I'm really not a worrier....but....

1openheart · February 2012

As the 9 month checkup with my oncologist nears, I find myself thinking about breast cancer WAY too much! My DCIS was discovered in two foci in the upper outer quadrant of my left breast after a suspicious screening mammo in April, followed by a diagnostic mammo and then two stereotactic biopsies. Because the area of concern appeared to be multifocal and was high grade with comedonecrosis, we decided on a unilateral mastectomy and tamoxifen. I have a strong family hx. as well, so I had BRCA testing, which was negative. I have always had dense breasts and have had a couple of biopsies on the affected breast over the past few years. They were always B9.

My concern lies in the fact that once the pathology report came back after the mastectomy, there were other areas of DCIS in the upper inner quadrant and areas of atypical hyperplasia in the lower inner quadrant that did not show up on the mammos. While I know that my risk of any reoccurance is very small, especially since I had a mastectomy and since I am taking the Tamoxifen, I can't seem to not worry about missing a new problem in the remaining breast. Last time I mentioned follow up care, my doctors said that mammograms would be enough...no mention of sonograms or MRI's. I have decided to push the issue some when I see my onc. on Wed.

Am I being overly concerned....especially since I am taking the tamoxifen to protect my remaining breast from a new occurance? Thanks for reading my post...it is good for me to have a safe place to stew!

mikita5 · February 2012

Because the area of concern appeared to be multifocal and was high grade with comedonecrosis, we decided on a unilateral mastectomy and tamoxifen. Once the pathology report came back, after the mastectomy, there were other areas of DCIS. I have a strong family hx. as well, so I had BRCA testing, which was negative. I have always had dense breasts

My goodness, I could've written that! DCIS, multifocal, high grade, comedoneucrosis, dense breasts, BRCA test negative, strong family history, more DCIS in pathology report. Only difference is I had a bilat mx and didn't take tamoxifen

I don't think you're being overly concerned at all. Once we have the 'beast', we can never be overly concerned. For your peace of mind, I vote for you 'pushing the issue".

Cyberhugs coming your way.

Kathy

crystalphm · February 2012

I was in the same situation, except I had multifocal DCIS...and I didn't really realize I was doing it to myself, but every day was a worry about the remaining breast.

I did get a MRI, my insistance, 12 months after the amstectomy, and to my horror, 3 places showed up on the MRI...it is a long story with lots of tests, it turned out to be NOT cancer, but I had a second mastectomy 18 months after the first one.

One thing I did not see coming is once you have had cancer, every bleep on a screen will get a biopsy, which is why when 3 places came back that had biopsies that were "inconclusive" I opted to have my second breast removed.

I think anyone with dense breast tissue should have a MRI, especially since you have had cancer once, it just makes sense. But like I said, the down side is the MRI pickes up every little bleep....but for me, I am cancer free and I slowly feel a knot untying inside of me.

oh, I did not take tax. either...

1openheart · February 2012

Thanks for the encouragement, Kathy.

1openheart · February 2012

crystalphm,

I had multifocal and multicentric, but I did not know that until after the UMX. I really am surprised at how much I have been worrying about this. I keep telling myself it is perfectly normal to have concerns pop up at this point in my recovery. I am almost done with all of this except for the aerola tattoo...had nipple made and lift to right breast in November. Everyone who was there with their love and support has gone back to their own lives and worries, as it should be. I am hopeful that as time goes on, I will not think about having something in the remaining breast as often. It was so important to me to keep my healthy breast. I miss the sensation and the feel of my left one and I think my sexuality would really suffer if I lost both. I think that if I can have periodic MRI's I will eventually put this worry to rest. I know that I may have to endure, what I hope would be false positives. But, at this point, I am not ready to consider taking the healthy one to alleviate the worry. Down the road a year or two....who knows. Thank you for responding and take care.

Bogie · February 2012

MRIs may appear to pick up every little bleep, however it did NOT pick up my 1.5 cm malignant tumor (must have been hiding). They found it in path tissue after MX for DCIS.

Note it picked up 3 other mass, that were benign. Cancer is sneaky, in my opinion you can't have enough tests.

alexandria58 · February 2012

I had the BMX for multifocal DCIS. I couldn't stand the prospect of the constant anxiety over the remaining breast. I, however, am a worrier.

1openheart · February 2012

Saw my oncologist this afternoon. She said in a perfect world, she likes to rotate Mammo/US and MRI every six months. She almost always has to battle the insurance company to get them to pay for the MRI. So, we started tha process now for an April MRI. Otherwise, the visit was uneventful. Everything felt fine to her. Yea!

I'm really not a worrier....but....

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