Newly diagnosed...waiting for oncolocgy appointment

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2tails
2tails Member Posts: 86
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Good morning! I had a needle localization excisional biopsy done on June 21st after a stereotactic biopsy revealed LCIS & ADH. Low and behold, there was DCIS lurking in there as well. I met with the BS yesterday & this is when I received this news.The path report states no invasive tumor present. The DCIS removed from the biopsy only measured 0.5cm in 2 out of 32 slides, so I believe that it means it was a very small tumor. I meet with the oncologist next week. Is there anyone else that has LCIS & DCIS? I am not sure of the significance, but the BS is concerned about having LCIS, DCIS and ADH all in the same sample, although he does believe he got all of the DCIS out. Just trying to steady myself for what the future may hold.

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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2013

    2tails, if you'd had just a needle biopsy, with ADH, LCIS and DCIS all found, there would be a reasonable risk that something more could be lurking.  But since you had the excisional biopsy, the odds are good that this is it.

    So what does it mean?  I think the biggest question for the oncologist is what he thinks your risk is to be diagnosed with invasive cancer, given the combination of ADH, LCIS and DCIS that was found.  And based on that, what are the options in terms of treatment?  Being ER+, no doubt hormone therapy will be put on the table and that probably will be the recommendation of the oncologist.  Although your area of DCIS was small and only grade 1, I would guess that rads will be recommended too. 

    The information you need from your oncologist is an understanding of your risk level - both your risk of recurrence from the current diagnosis, and the risk that you face to develop a new primary breast cancer - and how much each treatment option will reduce these risks.  Then you get to decide what you want to do.

    Good luck with the appointment.

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  • 2tails
    2tails Member Posts: 86
    edited July 2013

    Beesie, thank you for your post. You helped me put to words what I was thinking but couldn't seem to organize into specific questions. I do realize that DCIS is a highly treatable breast cancer and is found in the earliest stage possible, but for some reason when it was just LCIS & ADH I was ok with it. Adding the DCIS seems to have thrown me a little. I even told the breast surgeon that I was not expecting the DCIS to be there (even though I knew it was a possibility). I suppose I just need time to absorb the information and I will feel better after the oncology appointment. It always feels better once a plan is in place. 

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  • 2tails
    2tails Member Posts: 86
    edited July 2013

    So my oncology appointment has come and gone. It took me this long to digest what he had to say. First he recommends genetic testing/counseling. We talked at length about what the results can mean as far as treatment. I was floored with the discussion of bmx and ovary removal for positive results. In my mind at the time it seemed a bit drastic for a non-invasive cancer. I felt like I got sucker punched in the appointment. That was Tuesday, now its Friday and I have a much clearer view of what it means. First, I do not know what my BRCA status is yet so no sense in worrying about the unknown. Second, knowledge is power and even if it comes back positive, the genetic counselors can help me with what MY risks are for MY particular case. With this information I can make the decision that is right for me whether it's surgery or close monitoring. I am no longer afraid of the possibility of BMX or oophorectomy, if I can significantly decrease my cancer risk before it happens...I am going to do it.

    On the flip side...my treatment plan for a negative result is typical for DCIS patients...rads & tamoxifen. He did say that if I decided not to do tamoxifen he would not consider it a "big mistake" like someone refusing cancer chemotherapy. He does strongly recommend rads though.

    That's where I am at...waiting again for an appointment for genetic testing/counseling. This journey is definitely a roller coaster ride of emotions. 

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  • 2tails
    2tails Member Posts: 86
    edited August 2013

    Just an update, if anyone is intetersted in my story Tongue Out. I went to see the genetic counselor, had the test done for BRCA mutations. I was not supposed to get the results until the 19th, but my oncologist called the center where the test was done and got the results while I was at my appointment with him yesterday. No mutations detected. He did make me promise to keep my appointment at the cancer prevention center to officially get the results to talk about and get tested for other rare syndromes. Of course I will!! But now I can move on with treatment. I have an initial consultation with a radiation oncologist next week and will start tamoxifen when radiation is complete. It feels so much better having a treatment plan, although I am well aware that radiation will not be a walk in the park. Thanks for listening! Cool

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    2tails, that's great!  I'm glad your appointment went well and that you got the good news on the genetic testing.  And it's good that you finally know your treatment plan.

    I hope thats rads is easy for you!

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  • 2tails
    2tails Member Posts: 86
    edited August 2013

    Thank you...in the words of Leave it to Beaver "I'm not ascared Wally"! Cool 

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