Am I a Bad Person?

You're not a bad person.....just in a ackward situation.....lets hope that this person can agree to disagree with you and move on.....you were't trying to be mean, just share what you were told.....

pupfoster1-

from someone with DCIS: You are not a bad person. you inadvertently hit a raw nerve and because it was on the fly - you didn't realize how negatively your remarks were being received.  The problem with DCIS is, researchers suspect that many instances do not develop into IDC, but they don't yet know the indicators which predict when DCIS can be ignored and when it should be removed. The physician community is trying to backtrack, so many women have been diagnosed with DCIS and many agree that they have been and are being overly alarmed and overtreated. So they are coming up with new, non-scary ways to describe it. However, based on current medical protocols we are still urged to take action by our physicians. But in the back of our minds is the awful thought - was that lumpectomy/mastectomy, was that radiation necessary? It is very possible that your friend was told, as many of us are, DCIS is cancer, it is just not able yet to break through the duct wall. That is what my BS told me and when I responded, oh the cells are stupid, she got pissed and told me not to minimize it. Women diagnosed with DCIS get totally mixed messages.  And yes, some of us feel, because we haven't had chemo or our prognosis is better than someone with stages 1-4, that we don't deserve to be considered bc survivors. 

Read your friend's email again. You did hurt her feelings eventhough you didn't mean to. You are right that we are dealing with many different issues  all due to this life-altering and threatening disease.  If you have the desire and the energy - try reaching out to her.But don't beat yourself up about this.

Julie E

Sharon, for someone to tell a woman with Stage III cancer she is "smug" about it....well, that is just screwed up. You did nothing worng.  I can see you were just wanting to reassure her, maybe she feels you were minimising her Dx.

I am like DCMom, I would swap in an instant.

I think you should write her back and apologize.For several reasons.

I don't want to open a can of worms, but.

1. There is one simple thing here about DCIS being considered cancer or not. That letter C in the acronym. That letter C stands in for "carcinoma". Carcinoma means cancer. It's as simple as that.

2. If it wasn't considered a cancer,  our sisters who have it wouldn't have to go through surgery and treatment, lumpectomy + radiation or mastectomy, and then hormonal treatment or Herceptin.

3. If you lose a breast, does it really matter that the cancer was invasive or not? Does it make the breast less important?

4. The psychological impact is tremendous, even if you are diagnosed "only" with DCIS.

5. You have been through this. You know very well we are not really our old selves once we have gotten into this battle. You know our way of looking to the world and to people is different. That is very valid for her as it is valid for you. How would you have felt if a sister with a stage IV would have minimized your diagnosis?

I think that you should do what texasrose said. 

Also, for your "peace of mind", this is the latest staging information of the ASCO, as of February 2011.

 http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-staging

It says" Stage 0: Tis, N0, M0: This is ductal carcinoma in situ (DCIS), the earliest form of breast cancer. In DCIS, cancer cells are still within a duct and have not invaded deeper into the surrounding fatty breast tissue. Lobular carcinoma in situ (LCIS) is sometimes also classified as stage 0 breast cancer, but most oncologists believe it is not a true breast cancer. In LCIS, abnormal cells grow within the lobules or milk-producing glands, but they do not penetrate through the wall of these lobules. Paget disease of the nipple (without an underlying tumor mass) is also stage 0. In all cases the cancer has not spread to lymph nodes or distant sites."

I can understand how you feel and how the situation played out.  But you are not a bad person!

Like you, when someone starts telling me about themselves or sister, mother, grandmother, etc. I jump to what I consider to be the  "good" things about their dx.  Internally I am just cringing as I'm hearing what they have to say as they tell me the dx because I'm always afraid I'm going to hear stage IV.  So I have found that I'm too quick to use words like "good" and "not cancer" because it comes across like I'm minimalizing what to them is very traumatic.  I've learned to back off and just let them talk for a while and just ask them questions like "what do the docs say", "are you getting a second opinion", etc.  After they've had a chance to vent and pour out their concerns that when they often come back around and ask how does this dx compare to yours?  Thats when I can say something like "even though it may not feel like it, what you described has some positive aspects .... <no nodes, staging, whatever>.

But this was after I had talked to a few people and later realized that I was too quick to jump to the comparison of my dx to the one they were describing.  Since these are my co-workers it was easy to go back to them and apologize that I didn't mean to make it sound like it wasn't an emotional blow to them.  No matter the stage, it is an emotional kick in the butt to find out we're human and our bodies can fail us.

What I have a problem with in your situation is that this person decided to send you her feelings in an email.  That is seldom an appropriate way to send emotionally charged messages.  It's like having a fight with someone but the other person's mouth is duct-taped shut.  When our feelings are that sensitive we should be talking face to face or, at a minimum, on the phone.  We need to hear the inflections and see the looks of concern or hurt.

My thought is to not be concerned about whether DCIS is cancer or not.  The dx is relative to how the person receiving the dx is handling it emotionally.

You are a vey caring person Sharon!  We all step in the piles now and then.  I'm just sorry you got the hurtful email instead of a meaningful conversation.

Glad you and your friend are communicating and working thru the misunderstanding.  This post is a good reminder of how different people will cope with the exact same information in totally different ways.  It reminds me to stay as sensitive as I can to how others are reacting, even if it is very different from how I would react.  For sure, nothing shakes us up like this disease.

Hi Sharon

Oddly, I had a sorta similar 'encounter' with a friend from High School.  I had just been diagnosed with mets - stage IV and trying to understand and deal with what I was facing - those first 3 months are the hardest when it comes back. 

Well, she had me on the phone - happens that she also has stage iv but her initial dx was in 2006 and after chemo and radiation - it soon came back in her bones - spine like mine.  She did have some complications and every conversation was all about how much worse her condition was than mine.  I was brand new to it and while I appreciated some of her suggestions and knowledge, one day pushed me over the edge.  I just had a visit to the onc and the psychiatrist to help me manage the emotional rollercoaster and the pain.  Within a week or so, I was not so 'touchy' and stopped crying all the time.  She called and I shared with her how wonderful it was and thanked her for recommending I get myself on some anti anxiety, anti depressant and pain meds - it was working.  She had just come from a visit to her onc and started to tell me about how lucky I was to have 10 years of life without thinking about cancer and by doing that, I had put myself at risk as the cells were just waiting to grow again and having done nothing about it is why it came back.  I took a deep breath and said - I did my chemo, declined radiation, took the Tamoxifin, had yearly checkups and mamo's, did the full 5 year evaluation, yearly checkups and mamo's and at the 10 year full evaluation - we almost accidently discovered the mets.  She started yelling at me about that is not what I said - I got a little loud and said if she thought there wasn't a day that the first thought I had in the morning if I felt funny that the cancer was back then she is looney.  Oh boy - then I got the 'lecture' on that it is never really gone, it just isn't active.  I told her I didn't care a rats ass the reason it came back, its back and I have to deal with it and treat it and get as much out of life as I can.  She went on and on and on until I screamed 'enough' and then I was a bitch and then a crazy bitch and it went really south after that to the point where I just hung up.  I emailed her and tried to get her to understand and I got back this 'well, you must be more deserving than me - hope you have a great life while I will die soon'.  It was horrid.  This was one of my best friends.  She called me once in the last year and tried to talk like normal - I was at a convention and was going into a class so I did have to cut the conversation short - I called her back several times but haven't been able to speak with her since.

Some people just have to always have everything worse than everyone else around them - true or not - you are not a bad person, in fact, rather a kind person to try and ease your friends fears - and didn't mention at all about you being stage III and your prognosis. 

Live your life and don't waste a moment of it trying to fix something that does not want to be fixed.

Hugs...LowRider

Nah, you're not a bad person, you did nothing wrong.  She's just overly sensitive right now b/c she thinks she has bc, in her defense she truely could have been told that & is really confused, she needs to do some research.  Let her board this hell train if she likes, she can take my seat, I'll get off.  Wait, was that smug and below the belt...sorry, as a IIIC I have problems sypathizing or maybe it's my AI. 

Hey, you are coming from a place of wisdom and science, so you were trying to help her feel better, and it got misinterpreted. You know what you are talking about, so I think you meant no harm. Don't beat yourself up---there is a difference between pre-cancer and cancer, so you did the right thing.

xoxoxoxo 

I don't think you're a bad person at all, I think it's a difficult subject and even as survivors, we sometimes don't realize how we come across to people.  

I have learned that when someone has cancer, any form of cancer, there is very real fear, even with cancers that have a good prognosis.  Having gone through my own treatment, watching my Mom go through her treatment, and having a friend have a very superficial melanoma removed, I can say that it appears to me that it doesn't matter how good the prognosis is, fear is fear.  I do think it probably is a whole different ballgame for stage IV.  

FWIW, I don't understand the "DCIS isn't cancer" statement, though I am not an oncologist.  DCIS is cancer, it's just confined to the ductules and therefore usually has not spread beyond the ductules and tends to be very curable in most cases.  DCIS becomes IDC when it breaks through the duct walls.     My Mom was initially diagnosed with DCIS on biopsy.  When her postop pathology report came back, it was IDC.  When they biopsied it they just didn't get into the areas that had broken through the wall.  

My understanding is that dcis cells do not have the capacity to metastasize, it is not just about being in the duct or out of the duct.  Invasive cancer cells are really different kinds of cells than dcis cells.   I think some people do not consider it cancer because of this - that it cannot metastasize.  From what I was told (by my doctors) and read, most dcis does not go through the changes necessary to make it invasive (although I am pretty sure all my doctors thought it was a good thing I had a second mastectomy!).  I spent some time looking into it since my good breast was sprinkled throughout with dcis.

It's interesting to me - I was at an event with a woman who went through DCIS at the same time I went through my IDC treatment. We were discussing a newly diagnosed other friend of ours who is going through tx now.  The woman was saying how badly she felt for this friend (and for me) because, as she said "I didn't even have cancer, not like you two did."  I thought about the whole controversy on this board and was tempted to say "OH YES YOU DID!"  But I bit my tongue.  Just funny how some women are hell bent on insisting that it IS cancer, and others are equally set on insisting it isn't.

It all just sucks, that's my opinion.

Sharon,  You are so not a bad person.. Your girlfriend should know you get her situation better than anyone.  I'ts just you've been through so much more with your treatment.  Explain to her that you weren't trying to miminize her situation by insinuating yours is much worse than hers, but you spoke to her to more or less encourage hopefulness in her DCIS diagnosis as a very early stage that hasn't broken thru to infiltrate her breast. and that you are releived for her that she's not progressed to higher stage with lymphnode involvement.  Your a good girl!!  I know your friend really knows that.  She's just upset with this new no women wants to hear.

Barb

sharon, from what I read here you are def not a bad person. You could maybe be a person who inadvertantly did a thing with bad consequences, which is not at all the same, which of us never made a mistake.

Your words given in all sincerity were taken badly and you saw that and are trying to make amends and learn from it,  those are not the actions of a bad person. A bad person says, OH you how cancer Wow you will probably lose your breasts and go bald and hubby will walk out on you but anyway you are so ugly nobody would notice the difference and you will be dead by christmas so I wont get you a present just yet, they woudl say that all and loads more (see stupidest things people said threads and similar) just to be mean and then go home and  laugh and feel good about having said it so smart and quick. That is not you.

Whether DCIS is truly cancer is a totally separate issue, because you were passing on a "fact" as told you by an expert, and unless you are also a cancer expert that should be okay. I agree that the C in DCIS says Yes, it's cancer although it hasnt invaded other structures YET (so shoudl we wait till it does that is just dumb in my boook) any mistake is in whether it was appropriate to comment at all beyond wishing her luck and hoping she does well and she can call you if she wants to talk more....