Not sure where I fit in...

Decemberbear. It's a whirlwind when you learn that you have dcis and before you know it, you are in surgery, and you have to deal with all sorts of senario's. After surgery you are told that you are lucky, you have stage 0 dcis.  I was relieved, but it takes time to come down from the whole experience. But, if I have had my breast removed, I would forever be reminded of what breast cancer cost me.

I chose not to have rads or tamoxifin. I can't relate to those who have. I don't feel like I had real cancer....cause I didn't suffer like all my other bc sisters. I didn't have a mx, just 2 simple lumpectomies. 

I don't talk much about my dcis experience with my friends...they don't quite understand stage 0 or why I didn't have treatment. I found this forum a great place to discuss my struggles, feelings, questions and fears of a recurrance. The women here are mostly supportive. I don't feel a need to come here much, but at times, I do...not sure why...just to know that someone out there cares and you're aren't alone.

What's tough for me now is I feel silly seeing my bc surgeon. It will be 2 yrs this fall since my last dx in late Oct/Nov. One year ago, I asked for a mri and the surgeon didn't call to tell me my results were clear. I had to ask my naturalpathic doctor to get the results...so I figured my bc surgeon feels that my dcis dx wasn't serious enough for follow up... so I feel a little stupid asking for continual followup for something thats not there any more. I asked my primary doctor for a mammogram in May. I suppose right now I'm on my own.

Am I a cancer survivor...yes and no. I dodged 2 dcis bullets, and that's a 100% survivable...so I don't count my self in with those who had to survive a huge ordeal...like yourself who lost breast.

Oh ladies, just because it was caught at Stage 0 does not mean it isn't BC. Had it been caught later, it would still be BC. I have two friends right now who have been tagged at Stage 0 and are classified as BC by their oncs. Labels are just labels. The fact is - you have gone thru profound treatments that any stage BC survivor would have had to have at some point. I have Stage II in the left breast (had), and a lumpectomy. But now the docs want to do a double mastectomy as a preventive measure to stop further cancer in me bec of the type of cancer that I have. And they want to take a healthy breast that has had no cancer. I still have cancer-period or I wouldn't be on this merry-go-round. I agree with Traci, if they have to take your breasts to save you and/or spare you, there is no need to get your head wrapped around details and labels. We want to put things in a nice box with a bow but often, those are not the cards dealt us. Fact is, you have had a tremendously profound loss: The most firghtening diagnosis and treatment intervention that a woman can get; and it al happens so fast that there is no time to process any of it. i am just starting to come out of the fog and beginning to grieve. Give yourself time to process the feelings (like with a therapist) or a support group. Your loss and your surgeries are just as profound as anyone of us who may have had a more advanced stage of cancer. Give yourself time to absorb what has happened to you before worrying about labeling it-very honestly, labels are the least of our worries-especially when we (you) have gone thru such aggressive treatments. We all want to try and judge ourselves by comparison and cancer is very different for each of us as is treatment and followup. Often, there is no standard course. I am allergic to chemo and cannot have it or rads or Tamoxifen, so my recovery path and followup is very different from that of other gals here. The treatment defines the disease, as do the feelings. That may sound odd, but give yourself time to get thru the shock and absorb all of this. Blessings and prayers to you all, SV

Cancer is cancer is cancer.  Stop beating yourself up.  It doesn't matter what stage, it's still cancer.  Yes, you're right, it was caught early but that doesn't make it any less, just luckier.

I know we all have different points of view and different perspectives, but I have never had any problem with accepting that I am a cancer survivor.  I am grateful that my cancer was found early, but I am as much of a survivor as any one else diagnosed with any stage or type of cancer.  It has been five years since diagnosis for me, and my life is pretty darn good, but you never completely get back that same comfort zone in regards to medical procedures and testing that you had before cancer.  I know women that are 20 years past their diagnosis that still get on edge when they go for their screenings.  We have post treatment issues that people who have never been diagnosed have no comprehension about, is that back and hip pain because I twisted and picked up my grandchild, or is it mets?  I don' t worry overly much about this and appreciate every day I have, but I am just trying to tell you that you are every bit as much part of the breast cancer survivor's club as anyone else here, and that may not completely sink in until you have been a little further down the road.                                                                                                      I am very open about my cancer experience as advocacy is important to me.  My face is not the face that so many people think of when they think of breast cancer, that of an older woman, so I wear my pink Komen shirt and talk to as many people about it as I can.  If one woman goes to get her mammogram based on my experience, that is a good thing. I cry every year at the Race for the Cure, maybe not as much as the first year, but each year it becomes a little more bittersweet, as every year there is yet another one of my friends, my sisters in the fight, who are not there to celebrate being a survivor.  There are no guarantees, but I am grateful for each and every day, and I am proud yet humbled to be a survivor.  Some are not granted the privilege.

Question? I go back to the doctor in a month and want to find out what kind of surveillance do I need to do now that I have had a double masectomy? Should I insist on still having a yearly MRI since that's what caught the suspicious area to begin with? One doctor said just breast exams would be okay and if they find a lump go from there -- but I don't want to wait until there is a lump because that would mean it's much more progressed than if an MRI would find a small cm size

area.  Can MRIs be done w/implants present? Any other suggestions??

Oh I can relate! I have felt like I should not be feeling like I am feeling..(make sense?) I watched my mom die from BC in 1982 and I have no where gone through what she...or so many others have. But I still go through distress over knowing I had DCIS, going through rad Treatment now, Tamoxifin, and had to switch from Zoloft to Effexor. BC at any stage upturns your life! 

Each day I feel different, stage of fatigue, and when I can do things (Sundays and Mondays I have more energy) I almost feel bad when someone comes over with a dinner. Then there are days I don't want to even fix a bowl of cereal. Mornings better then afternoons etc. 

Thanks for not minding my venting. 

Thanks to you and the others' comments -- they were helpful.  I know we have to be our own advocates and even though I feel so much better now that I have a significantly lower chance of getting breast cancer back by doing the double masectomy, I still want to be proactive and make sure I'm not in that 2-5% chance of getting it again.  I'll ask for the yearly MRIs.  Thanks, again.

This is a great topic. I just started a new topic in DCIS although I am stage 2 so I hope you don't mind. Here is a copy of the text I submitted under the new topic....

I just saw an interview on CNN about Martina Navritilova  who spoke about her BC cancer diagnosis and her journey through DCIS. I must confess that I wasn't clear on a DCIS diagnosis because I am stage 2 ...so that has been the main focus on my journey. Navritilova refers to her diagnosis as her personal 9/11...it was devastating news for her.  I just wanted to say that for all you ladies who are struggling with DCIS and are unsure where it all fits into the BC world...this woman has validated your fears, your emotional roller coaster, your concerns, worries etc. She is speaking out publicly in order to get other women to make sure they get their mammograms and checkups because early detection is so important but at the same time she also speaks publicly about her fears, her treatment etc.  Ladies with DCIS...you are all brave warriors and are faced with big decsions like all of us who have a cancer diagnosis. Yes, certainly different stages have different things to deal with but this in no way should make your feelings any less worthy. The reason I am writing this is that I saw some posts from women whom have been diagnosed with DCIS and yet they are finding that people don't think of it as a BC diagnosis. I saw a topic titled "Not sure where I fit in?" You all fit in right here at BC.Org. You have BC and I don't think the emotional impact of it should be minimized. Your feelings, fears, worries are all valid. I just wanted you to know that there are many women of all stages that are in your corner...rooting for you.

Hugs to all

Beth P

Is this in two places? 

anyway, I'll give it the bump it deserves.  It reminds me that we need to keep the sisterhood strong, as well as our brothers who fight breast cancer.  It presents in many sneaky ways, and has different protocols for treatment. 

So many times I have been asked..so they got it all?  Are you all better?  And these questions are from very well meaning loving people.  They want it to be gone, and I know they want me to be free of disease.  But I have the fear, and I am shaky now.  We all understand this feeling together. 

Thanks pickle and the other ladies who have added such clarity to the questions of fitting in.