• I've just been diagnosed with DCIS Stage 0 breast cancer and I am just a wreck that I can't make a clear decision.

    Asked by Patty on Monday, November 14, 2011

    I've just been diagnosed with DCIS Stage 0 breast cancer and I am just a wreck that I can't make a clear decision.

    My surgeon has recommended removal of my breast with the optional of removing both to cut my chances are breast cancer down to 0. I don't think I want reconstruction nor do I want to lose part of my body. But I want to live, and I know I must choose. Can anyone help, I am so scared and lost.

    24 Answers from the Community

    24 answers
    • mspinkladybug's Avatar

      ok stop and breath......
      this is a very scary time for you.
      my personal email is [email redacted] i am a 3 year survivor
      i lost 1 breast and have not rebuilted yet and i refuse to wear my fake boob and i am a dd...
      losing a piece of ones body is hard I had my boob for 45 years it was hard to say good by to it BUT i was blessed to of had a anunt who lost a breast back in the days woman died from this beast so i grew up around a woman how sh owed me that breast DO NOT make the woman, it hurts to lose it but you do what has to be done to move forward...
      I would consider a second option on this.
      We spend allot of time looking for the perfect ob/gyn that when we hear the word cancer we just go in the direction a dr points us too. and it may not be the best dr for us.
      In order to lose both breast do you have a high family history of b/c? did they do a brac test on you??
      just because we remove the breast does NOT mean that the monster will not come back! that monster can come back in other parts of our bodies and that is a subject that needs to be addressed with your onc
      Also what type of b/c do you have hormonal ibc triple negative? all of this plays an important roll in weather to remove both breast
      Have chemo ro rads been talked about?
      you have stage 0 what is your grade? the grade tells how aggressive it is
      YOU CAN NOT make a decision that is right for you WITH OUT all the needed info.
      so take a breath call the dr office and ask question about your b/c . Then call around and dr shop. this is YOUR BODY and YOUR LIFE.
      If you need me just email me. i will be happy to help you anyway I can even if u just need to talk.

      almost 5 years ago
    • copland16's Avatar

      Hi Patty,

      I found that the initial part of the process is the hardest. You are in the unknown right now. I agree with mspinkladybug: you need more information to make a decision. I would recommend starting a notebook or binder and bring a friend of family member with you to your appointments. Ask them to take notes. I never went alone to an appointment; you need an impartial person...you are too emotional to make decisions by yourself.
      Please reach out! I am a one year survivor and was diagnosed in week 5 of my pregnancy. I had to have a mastectomy because it was so early in the pregnancy. I had DCIS stage 2, estrogen and progesterone positive.
      Breathe! It will be OK.

      almost 5 years ago
    • khsherwood's Avatar

      I had a high grade DCIS almost 13 years ago. I had a mastectomy of my right breast with immediate reconstruction with a saline implant. No one had suggested that I remove the other breast. I wish that they had. I am waiting for the implant to fail, they are supposed to last for ten years, and it's still ok. When it does fail and I need to replace it I want to remove the other breast too.
      Have you gone for a second opinion? If you haven't now is the time to do it. Go to the best cancer center near you that is not connected to your current doctor. They will probably confirm that you need a mastectomy, but if you hear it from someone else it will help ease your mind.
      You might want to go to a support group to meet other women who have been through it already. I did. I went right before my surgery and for a couple of years afterwards. It did help, besides they say that women with cancer who go to a support group live longer than those who don't. You said that you want to live, right? Good luck, Kelly

      almost 5 years ago
    • leepenn's Avatar

      Really - "they say that women with cancer who go to a support group live longer than those who don't" - MORE INFORMATION PLEASE! Where are these stats? I have never heard this.... My experience with my one-time support group attendance was not positive.

      AND - mastectomy - bilateral - just one.... DEFINITELY get another opinion... You have some time... Use it to really feel confident of your decision. I agree with that advice whole heartedly. I'm so sorry you have to deal with cancer...

      almost 5 years ago
    • digger6218's Avatar

      I too have been diagnosed with DCIS Stage 0 breast cancer (Aug. 15th, 2011)I have had biopsy's 3 times in 8 years. My hubby called it mastectomy by installments.
      There is a male friend who had breast cancer and had a mastectomy . He also had chemo and radiation. That's the part that scares me more than surgery. I have a heart birth defect, I'm missing an a/v valve. And my friend got damaged heart muscles from the radiation. So my decision is to have the bilateral mastectomy with reconstruction. My Plastic surgeon actually will work with the breast surgeon on the mastectomy. They have worked together for years. I will have the Expander-Implant Breast Reconstruction. My surgery is in two weeks. Nov.29. They will be doing the Nuc Breast sentinel nodes also.
      Sorting things out in your mind once you have the information is the hard part. I found peace once i had made the decision. Side note I have also had early colon cancer and just had my 3 year colonoscopy. Found 4 polyps and all 4 were neg. this time. I am relieved to say the least.

      almost 5 years ago
    • lovingspouse's Avatar

      Patty: This is a no brainer. My wife had the same choice and opted for the dual mastectomy. Why? A lumpectomy or single mastectomy increases your risk for the development of potentially fatal breast cancer in the remaining areas. Also, if you have one breast removed, do you want the surgeon to reconstruct the new breast to the scale of the old breast? It makes so much more sense to go with the dual mastectomy, with concurrent reconstructive surgery both for health and appearance reasons. Good luck!

      almost 5 years ago
    • Patty's Avatar

      Thank you all, you all can't imagine how much you have helped me. I have been keeping busy by figuring out what the unknown or source of my fear is, and duh it is the unkown. Reaching out to all of you has been a tremendous help. I also paid a visit to the bra shop that specializes in prosthetics. That was very empowering, what was in my head and what these things really looked like was a different story. I have an appointment with the plastic surgeon tomorrow and then the next step is to decide. I've already made the decision to have the bilateral mastectomy. Now I just have to decide what procedure will work best for me. You are all angels, and I've printed out your responses, they really help me not to be so afraid.

      almost 5 years ago
    • jamrck's Avatar

      What a difference a day makes. You sound so much better. You received some great advice. The only thing I might add is to ask your plastic surgeon and/or your local American Cancer Society if there's someone you can talk to who has been through the surgery and reconstruction (peer counseling). While everyone's experiences are not the same, it will still give you some idea what to expect. Good luck.

      almost 5 years ago
    • Jan's Avatar

      Patty I have to say that I appreciate your question. I have been dealing with breast cancer since August, and just found out 10 days ago that they are now recommending mastectomy. I too am feeling scared and afraid. I am planning on reconstruction, but I am interested in knowing what prompts you to decide against it. My plastic surgeon is an arrogant ________ so I got rid of him and am going to begin working with another one. Keep me posted and I am very much interested in hearing what you have to say. When is your surgery? Mine is slated for Dec. 15. ...not how I wanted to spend the holidays, but I guess it is what it is.

      almost 5 years ago
    • Patty's Avatar

      Jan, I am so sorry your experience with the plastic surgeon was so negative. I had a very positive experience. My doctor was so patient, kind and gentle with me. He listened like I was only person on this planet. They he went through my three options in great detail. He showed me pictures. My favorite is how I would look in 18 months. I actually knew right away that tissue expansion was for me. My surgery is scheduled for 12/5 and I am ready for the next step. It is very important that you trust your doctors. Finding out that I needed to have a mastectomy rocked my entire world. I had night terrors and then I found out that there are so many people out there to help you. You are doing the right thing by reaching out. Dumping that doctor tells me you are a lot stronger than what you think. Another little secret is that I am taking it a day at a time and not overwhelming my self with things that may or may not happen. I know easier said than done, I still drift to the dark side. But I have a team of positive thinkers to talk me off of the ledge. Digger6218 was 100%; once I came to a decision that was right for me, I found things were not so bad. The shock waves get a little better every day.

      almost 5 years ago
    • Jan's Avatar

      Hi Patty. I agree with the others....the beginning is the worse part. I was diagnosed with DCIS stage 1 about 5 months ago. They told me it was 2 tiny areas that we could get with a lumpectomy and radiation. Then, an MRI showed an area the size of an egg, but it hadn't firmed up, so no one felt it. When that first lumpectomy was done, the margins weren't big enough. Back for another lumpectomy. Then, still not enough margins. I had my mastectomy (1 side) a week ago today. I also had a breast lift/reduction on the healthy boob, so I could get the expander put in place on the left breast. I could really identify with everything you wrote about. do some reading on your own. take people with you to the appointments and record them if you can. Find a support group, advocate for yourself. It will get better. Here is my personal email if you want to talk privately: [email redacted]. Keep us posted. You are not alone. Jan

      almost 5 years ago
    • HighwayOfJoy's Avatar

      Hi Patty. I remember my first two weeks after the diagnosis. It was like I was "under water" and that is how I heard everything. Lucky for me, I have a friend who was an oncology nurse and she went with me to every visit and took notes for me. I was also going through a separation from my husband at the time! God really knows how to get our attention, huh? I would be VERY leary of a doctor who wants to do a FULL mastectomy with stage 0. The surgeons at IU, Simon Cancer Center, Indianapolis were wonderful. All women, so they get our thinking. Please seek out other opinions and let them review your full family history and yours. I am praying for you at this moment. I know how scared you are.

      almost 5 years ago
    • beingangelic's Avatar

      First and foremost I am so sorry for you I do know first hand the fear, but please remember , one moment at a time you will get through this with the help of family, friends and new friends, sometimes the people you most thought would be there cannot.. for there own reasons...so your new friends will be helpful, I agree w/what was answered about stage 0 and dcis, please please get educated find the best absolute surgeons, and plastic surgeons in your area also, knowledge is power so empower yourself between the tears, and remember that only a moment at a time somedays are like that...slow steady and you will be ok I get the results from 2 biospy in left breast on Friday, I am waiting till I hear, I am trying to stay as positive as possible but I do admit it is difficult at times, but where there is a strong will there is the way, ..... the middle way I am also a yoga teacher...go figure...

      over 4 years ago
    • Staci's Avatar

      Hi Patty,
      I'm sorry for your diagnosis. I can relate firsthand to your question. I was diagnosed with stage 0, non-invasive DCIS in the right breast after having a mammogram and biopsy in Sept. 2011. In Feb. 2012, I wanted an MRI done to see if the carcinoma spread any--it did but thankfully not to the lymph nodes. On Feb. 21 I decided to schedule the right breast mastectomy because my surgeon and oncologist recommended it since the cancer cells were in different locations of the breast and because I didn't want to keep scheduling time off from work for lumpectomy surgeries with the chance of the margins not being clear. Hope you are researching all your options carefully before making a final decision. Take care,


      over 4 years ago
    • Ter's Avatar

      Patty -
      I am assuming that by now you've made your decision and are somewhere well through your recovery process? I was diagnosed with DCIS in January, 2012, and chose to have a bilateral mastectomy as I wanted to minimize the chance that I would have a problem in the as yet unaffected breast.
      I hope that you were able to decide what you wanted to do and that it went well for you. My surgery went very well and the subsequent treatment (a course of radiation as a precautionary measure) is going well, too. I had expanders placed during surgery and once my radiation is complete I my plastic surgeon will replace these with implants and complete the reconstruction. Try to focus on the fact that once we go through this, we are cancer free, and hopefully we will come away from it with a renewed sense of purpose and an appreciation for life that we maybe didn't have before? Take care and I'll check back on you...Ter

      over 4 years ago
    • ArizonaDiva's Avatar

      Hi Patty, sorry to hear of your diagnosis. I to was diagnosed w/DCIS stage 0, estrogen positive in my right breast in Oct 2011. A major infection in my leg prevented me from having my mastectomy as scheduled in Jan of 2012. I did finally have the surgery March 12th, 2012 with Sentinel node biopsy with tissue expander on right side and breast lift and reduction on left side. I'm just curious how did your pathology report comeback? My path report came back unusual so my oncologist had to send it out to a review board for clarification on how to treat me, with or without chemotherapy. I've noticed a few others on this board who were diagnosed with DCIS, stage 0 who have had to have radiation or chemotherapy or both. I see my oncologist Weds to hear what the verdict for my future treatment.
      Much success to you on your recovery!

      over 4 years ago
    • Denise916's Avatar

      I was diagnosed with DCIS stage 0 in April. Why is your surgeon suggesting a masectomy right from the get go. I had a lumpectomy and they could not clear the margins with that one surgery. A second lumpectomy did not clear them either and a third showed DCIS in another area. I am scheduled for a masectomy in August. I suggest a lumpectomy first. You never know, they may clear the margins the first time and you won't have to go through a masectomy. And if it turns out that you do need a masectomy, at least you will have peace of mind that you did everything to save your breast.

      over 4 years ago
    • GetMyLifeBack's Avatar

      I was diagnosed with stage 1 ER/PR+, HER2-. I went with the bilateral mastectomy with silicone. I know it seems radical but...I wanted to reduce risk and I was 33 when I was diagnosed and if I reconstructed one the other one will not look right next to it. I miss my boobs terribly. I miss being able to FEEL them. I have some feeling but it doesnt feel anything like they did before and I didn't feel anything at all for about a year and a half. It is so weird not to feel a part of your body. I do not regret my deicison. I heard from multiple survivors prior to my surgery who had one but not the other and later had to have the other one taken and they all said they wished they had done both the first time. You will know when you have made the right decision because you will be at peace. It will be scary but you will be at peace with your decision.

      over 4 years ago
    • bbailey's Avatar

      I am starting my third year as a survivor. The docs said that other than not having breast cancer that I was looking at the best case scenario. I chose to have both my breasts removed. I didn't want to stress about the recurrence that might occur in my other breast. I have undergone reconstruction of both breasts and had both nipples 'fashioned' out of the scar tissue (the cancerous duct burst at some point) by my amazing plastic surgeon (all of which should be covered under your insurance as it is not considered 'cosmetic' surgery' where cancer is concerned). What calmed my fears.....I had a women come to my house that had undergone the initial reconstructive surgery (she chose not to reconstruct her nipples) and show me the result of the surgery. I also accessed my plastic surgeons website to gain knowledge of the 'look' of his work. I am on aol if you'd like to contact me at tomorowswarrior. I chat with newly diagnosed women about their fears, resources in our community and basically just listen.

      over 4 years ago
    • IslandBeauty's Avatar

      I was also diag.. with DCIS stage 0... four years ago, I immediately made the choice to remove my left breast and had reconstruction done at the same time... Very happy I did. I am now 43... The only regret I have is not removing both breast at the same time... I worry about breast cancer in the right breast.. My doctor did an outstanding job, my reconstruction matches my other breast perfect...

      about 4 years ago
    • bjd7886's Avatar

      Hi Patty, I was diagnosed with Right side DCIS high grade necrosis stage 0 in Feb. 2012. Have a Family history of Breast Ca. I choose to have a Bilateral Mastectomy to really reduce the chance of the Ca. developing in the Left side. Even though my stage was 0, the grade was high and necrosis meaning it could break thru the duct and spread. I also had expanders placed at the time of the mastectomy. My expanders are the type that be kept in so i won't have to have the exchange later on. My Plastic Surgeon is Dr. Hilton Becker who is recognized around the world for his work in recontruction. I am so glad that I did this. I didn't have trouble coming to a decision at all. I am going for my 5 month follow up visit to the breast surgeon/oncologist. this Friday 9/21/12. I love all of my Dr's. Primary,Cardiologist, Breast Surgeon,and Plastic Surgeon.

      about 4 years ago
    • NancyLee's Avatar

      Dear Patty...

      Your post is dated almost a year ago. Hopefully by this time you have decided what to do about a mastectomy, and are healing now.

      I was diagnosed with DCIS, state 0 about six months ago. Even though my tumor was on the large size, my surgeon didn't hesitate about recommending a lumpectomy. He did mention If I had chosen a masectomy I wouldn't need further treatment, though. The operation was fast (only 1/2 hour long!), but had seven weeks of daily radiation radiation ahead, in another town.
      Few side effects, and I chose no follow up hormonal therapy.

      I'm not sure why your surgeon would recommend such a drastic move for DCIS, stage 0. Have you had breast cancer before? You must have a cancer history in the family? I know women who have chosen more radical surgery just because they don't want to WORRY about it coming back, and they have reason to worry. If you are still unsure, I'd get a second opinion. The good news is that reconstructive surgery has come a long way, and may not be as bad as you fear.

      I send my very best healing wishes to you, and hope that it has been resolved, with you back on the road to recovery.

      With love,


      about 4 years ago
    • Diana60's Avatar

      I am in the same position right now and am headed for a lumpectomy on Nov. 12. I was told that it was so small an area that was all that was needed. I have inside radiation right after the surgery and hopefully will be able to avoid the 5 to 7 weeks of radiation. But I have been told that I will need tomoxifen for 5 years.
      I /would like to know what you did do?

      about 4 years ago
    • Momofivedcisbc's Avatar

      I wish I was here a year ago. I am wondering how you are doing a year later. Stage 0 is still breast cancer. It is hard to make a decision when so much is unknown. I hope you have found a balance and a sense of peace. Text or e-mail if I can be of assistance.

      almost 4 years ago

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