If I read one more post saying DCIS isn't cancer

3monstmama, you're right, we can't know with certainty that all the DCIS has been removed.  But those who have a mastectomy have a 1% - 2% chance of recurrence, meaning that there's a 98% - 99% certainty that they've been cured.  Those who have a lumpectomy can have odds that are almost as good, depending on the diagnosis and treatment. Wide margins and/or radiation and/or Tamoxifen can cut recurrence risk down to the mid-low single digits for many (if not most) women with DCIS.  And here's the thing:  With DCIS, the fear & risk is for a local recurrence (which could be DCIS again, or could be invasive). For those who have invasive cancer, the fear & risk is for a local recurrence (which could be DCIS but more likely will be invasive) and a distant recurrence.  A local recurrence is treatable.  A distant recurrence eventually will not be.  So I think there is a difference.  I can't speak for anyone else but I know it's different for me.  I had a microinvasion.  My risk of distant mets is only about 1% but the fact that I face even this tiny risk puts my risk - and my fear - of local recurrence into perspective. 

You're right too that you can't know whether there is more DCIS in your breast (for those who had a lumpectomy) or whether there is DCIS in your other breast (for those who had a single mastectomy).  To me, that's part of the "not being able to trust your body" problem that we all face after a diagnosis of breast cancer, whether the diagnosis is DCIS or invasive cancer.  I get that, and I agree. 

I am not downplaying the very real fears and the very real impact that a diagnosis of DCIS has on someone.  But here's the thing.  There have been studies done that show that women diagnosed with DCIS and early stage BC consider themselves as likely to die from BC as those who are diagnosed with later stage disease.  Factually, that's just not true. The vast majority of women diagnosed with DCIS will not die of breast cancer.  There have been studies done that show that women diagnosed with DCIS and early stage BC over-estimate their risk to have a recurrence and their risk of being diagnosed again.  The fact is that most will not have a recurrence and most will not be diagnosed with BC a second time.  So while it's normal to feel stress about the unknowns and it's normal to worry about a recurrence or new cancer, I think it helps to have perspective. For me, perspective means realizing that the treatment and prognosis from a diagnosis of DCIS is not the same as what it is for someone diagnosed with more advanced breast cancer.  It was not a good thing that I was diagnosed with BC.  But I am grateful that it was caught early.  And when I was diagnosed and for the first couple of years afterwards, I reminded myself of that regularly, as a way to temper my fears.

Just my opinion.

10 mm = 1 cm.  You have 4mm margins.

If you had not had a mastectomy, you would not be done.   With 1 cm of grade 3 disease and a 4mm margin, you'd be starting radiation approx 6 weeks from surgery. I see that you are hormone positive, so after you finished rads, you would most likely be beginning 5 years of Tamoxifen.

But your disease was confined to your breast ducts and you removed the breast, so there's no tissue (or almost no tissue) left in which it can recur.

"Cured" is a pretty loaded word, but you're as close to cured as you could ever be.  I'm assuming that's why you chose a bilateral mx, so you could be "done" with this.  Now you've gotten there.

You've paid a big price in losing both your breasts, and now you need to process and mourn that loss.  Are you supposed to just get over it?  Yes, I suppose, but "getting over it" probably takes a loooong time.

If you were diagnosed on February 1 your mind is still in the whirlwind.  It hasn't even been two months since diagnosis!  I don't think any human being can go through what you have and be "over it" so quickly - give yourself a break.  You just faced down a cancer diagnosis and removed both your breasts, that deserves a bit longer to get emotionally comfortable with than two months.  I think you're having a normal reaction.

I just want to add one thing that Beesie said to me early on in my own recovery - it takes the BRAIN time to get use to the new body.. That was a "light bulb" moment for me...!!  My body had known the image of "me" to be a certain way for over 50 years and then there was a sudden change and two foreign elements were brought into the picture - of course it is going to take our brain time to adjust! 

Mom3:  give yourself time to grieve and then know that you did everything you could to protect your life and that is incredibly important!  Try not to look at the pre-cancer vs pre-invasive arguments for awhile - that will help as well..  Best, Deirdre

Greysean, Beesie, Sweatyspice, and the others have given you good, no, GREAT advice and words.....you are so new at this.  It does take a while to get used to the whole idea.  I am STILL getting used to it.  I was diagnosed 11/6/09, had two surgeries, and then had my BMX on 1/6/10.  I was so confused at my own feelings, sometimes even wishing at times I had gone through chemo- not to actually having to have the poison put through my body, but to be allowed to have the time to adjust/cope/deal with the whole thing.  Everything happened so fast, and it was such a whirlwind, there was no time.....and like they said, now you are grieving.

And you have experienced a loss.  A MAJOR loss.  When I first decided to go through with the BMX (to avoid the tamoxifen and the possiblity of cancer in the other breast), I was okay with it - but I was not prepared for how hard it was going to hit me a few weeks down the road AFTER the BMX.  I ended up feeling like I had gone through a war.  A battle.  And in reality, I had.  It was a battle against breast cancer.  (granted, it was the best kind of BC I could get, and I was very blessed that it was caught early, but it was still BC). But in this battle, as in every kind of battle, there is a price to pay in order to gain freedom.  For me, the price I paid to gain the freedom over the BC was the loss of both of my breasts.  The scars I have on my chests are my battle scars.  And I won the battle and the war.  Not only am I a survivor, I am a conqueror....and SO ARE YOU!!!!

blessings....robin

Ladyood:  I don't think your going to a counselor is overkill at all!  As a matter of fact I think that BEFORE anyone of us take our first step down this path we should be including a counselor on our "team of experts".  We are immediately issued a breast surgeon, onconlogist, plastic surgeon, radiology, why not a therapist so that we can process this loss out loud and have the most potential to getting back to "normal" (even if it is a new normal!).  It sounds like you have a great counselor too!!!  Best, Deirdre

Yes, I don't think it was overkill either....just another step to getting healthy!  And I am really glad that I did!  It was the best thing that I have done for myself next to the mastectomies.  Thanks Deirde and Olivia for the support!

Oh, Greysean - what you are feeling is so totally normal....what you are saying is exactly what I felt.  And you're right - because we look no different on the outside, everyone DOES expect us to just "get on with it" and act normal, as if nothing has happened - when, in fact, our whole world has just been shaken from the roots (and below!!).  I know, for me, I was having to be strong for my kids (ages 12, 17, 18), my husband, and my mom (who was an absolute basket case and lived three hours away from me).....I couldn't even deal with the cancer part myself.  The appointments, etc. and the "keeping everyone else together" took everything I had - that and continuing to work and trying to keep life as normal as possible. 

That's why, AFTER the BMX, I think when the grief hit - it really hit hard.  My time of "hitting bottom" was about 5weeks afterwards, but I'm sure it's different for everyone.  I think that's when the realities started hitting, and I started having time to process some of it.  Trying to keep in mind that I WAS grateful that it could have been so much worse, yet realizing I did pay a price...but knowing, too, that I had done my part (by having mammograms done faithfully every year!!).  I've always eaten healthy, never smoked, never drank....so I really couldn't blame the cancer on that.  I had survived some difficult pregnancies, and even one where everything went wrong - resulting in my having to have two pints of blood, and giving birth 16.5 weeks EARLY!!! Being hospitalized for weeks on end, and ending up with IV's in my ankles. 

And yet, some people escape without even having a simple headache their whole lives....hmmm.

Just doesn't make sense, I know.  And then, I read on some of these threads about women losing their lives to BC....and then, once again, I'm jerked back to reality, that IF I'm going to have to get BC, at least it was caught early, etc.,etc.  But of course, if given the choice, I wouldn't want it at all!!!!!!!

But Greysean, give yourself time.  You're just three weeks out.  And it's hard for you that you dont' have a spouse on which to lean.  You've got kids.  You lost both parents to cancer.  You need support in a BIG way.  Does your doctor have a behavior oncologist to recommend or a counselor?  Or is there a support group? 

I found LOTS of support online here at bc.org.  My husband was a wonderful support, as was my17 y.o. daughter.  (not my mom....)  The ladies here on bc.org were my support group and still are.  I also wrote a LOT!  My daughter set up a caring bridge for me, and I also journaled on my Facebook site.  Writing helped me deal with all of my emotions/feelings/questions/confusions, etc.  I know that doesn't work for everyone, but it did for me.

And prayer works wonders too.  I don't know if you have support in that area, or not.  But in the meantime, I'll be praying for you.  Try to rest and get LOTS of extra sleep.  Your body needs it to recover.....not only physically, but mentally....

take care......blessings...robin

HI...It's been two years for me......lumpectomy and radiation in the summer of 2008.....I have had all of the feelings and thoughts expressed by so many of you......

At first, I tried to explain what DCIS was (when I finally got a hold of it, myself), and explained that it was non-invasive cancer.....Now I just say I had BC.....It's so much easier....AND...It is so true that most people don't ralize that there are different kinds of BC....Even those who have had it.  I know at least one woman who has no idea of what her diagnosis really was, or what it meant....

I sometimes think the medical community does a  poor job of explaining all of this to woman.  I really had no idea of what was what 'till I found this forum,. fairly early in the game.  It was recommended to me by a nurse....

This is a place of total support, good information, and encouragement....We should all be thanking God for it.

Sandy from Cincinnati

HI...It's been two years for me......lumpectomy and radiation in the summer of 2008.....I have had all of the feelings and thoughts expressed by so many of you......

At first, I tried to explain what DCIS was (when I finally got a hold of it, myself), and explained that it was non-invasive cancer.....Now I just say I had BC.....It's so much easier....AND...It is so true that most people don't ralize that there are different kinds of BC....Even those who have had it.  I know at least one woman who has no idea of what her diagnosis really was, or what it meant....

I sometimes think the medical community does a  poor job of explaining all of this to woman.  I really had no idea of what was what 'till I found this forum,. fairly early in the game.  It was recommended to me by a nurse....

This is a place of total support, good information, and encouragement....We should all be thanking God for it.

Sandy from Cincinnati

I know this is a sensitive subject for everyone.  But I do have an explanation as to why some doctors do not consider carcinoma in situ an actual cancer:  the true meaning of cancer involves three parts:  1.uncontrolled growth of abnormals cells (which dcis does) 2. invasion into other tissues (which dcis does not) and 3. possibility of mestasis (which dcis does not).  Nevertheless, any carcinoma in situ has the real potential of becoming invasive and therefore doctors recommend the removal of the tissue to prevent invasive cancer and mestasis.  Even if it is not a "true cancer" because it is not invasive, it is a potential bomb waiting to go off and treatment is necessary.  After explaining this, I will tell you, I do not tell people I had precancer.  But I am sure glad it wasn't invasive

Thank you all of you! I cannot begin to tell you how much your words and kindness has meant to me and I already feel so much better just to know that other people understand and know what I'm feeling and I'm not being over dramatic.

I don't know if this is where I mentioned I have M.S. or not but I guess in some ways it is similar in that I am very lucky so far with M.S. and the treatments and exercises have worked so to look at me no one would know. However the unseen symptoms are just as real and just as painful but I am able to walk without assistance and can do what most people can do even though I get tired easily. So I think  it is the same when people are surprised you still look pretty much the same as before cancer then they aren't sure what it all means. 

I agree with the once person who said they just say they had BC - I think it is easier and easier for other people to understand. Those that know more hopefully and should be able to understand we were very lucky the DCIS was caught before it became invasive and most likely it is just when it because visible on mammograms. So saying it isn't cancer isn't right because I know women who had so much cancer history they chose to have mastectomies before they could get cancer and yes they also have plenty of emotional turmoil but to actually have had cancer growing in your body is just different. You do have to face mortality and if you have kids who can't take care of themselves it makes it all the harder even though kids at any age - no one wants to leave but then my sister's don't have kids and even facing the idea that something in your body could become harmful enough to kill you is huge and it does and will affect us. I just think in a lot of ways breast cancer is so hard on women first because it is their breasts  a huge part of feeling feminine and being able to feed babies - just totally emotional and totally a female pride and joy. Then if women have to have chemo - women like to look pretty and feel pretty and losing your hair is just horrible. So it is added insult and abuse that I do think is harder for women. Just an opinion as I can't say how men really think or feel. 

I just know whether a woman chooses reconstruction or chooses not to - her breasts that she has known all her life are not there any more. 

Anyway, I'm rambling as I have had very little sleep but I just love that women from all over the world who are going through such a difficult time can connect and feel such love and support. I am very grateful to all of you. Thank you so much.

I just joined this forum while looking up info on how long my seroma will last.  Of course when I joined I could no longer find that topic.  Anyway, I have had the opposite of your experience.  I had to drop a good friend of 35 years as she kept emailing me that my chances of reoccurance were high and I probably would die.  I had stage 0 breast cancer in situ. I have had 3 lumpectomies in order to get all the margins and then went through radiation.  I told my friend that I had a breast surgeon, a radiation oncologist and a medical oncologist who all check me regularly (every six months but I space the appointments so I see someone every 2 months and they all say my chances of reoccurance are about 3%).  When I told my former friend that her message was very hurtful and stupid to send eand that my doctors are all top rated, she told me my chances of reoccurance are high anyway that even excellent doctors can't catch all reoccurances early and she demanded an apology from me for telling her to bug off!  Has anyone else had someone who wants to be a messanger of doom in their life?  I am really upset that I had to drop such a long time relationship for my sanity.

BTW, the only surgeon, according to her, that I should see, I had already seen once, but I found out that she was not on my insurance panel.  That recommendation was helpful.....

You definitely find out who your friends are through this process, my friend of 20 years told me I deserved breast cancer after we had a disagreement.  I'm glad to be rid of her and she should be afraid of her Karma.  Flyingdutchess you are better off without that friend in your life!!!  Even if she was thinking it, why say it, people say such stupid things. 

Thanks for all of your supportive words.  I feel much better about my ex-friend's comments.  I thought I was the only one who was the victim of "well meaning and stupid" advice.  I only wish I'd found this forum a year ago when I was first diagnosed and feeling all alone.  By the way, in case anyone is wondering the flyingdutchess monicker is because my initials are KLM so when I first got married (ie acquired the M initial) my dad used to call up and say "how is my flyingdutches today?"