DCIS and waiting?

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Karen356
Karen356 Member Posts: 1
curious what is the longest time anyone has waited before getting the surgery (lumpectomy or mastectomy) done, if at all?
I've read for DCIS its possible that up to 5 yrs before it can become invasive. What is the average timeframe from diagnosis to treating it? Has anyone waited several months to a year?

Comments

  • fitzdc
    fitzdc Member Posts: 1,467
    edited January 2012

    : has anyone with dcis decided to wait?

    There is is thread on this that has some information/answers to your question.  Some people have waited and they have answered there.

    Teresa

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

    Karen,

    DCIS comes in a lot of different forms. As a general rule most experts believe that the timeframe to invasion for a tiny (< 5mm, for example) single focus of grade 1 DCIS might be very long, possibly as long as 15 to 20 years - and there are some who say that it might never become invasive at all.  But there is no guarantee of this; there have been women who've come through this board who've had mammos and biopsies that showed small, low grade DCIS but then when the surgery pathology came in, it turned out that they already had invasive cancer along with the DCIS.  This risk is much higher for those who have a large amount of high grade DCIS. Upon removal of the entire mass of DCIS, it might be found that in one area the DCIS has already evolved to become invasive. In about 20% of cases where DCIS is found in a needle biopsy, the final pathology shows invasive cancer, changing the diagnosis. 

    Having said that, generally most experts will say that with DCIS you don't have to rush into surgery.  It's not unusual to see women here who've waited 2 - 3 months.  My needle biopsy was inconclusive so I had a surgical biopsy which uncovered both the DCIS and a microinvasion of IDC.  Because there were no clear margins, it was pretty obvious that there was still DCIS left in my breast after that first surgery; I didn't have the second surgery, my mastectomy, until 2 1/2 months later.  The mastectomy uncovered a lot more high grade DCIS but fortunately no more microinvasions.  So the wait didn't change my diagnosis or cause me any problems.   

  • sweatyspice
    sweatyspice Member Posts: 922
    edited January 2012

    6 months.  Long story.  I don't regret it, but I also wouldn't recommend it for others.

  • Tatina123
    Tatina123 Member Posts: 480
    edited January 2012

    When I was diagnosed with DCIS my breast surgeon and I were on it immediately.  I didn't want to wait -- I canceled a vacation and had my BMX with immediate recon within 10 days of the diagnosis.  My strong family history of breast cancer pushed me through those operating room doors sooner, too.

    Take care,

  • elliegk
    elliegk Member Posts: 4
    edited January 2012

    I was originally diagnosed on Jan 5. Second biopsy result a week ago showed it was multifocal. Am having bilateral mastectomy on Feb 8th. Dr didn't want to wait longer in case it was invasive.

  • Lisa75
    Lisa75 Member Posts: 137
    edited January 2012

    Interesting. I had been comtemplating waiting til early next year for my own treatment as I have too much going on currently.

  • chrissilini
    chrissilini Member Posts: 313
    edited January 2012

    I went for my baseline mammo in October, repeat a few weeks later. Biopsy, MRI, then bmx 12/8/11. I was diagnosed with a large area of DCIS and biopsy confirmed IDC. Luckily the IDC was very small but the DCIS was extensive and lumpectomy wasn't an option. My bs told me that the DCIS most likely has been there for years, 3-5 or so. The issue with DCIS is that if left untreated, at some point those dividing cells will run out of room in the duct and enter surrounding tissues. Then it's invasive.

    The Breast Cancer Treatment Handbook by Judy Kneece, I got mine from my breast health center ,explains breast cancer growth rate well. By the time a tumor gets to be about a cm in size, it may have  been in your body approx 8-10 years. It's a really good book with a lot of information on the whole process from diagnosis, to surgery and beyond. 

  • dp4peace
    dp4peace Member Posts: 58
    edited January 2012

    Hi Karen, I have kind of a unique story. I waited one year and 10 months. I did all the natural healing, detox, risk reduction things you can do while "waiting." Jan 2010 I was diagnosed with int. grade DCIS with a positive margin after wide excision biopsy.  I did not do any further conventional treatment until Oct 2011 after "highly suspicious" mamogram and MRI. Had partial mastectomy then a re-excision, but still have 1 close margin. Turned out to be the same low-int. grade DCIS. Had a 2nd opinion from Dr. Lagios on the pathology. There are more options than your surgeon/oncologist may tell you. I saught a 2nd surgical opinion from Dr. Mel Silverstein. He is an oncoplastic surgeon and offers lumpectomies with immed. reconstruction when other surgeons would recommend mastectomies only as an option. I am seeking another opinion in Feb from Dr. Esserman at UCSF (regarding close margin). She has made some very bold statements about the "overtreatment" of non high grade DCIS. I am also getting an Aurora RODEO MRI next week which is suppose to be better at picking up DCIS than mammogram (recommended by Dr. Lagios). I have done my homework. Everyone's case is unique and it is important to get 2nd opinions and all the info before rushing into major decisions. I created a blog to share my DCIS journey and all these great resources: www.dcis411.com  Stay calm and listen to your instincts. :) Donna   

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

    Donna, you said something very important that often is not included in statements that discuss the overtreatment of DCIS.  

    "She has made some very bold statements about the "overtreatment" of non high grade DCIS.

    That's the critical point and thank you for including it.  "Non high grade DCIS"  All DCIS is not the same.  It's very true that some cases of non-high grade DCIS are overtreated.  But high grade DCIS is very different.  Too often women come here, having read reports in the media about "the overtreatment of DCIS" and they think that they don't need to do anything about their diagnosis. But then when you read the specifics of the DCIS, you realize that it's a high grade DCIS which in fact might turn out to be more than DCIS right from the start and certainly presents greater risk. So the important message is that when it comes to treating DCIS, one size does not fit all. 

    Karen, do you have details about your DCIS?  What's the grade?  The estimated size?  Is it a single focus or it is multi-focal?  Those are all important factors in your treatment decision.  

  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    Karen356 is one of those people who joined BCO, posted once, and never came back. Her last visit was Jan 22, the day after she joined and posted.

    These people who don't stay around to hear the answers to their questions kinda tick me off. 

  • dsj
    dsj Member Posts: 277
    edited January 2012

    Maybe she got the information she needed.  She could have read the board without logging in. 

  • cycle-path
    cycle-path Member Posts: 1,502
    edited January 2012

    Good point, dsj, I didn't think of that.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    but i'm still here reading and your info has helped me understand even more, thank you. 

    diane

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