Take two

We met with Dr. Lagios this afternoon to get a second opinion on the pathology of Jul’s cancer. Dr. Lagios is an expert DCIS pathologist. The entire process of working with him has been fantastic — from initial contact to this meeting. He walked us through the structure of a pathology report and made sure we understood everything. He even taped our meeting so we could take it home and review it if there were things we missed during the discussion. [1]

He was able to provide us with several additional details. The first of which is that Jul had a “single focus of microinvasion that measures 0.9 mm, although several of the levels show a scatter of similar microinvasive foci.” He suggested that this scatter was negligible. We are not sure how Stanford arrived at a single focus of microinvasion that measures 3 mm although we can guess that they might be including the area of scatter. Having never seen Stanford’s actual path report, ugh, we can only surmise at this point. Dr. Lagios wryly suggested that it seemed more likely he was correct given the fact that Stanford was having a very hard time finding enough of this invasive component to get a HER2/neu reading. We laughed and agreed.

The executive summary is that Jul’s cancer has a 9% chance of distant metastasis. This is a bigger number than we would have liked, but given the extent of the DCIS it could have been much, much worse. Distant metastasis is a recurrence of the cancer in another part of the body like the liver or the bones. Because Jul had a mastectomy, local recurrence in the breast (or lack thereof) is very remote. Using tamoxifin we can take this down by a third to 6%. Chemo could take it down another 1-2%. So like I mentioned earlier, it comes down to percentages.

Part of the reason one might consider chemo even with such a small percentage improvement is because Jul is so young. Another reason is because all indications are that Jul has an aggressive form of cancer. The HER2/nue results will confirm this.

There are two main studies that give us insight into Jul’s condition. The first was done by Dr. Mascarel and her team. This study looked at 8049 patients (1248 who had DCIS) over a 30 year period. Dr. Lagios noted that Jul’s invasive cancer was DCIS-MI Type 2 based on the fact that the invasive cancer was composed of a few infiltrating tumor cell clusters as opposed to just a few infiltrating tumor cells. Mascarel’s study found that patients with this kind of clustering had a 9% distant recurrence rate and a 5.8% mortality rate.

The second study was done by Dr. Tabar in Sweden. This was a 24 year study of 714 women with 1-14 mm of invasive breast carcinoma. Mind you, Jul’s was 0.9 mm! What Dr. Tabar found that relates to Jul is that women with “otherwise favorable invasive carcinomas [2] but which exhibit casting type microcalcifications have adverse outcomes.” Dr. Lagios told us this study suggests that the casting type microcalcifications seen in Jul’s mammography are more impactful than nodal involvement. This means this microcalcification structure is more concerning than if the cancer had made it to her lymphatic system. Crap.

To me, the second study doesn’t tell us if the casting type microcalcifications are causal or corollary. In other words, do women with distant recurrence happen to exhibit casting type microcalcifications or is it something about the microcalcifications causing the recurrence? Dr. Lagios suggested that these structures could be invasive areas we don’t yet know how to detect, at which point they would be causal.

The real question you have to ask is “did it make it to the blood.” Before our experience I thought the breast cancer path was breast -> lymph -> blood -> organs. It turns out the metastasis to the lymph is only indicative of a later stage cancer that has had more time to spread to the blood. In that way it is only corollary to a cancer that has metastasized to the blood. Sadly at this point there are no tests that can tell us whether it has made it to the blood.

We still await test results on HER2/neu. Dr. Lagios told us that 80% of all high grade DCIS are HER2/neu positive so maybe we don’t need to wait for this.

All and all we feel very informed for our upcoming discussion with our oncologist on Thursday.

I will end by saying, and I quote Dr. Lagios here, “I fully expect [Jul] will get hit by a bus and die when she is 87.” He also followed that by saying “I hope [Jul] remembers not to complain when this is happening.” I told him if it wasn’t a hover bus she would have every right to complain. They have been promising hover cars since I was ten years old. If we are still riding normal buses when I’m 87 I’m going to be pretty pissed off.

***

[1] In reflecting back on both cancer experiences I would recommend that anyone going through something similar buy a mini tape recorder and record the discussions with doctors. Your brain can do funny things when you are talking about survival rates and it is great to be able to go back to a discussion later.

[2] “Favorable invasive carcinomas” makes me chuckle. “This was otherwise a good lemon glass of rotten milk…”

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