DCIS with metastasis

I was also concerned about metastases after DCIS. There are a number of ladies that had pure DCIS as an original diagnoses who progressed to stage IV. I counted about a dozen of them over the years this site existed.

Pure DCIS by definition cannot metastasize. Anyone who has seemingly progressed from DCIS to Stage IV absolutely MUST have had some intervening invasive cancer. In very very rare cases it might be that it was just never found, but most of the time with people on these boards they were initially diagnosed with both DCIS and some invasive cancer (usually IDC) but only put the DCIS in their diagnosis line, either because they got confused about which was which or because the DCIS was larger so they mistakenly thought it was more significant.

Yes, this can happen, so oneblessedgirl, you should get this checked out.

But having said that, I will also say that in my almost 11 years on this board, I have only seen one case where it seems quite certain that someone went on to metastasize, without first having an invasive recurrence, after a diagnosis that appeared to have been pure DCIS.

It is true however that if you look at the signature lines of the women here, or if you read the posts, it seems that this happens a lot. The problem is that many women either misstate their diagnosis, or they don't fully understand their diagnosis. In the past, when I used to post more often, I would always gently probe if I saw a situation where it appeared that someone with pure DCIS had moved straight to metastasis, without an intervening invasive recurrence. Inevitably it would come out that the original diagnosis wasn't actually pure DCIS after all. Here are some of the give-aways:

- If someone indicates that their diagnosis is DCIS but mentions any stage other than Stage 0.

- If someone who says that they had DCIS mentions that they had chemo or Herceptin. Neither of these treatments are given for pure DCIS (the exception being a few hundred women with DCIS who participated in one of two Herceptin clinical trials).

- If someone says that they were diagnosed with "invasive DCIS", "DCIS with invasion" or "DCIS that became invasive", or if they mention "invasion" in any of their posts.

"DCIS" is a term that seems to stick out and stick with people, whether it's written in a pathology report or mentioned by a doctor. Invasive breast cancer, however, is rarely called "IDC" (which might stick out in the same way) but instead is usually referred to by the terms "invasive" or "infilitrating" or might even be referenced using the subtype, such as "mucinous" or "ductal". A pathology report might read as follows (and these are pretty simple examples compared to what's in most reports):

Histologic Type: Infiltrating ductal carcinoma. In-situ Component: DCIS present.

Diagnosis: Histological examination shows foci of mucinous carcinoma with associated extensive solid and cribiform DCIS.

It would be easy for anyone reading lines like these on a pathology report to miss that they have invasive cancer, and think that the diagnosis is DCIS. In the past I have often suggested that women check back to their original surgical pathology report to see if the words "invasive" or "infilitrating" (or any of the subtype names for invasive cancer) are present. You'd be surprised how often women would come back, totally shocked to have discovered that they actually had invasive cancer right from the start, but had missed it in the explanation from their doctor and in the reading of the pathology report.

The other thing that occurs is that someone may initially be diagnosed with DCIS via a needle biopsy, and then the diagnosis is upgraded to invasive cancer after the lumpectomy or mastectomy surgery. The DCIS diagnosis was preliminary; the final diagnosis in this type of situation is IDC. However what sometimes happens is that either the individual doesn't change her signature line stating her diagnosis to be DCIS, or she doesn't understand that the diagnosis is no longer considered to be DCIS (even though she might realize that she has invasive cancer). It happens a lot.

As I have often said in the past, be careful to not believe everything you read. Especially when it comes to individual's descriptions of their diagnoses. We'd like to believe that everyone here accurately understands and communicates their diagnosis, but too often, that's simply not the case.

One last point. Most studies over many years have shown that the survival rate for someone initially diagnosed with pure DCIS is in the range of 98% - 99%. A couple of studies put the figure at 97%; I recall one that had it at 95% but I've also seen at least a couple of studies that had the survival rate at 100%. So 98% - 99% seems to be a pretty accurate average. Importantly, however, the majority of women who develop metastasis after a initial diagnosis of DCIS first develop a localized invasive recurrence, either in the breast (for those who had a lumpectomy) or against the chest wall (for those who had a MX). Once there is an invasive recurrence, the prognosis is equivalent to the prognosis of someone initially diagnosed with a similar invasive cancer. Only a fraction of a percent of women initially diagnosed with DCIS will develop metastasis without first having a detected invasive recurrence. Even the most dire study to ever come out about this, just last year, put the rate at only 0.48% (i.e. less than 1/2 a percent). Breast Cancer Mortality After a Diagnosis of Ductal Carcinoma In Situ

As to the pain in your thigh, see an orthopedist to rule out any conditions unconnected to cancer. It could be referred pain from the knee or hip, a stress fracture, bursitis, I.T. band syndrome, any number of things (and if you’re on a statin, that’s one of the side effects).