DCIS to Stage IV?

[Mtngrl]

I've noticed from signatures that a number of our members were diagnosed and treated at Stage 0 but ended up at Stage IV.

If you are one of them, how long did it take to go to Stage IV? Did you get Herceptin as part of your initial treatment? What other treatment did you have?

Gayle Sulik, who wrote Pink Ribbon Blues, writes wonderful blogs about breast cancer, "awareness," "pink ribbon culture," and the "cancer industrial complex." She's a great writer, and a thorough researcher. She had been saying that DCIS doesn't become metastatic. I posted a comment on her blog saying I knew of at least two people in this forum who had had the misfortune to go from 0 to 4. In her next post she didn't distinguish Stage 0 from the other stages in making her point about metastasis.

(She has a facebook page--Pink Ribbon Blues).

[chrisy]

Guess I'm one if the "special" ones. Initial treatment was mastectomy only. No rads or systemic on the theory there was nothing to treat. After about a year I did a yearbook tamoxifen (supposedly for prevention!) then a year later presented with extensive liver mets.
At the time of my initial stage 0 dx, it was not standard of care to even test for er/pr/ her2 on dcis, and herceptin wasnt approved at all in the adjuvant setting.

So my initial chemo/herceptin was after the stage 4 dx. Which was just over two years later

Hello,
First time posting, long time viewing. I was stage 0 two years ago, then was cured after masectomy. 18 months later i felt a lump in my armpit. Now stage 2b, had AC-TH 12 weeks, chemo, and finishing up last two Herceptins. No one ever told me of any chance of reoccurrance After the fact, my dr. stated that he had two women that this had happened to. Nice to know after the fact.

[Debbie L.]

Amy, my understanding about the thinking regarding those who appear to go from stage 0 to stage IV (without stopping anywhere intermediate to stage IV) is that the initial diagnosis was incorrect -- that it missed an invasive component of the disease. There is no way to prove this, but this explanation seems the most logical to me. DCIS is known to have a tendency to be widespread thruout a ductal system -- and even the most excellent and exhaustive pathology search cannot look at every bit of tissue, so it's reasonable to think that in a small percent of DCIS, the diagnosis is wrong.

Debbie Laxague

[chrisy]

Debbie, I agree. I suspect that with mine, somewhere there was an invasive component that may have already shed stray cells into my bloodstream before detection. And without any adjuvant therapy, it went on it's merry way. Howlever, we've seen more and more studies on dcis and assessing which ones are higher risk - and possibly warranting some adjuvant treatment.

Also, important for people to remember is that it is still extremely rare. My Ucsf onc who deals only with breast cancer sees only a very few such cases. My local onc had never seen one in all his years in practice.

So...although it does happen, it is important to keep it in perspective.

[Becky]

Our dear member "Bill"'s wife Nicola was diagnosed with DCIS - 18 months later during gall bladder surgery, she was diagnosed with extensive liver mets.

[snolan]

Though I was not stage IV, I was dx as DCIS had to have a mastectomy due to the amount of area involved. They found the Her2 after the pathology study. It didn't show up on the mamogram or biopsy. I got lucky in a sense that they found it early. Now just hoping it doesn't come back.

[Sandra in GA]

I don't know where I read this, but when I was doing research on DCIS, I read that even though DCIS is non-invasive, sometimes a very aggressive (HER2) tumor forms on top of the DCIS. That seems to be what happened in my case. When I found my lump - 10 and 1/2 months after my mamo, the 5 cm DCIS that was undeer the lump had never been detected. One wonders how a 5 cm DCIS and 3 cm tumor do not show up on a mamogram. I just thank God I found it when I did and I have received all the treatments I have.

[Mtngrl]

Thanks for the answers so far. This is interesting.

The fact that anyone can go from 0 to IV (and some quite quickly) underscores the need for better understanding of individual tumor biology, not to mention the need for a real cure. Something like 30% of lower-stage BC winds up at Stage IV, and 6 to 10% of us present at Stage IV. Since it's not the tumor that kills, but the metastatic form of the cancer (which is true, I think, of all solid tumors, but don't quote me on that), that's what should be the focus of the research. And I even thought that before I got Stage IV breast cancer. I just know a whole lot more about it now.

[chrisy]

Amen Amy on the research focus should skew more towards stage IV. Of course I'm biased