Emotional side of DCIS/mastectomy

Barbe1958, I was talking about how I would feel if I had not had reconstruction - I would feel like I was a "poster child" for breast cancer.  That's not something that I wanted.  The fact is that I've told as few people as possible about my breast cancer for the simple reason that I want to be seen as the same person that I was before; in most areas of my life, I don't want to be defined, even just a little bit, by the fact that I've had breast cancer.

I wasn't at all suggesting that being a "poster child" for breast cancer was your motivation in making your decisions and I was not saying that you are a "poster child" for breast cancer.  But if you are, I certainly don't think that's a bad thing - quite the opposite, in fact.  You frequently comment that that by going flat, you feel you are educating others.  Just in this thread you said "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.".  You've talked about being a "role model".  So while the term "poster child" might not be one that you feel comfortable with (and I understand that!), you have chosen to put yourself in a position where you are educating others about breast cancer.  That's great.

The fact is that however one chooses to deal with this is great.  If you are comfortable going flat, then do it.  If you want to talk publicly about your breast cancer experience, then do it.  If you want reconstruction or prefer to wear a prothesis, do that.  I think it's great if someone with BC feels comfortable educating others about the disease but no one should feel an obligation to do this.  There is no obligation that we even tell anyone about our breast cancer.  One way of dealing with this is not any better than any other way and we should never pressure anyone to make the same decisions we've made.  We all need to understand that and support each other in whatever choices we make.  And we each need to make the choices that make it easiest for us to deal with this.

As for promoting social change to make it acceptable to go flat, I think that would be wonderful.  But even if that happens, going flat will always be a sign of breast cancer - that can't change.  The fact is that it's not normal for women to not have breasts.  Women are supposed to have breasts - it's how we were created.  To not have your natural breasts is a sign that you are different. To not have your natural breasts is a sign that you've had a illness.  What's normal about that?  Ultimately I think that's why it's so hard emotionally to deal with the loss of our breast(s).  Losing our breasts separates us from everyone else out there.

This is a hard one for me. I had DCIS and lumpectomy/radiation. The lx and rads were to get my risk way, way down, and I thought I was well on my way when, a year later, I was dx with LCIS and ALH. So up goes the risk again and on I go to tamoxifen (after another lumpectomy). I could be a ticking time bomb or not. My kids & husband worry, but I had to make the decision in October to be. That's all, just be. I got back to the gym when given the ok, tried to keep job stress down. In January I started to train for a half marathon - an act of faith if ever there was one. And be.  

My mom had IDC 18 years ago. She ended up with a modified radical mastectomy and had all her lymphnodes removed from that side; no reconstruction. She also had chemo (a living hell for her).  Other than the lymphedema, which was either disregarded or misunderstood, she's done very well in the ensuing years.  She didn't do support groups and, I guess, just pushed her way through it. Mom's told us over the years that when she came out of surgery that she "knew" the cancer was gone and at that point began her recovery. I think that her diabetes dx a few years after BC has had a bigger long-term impact.

When I was dx, I had to be certain that she understood that it was my cancer, not hers, the treatment was mine, not hers, and the results would be mine, not hers, and that she had to allow me to get through it on my terms. 

When I was 19, my dad died. Too young, too sudden. We all learned then that grief was a personal and private and very different for each of us. I was a screaming wreck for about a year and was then able to go on. Took mom years to come close.

I don't know. Maybe what I'm trying to say is that some days you just choose to be present, some days to choose to be more. Mom and Dad always said love is a decision, and in some ways this journey is a decision, too. It takes time. One day you wake up and the first thing you think of isn't cancer. Maybe it's the 2nd or 3rd thing, but it's not the 1st.  And so it goes.

I didn't have a TRAM flap recon, but since my mx was unilateral I was sure that I'd have some sort of reconstruction. The first recon was a nightmare--implants encapsulated immediately. I actually inquired about autologous recons but was assured that implants would be just fine. Wrong.

I did have a 2nd recon w/DIEP. I know that the TRAM flaps are increasingly muscle-sparing, but I really wanted to have a procedure that would minimize the risk of herniation and lower back weakness. I'm really happy w/my DIEP and I've read numerous posts from women who have been happy w/their TRAM flaps. I wanted the least invasive surgery, though, and am very happy that I went w/DIEP.

Bee - I am with you.  It is normal for women to have breasts; although I saw a picture of Kate Hudson in People Magazine and I swear it looks like she had one - I know she didn't - she's just very small breasted!  After seeing her, I'm thinking maybe flat is not so bad!

I really don't have to tell anyone I had breast cancer - flat chested or not, my two sisters tell everyone they've met that their sister had it.  I swear my youngest can be waiting to use the ATM machine and bring it up with a total stranger also waiting in line.

Just the other day I went across the street to a neighbors to see her two border collies.  She asked me if I was the doctor.  I replied no and she would probably never see my sister since she works all the time.  She then said "oh, you are the one who had breast cancer?"

Now I realize that they were researching other case studies (personally, case by case), talking about something that scares them to ease their apprehension (having a materal grandmother and now a sister with breast cancer), they are worried about me, and/or just having a new topic of conversation.  I have, other than family, told two people - my best friend and a neighbor.  That's it!  Yet the world seems to know.  I don't mind at all.  I don't mind talking about it.  Heck, when I went through menopause I talked about it to anyone who would listen.

I think the days of hiding illnesses or natural processes should be over if not already.  My grandmother would never have discussed her menopause or her breast cancer.  I say bring it out in the open, discuss it, get support for it and move on.  I can't tell you how much support I've received from this web site.  There is nothing like someone going through the same or similar thing you are to make you feel that, at least, you are not alone.

Whatever decision anyone makes is the right decision for them.  God bless you all.

Well said, rose.

I don't think that we can  tell each other how we would feel if we were in each other's situation.  I cannot tell how I would feel if I had metastatic cancer because I do not.  I cannot tell how I would feel if I had a lumpectomy and radiation because I chose bilateral mastectomies with no reconstruction. Similarly, a woman who chooses reconstruction can't know how she would feel had she not chosen reconstruction. 

 I feel normal.  I don't feel like a poster child for anything.  The more time goes by, the more normal I feel. 

I just returned from surgeon's office for a one year check-up post BLM with reconstruction (in process) and I cried throughout the entire visit.  Going back to his office brought back overwhelming feelings of sadness and loss.  I want my happy self back.  I am so tired of being a whiny, cry-baby.  But, I still have months of reconstruction to go. 

I'm a whiny cry baby every time I go to see my breast surgeon.  I have been at my plastic surgeon's so many times for my reconstruction issues, so that has become like a second home.  Also, that place doesn't bring about such bad memories.  But when I go to my breast surgeon's, I take 1/2 Ativan too.  It just stirs all of my emotions.  It is an overwhelming fear and dread that I don't think I will ever get past.

Sometimes I feel like telling the "helpful people" who tell me, "oh good you got it early no chemo or rads it is not like really getting cancer", WELL I would like to tell them ....Yeah, I quess I should have waited a little longer to get "real cancer" then I could say I am a survivor! 

See how they answer that one!!

Actually, not that many people have been like that with me, mostly because I had breast tumors for so many years.  Lots of surgeries so I quess people who really knew me figured it was bound to happen.

But a couple days ago I got one of those of you should be soooo happy people in my face!  Now I wish I had said that!

Darn missed the chance!

Sorry had to vent, I don't even PMS anymore, thanks to surgical meno, but just in a mood today!

Dani

Great thread!   I've read all the posts, and am so glad to see others going through what I am going through as well.   Its REALLY hard to explain to people, and frankly, not worth the time to try.   So it gets a little frustrating being in our "lucky" shoes.   Until you've been in our shoes, you can't understand.

Dear ChrissyCA:

 You mentioned ACS hasn't found someone in same situation to talk to - have you tried to contact Y-Me organization? they have a new name now but if you search on y-me, it will come up - they have local chapters through the states and often have someone to talk to with very similar situation.  though this board is a great source so maybe you don't feel the need now.  this is a great thread - so much food for thought.

Hi Desdemona..I was just thinking exactly what you said about the "new normal" I have been thinking when will I feel normal again, but how can I ever feel like that when I have lost a very important part of my body..Yes I am happy to be alive, no I don't regret my decisions but when does the normal thing kick in??? Diagnosed with DCIS in Dec. Bilateral MX in Jan with reconstruction. I feel fine, but not normal... 

I am so glad that Chrissy brought up this discussion because I had felt so alone with my thoughts.  I too have experienced a roller coaster of emotions--feelings of anger, denial, fear, loss of my breast and grief.  I forever will miss my breast which was just as much a part of me as my arms and legs. I call what I had an amputation.  A man can be emasculated but a woman, what? I've decided a woman's body can be efeminated, new word. I am not the same person I was. I've changed.

I recognized DCIS as cancer immediately when my Gyn called to tell me and to say not to worry, DCIS was curable.  It was mid October.  I didn't have surgery until January. I couldn't move forward.  In Novemeber my beloved dog died, and I wanted to go with her.  I was thinking the worst. I didn't want to deal with cancer again.  My father died of cancer and two of my aunts.  I took care of my aunt until she became a parylyzed scull in a bed. Don't tell me about cancer, much less its curable, I thought. 

I consulted all the doctors I know.  Some said to do a double,"you don't need them anymore.  They've served their purpose."  I consulted numerous breast oncological surgeons.  One said to do a bilateral was insanity.  One said a bilateral was fine, a single was fine.  One wanted to leave the areola, another said that was insane.  I was insane and wondered if you could die from insanity.  I felt like I could. I wasn't going to do anything and cast my fate to chance.  My brother said he'd hate me forever and found a surgeon who knew what to do.  To save my breast, the surgeon said I'd need another sterotactic biopsy of another suspicios area.  It was close to the other area but it might be separate and then I wouldn't have a choice, which it turned out I didn't. A single mastectomy was recommened; the contralateral breast was a healthy breast.

After the patholgy came back, the surgeon said I was cured, only a 1 percent chance of recurrence--no more treatment, no oncologist, just come back for my followup yearly mammogram. I trust this person, how she helped me get back on the path to life and now I do believe in the word cure for early cancers. But I also feel like Houdini; I escaped.

This past weekend my husband and I went out to dinner for the first time  since my surgery with a dear friend who helped get me through this nightmare. She's a 10 year survivor. I wore my prosthesis. Somedays I wear my fluffy, somedays I go lopsided. I'm hopeful that someday I'll grow another breast :-) I am an optimist now.

The other day I learned of a company that is using autologous adipose-derived stem and regenerative cells for breast reconstructive surgery for women who have had partial mastectomies.  There are clinical trials underway internationally.  It's just a matter of time.

In the meanwhile, I am determined to redirect my anger to do whatever one person can do to help find the cause and cure of cancer.  I don't want to be known as a survivor.  I want to be a warrior first and foremost.  As my 97 year old mother said, you have to try to  make the best of it, do what you want to do,  do the best you are able to do.  That is all you can ask of yourself.

Wow Chrissy......looks like you got all the companions you were looking for! A Pandoras Box! I just wish none of us had to feel this way but obviously many of us do. I wish the medical community would get thier acts together and all be on the same page about DCIS. It is not right to leave so much wreckage without a good repair crew. I say GET ON THE SAME PAGE ALREADY! Really irks me about this. If they are screening for this routinley don't you think they would also all follow the same protocol when identifying a cancer and sticking to the facts of what it is? Pre this and Non that and even not at all? Phooyey! No wonder we can't identify when they can't get thier acts together on this. It's like a con on the loose skipping from state to state or province to province changing identities as he goes and will never be identified till everyone puts all thier facts together in one central database to identify him! (think I watch to much CSI??) Catch my drift???? Whew.......bit of a rant.

Yvonne, my sentiments exactly, you hit a chord here!

Bay...(((HUGS)))) sorry girl, thanks for sharing that, my heart goes out to you.

Deirdre...you ROCK!

Beesie.........my rock! Keep it on! You continue to amaze me with your words, support and soundness.

Rose......awesome outlook and strength......5 years....whoohooo

Robby, reading your post was like reading a mirror reflection of all the craziness I went through too.

Dani......the voice of calling a spade a spade......I love how you make the call!

Firstmate, you are not a crybaby, nor is anyone else a crybaby or wimp! I just about threwup my first time back and had a recall on the good boob shortly after MX surgery. I froze with fear because then, I knew what all the jargon meant wereas the first time I was blindsided and had no clue! I was DX'd after my very first mammo and was totally clueless of the path I was being led down. I sweat with anxiety having to go for another mamo which once again is soon due because my one year is here! Not looking forward to that!

I'm glad I have you ladies to share with. Theres many of us here and we need to educate and advocate and somehow get the message out to the medical community that their variences in words and language are not appropriate or condusive to their patients whom have cancer but are left in a wasteland of adjectives that aren't bringing closure for those who have suffered.

Am I on a rant?

Better say goodnight now!

As a person who had lumpectomy and rads, reading these posts by those of you who don't feel like "real" survivors is pretty surreal. My God, my little lumpectomy has been such a source of emotional and physical pain at times--I can't even imagine a mastectomy. As far as I'm concerned, I got the easy out. But here I am minimizing when I shouldn't be. I am a survivor. All of us have strength that no one else will ever really know. I just want to say how much I admire all of you for the strength you bring to this forum. 

 Ace