A question about recurrence/ new primary and a bit of a vent.

2timer · July 2013

I had DCIS 6 years ago. It was 7mm, grade 1 and the surgical margins were about 5mm. I had a lumpectomy,did radiation and just finished 5 years of tamoxifen last October. I knew from the information on this and other sites that I had a pretty good prognosis since DCIS is a non invasive breast cancer. But having had it made me high risk, and I also had things like atypical hyperplasia and was told that I had "busy breasts". So I did my annual mammo's along with the frequent call backs for more pictures and the occasional biopsy which were always negative; the last of which was this October.

I was scheduled for a 6 month followup but waited until June to get an MRI. I hadn't had one in 3 years so I was planning on having one this year anyway. I had it last month on a Saturday. Got a call from my doctor that Monday morning saying that I needed a followup mammo/ultrasound and possibly biopsy on my left breast -- the one that had been treated for DCIS. I had those Monday. The radiologist that was doing the ultrasound biopsy showed me the images that were worrisome and would be biopsied. She said she was 95% sure that it was invasive cancer. I was stunned but strangely calm. My doctor (the breast surgeon) confirmed it yesterday evening. I was able to get a rudimentary path report that states the size of the lesion is 3.6 (actually there were 2 lesions close together) and a grade 1. I won't know the er/pr or her status until next week.

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I did everything I was supposed to do. I did the radiation even though I was borderline according to the Van Nuys Prognostic Index and I took the tamoxifen for 5 years. I got good margins; I did my followups religiously, and now 6 years later, I end up being, at minimum a stage II. And that is if they don't find anything else (they said my nodes looked normal but that's really cold comfort at this point). If I had gotten the mastectomy then I wouldn't be going through this right now but who does a mastectomy for 7mm of low grade DCIS? I am so terribly disappointed. The DCIS dx was frightening but this one has me completely floored. It's in a different area so I assume it's new primary. But it seems like the vague "shadowing" they saw in October that wasn't considered worthy of a biopsy (they sampled benign calcs instead), grew into a birads 5 by June -- eight freaking months later. And also frightening is the fact that this happened while I was on tamoxifen (at least part of the time). WTH?

At this point I really don't know what I have exactly -- I have to wait until final pathology for that. To say the least I'm not optimistic. I was always nervous about having had breast cancer but I knew it wasn't the kind couldn't metastisize and possibly kill me. And now I have the kind that can.

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Anyway, if anyone has any knowlege of studies or any information that addresses having IDC after having DCIS, could they please post it? I want to know how something like this happens, although I know deep down in my heart there are no definitive answers. If there were, we'd have a cure by now -- or at least more effective prevention. Any information would be greatly appreciated.

Other than this thread I won't be posting in this forum anymore. I don't consider myself someone with DCIS; I'm in the other group now. Plus, I really don't want to scare the new people here. DCIS is grade 0 and it is pretty much curable. Technically it's considered breast cancer but it doesn't spread and if treated properly it has a 100% survival rate. Yes, having it can cause great distress but if you have to have breast cancer this is the one to have. The vast majority of you will never have to deal with breast cancer again -- at most an occasional scare. Good luck to all of you and thanks for reading.

J9W · July 2013

My heart goes out to you. But, from a DCISer, thank you for posting this...I was starting to get lacksidasical about my doctor appointments. As a matter of fact, I'm supposed to do a mammo in August but had decided to hold off until November or December. I think I just changed my mind on that one. Cyber hugs. Janine

Beesie · July 2013

sjack, I am so sorry that you are dealing with this again. But in your post you said something that is very important, which is "It's in a different area so I assume it's new primary." What this means is that you did do everything right last time, and you successfully treated your DCIS. From where it is located in your breast, it appears that this diagnosis of IDC is not related to your previous diagnosis of DCIS.

What you have now is most likely a new diagnosis of breast cancer. Every woman who has breasts has a risk of breast cancer. This is true whether they've had cancer before or whether they haven't. And even women who don't have breasts have a risk of breast cancer. There is a discussion thread on this board started by someone who had a recurrence after having had a bilateral mastectomy. When you read through that thread, you realize that even after a BMX, you still have to be diligent because you still have a risk of recurrence and you still face the risk that you might develop a new primary. You'd be surprised at the number of DCIS women on that thread.

You mention that the DCIS "made you high risk". That's not actually true. Whether you'd had DCIS 6 years ago or not, you were high risk. But until your DCIS was discovered, you just didn't know it. The DCIS was evidence of your being high risk - it didn't cause you to be high risk.

Although the DCIS diagnosis was the first sign that you were high risk, to be fair, it really was impossible to know what your risk would be going forward. All of us who've had breast cancer before are thought to be higher risk than the average woman to be diagnosed with BC again, but this is simply based on the assumption that if our breast tissue allowed cancer cells to survive and thrive previously, then maybe that could happen again. The fact is however that most women who are diagnosed with breast cancer one time are not ever diagnosed again. So while it's true that all breast cancer patients on average have a higher risk than women who haven't had BC, no one can say whether your risk, or my risk, or anyone's risk, is actually any higher than average. So you can't be upset with yourself for making a decision based on the very strong odds that you wouldn't ever have to deal with breast cancer again.

Might you have avoided this diagnosis if you had had a MX? Maybe, but maybe not. There's no way to know. And here's another way to look at this. You would have been facing this diagnosis even if you'd never had DCIS - this appears to be a separate cancer that has developed. If you'd never had DCIS, you would not have been having 6 month checks and MRIs. And in that case, this diagnosis might have been found much later, when it was much more serious.

None of what I am saying is going to change the situation that you are in. You've been diagnosed with breast cancer twice, and that really stinks. But you did not do anything wrong last time. You successfully treated your DCIS and you made treatment decisions based on the best information you had. There was no way to know that you would be one of the unlucky ones who is diagnosed twice. I am so sorry that you have been. (((Hugs)))

A question about recurrence/ new primary and a bit of a vent.

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