DCIS...some thoughts...

You now have a significantly higher chance of recurrence than someone who never had that little seed discovered and removed.  This has to change your view of yourself and your life in important ways.  So yes, you are a survivor.

I view my role - someone with a DCIS quite a bit smaller than yours, diagnosed at 56 years - as that of warning others.  I tell them I had a very small cancer, too small to even feel any lump, and that without mammography, it never would have been caught so early.  I tell them I have a relatively curable form, it was found early, I'm doing what I need to do, but they don't need to worry about me.  But that I'm living proof of the importance of early detection.

BUT I also never forget, it could hit me again, just as unexpectedly.

You say you are still making treatment decisions.  I did not take the "standard of care" route, I decided against tamoxifen, for me personally the risks outweighed the benefits.  I explored radiation types and outcomes, and again, for me personally, I wanted to minimize side effects even at the cost of possibly missing a few early cancer cells.

All that being said - and I am happy with my choices and my care so far - I never forget that if/when this thing comes back, I will have a different set of decisions to make.

I probably speak for a sizable proportion of us on the discussion boards when I say, the decision-making was the hardest part! Good luck, Dee.

Dee, it's up to you. It's your life, you should describe it however you feel like describing it. My situation is similar to yours and I have used my situation to encourage others to get regular mammos. 

I was diagnosed 4 days after Elizabeth Edwards died. She skipped mammos for 4 years, and if she hadn't her cancer might have been caught at a time when it would have been survivable. I tell my friends "You have a choice. You can be like me, or you can be like Elizabeth Edwards. If you want to be like me, with just a small scar and little chance of recurrance, get annual mammos. If you want to be like Elizabeth Edwards, skip your annual mammos.

To me, survivorship is about advocacy. 

Interesting thread, ladies. I never use the term "survivor" for myself, just not into the whole pink campaign thing. And I don't take on the role of "victim" either. But not a day goes by that I don't think about dcis and bc and truthfully, there will always be fear in me that this could impact me again. No one's in the clear, but I totally agree that early detection is a life saver and I will forever be glad that a routine mammo. detected those little micro-calcs years and years before I'd have felt a lump.

I am not being "flip"  I am 60 years old.  I had a lumpectomy with bad margins and had to have a mastectomy so I opted for a double.  Got infected and had emergency surgery for infection.  Then was hooked to a picc line for four weeks.  I now face the exchange surgery and the tatoo if I so desire. DCIS is cancer caught in time we pray. It is like being 'a little pregnant"  Celebrate with me that we were blessed so that we may encourage our friends and relatives to be faithful about their checkups!

Pink is my fav color so the "pink" thing is easy for me! All I know is this...when the radiologist told me he suspected DCIS following a routine mammo, biopsy and US my life forever changed. I wondered would I live to be old, live to see my girls grow to be adults and realize their full potential, live to grow old with my husband. I saw my mother go into "protect" mode and my friends rally and support like no other. The main thing I realized that I'm not invincible, that cancer cells invaded my body and I need to do what I have to do to decrease the risk of any future cancers. I realized my vulnerability and how glad I am that I had that mammogram. Cancer is cancer...abnormal cells with the potential to do harm. I will never be the same. I look forward to the time when every ache/pain doesn't immediately make me think, "It's cancer." I "had cancer, and I am a survivor!"

Dee- I think this is something that a lot of us who have/had DCIS struggle with.  Before I was DX I never really realized the different types/stages/grades of BC so there's definitely a lot of gray area.  Here's what author Shelley Lewis has to say on the subject.  She wrote one of my favorite BC books.  It is called "Five Lessons I Didn't Learn From Breast Cancer".

Until then, just call me an advocate. 

I have confused thoughts on this subject as well. I am 4 weeks post-surgery for BMX with immediate reconstruction  (saline implants with Alloderm). By choosing BMX, doctors told me I would not have to do any radiation or Tamoxifen. Also brought my recurrence rate down to as close to 0% as possible. A lumpectomy would have taken half my breast, anyway, so that also influenced my decision, along with family history. My DCIS was caught early (I found a palpable lump -- the lump was an intraductal pappiloma -- which, when removed, had the DCIS under it).  I consider myself extremely lucky to not be going thru the treatments (some of them hellish) that other ladies are going thru. And yet, I still feel I went thru something major -- I had both my breasts removed, for Pete's sake ! So if you put me in a group of women who have not had breast cancer, I feel unlucky. But also that I survived something. Know what I mean? Right now I am dealing with the emotional side of things. For example, my husband and I ran errands together on the weekend because I'm still having problems lifting heavy things / reaching above shoulder height. We ran into different people we know. Their attitude seemed to be that since I was up and about, running errands, I'm "all better" and "it's all behind me now". Well, I'm still recovering from a big surgery and I am never going to be the same. I look OK in clothes but different naked. I have scars. I have no nipples. The foobs feel alien to me. I am no longer in pain from the surgery but I still have a lot of discomfort and there's still a lot of "everyday things" I can't do. So it's frustrating. I feel like nobody understands....except the ladies here.

Sorry, I think this post was all over the place. Not even sure if I answered the question ! I guess I think of myself as a "survivor" in a sense. That word feels powerful to me. I guess that's why the groups chose it.

Wow! After reading these posts, I feel like every single one of you!! I have been looking for a thread that I can really, really relate to.....

April 4, 2011, I was diagnosed w/DCIS, stage zero..I like alot of you, chose the most aggressive form of treatment. Shoot, I am only 45, I didn't want to worry about all of this for the next 40-50 years! I have a really fast moving PS. Almost 3 months since my diagnosis, I have had a BMX,TE's, then exchange surgery was June 15th. I am 2 weeks post-op now, and I am slowly starting to feel like my old self. I have started the treadmill, slowly but surely. I chose saline over silicone, mainly because I want to know when it has a leak, rather than wait every 2 years for MRIs, and I am a larger framed person, and the silicones would most likely not look porportioned to my body, since they don't come as large as the salines.

Mine, too, was found in a mammogram. No lumps. At all. I am the mammo advocate now, as seeing dozens of friends go for mammos that normally wouldn't have. I feel blessed everyday this was caught early enough so I don't have chemo/rads. My heart bleeds for those that aren't as fortunate. I do consider myself a survivor. No doubt.

DeeLJ--I was thinking the same thing..where is the "like" button! I am saying to myself "Yes, that is exactly, how I feel"!

Looking forward to reading everyone's thoughts on their personal journies! It defninately makes me feel "normal" !

I too have struggle with the whole "do I, don't I?" question.  I was dx.ed with LCIS about 6 years ago. Two excisions and a little Tamoxifin (didn't do well on it) and then two "clean years".  When I went to get my mammo, my tech refused to have the radiologist read it because I "didn't have cancer-LCIS is NOT cancer".  Well, on a Friday afternoon, after having had several "bad" mammos-I don't CARE what it is-just please have someone look at it...

 Six years later, multiple needle biopsies, MRI's mammos and ultrasounds, I decided to have a PBMX. And, on the left side (LCIS was on the right) they found DCIS-not detected 3 months ago on mammo or on ultrasound.  BS say's they "got it all-clean margins"-no need for chemo or radiation.  (She told me this over the phone when giving me the path report).  I plan to have a fuller conversation with her.

My line, when people ask:  "I had a touch of cancer"-whatever that means.  What it means to me?  I was damn lucky to have caught things very early because I always had my mammos and did self exams (not that I ever found anything myself).  I am so LUCKY to not have to go what many others here are going through-but having a BMX still isn't all that easy-and two weeks post op, I'm reminded of that every day-but also remind myself that I'm not headed out the door for chemo or radiation,but just to find a bra that might actually fit!

  I'm one of the lucky ones-so it's a "touch of cancer" and close monitoring for the rest of my life.

  Pat

Microinvasion.  

DCIS-Mi is a diagnosis that is mostly DCIS, with 1mm or less of IDC.  It's Stage I rather than Stage 0 but it's the very earliest diagnosis of invasive cancer. The prognosis is very close to the prognosis for pure DCIS.  

Thank you both for your help:) I am about to start Tamoxifen...I am 2 mos out of radiation now. Maybe I should just try to relax and trust the Drs??

Thanks so much, DeeLJ, for starting this thread.  I've just joined these discussion forums, after being diagnosed with DCIS in mid-April and thinking for the last few months that I could just muscle through treatment and get it behind me.  Ends up that's been tougher than I thought, and I've had all the confusing, bewildering thoughts and feelings you all have written about. 

The first words out of the radiologist's mouth to me, after recommending the stereotactic biopsy, was "Whatever they find, this isn't going to change your life."  It seemed reassuring at the time, but now, after a lumpectomy and 5 out of 33 radiation treatments, my response would be, Say WHAT??!  

And yet . . . and yet . . . after watching a dear friend die of breast cancer nearly ten years ago,  I'm always mindful of how lucky I am that this was caught early.

So, I feel like I'm constantly bobbling back and forth between those two poles:  frustrated and unhappy about this intervention in my life, but grateful that it was just "a touch of cancer."  It's exhausting!

Yup, ritaz, it was a man.  It was a stupid thing to say, though I'm sure he said it with the best of intentions.

 Still, it's part of the pattern of messages about DCIS that is very hard to sort out --  the "do I, don't I?" that rehm046 wrote about and that DeeLJ started with on this thread.  Also, the message I got from doctors and others after the diagnosis seemed to minimize the treatment (maybe because it doesn't include chemo?), so I thought it'd be pretty easy.  But I had a lot of breast pain after the lumpectomy that finally diminished right about the time I started rads, and then has come back with a vengeance after just 7 rads sessions, so I've felt a bit blindsided. It's really had an impact on my daily life, and that's been such a surprise.