DCIS How long can I wait until surgery?

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Anzi
Anzi Member Posts: 7
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I am recently diagnosed with DCIS grade 2 < 1 cm Of course I have been researching ALOT. I have decided to treat with lumpectomy and radiation; however due to work and home life I am wanting to wait three months to commit to treatment. Much that I have read said this should be OK. My surgeon could not recommend waiting but said it is unlikely anything would change. Just wondering if anyone had thoughts or experiences with waiting for surgery. I think the doctor was also concerned about my mental health during the wait, but I am feeling more stressed about turning my life upside down on short notice and feeling unprepared.

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  • SJW1
    SJW1 Member Posts: 244
    edited March 2013

    When I was diagnosed with DCIS in 2007, I waited 6 months to have a lumpectomy. Because DCIS in non-invasive, if your surgeon will let you wait, you may be able to wait a few months for your lumpectomy.

    Best.

    Sandie

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  • Ariom
    Ariom Member Posts: 6,197
    edited March 2013

    Hi Anzi, so sorry you have to be here, but it is a great place to be while you wait for treatment, ask questions, and make the decisions.

    When I was dignosed in November last year, after a routine mammo in October, I was told that I could safely wait another month or so before Surgery. I had been diagnosed with DCIS, a mix of Intermediate and High Grade, approx 11mm. I had to wait to get the Surgeon I wanted.

    For me, I had to get it done, "NOW", even "Yesterday!" but I can understand your hesitation too. If you need some time to prepare for it, then that is what you should do. 

    You have done your research, decided what you want to do, so you are half way there.

    I wish you all the very best, let us know how you get on.

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  • JaneB1
    JaneB1 Member Posts: 47
    edited March 2013

    I was diagnosed with DCIS Stage 0. My surgeon at a top rated national comprehensive cancer center said, based on my year old clean mammogram, the size of the DCIS etc. that I had only had the cancer for about 6 months. I had about a 3 week time span between diagnosis and surgery. When my final pathology came back post- surgery, I had one tiny invasive tumor and several microinvasions. My surgeon called it a surprise given the biopsies and MRI result.



    My stage became 1a instead of 0. The problem is you cannot know for sure if it is only DCIS and not invasive until you get the final pathology. Needless to say I would not wait one day more than is absolutely necessary to have the surgery.

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  • redsox
    redsox Member Posts: 523
    edited March 2013

    I second what JaneB1 said -- the problem is that you do not know what you have until the path results from surgery are complete.

    Lumpectomy is usually easy surgery with fast recovery.  I had my lumpectomy on a Monday and was back at work and doing fine on Thursday. I actually felt pretty good on Wednesday and could have gone to work if I had to. It was about 10 weeks later before I started radiation, although I had seen the rad onc, gotten second opinions, and had the radiation simulation before then.

    You might consider having the lumpectomy and then, if the path results support it, waiting a bit to start radiation.  

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  • Anzi
    Anzi Member Posts: 7
    edited March 2013

    Thank you for your posts. I have decided to work this week on at least getting a second opinion. Although I feel comfortable with my first doctor I have a nurse friend that said getting a second opinion in this case would be common. I think I have come to the conclusion that surgery sooner is the best medical option, since no one can predict much of anything about DCIS, but I need to weigh the risks of postponing surgery with the rest of my life. The jury is still out........

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  • Anzi
    Anzi Member Posts: 7
    edited March 2013

    Thank you Redsox. I did consider lumpectomy then waiting on the radiation. My life and job require physical lifting how soon after the lumpectomy would you say you could comfortably lift and be active?

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  • april485
    april485 Member Posts: 3,257
    edited March 2013

    Anzi, depending on whether you have a Sentinel Node Biopsy, the BS told me 10 days for lifting over 10 lbs. I am now back to lifting free weights (3/11 lumpie) and feeling fine. But, if you had nodes taken, I would not lift with that side at all for fear of lymphedema.

    As for waiting, I would have the surgery and wait on the rads if I were you. No one ever knows the exact moment when DCIS can morph into IDC...whatever you decide, I wish you the best!

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  • Anzi
    Anzi Member Posts: 7
    edited March 2013

    No nodes involved this has been very helpful thank you everyone! I will talk to my BS this week about a timeline and how long I can wait between lumpectomy and rads.

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  • cheryl1946
    cheryl1946 Member Posts: 1,308
    edited March 2013

    If you can comfortably wait,that's fine. I had to know right away what I was dealing with.

    I had a "suspicious" mammogram on a Tuesday, saw surgeon on Thursday, and had the calcification biopsy the following Monday. Positive for DCIS.

    Then had 2 separate lumps biopsied the following two Mondays; stereotactic and then excisional ; they both were IDC's. All results given to me on Thurday of same weeks biopsies were done.Second opinion at Dana Farber in Boston.

    MRI showed something in humerus; had a cat scan guided biopsy at DF that showed bone mets. No surgery, rads, or chemo. All started April 12 2011, with stage IV dx on July 6 2011.

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  • Annette47
    Annette47 Member Posts: 957
    edited March 2013

    Although it wasn't planned that way, thanks to Hurricane Sandy I ended up waiting about 6 weeks between my suspicious mammogram and my biopsy (it was scheduled for the day Sandy hit and then the power was out at the breast center for several weeks).  Then due to work I waited another 3 weeks for the surgery, so all told it was over two months.   It doesn't seem to have done any harm, but like JaneB1, I did have an invasive component along with the tiny are of DCIS which the doctors felt meant it was IDC caught very early, so you just never know what you are dealing with. 

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  • ballet12
    ballet12 Member Posts: 981
    edited March 2013

    Hi Anzi,

    I ended up waiting about six weeks between the stereotaxic biopsy and the excisional biopsy, due to scheduling issues with the surgeon as well as my desire to go on vacation first (so I could swim--which would have been contraindicated for at least one month post surgery).  My situation was different from yours, in that the stereotaxic biopsy only showed atypical ductal hyperplasia, which is a diagnosis I'd had before (and had lived with for 17 years).  So, I wasn't so worried about putting off the surgery.  Yes, it turned out to be DCIS (but no invasive component found in what ended up being three surgeries-one in late July and two in October).  If the first diagnosis had been DCIS, I would probably not have put it off that long.  There was also a long delay between the last surgery (end of October) and radiation (January), and that was due to allowing for healing time, and for scheduling issues at the large cancer treatment center I go to.  No one seemed concerned at all about that.  Best of luck. I think second opinions are important to do, so glad you are doing that. 

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  • redsox
    redsox Member Posts: 523
    edited March 2013

    I do not have a physically demanding job.  You should talk to your surgeon about specific physical demands.  

    It was really quite an easy and fast recovery.

    I did not have nodes removed, and there is seldom good reason to do a nodal biopsy with a lumpectomy if the initial diagnosis is DCIS.  

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  • ballet12
    ballet12 Member Posts: 981
    edited March 2013

    Hi Anzi,

    If you are waiting to do the lumpectomy due to the physical stress of the procedure, I didn't find it difficult at all (although that is a personal thing).  I had three of them (in this go around--although have had excisional biopsies three times prior to this).  I had the surgeries on a Friday and was back at work on Tuesday.  I could have probably been back on Monday if absolutely essential, but I'm self-employed on Monday, so I gave myself an extra day, then returned to my salaried job the next day.  The main issue is that you can't shower for a period of time and I had a kind of bandage compressing the breast.  That was for, I think. 48 hours.  They also don't advise heavy lifting.  I was back to my ballet class (in a modified way) by Wednesday.  I didn't take more than Tylenol once leaving the hospital, but if you do take something stronger, then that is another reason not to abruptly return to work.  Best of luck.

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