Has anyone had Reoccurance of DCIS after a Mastectomy

Hi Claudia

Well I would never say never, but removing the breast for a pre cancer is radical treatment and I'm confident your prognosis is extremely good.  It was 6% for me returning after a stage 1 grade 1 IDC and I guess as a DCIS is probably more like 2 or 3%?   No harm in asking your onco-surgeon, but my advice would be to get on with your life!

Sending you love and luck...

Nikki x

I think Nichola meant this to be reassuring.  By radical, it sounds like she meant aggressive and that she thought this was a good thing.  Maybe in britain, where she is from, they refer to DCIS as precancer.  I know my surgeon here does, but of course this is controversial.  But I think she was saying that Cluadia has taken a big hammer to the beast and can assume its dead.

HI there, Unfortunately, I have.  I was told I had a less than 1% chance of it returning.  Go live my "happy life".  I had a Bi-Lateral Mastectomy for treatment of my DCIS.  In 1 and 1/2 years later, I developed 2 new lumps on my reconstructed breast.  After MRI, and U/S I had 3 lumps....almost 2 years to the day from my first Diagnosis I had 3 lumps removed.  All cancerous...all different types.  I am now less than 1 year out from very agressive Chemo and Radiation.  I am NOT  the norm.  It does happen...but it shouldn't happen to you.  By the way, I wa 39 at first diagnosis.

Hi Ladies, I'm confused and concerned ... I was diag'd with DCIS in my left breast in Jan 09.  I opted for a BLM and my breast surgeon told me that no further treatment is needed since I have no breast tissue left.  I have been going through reconstruction with tissue expanders and am having my exchange surgery next week.  How did DCIS come back with mets to your bones when DCIS is supposed to be non-invasive cancer that does not spread outside of the breast tissue???  Or did they find DCIS with invasive components after you had the masc?  I thought I was free & clear based on what my dr told me, but now I'm getting concerned that I may not be out of the woods 100%. 

Krissykatz - what type of reconstruction method did you have performed?  I just don't understand how DCIS can come back after a BLM ...... thank you----sue

Wow, this thread is confusing!   Since I've spent close to 4 years reading everything I can find about DCIS, let me try to clear up some of the confusion and ease some of the fears.

Claudia, if I understand correctly, your question was about the risk of recurrence after having a mastectomy for DCIS.  The answer is quite clear.  Most studies - and I've read dozens of them - put the recurrence risk at about 1% - 2%.  One or two studies state the risk to be higher (5% up to even 10%) but the overwhelming consensus of all the studies puts the risk at 1% - 2%.  What this means is that of every 100 women diagnosed with DCIS who has a mastectomy, 1 to 2 of these women will have a recurrence.  KrisseyKatz is one of those women.  The reason that a recurrence is possible after a mastectomy for DCIS is because even with a mastectomy, a tiny amount of breast tissue will always be left - maybe just a few cells - but that breast tissue will be there and that's why there is a risk.

When DCIS recurs, there is approx. a 50% - 60% chance that it will recur as DCIS and a 40% - 50% chance that it will recur as invasive cancer.  Pure DCIS cannot recur as mets, as least not without one step in-between.  The step in-between is that first the DCIS would have to recur as invasive cancer.  It could happen that if DCIS recurs as invasive cancer and this recurrence isn't found until it has progressed to become mets, it might appear that DCIS has recurred as mets, but in fact this isn't true - there was that step in-between.  For someone who had a mastectomy for DCIS, the likelihood of the DCIS recurring as IDC and then progressing to mets is extremely small.  For all women who have DCIS, including the approx. 60% who have lumpectomies (who generally have a higher recurrence risk), the risk of having an invasive recurrence that then progresses to mets is only 1% - 2%.  What this means is that the long-term survival rate for DCIS is 98% - 99%.  So for the 40% of DCIS women who have mastectomies, the risk would be significantly lower than 1%.

DCIS, because it is non-invasive, cannot recur in the other breast.  Of course, anyone diagnosed with BC one time is at higher risk to get BC again, and this includes those who were diagnosed with DCIS.  So someone could be diagnosed with a new occurrence of BC in the other breast but this would be a new cancer, not a recurrence of the original DCIS. 

DCIS is Stage 0, non-invasive breast cancer.  Anyone diagnosed as being Stage I, Stage II or Stage III does not have DCIS.  Because so many women have DCIS along with their invasive cancer (DCIS and IDC are often found together), this can be confusing because the term "DCIS" is included in the pathology report.  But any staging other than Stage 0 means that there is invasive cancer present.  And what happens then is that the invasive cancer "trumps" the DCIS and the diagnosis and treatment is based on the invasive cancer, not the DCIS.  In these cases, the DCIS in effect becomes irrelevant, except that it needs to be removed.  So there is no such thing as DCIS Stage I or DCIS Stage II or DCIS Stage III.  There is only DCIS Stage 0. 

Similarly, because DCIS by definition is confined to the breast and cannot travel outside of the breast, and because chemo is given to address the risk that cancer cells have escaped the breast and moved into the body, chemo should never be required for DCIS.  So it's pretty safe to say that anyone who is given chemo does not have DCIS (although there may be a DCIS component to their cancer, along with the invasive component).

Breast cancer is very complicated.  It's not one disease; it's many diseases.  And even one tiny difference in pathology can make a significant difference in the diagnosis or treatment.  While DCIS is very commonly found together with invasive cancer, pure DCIS is distinct in it's treatment and prognosis.  Claudia and Sue, I hope that this clears up some of the confusion and reassures you, at least a bit!

Daisy, if it's pure DCIS, there can't be lymph node involvement.  Of course for the women who've responded who didn't have pure DCIS, lymph node involvement may be have present from the beginning.  Just trying to avoid more confusion....

Here's some info on DCIS recurrence rates after a mastectomy:

• http://www.scienceblog.com/community/older/2004/4/20043379.shtml  "Of the 1,136 patients, 286 had had a lumpectomy and radiotherapy, 444 had had a lumpectomy only, and 406 had had a mastectomy. After ten years, cancer had recurred in the same breast (local recurrence) in 18 per cent (lumpectomy and radiotherapy), 30 per cent (lumpectomy only) and 1.8 per cent (mastectomy) of the women. " 
• http://www.ajsfulltextonline.com/article/S0002-9610(06)00447-8/abstract "Clinical, pathologic, and outcome data were collected prospectively for 1236 patients with pure DCIS accrued from 1972 through 2005.  There were 150 recurrences (87 DCIS and 63 invasive). Invasive local recurrence after mastectomy was rare (0.5% of patients) and after breast preservation was more frequent (12.0% of patients). "
• http://www.aafp.org/afp/20070101/tips/4.html "For the 430 women treated with mastectomy, the 12-year probability of local invasive recurrence was 0.5 percent "
• http://www.annalssurgicaloncology.org/cgi/content/abstract/15/1/235 "The 8-yearoverall local recurrence rate was 12% after breast-conservingtreatment (BCT) [15.6% after WLE and 8.8% after WLE+RT (P =0.161)] and 0.9% after mastectomy (P < 0.0001). "
• http://cme.medscape.com/viewarticle/447028  - % loco-regional recurrence: 1.6% "First, DCIS carries an excellent overall prognosis, with only 1% of patients developing metastatic breast cancer. There is no substantial difference in survival expected for any of these local treatment choices. Second, mastectomy provides excellent local control in DCIS. Lumpectomy is associated with a roughly 1 in 4 risk of local tumor recurrence. By contrast, the addition of radiation therapy to lumpectomy reduces the risk of local recurrence by half, to approximately 1 in 8. "
• http://www.dcis.info/treatment-options.html  "The recurrence rate and overall chance of dying from (DCIS) after simple mastectomy is between 0 and 2%. "

I hope that eases some minds.  Of course, it doesn't mean that a recurrence after a mastectomy for DCIS isn't going to happen.  1% - 2% is a small percentage, but considering the number of women diagnosed with DCIS every year, it's still quite a large number of women.  So it's important to be vigilant and continue to check for lumps.  And we shouldn't be surprised when we meet someone here who was in that 1% - 2% group.

Deedee, if you had pure DCIS the first time, then your second cancer in your other breast was likely a second cancer, not a recurrence.  DCIS cannot recur in the other breast.  And even invasive cancer rarely transfers from one breast to the other. 

For those who have pure DCIS, recurrence risk refers only to a recurrence of the original cancer in the same breast.  But there is another risk that we also face.  For anyone diagnosed with BC who has a lumpectomy or a single mastectomy, our risk to get a new cancer, unrelated to the first diagnosis, is about double the average for someone our age.  This varies by individual based on other risk factors that we might have, but "double the risk" is a good guideline. In my case,  I was 49 when I was diagnosed.  The average 49 year old has an 11% chance of getting BC in her remaining lifetime (to age 90).  This meant that my risk was about 22%.  This new cancer could occur in either breast, however since I'd had a mastectomy, my risk on my mastectomy side is only about 1% and it's my "good" side that carries most of this risk.  So while after my mastectomy I have only a 1% - 2% chance of having a recurrence of my original cancer, there is a much higher risk that I might be diagnosed with a new breast cancer.

In your case, since your 2nd cancer was in the other breast and since your first cancer was DCIS, from my understanding this means that you weren't actually in the 1% who has a recurrence after a mastectomy.  Instead, you were in the larger group (20% - 25%, from what I've read) who unfortunately get diagnosed with BC twice.  Having said that, in my case I decided to have a single mastectomy and forgo Tamoxifen despite knowing that I'm high risk to get BC again.  Although at the time of my diagnosis my risk was 22% (the good news is that it comes down every year that I don't get BC so now it's about 20%), in making my treatment decisions, I preferred consider the fact that there is a 78% chance that I won't get BC again.  For me, that was a compelling reason to keep & enjoy my healthy breast for as long as I can, hopefully for the rest of my life.  Still, I understand completely that others might look at that risk level and decide to have a bilateral.  It's all a question of how you view risk and what risk level you are comfortable living with.

Was there someone on this thread that found an enlarged lymph node after surgery was done and rads were done? There is this lady that posted this and has had no response.  She is really anxious.

LoriL wrote:

Hello ladies!

I had bilateral mast 5/28/09 with a negative Sentinel node biopsy at that time. About 2-3 weeks ago I noticed an enlarged lymph node (a little smaller than the size of a marble) but reasoned that it was from the recent surgery. I started rads 3 days ago since my margins were close, and mentioned the lymph node to my Radiation Oncologist today. He believes it is likely from the surgery, but wants it biopsied just to be on the safe side. Now I'm REALLY worried! 

My surgeon was certain that he had identified the correct Sentinel node, but I know that they are not 100% accurate. Has anyone out there had a negative Sentinel node biopsy but then found to have cancer in other nodes???

I was able to get in to see my surgeon tomorrow- I'm hoping he will do a needle biopsy right then in the office. I swear, this is almost worrying me more than I was before the initial cancer diagnosis! I have been breathing a sigh of relief as my Oncotype Dx was low and therefore chemo wasn't needed. But, now, my mind is just racing! Help! 

Beesie, thanks so much for your explanations & links.  That helps me feel better as to why my dr told me I didn't need any further treatment after my BLM for DCIS.  I will have to get MRIs every other year since I am having implants for my recons.  sue

There is no such thing as Stage I DCIS.  Pure DCIS is always Stage 0, whatever the pathology may be.

The addition of a microinvasion changes the staging to Stage I but when that happens, the diagnosis is no longer pure DCIS - it is DCIS with an IDC microinvasion.  It is the presence of this very small amount of IDC - invasive cancer - that moves the staging to Stage I.  No amount of DCIS alone, and no type of DCIS alone, is considered Stage I.

• All DCIS is considered stage 0 breast cancer  http://www.breastcancer.org/symptoms/types/dcis/diagnosis.jsp
• Ductal carcinoma in situ (DCIS) is considered to be noninvasive breast cancer that occurs in the lining of the breast ducts.  The term "in situ" means "in place"...Stage 0 disease is in situ disease.   http://www.nccn.com/Breast_cancer_noninvasive.aspx
• ....ductal carcinoma in situ (DCIS) has become one of the most commonly diagnosed breast conditions. It is often referred to as "stage zero breast cancer." ...Since DCIS is not an invasive cancer, it is even less of a threat than an early-stage invasive cancer (usually called Stage 1 or Stage 2 cancer).  http://www.center4research.org/wmnshlth/2006/dcis10-06.html
• Stage 0: Tis, N0, M0: This is ductal carcinoma in situ (DCIS), the earliest form of breast cancer. http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_breast_cancer_staged_5.asp

bump

I had a bilateral mastectomy for widespread, high-grade DCIS and the subsequent pathology report listed two microinvasions, 2 positive nodes, stage II. The microinvasions were in the two nodes. They were in the millimeter range but even so, they trumped the widespread DCIS.

Daisy,

You are absolutely right - I'm not a doctor.  That's precisely why I usually try to include links to reliable medical experts and research studies in with my responses.  I don't expect anyone to believe me and wouldn't want anyone to take medical advice from me or make decisions based on what I've said.  I think however that the doctors who are on the advisory board at breastcancer.org, the doctors who advise the American Cancer Society, and the doctors who write the breast cancer treatment guidelines for the National Comprehensive Cancer Network (these are the guidelines used by most doctors in the U.S.), are industry leading experts and they can be believed. Those are the links I provided in my earlier post, supporting the point that DCIS is always Stage 0.  That's what they all say.

I agree completely that we are all best helped by talking to our doctors and asking them our questions.  However, when there is a specific issue, I've found that sometimes it helps to go into my doctor armed with the information I've already gathered and incorporating that into the discussion, with questions such as "Can you explain why you say that I'm Stage I when everything I've read suggests that pure DCIS is always Stage 0 ?".  This way I get a more direct answer to my very specific questions, and it builds on what I've already learned by doing my own research.