Emotional side of DCIS/mastectomy

Man, I hear you both.  I am having a horrible time with this BLM.  I totally regret the decision. I have had one revision in Nov and scheduled for another in March.  I feel like the process will never end.  It is effecting my whole life.  I am never happy anymore, but then again I didn't have to have chemo or radiation.  How could anyone deal with all of those things? I am such a wimp.  I can't even deal with the mastectomy/reconstruction process.

That is one of the reasons (now don't jump all over me) that I have chosen to not wear foobies. My flat chest is my constant reminder of my cancer. I have to live with it every minute of every day. Therefore, everyone else around me will deal with it too. As I told a workmate, "Why should I wear fake breasts to make YOU feel better."

I wear my flatness like a shield against anymore questions about my cancer. No stranger has had the nerve to question my chest and I don't expect it. I like to feel like I am leading a trend that it is perfectly acceptable to have no breasts. I had a very full 42D chest and am in sales in front of the public. I had to be careful not to be too bodacious and put anyone off and now I find it easier to dress with gentle cropped sweaters and light jackets to avoid a definite flat side profile. So either way I've been dressing around my boobs, now I don't have to wear a bra! 

Chrissy, I'm not a small lady either! I wear a size 16 and my surgeon thought I'd have trouble adjusting but I am very pleased all around. The thought of more surgery with the chance of lymphedema or infection, and more time off work just scares me.

I look slimmer and carry myself the same way I did before. I am still ME. Just without boobies. 

Wow, I don't feel like I dodged any bullet and I definitely feel like a breast cancer survivor!  I had my BLM with tram recon on 1/28/09. I get angry when people ask " so you're cured now, right?"  As if getting this diagnosis, amputating and totally rearranging my torso is something I can put behind me now that I am considered "cancer free". I chose to do this because it gave me the best chance. I will forever wonder if some little microinvasive component went unnoticed and will show up later.  My life is forever changed!  I am absolutely a breast cancer survivor and so are the rest of you. My mother chose to have a lumpectomy, radiation and chemo for her invasive cancer 16 years ago and she says it would have been much harder for her to take the route I did!

If someone lost their arm to bone cancer, but didn't require chemo, would anyone dare say that they didn't really have cancer?  And if they choose to wear the most realistic prosthesis possible, to help make their life more normal, would anyone question that?  Or if they choose surgery that replaces their bone with an artificial or donor bone, would someone say that they were too vain?  So why is it any different for someone who has DCIS and who's had a mastectomy?

Because DCIS is a non-invasive cancer it's sometimes questioned as to whether it's really cancer.  It's only Stage 0, after all, and some doctors call it pre-cancer. But there are other types of cancer that also are non-invasive in their earliest stage and there doesn't seem to be any question that these cancers are cancer.  So why is it different for DCIS?  The fact that we are made to question whether DCIS is really cancer is, frankly, absurd.  And just because we don't need chemo doesn't mean that we didn't have cancer.  We tend to think of chemo as being the norm for anyone who has cancer, but the fact is that many people who have cancer - many different types of cancer - don't require chemo.  Including myself, 4 members of my immediate family have had various cancers (breast, thyroid, prostate, melanoma).  None of us required chemo. 

As for the mastectomy, it is an amputation, and it is traumatic.  Because breasts for some reason aren't considered to be a "necessary" body part after one is finished with child-bearing, there seems to be a belief that it's easy to lose one's breasts. I see that written often even here on this discussion board.  Frankly, as far as I'm concerned, that's bulls***.  I certainly never considered my breasts to be unnecessary - for me they were a very important part of my sexuality and therefore, and a very important part of my life.   The fact that I had to lose one of my breasts to cancer pisses me off, even now more than 3 years later.  

And reconstruction isn't easy.  Whenever someone has the choice of a lumpectomy or a mastectomy, or a mastectomy or a bilateral, particularly if they are planning to have reconstruction I always warn them to be prepared for what lies ahead and I always tell them that they should be 100% certain that this is what they want to do.  You can have a lumpectomy and then choose to have a mastectomy.  But if you have a mastectomy, you can't go back.  Too many women go into their mastectomies & reconstruction thinking that it will be a quick easy process and they'll end up with perfect, better-than-ever perky breasts.  For a few lucky women, that's what happens but for most of us, reconstruction is the gift that keeps on giving, with changes that affect us for the rest of our lives.  And while those who have mastectomies without reconstruction don't face all the same issues, obviously here too the changes are ones that you will have to live with for the rest of your life.  This is no small deal.  It's a big thing. 

As far as I'm concerned, anyone who tells you that you shouldn't grieve or that you should consider yourself lucky that it was only DCIS and you "got away" with needing only a mastectomy, is a fool.  Yes, I know that I am lucky that my breast cancer was found early, but I am not lucky that I had breast cancer.  And I am certainly not lucky that I had to have a mastectomy.  Period.  End of discussion.

So in the end we each have to deal with this in whatever way is best for us.  Grieve the loss, because it is a real loss.  Accept that it might take a long time to "get over" this, and in fact, you may never really get over it.  You may simply learn to live with it.  For me, reconstruction was a must because I wanted to feel normal.  Even with reconstruction, every day when I get dressed and undressed I am reminded that I had breast cancer, but at least I can go through the day without feeling like I have "breast cancer" stamped on my forehead (or my chest).  That helps me feel normal.  It in no way denies the fact that I had breast cancer, but it helps me live a normal life without always feeling the shadow of breast cancer.  That works for me because personally I have no interest in being the poster child for breast cancer.  But that's me.  And my only interest is in doing what's best for me, both physically and psychologically.  I couldn't care less about what anyone else thinks of my cancer, my treatment, my decisions, and how I deal with it.   If someone thinks that I got away easy with only needing a mastectomy, it doesn't bother me and it doesn't cause me to question my feelings because I know that they are wrong. 

Here, Here Beesie!  I feel the same way.  My youngest sister basically said the same thing to me - that I didn't actually have breast cancer.  If I didn't have "real" breast cancer - where are my breasts?  Usually doctors won't remove healthy parts of your body.  Initially, one breast was going to be prophylactic but upon inspection in pathology it had DCIS too.

My reconstruction didn't work this time due to a bunch of complications and an infection.  But I will try again.  As I said in an earlier post - I want something that sticks out further than my stomach.

I proudly display a pink ribbon on my car that says "survivor" because I am.

I too, feel like my breasts were an important part of my sexuality and even though eventually I may have a reasonable facsimile - I won't feel anything.

I know I am blessed to not have to go through more treatment but a bilateral mastectomy was quite enough, thank you very much!

Everyone has to do what is best for them.  The only thing that matters is what you can handle.

Thanks - you do pretty darn good youself lady!  I love your courage to say how you feel.  For those of you who do not feel like a breast cancer survivor - maybe you can think of yourselves and breast cancer conquerors!

I wish someone, somewhere would find a cure for this!

Hmmm, someone is implying that I desire to be a "poster child" for cancer, not at all. I'm just confident in my sexuality and know that mounds on my chests, and ones with no feelings at that!, don't make me more of a woman.

I have often posted about the courage of the women who chose to get reconstruction knowing the pain and frustrations they may go through on their journey. I have not mocked them as trying to be "poster children" of breast cancer. 

My body cannot possibly go through the rigours of hours and hours of anaesthetic and healing. Do I envy the women this journey? No, I have accepted the fact that my cancer has been removed and thank God for that.

We will never have "normal" again. We have to move forward and create a new normal. My new normal has me without breasts. I am very happy that my psyche and ego, pride and vanity have not come crashing down to make me unable to continue to bring food to my table and provide a roof over my husband and mine's head. My husband has 3 brain tumours, I was lucky, I could cut off my breasts and keep working. 

I totally agree with every one of you!  I was diagnosed with microinvasive IDC.  Because my mom had DCIS with a lumpectomy and rads and then developed another IDC 8 years later and had a mastecomy, I chose a mast and felt comfortable with the decision.  At my 8 wk appointment (the first one) with the oncologist he told me my path report had been "revised" and that I now didn't have cancer.  Can you just imagine my horror?????  I started crying and asked him to repeat what he said and both my husband and I sat in disbelief.  He said sure I had DCIS but that upon review I didn't have IDC.  I asked if that meant that I had a mast for nothing and he said no that I would have had to have either a lumpectomy and rads or a mast.  The only difference would be that I could have kept my lymph nodes.  I said then how is it not cancerous.  He said it just isn't.  It is funny that the word carcinoma is part of the name.  What the heck does carcinoma mean if not cancer?  I did lots of research on the internet and found that some drs refer to it as pre-cancerous or non-invasive cancer.  I spoke with my PS and GS and they both thought that the oncologist was very insensitive about how he counselled me and they reassured me that it was real enough just not invasive, which to an oncologist is about as good as it gets.

I personally can not deal with this not being cancer, as stupid as that sounds.  I can not deal with the loss of a breast, that I too felt was a very huge part of my sexual being, if I didn't have cancer.  I can deal with it being non-invasive cancer, so that is how I've come to terms with it.  My husband understands how I feel now and no longer is quick to tell people that I don't have cancer anymore, but now tells them that I had non-invasive cancer.  It is the only way I can cope with the loss of a big part of who I was.  I feel blessed that it was caught at such an early stage but you are darn right I will call myself a survivor! 

Deirdre, I agree about that comment. It's as stupid as saying "I'm not defined by my legs/head/arms" Heck you fill in the blanks!

As females, we all run on emotions, feelings and thoughts. Forget the hormones at this point!

I cringe everytime I see a question like this post knowing that the responses are all going to be like they were the last time, and the time before that, and..... 

Baywatcher:  I'm so sorry you have gone through any of this!  Hang in there and as difficult as it is try to be kinder to those that love you - you are angry and rightfully so, but you aren't really angry at him (husband) you are really angry at cancer!   This entire stuff totally f__ks!  One day at a time is all you can do right now and hopefully, eventually, we will all be better than today!  Best and my thoughts are with you!  Hang in there!!!!

When I was told I had DCDS 2 years ago, the general surgeon (should have had a BS) told me it was DCIS but not that it was cancer or anything to be concerned about.  Never referred me to a specialist.  After reading up here, I am APPALLED that I didn't do anything.  I have been getting mammograms & MRI's regularly, but had no idea of the danger I've put myself in by not seeing a specialist right from the get go.  Last year I did switch to a breast surgeon when a friend of mine at work found out she had cancer (she is free & clear now after chem & radiation).  Last May after my MRI core biopsy (worst experience of my entire life) & then surgical biopsy found LCIS (no clear margins) in addition to the previous findings of ADH & DCDS, the BS recommended a PBM.  She said I didn't need to make a decision right away, but could think about it.  This month I finally decided I was ready to get it done!  I have an appt. the with PS on 3/12 at 1:00 p.m. & the same day 3:00 p.m. with the BS.  I still have a hard time thinking of myself as a breast cancer survivor because I didn't have chemo or radiation.  I have never seen a pathology report from any of the biopsies I've had (3 plus a core & needle aspiration).  I'm going to ask the BS for a copy of them at my appt.  I have no family history of breast cancer in my family.  I have been on Tamoxifen since September 2008 with no SE other than gaining 30 lbs. which I'm not sure is a SE. 

Roseg:  I have been reading and re-reading your post and I have a question - an honest to goodness question for you.. How do we avoid getting stuck on the recover journey?  I have done everything I can to encourage a "normal" life again and my feelings are not any where near "normal" and yet I don't feel stuck.  I know that everyone is different but you seem to have a particular idea of what "being stuck" means.  I am asking because if you can expand on how you thinks this is done it might help me and others here.. How do you discribe the being stuck - where do we get stuck - and then what do you do to avoid this?

Thanks in advance for your response.

D - I don't know how you avoid getting 'stuck'.

I think it's fine to ditch activities or people that post-cancer just don't mean anything to you. I had a couple of different friends/activities that went by the wayside during my cancer recovery and to be honest I don't miss them because they were at the end of their lifecycle anyway.

But I have other friends/activities that I have resumed after a little break because they're meaningful to me.

Really, we know ourselves best and have to be the ones to set our course.You have to be gentle with yourself. Recovery doesn't happen overnight, it takes a lot longer than anybody ever tells you n the beginning and longer than your friends/family ever realize.