
  • crselby
    crselby Member Posts: 441 Member
    #11
    DCIS: pre-cancer, not cancer, can become cancer, what is it?
    I too had DCIS, not the 'real' cancer. And as people here have said, the fear of what's ahead when you get the diagnosis is just as high as everyone's. By the time I got the dx, I had done a good bit of research and knew that DCIS can have its good points and its bad ones. From all the tests and images done, it seems I had it only in one spot and, by taking a HUGE excision (10cm), the surgeon got clean margins the first time. My radiation was quick (brachytherapy) but grueling. I still have pain where the lumpectomy was done and in the scar. There are 90 red spots on my now-much-smaller right breast where the catheters went through. I have chest muscle and arm stiffness and hard spots all around in that breast. I wonder if any of it is cancer. When my gut hurts, I wonder if it is cancer. When my bones ache for more than a day, I wonder if it is cancer. I question every thing I eat, "will this contribute to cancer growth?" I have my first post-treatment MRI later this month and a diagnostic mammogram next month, which I fully expect to tell me there is nothing but the usual calcifications and fibrocystic disease in my breasts and no sign of cancer. But...When I get a sore muscle or a headache, or, as the other day, chest pain, I wonder if I have blood clots from the ongoing hormone therapy. My life is not the same. However.... I have had an easy route compared to many.

    Their stories fill me with courage and hope. I wish I could give back the same. What an amazing journey life is.
  • Skeezie
    Skeezie Member Posts: 586 Member
    #12
    Robin YOU ARE A SURVIVOR!
    Having chemo or rads doesn't make you any more of survivor. Having DCIS meaning your cancer has not become invasive is the news we all wanted to hear. That is wonderful but you are still a survivor!

    But I know how you feel, I only had to have 4 chemo cycles (I'm triple negative so no hormone therapy for me) and when I read what so many on this discussion board have gone thru I have felt practically the same as you.

    But your fears are the same as everyone else's, you had a mastecomy, if that doesn't qualify you has a survivor I dont know what does.

    I had a single, simple mastecomy and no reconstruction, I love my prosthetic boob, it looks an feels real. I have never thoght I looked ugly ('cept for bald head) so don't beat yourelf up. You have a great husband, don't be afraid to cry in front of him or your friends and let them know how scared you are. They will support you.

    Good luck on you reconstruction and you are beautiful now and will be beautiful afterwards.
    You go girl!

    Hugs, Judy :-)
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #13
    me too
    I was diagnosed with DCIS and heard the words "you have cancer". I understand how you feel but cancer is cancer and as others have said, you lost a breast--they don't do that for possibilities. FWIW the director of the Komen center in Las Vegas NV is a DCIS survivor. So, yes, you are a survivor.

    Maureen
  • teresa41
    teresa41 Member Posts: 471
    #14
    EveningStar2 said:

    me too
    I was diagnosed with DCIS and heard the words "you have cancer". I understand how you feel but cancer is cancer and as others have said, you lost a breast--they don't do that for possibilities. FWIW the director of the Komen center in Las Vegas NV is a DCIS survivor. So, yes, you are a survivor.

    Maureen

    dcis
    i also was diagnosed in april with dcis the surgeon told me i had cancer! i had a lumpectomy 4 rounds of chemo and 33 radiation treatments and now take tamoxifen, i think anything that happens as a result of breastcancer is not easy we all are survivors!

    best of luck to you...


    teresa
  • rsnewman41
    rsnewman41 Member Posts: 4
    #15
    teresa41 said:

    dcis
    i also was diagnosed in april with dcis the surgeon told me i had cancer! i had a lumpectomy 4 rounds of chemo and 33 radiation treatments and now take tamoxifen, i think anything that happens as a result of breastcancer is not easy we all are survivors!

    best of luck to you...


    teresa

    teresa-
    thanks for the reply
    teresa-
    thanks for the reply but I have a question. If DCIS was the DX why did you have to take chemo and rads. I was told DCIS DX never has chemo as treatment just sometimes rads if a lumpectomy is done. I have several large cysts in rt. breast plus calcifications but they look benign to the dr so he and the oncologist didn't recommend chemo. It's not that I want chemo but I just want to make sure it really is gone. The time before my mastectomy was such a dark time and I really don't want to go through it again if I can prevent it. I'm very confused with all of this.
  • helen e
    helen e Member Posts: 223
    #16
    Robin
    I too have gone through the same thing, only I am ER+ and on Tamoxifen. I had invasive ductal carcinoma that didn't spread out of my breast. When they did the lumpectomy they found that it was more aggressive than they thought and was in the ducts, too. I had my mast. for DCIS and am now cancer free(according to my onco.) I had a sentinel node biopsy during my lump. and they were clear too.

    Not long ago I posted a topic called cancer fraud because I feel just as you do. I don't have to have chemo or rads. and just had my mastec. and tram flap reconst. 3 weeks ago. My surgeon did an incredible job and all the nurses said it was his best work. My sisters and husband all can't believe how well I look, even still have the scar from my lumpectomy. I know how well I look but I can't stand to look at myself. I know that it's all in my mind that eventually (I hope) I will come to accept this change to my body. My husband says that he married me, not my breast and has been just wonderful about it all.

    I hope you are able to find peace and know that we all all here for you whenever you need us.
  • cjhw
    cjhw Member Posts: 3
    #17
    Skeezie said:

    Robin YOU ARE A SURVIVOR!
    Having chemo or rads doesn't make you any more of survivor. Having DCIS meaning your cancer has not become invasive is the news we all wanted to hear. That is wonderful but you are still a survivor!

    But I know how you feel, I only had to have 4 chemo cycles (I'm triple negative so no hormone therapy for me) and when I read what so many on this discussion board have gone thru I have felt practically the same as you.

    But your fears are the same as everyone else's, you had a mastecomy, if that doesn't qualify you has a survivor I dont know what does.

    I had a single, simple mastecomy and no reconstruction, I love my prosthetic boob, it looks an feels real. I have never thoght I looked ugly ('cept for bald head) so don't beat yourelf up. You have a great husband, don't be afraid to cry in front of him or your friends and let them know how scared you are. They will support you.

    Good luck on you reconstruction and you are beautiful now and will be beautiful afterwards.
    You go girl!

    Hugs, Judy :-)

    Triple negative
    Judy,
    I see you have been diagnosed as triple negative. I was just diagnosed last week. I see my oncologist tommorrow. How did you find an oncologist and how did you decide what was the right course? Do they make any adjustments in the chemo since tn?? I am still dealing with the fact that I am going to loose my hair which I know is the least of my worries. I love your cat picture!! Thanks for any and all info. I just found this site today and it is unbelieveable...when I read other people are having the same thoughts and fears...it lets me know it's ok and this too will pass!!
    CJ
  • terri805
    terri805 Member Posts: 122
    #18
    helen e said:

    Robin
    I too have gone through the same thing, only I am ER+ and on Tamoxifen. I had invasive ductal carcinoma that didn't spread out of my breast. When they did the lumpectomy they found that it was more aggressive than they thought and was in the ducts, too. I had my mast. for DCIS and am now cancer free(according to my onco.) I had a sentinel node biopsy during my lump. and they were clear too.

    Not long ago I posted a topic called cancer fraud because I feel just as you do. I don't have to have chemo or rads. and just had my mastec. and tram flap reconst. 3 weeks ago. My surgeon did an incredible job and all the nurses said it was his best work. My sisters and husband all can't believe how well I look, even still have the scar from my lumpectomy. I know how well I look but I can't stand to look at myself. I know that it's all in my mind that eventually (I hope) I will come to accept this change to my body. My husband says that he married me, not my breast and has been just wonderful about it all.

    I hope you are able to find peace and know that we all all here for you whenever you need us.

    I am confused :/
    I thought DCIS was cancer cells that are in the milk ducts and that they have not spread outside of the ducts. So I am just curious as to why one would need a mastectomy and chemo?
    I was dx with DCIS on Dec 11th and had a lumpectomy on Dec 17th. The margins were clear but close on one side so the surgeon wants to go back in and take more out to have a wider margin. Mine was stage 0 grade 2. Quite a large area was removed 10x8x4 cm. He said I would most probably have radiation and Amiridex(sp?) for 5yrs. I see the oncologists tomorrow afternoon to find out what my treatment plan will be. I will probably have my second surgery the week of Jan 20th. Can someone please explain in what circumstances one would need a mastectomy and or chemo when dx with DCIS? Just when I think I understand something then I read something different.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #19
    terri805 said:

    I am confused :/
    I thought DCIS was cancer cells that are in the milk ducts and that they have not spread outside of the ducts. So I am just curious as to why one would need a mastectomy and chemo?
    I was dx with DCIS on Dec 11th and had a lumpectomy on Dec 17th. The margins were clear but close on one side so the surgeon wants to go back in and take more out to have a wider margin. Mine was stage 0 grade 2. Quite a large area was removed 10x8x4 cm. He said I would most probably have radiation and Amiridex(sp?) for 5yrs. I see the oncologists tomorrow afternoon to find out what my treatment plan will be. I will probably have my second surgery the week of Jan 20th. Can someone please explain in what circumstances one would need a mastectomy and or chemo when dx with DCIS? Just when I think I understand something then I read something different.

    I don't know for sure Terri,
    I don't know for sure Terri, but, sometimes the plastic surgeons have to take out so much breast tissue to get a clean margin that you wouldn't have much breast left. In this case, many opt for the mastectomy as then they can have reconstruction. That is just one reason that I know of why some have mastectomy's instead of a lumpectomy. Also, some women do not want to have radiation treatments, and, you almost always have to with a lumpectomy. I was told that I had DCIS until I had my lumpectomy. The path report came back with DCIS and IDCS ( invasive ). But, my tumor was really small and my plastic surgeon got clear margins the first time.

    Sue :)
  • terri805
    terri805 Member Posts: 122
    #20
    Ritzy said:

    I don't know for sure Terri,
    I don't know for sure Terri, but, sometimes the plastic surgeons have to take out so much breast tissue to get a clean margin that you wouldn't have much breast left. In this case, many opt for the mastectomy as then they can have reconstruction. That is just one reason that I know of why some have mastectomy's instead of a lumpectomy. Also, some women do not want to have radiation treatments, and, you almost always have to with a lumpectomy. I was told that I had DCIS until I had my lumpectomy. The path report came back with DCIS and IDCS ( invasive ). But, my tumor was really small and my plastic surgeon got clear margins the first time.

    Sue :)

    Sue
    Did you have to have radiation treatments after your lumpectomy? Is there something really bad about radiation treatments that I should know about before I do it? It is all scary to me and I want to do the best thing for myself.
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #21
    terri805 said:

    Sue
    Did you have to have radiation treatments after your lumpectomy? Is there something really bad about radiation treatments that I should know about before I do it? It is all scary to me and I want to do the best thing for myself.

    Terri
    There is nothing scary about radiation treatments. I think people fear them just because they know nothing about them. I had 7 weeks of rads and never got burnt. I even miss going, I miss the techs, my rads doctor, the people in the waiting room, the receptionist, everyone. And, I knew that the radiation was killing any stray cancer cells left over from my lumpectomy. My hubby took me everyday and we always did something fun. He made it fun for me. It really did go fast. I met with my rads oncologist and the team of techs before I started. They explained everything to us, showed us the radiation room and machine, showed us the computers that they use, gave us literature, made us feel very comfortable. They also let my husband stay outside the rads room and watch me when I was getting zapped. Knowing that made me even feel better. It only takes a few minutes for the treatment. I got the tattoos, but, you can't really see them they are so small. I did get very tired towards the end, so, I started taking naps and trying to get to bed earlier than normal. My skin did get very pink, but, after I finished, within a few weeks, my skin looks and feels like a baby's skin. It is beautiful! I hope this answer helps you Terri.

    Sue :)

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