Was doing fine but now I'm freaking out

DCISinAZ · January 2017

Hi all -

I am 46 and was diagnosed via stereotactic biopsy with high-grade DCIS after routine mammogram. I have various areas of microcalcification spanning over a 3 to 5 cm area. Because there does not seem to be a pattern to my disease and because my breasts are on the smaller side, my breast surgeon suggested a mastectomy which I am having on January 13 with sentinel node biopsy.

Initially I was freaking out, and then after talking to the breast surgeon, tumor board members, and my husband, who is also a surgeon, I was feeling much better about my long-term prognosis. But, no offense, but then I got on this site. Now I am extremely nervous that I will have invasive breast cancer on final pathology. I am questioning every ache and pain I have in my body as potential metastasis.

I did have an MRI that correlated to what my mammogram had shown. So, I guess that's one thing in my favor.

I am having a unilateral mastectomy, but now I am worried that I should be having bilateral step to me because I do have dense breasts and the DCIS did show comedonecrosis and all the other stuff that sounds really scary.

Can anyone offer some words of wisdom to talk me off the ledge?

Thanks! ❤

ElaineTherese · January 2017

Hi DCISinAZ!

I'm sorry to hear that you are freaking out. I am not an expert on DCIS, so I hope that someone with DCIS chimes in soon. Yes, there is always the possibility that the pathology from your surgery could reveal that your DCIS has an invasive component. But, even if that turns out to be the case, your long-term prognosis is probably still very good. Breast cancer is highly treatable. I was diagnosed at Stage IIIA, and 70+% of women diagnosed at my stage are still alive after five years. For Stages I and II, the percentages are even higher -- greater than 90%.

((Hugs)) cancer -- at any stage -- sucks!

MTwoman · January 2017

Hi DCISinAZ, ElaineTherese is right. There is always a possibility that, once the tissue is removed and a pathologist looks it over, they could find microinvasions or invasive disease which would change your treatment plan. I know the fear of not knowing can be enormous. Try as best you can to relax and take care of yourself prior to jan 13, and getting your pathology reports.

Good luck to you and hope you get confirmation of pure DCIS!

Love2Hike · January 2017

Hi DCISinAz~ I know it's hard not to worry! It was very stressful for me too when I was diagnosed 6 years ago (was 42 years old). I had the same diagnosis as you and had a uni mastectomy on left side. The pathology report afterward showed just DCIS, no invasion and no lymph node involvement. I chose to not do a preventative mastectomy to my right side but with later genetic testing I found out I have a mutation called RAD50 which increases breast cancer occurrence. I did end up having DCIS again this time in my right breast and had a mastectomy 4 weeks ago. Again, pathology report after surgery showed just DCIS.......no invasion. I hope that helps a little to know that I had the same diagnosis (various areas of microcalcifications, high grade) and it was just DCIS. Good luck with your surgery!

AmusingSoprano · January 2017

Hi DCISinAZ

I had a similar diagnosis (DCIS high grade with comedonecrosis). My area was 2.8cm so I had a lumpectomy followed by rads. Yes, there's a possibility that there could be micro-invasion shown on the final pathology but even if there is, it highly treatable as ElaineThere said. It's natural to feel every twinge as something sinister, but the stats are highly in your favour that this is just pure DCIS.

Hang in there, and let us know how you get on. Best wishes for a speedy recovery from surgery.

Annette47 · January 2017

About 20% of the time, a DCIS diagnosis is upgraded to invasive. So that means you have an 80% chance of pure DCIS. And of that 20%, it’s only a tiny fraction that is more than a micro-invasion. Micro-invasions don’t really affect your treatment or prognosis, so that’s another good chunk of cases that do not have to worry.

So no, we can’t tell you with certainty that there is nothing sinister lurking, but we can tell you that the odds of it are very, very, very, low.

Did they do a bilateral MRI to give you a better picture of whether there is anything to worry about in the other breast? Bi-lateral breast cancer is fairly rare, especially having both breasts involved at the same time, but I do know of some people who have had it happen. A unilateral or bilateral mastectomy is a personal choice and depends in part on how much risk you can live with, how you feel about losing your natural breast, and how concerned you are about symmetry. There is a forum here devoted to discussing mastectomy as the issues are the same regardless of diagnosis - it may be worth looking through some of the posts there to get a feel for whether a bilateral might be better for you. One thing to consider is that if there is no current cancer in your other breast, you can have a unilateral now, heal and see how you feel and then possible go back for the other side if you so desire.

sballan · January 2017

I hope I can talk you off the ledge... One thing to make you feel a little comfortable is that your MRI was good. I myself was diagnosed with DCIS initially, and when I had an MRI, had to have two more biopsies, and the other breast which initially was benign had invasive cancer! Suffice it to say, I had two lumpectomies and I am doing fine so far. You will get through this. Even if there is some area of invasive cancer, it is still probably very early which is good. You can also ask your doctor to have an Oncotype test done to see your risk factor. One area of good news for me was that my score was very low. Wishing you peace.

dsj · January 2017

don't freak out. The people on these boards aren't representative. The vast majority get good news and move on. Only a few who got clean results stay for any length of time.

Was doing fine but now I'm freaking out

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