Just diagnosed and very scared

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nmh35
nmh35 Member Posts: 96
edited December 2014 in DCIS (Ductal Carcinoma In Situ)

Hi everyone-

I use to follow these boards last year when I was diagnosed with ADH but now I was diagnosed today with DCIS on the other breast. I'm so scared to hear the actual cancer word. And annoyed at how many people I have heard from today say that this is the cancer I would want to have. I just wanted to hear other peoples stories and what I can expect going forward. Surgery, radiation, etc? If you go in for a lumpectomy, is there a chance they will find extensive DCIS and end up as a mastectomy? Also, this is the surgeon I used to remove my ADH, but now that it's more severe should I be getting a 2nd opinion, or is surgery recommendations pretty straight forward with this diagnosis. I'll take any info anyone can give. I'm only 35 with 2 small kids, and so scared.

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  • Annette47
    Annette47 Member Posts: 957
    edited December 2014

    Sorry to hear of your diagnosis. It may be the cancer you'd want to have, but no one wants to have cancer!

    In answer to your question, yes, it is possible that a lumpectomy may reveal widespread DCIS that leads to a mastectomy, but at the same time it is even more possible that it won't. And remember, you can always go from lumpectomy to mastectomy, but not the other way around.

    Surgery is pretty much a given, and what type will depend on both your diagnosis (how large an area of DCIS you have compared to your breast size) and personal preference. If you choose a lumpectomy, the standard of care is to follow it with radiation. Some women have been able to forgo it, but especially at your young age, it will most likely be recommended. I had radiation and it really wasn't that bad at all. If your cancer is hormone positive, they will most likely also recommend Tamoxifen. You can discuss with your doctor the risks and benefits of it. My oncologist told me it was up to me, and I decided to try it, knowing that I could stop the drug if the side effects got too bad. I've been on it for almost 2 years and it really hasn't been bad at all ... well worth the peace of mind for me, but everyone has to come to their own conclusions about risks and benefits.

    As for whether or not you need a second opinion, that's up to you. I had done enough research that I knew that my surgeon was one of the most well respected in the area, and had a good idea what the typical recommendation would be in my case. Had any surprises come up, either with my diagnosis or treatment plan, then I might have gone with a second opinion, but I felt that my case was fairly straightforward and could be handled locally.

    Hope this helps and best of luck as you navigate this process ... you are in what most people find to be the worst part - knowing you have been diagnosed with cancer, but not yet knowing what you are going to do about it!

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Nicole-

    We want to welcome you to our community at Breastcancer.org. We're sorry for the circumstances that bring you here, but we're so very glad you joined us.

    Lumpectomy followed by radiation therapy is a common treatment protocol for DCIS. If the DCIS is localized in one area of the breast and your margins are clear, you're a good candidate. You can read more about this and other treatment options here: http://www.breastcancer.org/symptoms/types/dcis/tr....

    If you're comfortable with your surgeon and the plan he set forth, then a second opinion might not be necessary. But, this is a huge decision, so if you have any doubts at all, or just want confirmation that you're making the right decisions about your treatment, we always encourage getting a second opinion. Sometimes hearing that you're doing the right thing can make all the difference.

    Please keep us posted on how you're feeling, we'll be thinking of you!

    The Mods

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  • april485
    april485 Member Posts: 3,257
    edited December 2014

    Nicole, as scary as this is, you will get through it. I know that the word cancer can strike terror in anyone, believe me. After your treatment plan is in place, you will begin to feel more in control. Please read BEESIE's thread about DCIS. It is called "A Layman's guide to DCIS" and is a sticky at the top of this subject. Best to you!

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  • have2laugh
    have2laugh Member Posts: 132
    edited December 2014

    Nicole- my little one was three when I was diagnosed so I know the stress involved with having young kids and wanting to make the best choice. Yes, you could have more than one surgery-margins and pathology findings can change the plan-I had two and second was a bit more involved- multifocal DCIS found in first surgery-so I knew going in if this didn't get better margins only recommendation would be mastectomy. I did get close but clean margins second time around so able to move onto radiation. I was also initially annoyed and disappointed what people say regarding DCIS, but I have to say this group provide wonderful information. I found another persons recommendation to use Memorial Sloan Kettering DCIS reoccurrence tool to be very helpful when considering Tamoxifen. Other than uterine changes seen on ultrasound but not bothering me at this point, I have found Tamoxifen pretty easy. I was very nervous and resistant to Tamoxifen so this is saying something! Best of luck to you!

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