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DCIS newly diagnosed

Hi All,

I was diagnosed last week with DCIS grade 3 ER- in my left breast. My breast surgeon and I agreed that a mastectomy was necessary because I have two areas of DCIS across my lower breast. I have to get genetic testing and an MRI next week to see if anything is missed in the right breast and would warrant a DMX. I have already settled on the fact that I would like a DMX to ensure this doesn’t come back.

I am completely spiraling because I’m concerned the DCIS is going to become invasive before I can get the surgery done next month. Also, being ER- leads me to believe if it’s invasive then it will be triple negative.

Really looking for any inspiring stories where someone has multiple areas of DCIS and it didn’t become invasive before surgery.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,726
    edited March 31

    Although no one here,not even your doctor, can make any promises about what will be found after surgery, breast cancer is most often very slow growing. Weeks will likely make no difference in your ultimate diagnosis as the cancer has been growing for years before it became large enough to be detected. The thing with breast cancer is that it is more indivualized than most people think. Although you might find reassurance in the experiences of others, there is no predictive value in it. As for being triple negative, only the pathology report can confirm that but treatment advances, Herceptin being the big one, have been a game changer. Again, breast cancer is slow growing and while many things are possible, the chances of it becoming invasive as you wait are quite small. Breast cancer needs to be dealt with but is not considered a medical emergency (though it can feel like it!). Lastly, there is nothing that can ensure that breast cancer won’t recur, not even a bmx. It is simply not possible to guarantee the removal of every single cancer cell. The vast majority of DCIS cases do very well and never experience recurrence but there are no guarantees and no real cure, just absence of recurrence. Waiting is difficult and most of us have been there but try to stay away from catastrophic thinking . Not easy but worth practicing. Take care

  • reader247
    reader247 Member Posts: 3

    I was diagnosed in January with grade 3, ER+ PR+ DCIS. After the MRI showed a much larger area of enhancement of 4.9cm, I was told I would need a MX. I was okay with that because I had already decided on a BMX to avoid taking tamoxifen. I watched my mother struggle with that and I knew that combined with scanxiety would really impact my quality of life.

    I had the DMX three weeks after diagnosis and the pathology showed DCIS only. I was really focused on the grade 3 part of it and I was petrified that invasive cancer would be found in that large area, but it wasn't. In fact, the DCIS ended up being only 6mm.

    Everyone says the timeframe you are in right now (tests and gathering information) is the most stressful time and I'm here to tell you that is absolutely true.

    Hang in there - wishing the best for you.

  • songlady
    songlady Member Posts: 3

    While taking a shower one day in 2014 I felt a hard lump in my breast. It was diagnosed DCIS in the left breast. Mastectomy was recommended because of multiple areas of DCIS and the space between the affected areas. Nothing was found in the right breast at the time, but I chose to have a double mastectomy because of other cases of bc in family (mother, aunts, daughter), although genetic testing was inconclusive, I didn't want to take a chance. Biopsy after surgery found cancer cells were in the right breast as well. I was not recommended any further oncology visits or chemo or radiation — no further treatment. It has been 10 years. I am thankful there has been no recurrence, but I remain watchful. Wishing you the best.

  • keicholtz
    keicholtz Member Posts: 6

    All of your comments and stories have been very hopeful and reassuring. Thank you all very much for the support!