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Topic: 5 years used to be the goal....

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jul 17, 2019 02:41PM

Kkubsky wrote:

Had my rad onc appt on Monday. I am 3 1/2 yrs post diagnosis and I have been on several different DCIS groups and forums. It seems that there are many recurrences around year 8 (just my observation). I always thought that the first 5 years are the greatest risk for recurrences and that seems to be when a lot of women stop being followed closely. I decided to ask my RO and he said that most recurrences happen between 5 and 10 years. I thought that I could actually start to breathe again after 5 years and now it seems that I should have been breathing all along....that my recurrence chance is actually going to be higher in about 2 years???

Is there a difference between DCIS vs invasive recurrences? Do they follow similar patterns? Since I am ER/PR negative I was thinking that maybe my risk factor would go down since I believe that the highest risk for invasive ER/PR negative recurrence is the first few years, then it drops unlike ER/PR positive. I was hoping that at least if I have a more aggressive DCIS with negative receptors that at least if I get through the first few years, I could relax a bit.


Dx 1/28/2016, DCIS, Left, 1cm, Stage 0, Grade 3, ER-/PR- Surgery 2/24/2016 Lumpectomy: Left Radiation Therapy 3/20/2016 Whole-breast: Breast
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Jul 17, 2019 03:51PM SandiBeach57 wrote:

Hi. I don't know if this info will help you as my DCIS was ER+ PR+.

I was diagnosed with DCIS in 2006 and had bilateral mastectomy. DCIS returned in 2007 and I had radiation to the chest wall and placed on tamoxifen for 5 years.

10 years later in 2016, I was diagnosed with Stage IV, mets to liver, ER+, PR-, HER2-.

I was vigilant with my yearly check ups, blood work and tumor marker, CA 15.3. There were no red flags during this time.

My MO thinks some cells probably evaded detection early on 2006-2007.

My advice, keep monitoring yourself. If you have symptoms that are not explainable, ask for CT scan, bone scan or MRI. (MRIs are best for brain and liver evaluations.) Find a MO that you trust.

I was diagnosed as I had trouble breathing. The liver mets had traveled to my lung arterioles (tumor emboli syndrome).

Don't be afraid to continue enjoying your life, just keep monitoring, okay?

S


(2006 and 2007 DCIS) Oct 2016 Stage IV, widespread liver mets with pulmonary tumor emboli syndrome, IDC, ER+PR-HER2-, Oct 2016 AC, Jan 2017 Ibrance Letrozole, NEAD since Oct 2017.
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Jul 18, 2019 10:58PM 1redgirl wrote:

I was diagnosed 25 yrs ago with DCIS in my left breast. I had 2 lumpectomies. Apparently the 2nd requested because of margins. I was 40. To be blunt, I frankly did not take DCIS seriously. It is 0 stage and mostly thought not to be able to become invasive. Last yr I was diagnosed with both DCIS and IDC in my right breast. Since I had 3 tumors there, it was decided the breast must go. I admit I regret having a needle biopsy since the path could have been done after surgery. The breast was coming off anyway. Frankly, I am suspicious of needle biopsy seeding, and I am not buying the belief that DCIS does not become invasive. 25 yrs ago, it was recommended I have a mastectomy which I declined. That seemed severe to me for a cancer supposedly that does not become invasive. Much cannot be explained when it comes to breast cancer.
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Jul 18, 2019 11:31PM Beesie wrote:

DCIS is not invasive, but it most certainly can become invasive. That's why it's removed and treated - to avoid the development of an invasive cancer. When DCIS recurs, approx. 50% of those recurrences are still DCIS, but 50% have evolved to become invasive cancer by the time the recurrence is found.

That said, based on current scientific knowledge, the seeding of DCIS, i.e. moving some DCIS cells into the open breast tissue, will not create an invasive cancer. The change that occurs to turn a DCIS cell into an invasive cancer cell happens at the molecular level within the cell. The cell develops the ability to break through the wall of the milk duct and survive, thrive and spread in open breast tissue and the vascular and lymphatic systems. A DCIS cell that is displaced or seeded will simply die off, because the cell structure is non-invasive and has not under gone this molecular change.

redgirl, a second diagnosis 25 years after the first diagnosis, and in the other breast, clearly was a new primary breast cancer, a diagnosis unrelated to your first diagnosis. As women, we all are at risk to develop a breast cancer - the fact that we've been diagnosed before (whether with DCIS or invasive cancer) does not make us immune to being diagnosed again. In fact because our breasts have already shown themselves to be a fertile environment for cancer cells, and because our bodies have already developed cancer cells one time, we are more likely than the average woman to be diagnosed again. This risk increases as we get older, just as it does for all women; women are at greatest risk to develop breast cancer in our 60s and 70s. For those of us diagnosed previously, who already have a higher risk than average, our risk is greatest at this age.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 9, 2019 05:33PM Bannerlady wrote:

Hi, I had Dcis two years ago and had 2 lumpectomy, 2nd one margins and radiation and am very disappointed to have sample taken this week, a biopsy and looks like it's back again already. Do you think these cells were there all the time and radiation didn't kill them? or is it a new occurrence and why would it be back so soon, not even 2 years since finished radiation it's very disappointing. Will have lots of questions for the consultant but can they really answer is everyone different and their Dcis story unique to them and their cell growth?

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Oct 19, 2019 03:31PM queerbychoice wrote:

I was diagnosed in January 2014 with right-breast DCIS, grade 3 with necrosis. I had a lumpectomy and radiation. Almost six years later, it has not recurred, but I was diagnosed in September 2019 with left-breast DCIS, grade 3 with necrosis. Not a recurrence, but a new occurrence on the other breast. There's always something to worry about, whether or not the original cancer recurs.

Dx 1/8/2014, DCIS, Right, 1cm, Stage 0, Grade 3, ER+ Surgery 1/30/2014 Lumpectomy: Right Radiation Therapy 3/11/2014 Whole-breast: Breast Dx 9/10/2019, DCIS, Left, <1cm, Stage 0, Grade 3
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Oct 19, 2019 06:15PM Ingerp wrote:

Just because it’s in the same breast doesn’t mean it’s not a new primary. It might have different characteristics from your first go-round.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast

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