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Breast Cancer Awareness Group Breast Cancer Awareness Group

Ductal Carcinoma in Situ

Posted by on Oct. 16, 2013 at 8:52 AM
  • 6 Replies

I wrote a couple months ago that I had been diagnosed with Lobular Carcinoma in situ. I had a surgical excision, and the biopsy report came back with LCIS, nothing more.

My surgeon recommended a visit to an oncologist following the surgery to review follow-up care, and see if she recommends I take Tamoxifen. So she ran a panel of bloodwork, and I learned I have a higher likelihood of clotting than most women, so she did not recommend Tamoxifen.  She did ask that a pathologist review the slides taken during my surgery however, since the LCIS was extensive. With a second look, it was found that I also have ductal carcinoma in situ cells.  She and the surgeon are waiting for the full report which shows the margins and type of cells present before further treatment recommendations can be made.

So this diagnosis is a little more serious, though the prognosis is good.  But I'll need more treatment, I just don't know what yet. I'm also very concerned about the pathology report.  Why was this missed the first time?  Is the pathologist now sure that is all that was found in the slides or will I learn later there are signs of invasive carcinoma?  I want to know what went wrong, and see who did the second review.

Did anyone have issues like this?  I'm curious if this is pretty common or no.  Anyway, that's what's going on with me at the moment.  

by on Oct. 16, 2013 at 8:52 AM
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Replies (1-6):
2curly
by Member on Oct. 16, 2013 at 4:36 PM

My initial biopsy came back that I had DCIS.  After getting and MRI, my surgeon showed me that the tumor was large.  At that time, we agreed to do a mastectomy because I am very small chested and it was a big tumor.  During the mastectomy they will take and biopsy your lymph nodes.  Usually a pathology report comes back within a week, but I got a call from my surgeon telling me that the first lab report showed that the cancer was not invasive, but that when presented to the panel I guess another doctor thought they saw something, so it was tested again by a second lab.  So I had to worry for an additional week for my pathology results from surgery. Thankfully both labs agreed that although my tumor was large it remained within the breast and was not invasive.  I was not recommended to take Tamoxifen either.

I think they often present cases to panels which is good that there is more than one set of eyes checking on things.  If you are ever uncomfortable about a result you can always ask for a secon opinion.  

I'm sending you positive thoughts.  Good luck with everything

LIMom1105
by Member on Oct. 17, 2013 at 9:48 AM

Thanks for sharing your story!  It freaked me out that they didn't catch this the first time, but I guess it's not as straight forward as looking for a strep culture, say.  

I did hear back yesterday.  The DCIS is in a few areas, but it is very small at this point and my margins are clear. So it is surrounded by a lot of healthy tissue. So that might be why it was missed.  No treatment is recommended now other than screening regularly, though I would like to run this by another surgeon to get a second opinion.  I can't say I like waiting around with this, but we'll see what another doctor says. 


TinaNicu
by Member on Jan. 20, 2014 at 8:26 PM

I was told that I didn't need tamoxifen if it was only DCIS or LCIS. however, after my dbl mastectomy, I found out that I had micro invasive lobular carcinoma. So, I take tamoxifen. 

Did you get tested for the BRCA mutations? I was positive. 

babyboomer1977
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by Member on Jan. 22, 2014 at 3:36 PM

I was told to take tamoxifen because the other hormone pills caused me extreme bone and joint pain and really bad nasusa to the piont where I could not hold anything down and I lost 20 pounds from the other hormone pills! My husband even had to help me get around because I had a really hard time walking and moving around even though my doctor told me to walk every day for 48 minutes! And than she suggested for me to take tamoxifen and that caused my vision to go in and out and than the side of my face went numb than my husband had to take me to the hospital and they told me that I had a mini stroke from taking  tamoxien!  I was diagnosed with late stage 3 carsnoma breast cancer in 2011  I already had the surgery in 2011 and the chemo therapy from feb to may 2012 and the radiation therapy from june to august 2012!

LIMom1105
by Member on Jan. 22, 2014 at 8:55 PM
1 mom liked this
No I have not been tested for that, but breast cancer doesn't run in my family at all, so more likely this has an environmental trigger.

I do have a clotting disorder, and since I have DCIS, my doctor didn't recommend tamoxifen for me. The more I have read, I agree. I'm glad they detected your invasive lobular cancer, though I am sorry you have it at all. Hugs!


Quoting TinaNicu:

I was told that I didn't need tamoxifen if it was only DCIS or LCIS. however, after my dbl mastectomy, I found out that I had micro invasive lobular carcinoma. So, I take tamoxifen. 

Did you get tested for the BRCA mutations? I was positive. 

LIMom1105
by Member on Jan. 22, 2014 at 10:07 PM
I am really sorry you had this experience with tamoxifen. I have heard if this happening, and since I do have a clotting disorder and DCIS is very low level, my doctor recommended screening instead. In my case, the cure could be worse than the disease.

I've also heard stories of severe joint and muscle pain. I'm really sorry you went through all of this.


Quoting babyboomer1977:

I was told to take tamoxifen because the other hormone pills caused me extreme bone and joint pain and really bad nasusa to the piont where I could not hold anything down and I lost 20 pounds from the other hormone pills! My husband even had to help me get around because I had a really hard time walking and moving around even though my doctor told me to walk every day for 48 minutes! And than she suggested for me to take tamoxifen and that caused my vision to go in and out and than the side of my face went numb than my husband had to take me to the hospital and they told me that I had a mini stroke from taking  tamoxien!  I was diagnosed with late stage 3 carsnoma breast cancer in 2011  I already had the surgery in 2011 and the chemo therapy from feb to may 2012 and the radiation therapy from june to august 2012!

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