Lightning (DCIS) strikes twice.

cat24
cat24 Member Posts: 211

I was diagnosed with Atypical Lobular Hyperplasia and LCIS from an ultrasound guided biopsy on 9/17.  I had an excisional biopsy last Friday and got my pathology back today.  My old bugaboo DCIS was found.  I just had a right MX with Tram flap reconstruction January of this year.  I meet with the doctor to discuss options tomorrow.  I really wish this had shown up before my surgery earlier this year.  It's kind of a twilight zone experience to have to go through this again.  I guess the news could be worse, but this is so surprising - to have this again so soon.  My mammo and MRI were clear just 10 months ago.  Anyone else have a recurrence of DCIS show up so soon?

«1

Comments

  • kelmo2013
    kelmo2013 Member Posts: 66
    edited October 2012

    I was diagnosed on Sept. 3 with DCIS grade 3 in my right breast.  I am so afraid of this, that I am opting for a double MX.  My surgery is Nov. 2 and I really didn't doubt my decision, but this really confirms that I am making the right choice.  I am having the expanders put in at the same time.  Did you have to have any chemo after surgery?

  • NSJ2
    NSJ2 Member Posts: 227
    edited October 2012

    So very very sorry for the news, Cat.  Is this new finding in your left breast?  I also didn't know that ALH and LCIS was actually considered "DCIS".

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    This post was confusing to me too - ALH is hyperplasia, which is atypical cells that are not yet malignant, LCIS is lobular carcinoma in situ, and DCIS is ductal carcinoma in situ - 3 different things.  The ALH can become LCIS, or ILC, but not DCIS.  Atypical ductal hyperplasia (ADH) can become DCIS, or IDC.  You can have all of these things in one breast but the ALH and LCIS wouldn't become DCIS.

  • Letlet
    Letlet Member Posts: 1,053
    edited October 2012

    She had 2 biopsies, the first ultrasound guided one showed LCIS, the excisional biopsy showed DCIS.



    Is this on the other breast? The non mx side?

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Letlet you have it exactly right.  Two different biopsies on my left breast - the "real" one.  The excisional biopsy only showed DCIS.  No LCIS, no ALH.  He said the different results may be because the first biopsy just had little pieces, compared to him taking out the entire mass. 

  • jmemama
    jmemama Member Posts: 18
    edited October 2012
    kelmo2013 I had a BMX for high grade DCIS on August 31. I did not have to have any chemo or rads and all the cancer was stage 0. Just wanted to give you a little bit of hope that it will be okay. I had TE's placed after surgery and my reconstruction will be sometime next month. Never for a second do I or will I ever regret having a BMX, even thought the cancer was only on the left side. I'm a 37 year old stay at home mommy with a 3 year old and a 7 year old and I have no regrets. Best wishes.
  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    Thanks for the clarification, this makes sense now!  This is not a recurrence, correct, but a new primary in the other breast?

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Yes, a new primary.  I had a feeling the excisional biopsy would show DCIS.  Before the diagnosis on the right side, I thought something looked a little funny about my breast.  I just couldn't put my finger on it, but the DCIS was in the spot that looked funny.  Now about a month or so ago, I thought my left breast was looking similar to how the right had looked. No, couldn't be, so I put it out of my mind.

    Now people might find this weird, but I have a cat that usually never comes around me too much.  Before I was diagnosed with DCIS the first time, the cat insisted on climbing on me and rubbing against my breast or lying on top of me.  Ok, here's the kicker after I thought my breast was looking a little funny, the cat started coming around me again and doing the same thing. I don't want that cat to come around me any more lol.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    cat24 - have your docs given any indication that this stuff was in the other breast all along undetected?  I had ADH and ALH in my "prophy" breast at BMX post-op pathology and it was never seen on mammo, US or MRI.

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    I think my doctor may be thinking that, but who knows.  I was bad and NEVER had a mammogram until last November and I was 52.  So, mammogram and MRI from past Nov/Dec were clear.  They checked before the final recommendation was made for mastectomy because of the wide-spread high grade DCIS.  Nothing at all showed up on the left side, but they said I do have very dense breasts.

  • NSJ2
    NSJ2 Member Posts: 227
    edited October 2012

    Hi Cat

    Again, so very sorry for your news.

    Regarding the dense breasts, does either your recent or earlier path report list you with dense breast tissue as a listed item?  I read somewhere they include that in the paths.

    Also, have they indicated how big this new DCIS mass is?

    NSJ2

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited October 2012

    Mammograms are the technology that defines breast density (sometimes MRI, but not always) - pathology only examines the cells - not the overall breast tissue, so the pathology report would not have this information.

    Breast density is usually measured during regular screening mammogram and there are 4 levels:

    1) Entirely fat

    2) Scattered fibrogladular densities

    3) Heterogeneously dense

    4) Extremely dense 

  • NSJ2
    NSJ2 Member Posts: 227
    edited October 2012

    Thanks for the clarification, BL. You're so right regarding it showing on the Mammo report.

    My breasts fall into category 2 (scattered fibroglandular densities) that as you said, show on my mammo results. It also shows on my MRI.

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    NSJ2 I think it was the mammo tech who mentioned that my breasts were very dense.  I don't think the mass that was removed this time was too big.  Definitely smaller than last time.  I think I will stop by the medical records office at the hospital on Monday to get my pathology report to add to my collection.  I see my plastic surgeon on Monday - they got me right in.  I think I will be having surgery in the next couple of weeks.  Just want to get it over with and on to recovery.

  • dawny
    dawny Member Posts: 1,126
    edited October 2012

    There is a lady on another forum, a stray cat found her bc, it is no longer a stray, she adopted it! I wonder if there is something in that, maybe cats can sense a problem somehow, sounds a little weird, but who knows!?

    Dawn

  • Linda1966
    Linda1966 Member Posts: 633
    edited October 2012

    Im very sorry to hear of the new dx Cat, really sucks you have to go through all this again so soon. I am curious though, have you been on tamoxifen or arimidex? If so is the new dcis the same er & pr+ or has it changed to negative?

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Hi Linda (my sister's name) - I have been taking tamoxifen since a couple of weeks after my surgery earlier this year.  I don't know about the er and pr+.  I was planning to get a copy of the pathology on Monday, so I will have all the details.  Yes, this does kind of suck.  I told my sister it was like a bad dream or a really bad joke that just does not end.  I had to have a complete hysterectomy Dec 2010, then the first mx January 2012 and now the second one this month.  I feel so bad having to go on medical leave AGAIN and have my coworkers cover for me.  Everyone is very understanding, but this is getting ridiculous.  I told my boss that after this all my female parts will be gone and can't cause any more trouble. 

  • NSJ2
    NSJ2 Member Posts: 227
    edited October 2012

    Did you go to the same place for your Mammo and MRI both times, back in 2011 and 2012? Just wondering. If not, perhaps one has newer technology then the other.

    If you did go to the same place. Did you ask them why the 2011 baseline on your first mammo and MRI didn't show the DCIS in your left breast back then?  And how did they respond?

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    No, different places.  I had the first mammo at our local hospital but had to go elsewhere for the MRI because our hospital did not have equipment for breast MRIs.  The mammo this year was done at the Stefanie Spielman Breast Care Center at Ohio State University and they probably do have top of the line equipment.  Although, I had a wire localization before my surgical biopsy at the local hospital and they took their own images beforehand and everything that showed up at the Spielman Center showed up there too.  So, I think it's life just playing another cruel trick on me.  I won't go into everything, but I could write a book about the past few years - no one would believe all the crap that has happened to me.  Before that, I felt like I was living a charmed life - not too many bumps in the road.  I think they were all waiting to gang up on me at once.  One positive thing that has come out of this - I have become the biggest proponent for mammograms.  I put mine off for so long - for no good reason, just didn't take the time.  I hear other women saying they are due, but have put it off.  So, I tell my story and they make their appointment.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    It is important to note that breast imaging does not see everything, particularly in dense breasts.  I had an annual mammo going back many years and my 2cm IDC was not seen at any point.  It was not seen until ultrasound, which was done thankfully right after the mammo.  I went back to the radiologist after dx to thank him for referring me for a biopsy, and he looked at my mammo film again with me since I now had a definitive dx.  He still saw absolutely nothing that even indicated a lump.  The pre-surgical MRI did not see the ADH and ALH in the "prophy" breast.  That was not discovered until post-op pathology.

  • NSJ2
    NSJ2 Member Posts: 227
    edited October 2012

    @SpecialK: Are MRIs supposed to pick-up ADH & ALC (dense breast or not), do we know?

    @Cat24: I'm wondering if the local hospital had analogue Mammo technology back in 2011 and upgraded to digital and/or 3D in 2012?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2012

    nsj2 - I believe that MRI, like mammo, sometimes sees it and sometimes does not.  There does not seem to be a wealth of info regarding non-invasive detection.  It appears to often be an incidental finding at biopsy/lumpectomy/mastectomy.

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    NSJ2 - I'm not sure if they have updated their equipment.  I was thinking of finding out to satisfy my curiosity.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited October 2012

    My MRI did 'pick-up' my benign stuff (ADH) too.  

    Although mammogram isn't what found my DCIS (ultrasound did) - it found the microcalcifications that seemed to be hovering around the ADH - I guess I will get my yearly mammograms more faithfully now.  My last mammogram, before this year, was 2007 (when I was 45) and before that when I was 40 (baseline).  I did not go frequently because I got these letters in the mail that said, "your mammogram did not pick up any abnormalities, but because your breasts are heterogeneously dense with 50-75% dense tissue we can't see anything anyway" (ok, I paraphrased that last part Wink).  

    I have a follow-up MRI this month only because they found something in my opposite breast and wanted a 6 month follow-up.  After this comes out clear (which I am assuming it will) -- I don't plan on any more breast MRIs -- that is *my* plan anyway Smile

    Cat - best of luck to you with your surgery.  I am so sorry that you have to go through this, and I am hopeful that this will be the last of it for you!! 

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Thanks, and I pray to God that this will be the end of my breast cancer saga. 

  • Momluke
    Momluke Member Posts: 184
    edited October 2012

    I have a question: can DCIS still show up in the opposite breast during the 5 years of tamoxifen?



    This may have been mentioned above...I didn't read all of the posts.

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Mine did.  I have been on Tamoxifen since the end of January, so it has only been 7 1/2 months.  But it's very likely the DCIS was already there and just could not be seen.

  • Momluke
    Momluke Member Posts: 184
    edited October 2012

    I see...so it prevents new cancer from forming, not eliminate cancer that is already there.

  • cat24
    cat24 Member Posts: 211
    edited October 2012

    Yes, it's supposed to decrease your chance of getting a recurrence not just DCIS but invasive cancer.  I just like to do everything the hard way.  It would have been so much easier to just have taken care of this all in January - not twice in the same year - it's kind of ridiculous. 

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2012

    "so it prevents new cancer from forming, not eliminate cancer that is already there."

    Actually, Tamoxifen does both.  It can prevent the development of a new cancer, but it can also kill off cancer cells that are already in the breast.  

    Tamoxifen is given as a preventative to stop the development of a new breast cancer in either the same breast or the contralateral breast.  And Tamoxifen is also given to reduce recurrence risk after the surgical removal of DCIS.  By definition, a recurrence is what happens when the original cancer flares up again. A local (in the breast area) recurrence develops when a few rogue cells from the original cancer remain in the breast after surgery and these cells have the opportunity to take hold and start to grow again.  The role of Tamoxifen is to starve these cells of their estrogen supply so that these cells die off.  As a result, someone who might have had a recurrence doesn't have one.

    Tamoxifen is a systemic treatment (i.e. it enters into and works in the whole body) and therefore it also works against distant recurrence, which can happen when cancer cells traveled out of the breast and moved into the body prior to surgery (i.e. before the cancer was removed from the breast). Just as Tamoxifen starves those rogue cells left behind in the breast, Tamoxifen will starve these rogue cells that have moved into the body.  Of course this is only relevant to women who've had invasive cancer, and who therefore have a risk of mets; this is not a concern for those who've had pure DCIS. 

    Those are the 3 benefits of Tamoxifen. It can prevent the development of a new BC.  It can prevent the development of a local recurrence.  It can prevent the development of a distant recurrence. But Tamoxifen, like any drug or treatment, including surgery, is not 100% effective.  On average Tamoxifen tends to reduce the risk of recurrence or the development of a new BC by about 45% - 50%.  For some women it's completely effective.  For other women it may kill off some of the rogue or existing cancer cells but not all of them, and a recurrence or new BC may therefore develop despite being on Tamoxifen.  

    By the way, there are now clinical trials underway on women who have DCIS who want to try to delay or possibly even completely avoid surgery.  What is being investigated is whether Tamoxifen (for pre-menopausal women) or Femara (for post-menopausal women), taken at the time that DCIS is discovered but prior to surgery, can stop the DCIS from any further development or shrink/eliminate the DCIS that's already there.  So clearly Tamoxifen does have the ability to eliminate a cancer that is already there.  It just doesn't do it every time.

    Tamoxifen or Letrozole in Treating Women With Ductal Carcinoma in Situ 

Categories