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Avatar universal

confused about DCIS

If DCIS is really not cancer, does this mean I am really not a breast cancer survivor?  I was planning to participate in an upcoming "Relay or Life" and "Race for the Cure", but I don't know whether I am a survivor or one that just happened to lose both breast for something that might not have ever threatened my life!  This site always answers questions referring to DCIS as a precancerous condition.  If cancer cells were found inside the ducts, wouldn't this still be cancer?
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Avatar universal
I can't tell you how comforting it is to talk with other women experiencing all of this.  I have just found out that both my estrogen and progesterone receptors were negative.  I'm still researching what that means. My surgeon is basically telling me that they know there are cellular changes going on in my left breast and that I could be at high risk for invasive breast cancer which is why they recommend a mastectomy on that breast. I'm not totally convinced of everything they say. I know there is a microscopic amount of dcis left in that one margin but they say who knows what's on the other side.  I could have my third re-excision to try and get clear margins, just have the mastectomy or nothing at all.  this is all so confusing, annoying and hard to digest when I've been healthy my entire life. Thanks for sharing your thoughts!!!
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Avatar universal
Just to give you some insight, estrogen receptor positive means that your cancer is stimulated to grow by the estrogen in your body.  Go to:   www.cancer.org     which can help you with many of your cancer questions.

In terms of a mastectomy, your recovery back to a normal life can depend on many things -such as, if you are having a single or a double, if you are having reconstruction, etc.  I know women that were doing great six weeks after surgery (no reconstruction) and others varied with reconstruction depending on the type that they received.  Reconstruction can also involve multiple procedures.  Once the new breast is created you have to decide if you want to continue with the nipple and areola reconstruction.  Remember, every procedure that you do has its own recovery time.  Discuss each scenario with you doctor.  As a patient, I also suggest that you sit with a plastic surgeon prior to the mastectomy so you know all of your reconstruction options prior to your surgery so you can possibly have reconstruction in the same surgery as the mastectomy if that is what you choose to do.  I personally had a bilateral mastectomy with tissue expander reconstruction and then implant replacement and had some difficulty with it.    Everyone's definition of normal is different.   Hopefully, once the cancer is out of your body you are beginning your road back to a normal life.  It takes time, but it will come.  God bless
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Avatar universal
You mentioned you had a mastectomy with just DCIS.  Was yours high grade?  I have an appointment with the pathologist to actually look at my slides and talk about the whole thing. They all, of course, recommend a mastectomy to prevent the DCIS from invading.  They say this takes quite awhile to happen and I don't have to rush my decision so I am still researching. I also do acupuncture and the acupuncturist is a practioner of oriental medicine.  She has put me on a prescription to build my immune system up in hopes of preventing or fighting off those pre-cancerous cells to grow. I haven't found out whether my estrogen receptor is positive or negative. Not even sure what that means. I'm more concerned about after the mastectomy rather than having it.  I've always been healthy and strong and don't want to lose that.  How long does it take to get back to normal, if there really is such a thing?  It's so comforting to talk with other women who are in similar situations.
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Avatar universal
DCIS is cancer still contained within the ducts which by definition is pre-cancer until it leaves the ducts but it will develop into cancer given enough time.  I had a mastectomy for JUST DCIS, but my doctors never called it anything but CANCER!  It is only a matter of time before DCIS becomes invasive "true" cancer by definition.  During my surgery they did find 1.6 cm of invasive cancer so now I am in chemo as well.  surprise, surprise!
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Avatar universal
My situation is a difficult one actually.  If you want to know the story you can email me at ***@****.  Anyway, for me, the decision was easy.  It's a personal one of course and no one can say what is best for you except you!  I was diagnosed with mucinous carcinoma and ductal carcinoma.  I was told I had cancer and I would have to lose my left breast.  I just knew if I had to lose one.....then take both of them, because I was NEVER going to have another mammogram!  I just couldn't imagine having only one breast.  I couldn't get anyone to listen to me about having both breast removed at the same time so they only took my left breast.  The first time I looked in the mirror after surgery, my knees buckled and I was horrified!  I was so unhappy and I felt like such a freak. The Path Report had several discrepancies but it stated High Residual, High Grade DCIS.  It also stated infiltrating ductal carcinoma under the codes but I am being treated as only DCIS.  I was finally able to get the right mastectomy 4 months after the first one.  My surgeon said he was happy that I made that decision because the right breast had already started making changes and we got it just in time.  I have no regrets with my decision on having both breasts removed.   Now, if I had known more about breast cancer when I was dx. and if I had been diagnosed with DCIS, I might not have done anything.  It just kills me when I read DCIS is just a precancerous condition.  How can you be a breast cancer survivor if you really never had cancer in the first place?  I am still confused!  The way I look at it, you either have cancer or you don't.  You shouldn't have to lose your breast for something that may never threaten your life.  My decision was based on the fact that I had cancer and my surgeon continued to assure me that I had invasive cancer for almost a year after being diagnosed.   Email me if you would like.  Take care and I hope your decision is what is best for YOU.
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Avatar universal
You mentioned that you had DCIS and had both breasts removed. I have high grade DCIS and have just had 2 out of 3 clear margins but my surgeon suggests that a mastectomy is the best thing to prevent IBC because I am now a high risk for it.  Just wanted to know how you made the decision to have the mastectomties. This is a very hard decision to make.
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Avatar universal
Dear aggie401:  DCIS is a "precancerous" condition based only on the fact that one of the hallmarks of "cancer" is that it is invasive.  Malignant cells within ducts that have no invasive characteristics are DCIS.  If left alone, over time, this would most certainly, develop into invasive cancer and therefore, it is treated.  So, it is a matter of semantics.  I would consider you a cancer survivor.  You were just fortunate enough to have caught it earlier than most.
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