My understanding is that although it happens (and happened to a friend of mine) it is quite rare to have cancer in both breasts at the same time.    Now, having it on one side does raise the chance of getting it again (either on the same side or the contralateral side) by approximately (according to my oncologist) .5-1% a year cumulatively, although that risk supposedly tops out at about 15%.

Beesie -

Sorry to hijack but I had a question for you - you mention 22% lifetime risk being "on the edge of high".  Do you know what would be considered a high risk?  Just curious, as I think I fall into that - according to my oncologist my lifetime risk would be in the 35-40% range (includes new primary and/or recurrence), which is why I said yes to the Tamoxifen when it was offered, LOL.    He was very non-specific about what the numbers meant (i.e. didn't label anything as high, moderate, etc.).   Just gave me the numbers and said it was up to me.

I'm not sure I believe him, as I've seen many different theories on this, but he said that having breast cancer adds about .5-1% a year (topping out at 15% lifetime) to your base risk, which in my case based on other factors such as age, early menstruation, family history, etc was 20%.  Risk of recurrence of this cancer following lumpectomy, rads and tamoxifen is about 9%, so if you add it all together, that's where I get the numbers.    Remember though, I had a lumpectomy, not a mastectomy so I've got the risk of a second primary in BOTH breasts, which may be part of the difference in numbers between us, as I see you had a mastectomy.

I'm not really concerned about it though as I really don't think the "science" of predicting risk for an individual is all that good.   After all, despite that 20% lifetime number, my chance of getting it at the age I did was supposedly only 1.7% yet it happened.    I figured that even discounting the risk of a new primary, the recurrence risk of the current cancer justified Tamoxifen, and I have no interest in a prophy BMX regardless of the risk numbers, so I haven't questioned him too closely about it as it really doesn't change anything.  

Beesie - I like your numbers better! 

I have heard that it is "better" to be Her negative, as less aggressive?  However, it is a mute point when the tumor is dcis.  I was er-pr- and Her+++, but since it was dcis with no invasion (with a presentation of Pagets disease) I was not ordered to take Herceptin.  This, from what I have read, is an amazing drug that is given in increments of 3 weeks for a year for those that have invasive forms of breast cancer that is Her+++  Since I was er-pr-, I do not take Tamoxifen either.  Negative receptors are considered more aggressive, but again since my tumor was dcis without invasion it doesn't really matter.  I go to Beesie's post under the DCIS forum what DCIS is and isn't even today.  I sometimes need that reassurance even though what I have just said was supported by my surgeon, breast health nurses and oncologist.  I did opt for the BMX after Pagets was found because, for me, it was the only real option because of my worry and all other things considered for me personally and my individual markers, etc.

Hope this helps?

xo Danielle

Hi there!

Let me try to answer your questions in order.  (:

What is Paget's (and then some)?  Pagets is cancer of the nipple.  It is very rare accounting for only 1-3% of breast cancers.  I did notice some itching, flaking, burning, irritation, etc. for about a month or so prior to my annual mammogram, but my GYN didn't think it was cause for alarm (usually isn"t) and to try cortisone-10 for a bit.  I did seem to help, so I did not think much of it.  However, when my mammogram showed microcalcifications, followed by a diagnostic mammogram, u/s and stereotactic biopsy--I really started to worry there was more than DCIS.  I was to have a lumpectomy with SNB followed by radiation on Feb. 5 of this year.  I begged for them to do the punch test while I was under for the lumpectomy which they agreed to do (but no one thought it looked like pagets--no once was concerned-just me---but SO glad I was persistent!!!  So happy and grateful for my medical team, but when you feel something in your gut--you HAVE to advocate for yourself!)  In my case, they feel the Pagets was directly related to the DCIS.  They feel somehow the DCIS traveled thorugh the duct and began to spill out on the nipple.  Thankfully---NO evidence of microinvasion at all--not from lumpectomy or from ultimate BMX.  I had the BMX due to the Pagets, along with another lymph node removed because it looked a little swollen to the surgeon. ****Just so you know I was, as you, a nervous wreck--cried ALL the time--finally got an antidepressant just to help out.  I truly, truly recommend that.  But even though I had a large area of High Grade (3) DCIS with comedonecrosis, er-pr---they DID NOT find an invasive component.  I am very lucky and I so hope for that result for you too.  Do read Beesie's post under DCIS forum for Laymen's terms for DCIS this should help you with more information, etc. even if a microinvasion would be found.  We are both very lucky that the dcis was caught by a routine mammogram, by microcalcifications, that is a very good sign that it is in fact, very, very, early and very, very treatable.  I know it sounds like I am the teacher from Peanuts and you hear blah, blah, blah--because that is what I heard.  It is so hard not to go to those dark places.  It is impossible to tell you not to or don't--we are human beings with REAL fear during a REALLY scary time.  But I do suggest the medication, asking for help here, from friends, from family.  I didn't know what I needed--but I guess when someone was just there to listen.  Let yourself feel--because it is helpful.  Like I said, I cried--A LOT.  I really am a teacher and there were times I just couldn't keep a straight face with my second graders and had an even harder time with my 11 year old daughter.  My husband just got the full on tears!

Friday, January 3rd appointment--Bring someone with you so that they can hear what the doctor is saying--again I heard a lot of blah, blah, blah and it was great to have that extra set of ears.  Write down questions.  Write down their answers.  NO question is a dumb question.  The best thing my breast health nurses said to me were--remember this is our normal, not your normal.  They understand this is our bodies, our emotions, our wanting guarantees and the best possible care.  They understand we want and deserve real answers with guarded, but blessed optimism.  As for pre-surgery plans--they did a bilateral mri--this test showed that it supported the dcis diagnosis, no other abnormalities were seen, but as you know they cannnot give final pathology until then.  But it IS a piece of mind.  My arm hurt at the injection site.  But doable and I did listen to music in that thing.  My surgeon was awesome.  He was very sorry that he was wrong about the Pagets and was sorry that I had to go through two surgeries---but I was willing to do what I had to do and it was just unfortunate, but I just look at it that my treatment came in parts.  (:  I am sorry to hear about your aunt!!!!!!  My mom is a bc survivor, too! (Yay to our mom heroes!!!!!!!)  However, she had stage IIIc IDC.  Hers was advanced and aggressive, but she kicked cancer to the curb and is doing excellent today.  She was diagnosed at 65.  I was diagnosed at 42.  Her markers were er/pr+ and mine were er/pr-.  The doctors think were were just sporadically unlucky and that is quite an understatement.  I did do the BRACA testing, which was negative.  (thankful).  I do know that they had said had it come up positive, we may have other conversations such as ovary removal--but it didn't come to that and they said it would be a conversation, not a guarantee.  I would suggest the testing if they offer it, just so you have another piece of information.  I will be going to the plastic surgeon on January 3 to take out the final stitches of my nipple reconstruction that was on Dec. 13.  My annual mammogram was January 3, 2013 which led to all of this and my last stitches will be taken out exactly one year to the day later.  What a year!  I mention this to you, because even though it has been long, I am in a great place today and you will be too!!!!  *sorry to hear your mom has to deal with lymphadema.  I did not have a problem with that (I had a total of 2 nodes removed.  My mom does not either, and she had 17 removed)  More stuff was found in my final pathology of benign nature:  sclerosing andenosis, lobular atrophy, focal microcalcifications in my right breast.  All benign, but glad they were gone!!!!

Reconstruction:  I did meet with the plastic surgeon the same day I met with the surgeon for the second consult for the BMX.  I love her!  She has a great demeanor and I appreciate all that she has done for me.  My surgeon and PS worked in tandem after they removed the left side.  I had immediate reconstruction with tissue expanders put into place.  These were filled over several weeks.  I went into surgery as a DDD, left the hospital at about an A, and stopped at a C.  BMX was Feb. 21, 2013 and exchange surgery was May 30, 2013.  I did implants.  I could not have a nipple sparing bmx due to the Pagets.  I decided, with much reflection, to have my nipples reconstructed.  This is done by a skin graft and remaining breast tissue (even though you have little after a bmx, there is still some)  Stitches come out in two days!!!

other thoughts:

1.  I slept in a recliner for several weeks.  This helped with the drains (didn't love those) after surgery, but remember they serve a very real, and very importand funtction.  So if you have a recliner, I would suggest it.  My husband and daughter were very sweet and would sleep in the living room with me a few nights.  Ask for help for those drains.  I could not look at them or my scars for awhile.  It's emotional, won't lie.   My husband and mom helped me with those, until I could.  (about 4 days).

2.  Know that your body may change---but you are not.  All the wonderful things that make you you will still be there.  For me, I learned a great deal of things about myself and great lessons.  That was a fringe benefit.  NOT the way I wanted to go about it, but listen to your heart and with both ears open.  (:

3.  Know you are strong and wonderful.  Know that you will get through this!  Ask for help!  When people offer, take it!  It's hard to ask for and accept help, but it really is okay!

ANYTHING else I can help you with PM me or continue asking on the thread.  I do want to do anything I can do to help others as others on this board have done for me!!!! (:

xoxo Danielle

Pure DCIS is always Stage 0.  

Lots of women on this board don't record their diagnosis accurately.  It's annoying but there is nothing that can be done about it. I've see so many women with DCIS react with confusion and real concern when they see these errors and
think that what they are reading as being someone's diagnosis is what really happened.

About 80% (or more) of women who have invasive cancer also have some DCIS.  So what they have is a combination of DCIS and IDC, which makes the official diagnosis "IDC" and put them at Stage I or higher.  Unfortunately some women with this type of diagnosis record their diagnosis as being DCIS, even though it should be recorded as being IDC.  Anytime you see "DCIS Stage I" (or any stage other than Stage 0), you can be pretty certain that the diagnosis was really IDC and not DCIS.  Similarly, if someone says that they had DCIS but also mentions that they had chemo, you can be certain that they did not have DCIS, because chemo is not prescribed for Stage 0 DCIS.

The person who's diagnosis line you copied and pasted in your post clearly did not have DCIS since she indicated that she was Stage I.

I'm currently 2.5 years from dx. While I never completely 'bought' the idea of cured, secretly that was what I had hoped. One year after my previous post, I'm still here and have no symptoms. It would have been more accurate if the oncologist had deemed me 'clear'.

Thanks for not bursting my 'cured' bubble. I'm much more realistic now.

I would like to clarify that I was diagnosed with invasive and aggressive triple negative breast cancer in 2012. The odds didn't seem good at the time, but so far,. I'm still well.

Congratulations on your good news and continued good health!  Could I ask why your diagnosis line only lists DCIS, when you were actually diagnosed with "invasive and aggressive triple negative BC"?  That is very misleading and anxiety producing for ladies who come to this DCIS board.  Is it possible to change one's Dx line? 

I have had a lot of thoughts about "cured" as opposed to NED.  I had a tiny microinvasion in addition to DCIS.  My former oncologist said "We never consider breast cancer to be cured".  My current MO, the head of the dept., agrees with me that early BCs, if they are removed and haven't spread before they are (which one will be sure of only later), are, indeed, cured, and that if you get another in the future it is a new one.

when my doc called me cured, I was shocked and said I did not think that happened.  She smiled and said sometimes.  But I prefer to act as it I am NED and continue to practice my complimentary things such as exercise and nutrition as I think it helps to keep me NED

Ned.... Is that no evidence of disease?