DCIS and Recurrence???

Roberta2

I am completely baffled.  I had Stage 0 DCIS, I believe high grade, 6 years ago.  Went thru three lumpectomy surgery to obtain clear margins.  NO clear margins, therefore needed a masectomy.  I choose to do both.  NO chemo, rads, or tamoxfen.  Now, six years later, I found a lump.  Doc did needle biopsy and sure enough the fluid (no tissue specimen) showed cancer.  Doc said that "he is 90% PLUS sure this is cancer and further explained that he was telling me was, yes i do have cancer and there would be an extreme, extreme longshot that it is not."  Had MRI today, having lump surgery a week from Friday.  He said it could be a recurrence from the original cancer and an entire new cancer.  HOW in the world does this happen?  I mean I know how it happend, a missed cell, etc.  What I mean is how in the world did I go from early, early cancer, to having a masectomy and no need for further treatment to know I have cancer again.  Does this never END??  And YES for skeptic's DCIS is CANCER.  I prefer not to get into that debate.  Sorry, if I am coming over as angry but I am.  First cancer, I had already in my head expected it after years of benine tumors in the left breast (cancer was in the right)  but this time it has came as a total shock because i thought i was pretty much out of woods.

sweatyspice

It's my understanding that even with a mastectomy, there's a 1-2% chance of recurrence. Not sure what the stats are for a new primary, but I'd think also really low, since there shouldn't be much breast tissue left.  It seems like you drew the really short straw.  I'm so sorry.  And I completely understand why you're angry.

JewelTXakaLinda

Hugs Roberta!! Sorry to hear of the news.  I too had DCIS stage 1, Grade B, ER & PR pos., back in 2004.  I had lumpectomy with clear margins and did chemo, and 31 rads.  I too believe DCIS is cancer.  Cancer is Cancer no matter the size!!  I don't blame you for being baffled and angry.  I will be praying for you.

JewelTXakaLinda

Beesie

Roberta, I'm so sorry that you are going through this.  When the recommendation is made after a mastectomy for DCIS that no further treatment is necessary, this is because the risks that you would expose yourself to from the treatments (radiation, Tamoxifen) are greater than the breast cancer risk that you face after surgery. Unfortunately however, as sweatyspice said, even after a mastectomy for DCIS, there is a 1% - 2% chance that there could be either a recurrence or a new breast cancer - no matter how good a job the surgeon does, there will always be a tiny bit of residual breast tissue left, and breast cancer can recur or newly form there. 

I know you are angry - I would be too.  I know that anyone can be that unlucky 1 or 2 in 100 who has the recurrence or gets the new diagnosis, and while I always remind myself of that, I would still be royally p!$$@d if it was me.  Hopefully though it's DCIS again. 

Jewel, I am a bit confused by your diagnosis.  You say that you had DCIS stage 1, but DCIS is always Stage 0 - to move up to Stage I, there must be some invasive cancer as well.  In my case, I had only a tiny 1mm microinvasion of IDC (in addition to 7+cm of DCIS) but that moved me from Stage 0 to Stage I and changed my diagnosis.  Also, if you had chemo, that too would suggest that you had invasive cancer along with the DCIS because those who have pure DCIS don't get chemo.  Invasive cancer (IDC) and DCIS are often found together but when that happens, the diagnosis & treatment is based on the pathology of the invasive cancer and that seems to be what's happened in your case, based on what you've said.   

faithandfifty

Roberta, I send my empathy and support to you.

My first DCIS dx was in 3/07. I had lumpectomy followed by 33 rads followed by 2.5 years of tamoxofin.

My second DCIS dx was earlier this year in January. I followed that up with BILAT surgery.

We are indeed the pullers-of-the-short-straw.

I continue to pull short straws, but this is about you.

I just want to acknowledge your sense of anger.

Heartbreak. Frustration. You name it, you deserve it.

On one hand I was extremely fortunate to have DCIS for the second dx. We won't talk about the other hand.

We will be here, to stand beside you as you mount the experience for the second time. Older & wiser has been of some benefit to the entire journey.

I called my second trip, "Breast Cancer, The Sequel." Somehow, that made it laughable.

xx00xx00xx00xx00xx

Strength and courage.

Strength and courage.

Strength and courage.

sunnyhou

I can only imagine your anger. There is no rhyme or reason to any of this. Did you get good, clean margins from the mastectomy? I know there are cells left but what in the world? I am hoping this is DCIS again and it was just missed and they can take it out and you can move on. Albeit hard to do. Bless you!!.. I am sorry this happened.

In the words of my beloved father.. "life is so not fair"

please keep us updated.. and if you need to come here for support please do so.

xx

Roberta2

Thank you to everyone for your support and thoughts.  You are right, it is just the bad luck of the straw.  Does anyone know how they tell the difference of recurrence or new cancer?   I would assume reccurence would show it as DCIS but the confusing part for me is that DCIS is found in the milk ducts which I do not have any longer.  If new cancer, then it would probably appear to look different.  In fact, makes me wonder since I had a tram flap, is it possibl during surgery for some of the DCIS to been transferred by accident to the stomach area at all?  The other frustration comes from family/friends who know I had mastecomies, completely do not understand how i have cancer again....believe me, I have explained several times already and they just do not seem to get it.

Would anyone insist on their doctor have a MRI done like every two years after this?  And insist that they do some type of treatment (IF they do not think it is needed) chemo, rads, or meds?  I certaintly do not want this a third time for sure!!  I am over the docs saying early cancer, no treatment is necessary but now with another cancer, I feel they need to do something. 

Roberta2

Sorry, meant to include this....Yes, after mastectomy clean margins were made.

Anonymous

I have been waiting all week to get biopsy results and if they are positive I will be in the same situation as you, exactly.

As for how this could happen, one of the first things I'll do is get myself an excellent med/mal attorney. That's for damn sure. 

sunnyhou

that is a good question Roberta. I am sure someone with a lot more knowledge than me will come along but a guess would be that there were cells that were not removed. Perhaps there was an invasive component to your DCIS that was missed in the pathology. With that happening since they cannot get all of the breast tissue out even with a mastectomy then those cells grew into something that you could feel. This is totally a guess. I am struggling with the why not a MRI or ultrasound too.  Wonder what the reason is that they do not do follow up on us and send us on our way thinking we are done with this beast. Maybe you could send your mastectomy slides from 6 years ago for a second reading. This may answer whether they missed something. Also, I am guessing they will not know if it is DCIS again or something else until the pathology comes back. Very confusing.. I know you have to be so shocked and confused. So sorry!!

Anonymous

"Wonder what the reason is that they do not do follow up on us and send us on our way thinking we are done with this beast."

Really? Not me. They never stop following up. The following up is my second career.

sunnyhou

I was just told to have someone do a breast exam on me evey six months for the next two years. No MRI, ultrasound etc.

Anonymous

I have mammos and scans every six months, yearly MRIs, and yearly ovarian cancer scans (BC's evil twin). I could do with way less.

ladyod

Roberta2:  I am struggling to know what to say.  I am so sorry that this has happened to you.  I can only imagine trying to explain to others why over and over again....I am sure you are just as bewildered and tired of trying to sort it out for everyone.  All I can say is that I will keep you in my prayers and that you have caught this early so try to stay positive!

Stanzie

Roberta2 - I am so sorry, that is just horrible. I can feel your anger, frustration and fear. This shouldn't happen. I am confused when you say a lump. I may not understand this correctly but I didn't think DCIS formed lumps but is that because it is contained in the ducts?

I was and am still confused at being told - you're done, go live your life! I still want to find someone how will do somekind of checkups on my and make sure everything stays OK. My Mom had lung cancer surgery and even though chemo doesn't work well on that cancer they did nothing more. Even though she was told they were positive they got it all, a few cells remained and went to her brain. So, I do understand that it is easy and probably common not to be able to get everything but that is why at the least regular check ups should be done especially if the other treatments's risks outweigh the benefits.

Again, I'm so shocked by your new diagnosis. I hope you get compassionate doctors who will explain everything and that it is early and everything will be fine. I just can't imagine and my heart breaks for you. Try not to worry( well, try) and to stay strong and we all will be hoping to hear you get good news soon. 

kittycat

Roberta - I was dx with DCIS not even a year ago.  I found 3 small lumps in my right breast last week. I am waiting to get results (tomorrow... ughhh).  I also had a bilat mast. 

Did they tell you it was 100% cancer?  If not, you don't know for sure...

Roberta2

Kittycat:  They are saying the fluid taken (no tissue yet) was 100% cancer.  Based on this, the doc believe 90% PLUS (his words), that the tissue will be cancer as well.  Surgery, next Friday and then wait (UGHHH) on the results.

Stanzie:  Yes, DCIS is contained in the milk ducts but if there microinvasion or something that they missed then I guess it can come back as a lump later or it is a new unrelated cancer.

I am going to have to do further research but I thought the chances were something like 1 or 2 out of a 1000 of this coming back. 

gcpommom

My second bc was a new primary, unrelated to my original DCIS, for which I had a partial mast. and rads 5 years ago.  Had yearly mamms, no follow up with onc since I turned down tamoxifen and was done after rads.  New primary is TN, so the tamoxifen would have been of no benefit anyway, says onc.

Stanzie

I don't know what TN is. I haven't seen that before. Wow, this is all very scary.So gcpommom, how was your new cancer found by you or seen on mammogram.I saw that you then did chemo after mx - what do the doctor's say now?

Kittycat, I'm so sorry to hear about yours as well Zacsmom. Roberta2 - sounds like it is really good you started this thread as it seems needed unfortunantly. I hope you all get news soon and hopefully good or as good as possible . Yes I too thought the chances of getting another cancer was very low. 

Did any of you also have the LCIS?

Roberta2

Stanzie:  For me, no LCIS.  Just extensive DCIS with three surgeries to remove it with no clear margins, therefore mastectomy, had double.  After mastectomy, I was told they did get clear margins.

Jelson

Stanzie under waiting for test results there is a great thread that is frequently updated called abbreviations for newbies  http://community.breastcancer.org/forum/62/topic/735716

I just checked and it does have, tn defined as triple negative bc which means that the tumor is er-, pr- and Her2 negative.

FAITHANDFIFTY  thank you for dropping by our board and sharing your wisdom and experience. I followed up on your hints that something is amiss by looking at your recent posts, but since I can't figure out how to pm except to one person - I am sharing here my hope that your problems resolve soon and that you are back to your usual energy and spirit level.

Julie E

MCTHO

Dear Roberta: I'm sorry this happened to you. In 2006, I too, was diagnosed with DCIS, had a double mastectomy and started hormonal therapy including an oophorectomy in 2007. I also had mri's every six months. Imagine my shock when they found cancer in my liver, bones, and spine in July 2009! I thought I had did everything right! Anyway after taking chemo for three months and receiving herceptin every three weeks, I am in remission and feeling great!  Hopefully, you do not have spread, but if you do, that it is limited and you can have it treated and move on!                    

golfingb

Okay, I'm getting scared after reading the recent post of others. I, too, had DCIS and chose a DBL MX in 2/09. I had immediate reconstruction and was told I was cancer free.

Now, what do I need to do to make sure it hasn't returned? Do I need a mammogram with implants or can my doctor do a breast exam?? I was under the impression I didn't need to do anything since I had a mastectomy.

Anonymous

B9!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

sweatyspice

Congrats Zachsmom!

Roberta2, unfortunately it's 1 or 2 out of 100, not 1000.   Still, I'm just sooo sorry you have to go through this.  Again. 

Once was way more than enough.

mom3band1g

Zachsmom -YEa!  so happy for you.

I am surprised so many women have masts with no further follow-up.  My surgeon will see me every 6m for 5 yrs and then once a year for life.  Such a wide variation on the different Dr's.  I think I am glad my is so pro-active.

ladyod

Zach's Mom----I am crying tears of joy for you!  So, so happy for you!

Anonymous

Thanks so much, you guys. And my prayers for those continuing to battle this nightmare.

olivia218

Zachsmom - CONGRATS!!

Roberta2 - Hugs to you and praying for you!!

Olivia 

Stanzie

Thank goodness someone got some good news! So happy for you Zachsmom!

Sunnyhou - I was told the same thing . You're done go live your life! It was after that apt. that I fell apart as it didn't occur to me that I wouldn't be followed so I got and still am scared. 

Thank you for this thread and remindind us all to keep on watch - not like we could actually forget...

but you know what I mean.

gcpommom

Zachsmom, that is great news.

Stanzie:  I didn't mean to scare anyone, in fact, my new primary is totally unrelated to my DCIS, it is an entirely new bc.  I'm sure many DCIS patients do not get recurrences or new primaries.  TN is triple negative, meaning it is ER/PR/HER2 negative.  My DCIS was never tested for hormone receptors, so I have no idea what it was.  I found the lump myself.  I finished chemo last June, and have seen my onc once since then, I see him again next month.  They just like to assume no symptoms = no problems, but I am asking for scans just to keep an eye on things.  So far, I am good : )

One thing to remember when visiting these boards is that many of the women who have had no further problems with bc sometimes stop posting, so there could be tons of women out there who never had a recurrence or new primary, but no longer visit the boards and have moved on with their lives.  On the other hand, there are also women here who are doing well and still stick around to help newcomers to cope, so many wonderful, special women here.