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

I had to jump in and say I couldn't agree more!  I, too, don't discuss it with anyone anymore either. I can see it everyone's eyes when I start to remotely talk about my feelings. I KNOW they are thinking "omg...c'mon....you didn't have chemo...you didn't get sick...you went on with your day to day business"... and on and on.  

Sooo....I come here and end up venting and I hate keeping it all bottled up inside me until I think I'm going to burst.  Please don't take this wrong...I don't want a pity party and I know I'm blessed...for the moment....but, this DCIS has been down played so much, it has put me in this mentally anguished position.  I can't tell anyone that I'm scared as hell....I know this will more than likely become invasive one day...mine is a Grade 3...right next to the chest wall...and I have decided not to take Tamoxifen for what I feel are legitimate reasons. I had the first stage of cervical cancer in my early twenties....and was diagnosed with Lichen Sclerosus about five years ago....so I'm not willing to risk anything to do with my uterus.  

Anyways...I just want to say THANK YOU to all of you....this is my place to come....to feel sane...to feel understood....you don't know how much it means to me.

Cherylmarie

Your title said "If I read one more post. . . " which suggests to me that you're talking about posts on this board??  If so, then I imagine people here say that because 1) they're still  new to this and they don't understand what DCIS is or why it's cancer; 2) they have cancer that is much worse than what DCIS is (because yes, of course, DCIS is cancer but it isn't, thank god, life-threatening in the way invasive cancer is); 3) they are just ignorant or insensitive.  I think I can handle people in the first and second categories.  I realize that they are as scared as (or more than) I am and their response probably has to do more with what they think about themselves than about other people with DCIS, especially those who, like you, have to lose both your breasts.  The third category--well I don't know. 

I do know that I will probably have lost about 6 months of my life to this disease.  My teaching has gone to hell in a handbasket. I have no concentration so I can't write (except on this board ). I have had to cancel 2 big trips (one to Europle).  My husband and I live in constant worry, stress, and fear of the unknown.  Of course I am grateful that I have not had to have a mastectomy, but I still feel like I have lost a lot.  And if I didn't lose all that to cancer than it really sucks. 

I guess in the end, most of live within our skin and what we obsess about is what is relative to us. I was ecstatic when I heard that there was no invasive component in my DCIS.  But now I am down because I'm pretty sure I will have to have a re-excision.  It makes NO sense.  I should be happy, happy, happy.  And I keep telling myself that.  But I am bummed.  I don't want this to drag out more.  I don't want to face another surgery and another set of pathology results.  I KNOW this is not a big deal compared with what a lot of other people are dealing with.  But it is what I am dealing with: it's my own personal face of cancer. 

You are losing a lot.  A lot more than I am.  Maybe not as much as people who have to face chemo and worse.  But it doesn't mean that it's not a huge loss.  And anyway it's YOUR loss.  No one else can understand what you feel. But it does seem to me that people on this board (especially the DCIS forum) are as close to what I need as I can find.  Everyone here really does get it.  So this is just me saying I know you have cancer and I know you are facing a loss and I know you want your life back.  

You know, I don't even tell people I had DCIS unless they ask, I just say breast ca. Most people don't even know there are different types of breast cancer, even women who have had breast ca! I too don't like to be told I only had pre-cancer, I hate that statement. I do like the statement "my own personal face of cancer", I think that describes it very well.

DCIS plays huge mind games with us. It is full of uncertainty and doubt. It makes strong people cower in the corner afraid of their own shadow. We are a unique group here on this forum, just like the stage 4 ladies ,no not comparing there treatments and what nots, just the fact that they are unique to their trials and tribulations, we too are the same. 

So stay strong ladies. Those that belittle you for being "only DCIS", you don't need them. You need people who will fully support you no matter what your diagnosis. 

HATE that comment too.  If it isn't cancer how come I had to face all of the fears, lose my breasts and be dealing with surgeons for over two years?  How come I had to deal with sooooo many complications in healing?  Like someone said, yes we are blessed but the mental anguish that we have with this disease is all mind boggling and can put in deep dark places.  I agree that we are blessed, but I have suffered in so many ways nonetheless.  Hugs to all the people on the DCIS boards that truly understand my feelings when no one else does!

I've dismissed the cancer/not-cancer desigination and gone with the "it's something that must be removed" reasoning.To me the finer points of the yes/no mean little because no medical professional will recommend you don't do anything.  I hope that someday they'll know more and that will be the recommendation for some women.

I also cut the brown spots out of apples before I eat them! 

When I went to the surgeon to get my results from the stereotactic biopsy,(the results were DCIS and LCIS with the LCIS behaving like DCIS so it should be managed as such) one of the first things the surgeon said to me is "you don't have cancer" but she went on to talk about treatment and how they treat DCIS just like they would cancer. She also had me go for an MRI. I go back to her tomorrow to get the results of the MRI. The treatment she discussed with me is a lumpectomy, radiation, and tamoxifen.

 I am SO CONFUSED. I'm told I DON'T have cancer but I'm being told about treatment that would be for cancer and I was given a booklet from the nurse in the surgeon's office that's called "Understanding Breast Cancer" and in it DCIS is listed as stage 0 breast cancer.

I've read so much information about DCIS since being given my diagnosis. If it sounds like I'm rambling please forgive me sometimes I don't explain things too well and I'm feeling so overwhelmed with all the reading and research I'm doing since being diagnosed.

P.S. my pathology report lists my DCIS as having solid and cribriform types with intermediate nuclear grade and moderate necrosis, measuring 0.5cm so I'm "assuming" intermediate grade would be a DCIS of grade 2? 

dsj..i just read your posts with lots of emotion and only wish i knew of this site with my first diagnosis in Jan 09.  I was told "we really think it is nothing but we need look further"  That was the start of my story...and although"just" DCIS and 2 surgeries and radiation and a second diagnosis 11/09 on the other side and more surgery...i still cant believe this is my life!!  Yes, i am fortunate that it is not more agressive and i am sooo thankful for that...but my whole life has changed and i really wasnt prepared for it.  My BS said it best when i walked into her office for a checkup and cried.  She said .."it's a very normal reaction...someone stole your good health from you and you are returning to the scene of the crime!  She was right!!  Even though it could be worse....it is just over 1year for me and i have seen more dr's during this time than I have probably seen my whole life.  Having said that...i have stopped working and i must say that i am enjoying the time i have at home with my family....i never had that before..I am stronger now and know that i can face the obstacles that my life may present me...maybe i didnt wnt to be sooo strong but it's good to know  i can be!!!    I am routing for you and know you will come through you the other side of this stronger too!!!!!  

The thing is, the not calling DCIS breast cancer is really not new.  The co-worker who made the comment to me had been told that by her doctor when she went through this ten years ago. Thats what she told me the first time we talked.  What is frustrating to me, is that ten years later, no one seems to have come any further in figuring things out. 

Or maybe they have---as in grade 3 meaning more likely than not eventual invasive--but they still don't know how to explain it to us at the time of first diagnois.  If there are different kinds of DCIS and thats the differenc, then why not just say from the beginning, we don't know until we get the results of your biopsy.  It would make it a lot less rollercoasterish if you ask me.

So where is this post?  Should it not be reported if it was so inflamatory or was it reported?  No one has the right to put down another group on the boards.  If it was done without malice then an apology is due.  If was done in malice, it should be brought to the attention of the moderator.

Welcome Dreamwriter -

I think JAT is right, it is not the DCIS posters who say DCIS isn't cancer, - and I would go further - it is not posters on BCO period. It is that the medical community says it to women diagnosed with DCIS and sometimes "friends/family" there are many threads here on the DCIS griping/ranting about this.

I ask Kathy, the original poster to clarify what she meant in the subject of the thread - I agree it could be interpreted as posters on BCO saying DCIS isn't cancer, when I don't believe that is what Kathy meant.

Julie E 

Kathy, Rest assured you are feeling the way ALL of us have felt and are feeling.  I was diagnosed with DCIS in November.  My surgeon DID call it cancer!!!  They handed me all kinds of BC stuff and a pink blanket of hope, etc.  However, when I visited two different oncologists, both referred to it as pre-cancer. I told them my BS had called it a cancer, and they both said my BS was wrong!!!  And my thoughts were the same as all the other ladies above  -  I'm going to lose my breasts to something that's a "pre"?!?!?  I don't think so!!!!

Yes, my breast was full of DCIS, but it wasn't invasive....yet.   It might never become invasive, or it could in another year.  Who knows?  But I really wasn't going to wait around and find out.  Now, I'm "Robin-no-breast"....sometimes happily knowing my risk of BC is virtually nill, sometimes sadly knowing this may have been done unnecessarily.....but I will never know this side of Heaven.  (and on that side, I won't care!)

I have in all my reading, that it is equally called cancer as it's called pre-cancer.

So, do I tell people I had pre-cancer?  nope.  Do I bother to explain DCIS?  nope.  They just know I had BC, and that my 3rd surgery was a BMX.  They know it was non-invasive and that it was caught early...and that the nodes were clear, and that I do not need chemo or rads.  They also know my cancer was caught during my annual mammogram - which has caused more than a few women friends to get their past-due mammo. caught up!  Mission accomplished.

Know that my thoughts and prayers go with you...stay strong these last few days, and also do your share of crying and grieving if you feel the need ( I did). I also had my husband take headless pictures of me since I would never see my breasts again (even though my left side was mutilated from the previous two surgeries)....I'm glad I have those pictures of my old body tucked away.  I've only needed to look at them one time during the last two months since my BMX, but I'm surely glad I had them.

blessings..robin

So I got my MRI results back and it didn't "pick up" DCIS anywhere else in my right breast (although there is a small amount of residual DCIS at the biopsy site). Now the left breast shows an area of concern that didn't show on the original ultrasound.The report reads that there is a poorly circumscribed 6 mm early and markedly enhancing nodule, demonstrating washout, and suspicious for malignancy. So I've scheduled a 2nd look ultrasound with core biopsy for March 26th.

I had an ultrasound done on the same day as my last Mammo because of a lump I had found a month before...YES I waited until I went for my scheduled mammo to tell them about the lump....SHAME ON ME. Although when I asked the surgeon if the area of concern is the lump that I felt and she said no I wouldn't feel it because it's so small and then she drew a dot the size of 6 mm.

The surgeon mentioned that we could still look at a date for surgery (DCIS) but I told her I wanted to get a 2nd opinion. I DO have an appointment on April 7th setup for a 2nd opinion regarding treatment options. Did anyone else go for a 2nd opinion after being diagnosed?

On another note....has anyone found a website that helps us to decipher our reports?