Take two

This morning we had what looks to be the our last trip to the Cancer Center for at least a couple weeks now. Jul’s genetic tests for BRCA1 and BRCA2 came back negative. This is great news for her (and the women in her family).

We now officially have no outstanding tests and we are not waiting to talk to any doctors. I can’t even tell you how good this feels. We plan to spend time walking in the woods this weekend to reflect on the chemo decision and hope to finalize our plans soon.

And I will put down my bag of rocks here and keep walking. Because these rocks are heavy and my shoulders are sore.

The rocks, as it turns out, will notice no difference.

We had a very positive meeting today with Dr. Carlson, our oncologist. I’m not sure if it is because he has so much experience dealing with crisis, but he had an amazing demeanor. He started the conversation by asking us to list all the questions we had so he was sure he answered them in our discussion. By the way he watched us when we talked, I could tell he did this not only so he could answer our questions, but also to gauge our head space. He was calm, confident, patient, and personable. I wish there were more doctors like him.

“I expect you to do well,” he told us to start, “this is the opposite of what we thought when you first came to us. You have some hard decisions to make but that is because you are in a good position.”

We talked percentages, therapies, side effects, studies, and doctors. He actually went one layer deeper and explained to us the personalities of some of the doctors who run some of the higher profile studies. Net-net he feels like for every study we could find that points to Jul’s condition being more concerning than pure DCIS, he could find an equivalent that shows it is not. As Bry commented on the last post, there is a great deal of uncertainty in these studies and it is hard to tell where Jul fits. Additionally, there is margin of error associated with the pathology report. The pathologists could have missed sections of microinvasion. Alternatively, many women diagnosed with pure DCIS treated only with surgery who have never had a recurrence could actually have had undetected invasive components to their cancers.

So it comes down to how risk adverse we want to be. Dr. Carlson told us there were four possible paths to pursue. The first, text book recommendation, would be do to nothing more. Many doctors believe that treating Jul’s cancer with a mastectomy is the only treatment needed. The second path is adding Tamoxifen as part of her treatment, the third is adding chemo and the fourth is adding both Tamoxifen and chemo.

While nice to hear that most doctor’s would recommend no further treatment, stopping with just a mastectomy feels too optimistic. Tamoxifen seems like a good bet. It is a five year treatment with relatively few side effects and will decrease her chance of recurrence in half. Chemo is the harder choice. It can have bad long-term side effects and is quite uncomfortable.  It will decrease her chance of recurrence by one third. The chemo treatment he would prescribe would be four cycles, one treatment every two weeks. So it comes back to those studies. If you take the most optimistic study, the benefit you get from chemo is offset by the damage you do. If you take the most pessimistic study, then it could add some benefit. If you take the middle road, her disease-free survival rate goes from 91% to 94% with chemo alone, 91% to 95.5% with Tamoxifen alone and 91% to 97% with chemo and Tamoxifen.  She would gain 1.5 percentage points by adding chemo to the Tamoxifen.  Chemo for 1.5 damn percentage points.

In the end, Dr. Carlson felt this was not a decision we would be able to make objectively. He advised us to go with our gut and he told us there wouldn’t be a wrong decision. When Jul asked Dr. Carlson what he would tell his niece to do, he laughed and said that he loved his niece very much. He also said that his niece was an oncology nurse so she would probably tell him what to do. Then he confidently looked Jul in the eye and told her he would tell his niece to take Tamoxifen.

We are very encouraged by his optimism and are in the process of looking for our guts.

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…”

Jul and I are heading up to San Francisco this afternoon to get a second opinion from a pathologist who specializes in DCIS.

His initial report from looking at Jul’s slides indicates .9mm of invasion (even better than 3mm), an anterior inferior margin of .5mm, a clear left breast, and clear lymph nodes. His report mentions that he would recommend adjuvent therapies such as Tamoxifin or Chemo as the risk of recurrence is higher than  that of standard DCIS.

More tonight after our discussion with him.

A quick update on where we are…

Based on the final pathology, Jul has been diagnosed with Stage 1a breast cancer. As I mentioned she had three millimeters of invasion. This means DCIS broke through the wall (thus became Invasive Ductal Carcinoma) and grew to the size of three millimeters. This is a small area that we caught early. We consider ourselves lucky because this area eventually grows into a tumor. Millions of women aren’t diagnosed with breast cancer until this area becomes detectable by a breast exam.

Treatment from this diagnosis will be dictated by percentages. If there is a high percentage of recurrence and chemo will help, chemo it is. Same goes for Tamoxifen. Everything we have read suggests that this amount of invasion shouldn’t require chemo but we need to discuss with our oncologist. One open question is whether Jul’s cancer is HER2/neu positive. HER2/neu is a protein that, if found, indicates a particularly aggressive form of cancer. We were supposed to get the results of this test last week.

The other pending test results are Jul’s genetic tests. Genetic tests for women with breast cancer look for two genes - BRCA1 and BRCA2 (cool kids pronounce that Brah-ka one/Brah-ka two). The results of this test will also change how we treat Jul’s cancer. If Jul is BRCA1 positive, her chances of having a recurrence are greater and her chances of getting ovarian cancer are 40-60%.  We would want to remove her ovaries but not until age 40.

I talked about margins in my last post. “Margins” is surgeon for “amount of good tissue between the cancer and the stuff we cut out.” The way the pathologists figure out margins is they coat the tissue in ink when it is removed. Then they examine the tissue and measure the distance between the cancerous tissue and the ink. The gold standard for margins is 1 cm although anything over 2 mm is deemed acceptable. Dr. Dirbas got less than 1 mm in one area. So on May 5th he will remove more skin in order to improve this margin when Dr. Kahn gives Jul her permanent implant.

We are also seeking a second opinion on the pathology from an expert breast pathologist named Dr. Michael Lagios. His specialty is DCIS. He will be able to confirm the size of the DCIS and the amount of invasion. Sometimes with a large area of DCIS, there are multiple areas of microinvasion. We are confident that there is, in fact, only the one 3 mm area of invasion since the Stanford pathologists took three weeks painstaking searching for it but one always feels better after getting a second opinion. If this doctor does find other areas of invasion, chemo will be more likely.

We will update you when the HER2/neu results arrive, when we get our second opinion and after we meet with our oncologist. Keep sending the positive vibes our way; they have been working well so far!

The wait is over! The results are in! Dr. Dirbas called with the pathology report. I know, it is hard to believe. We are having trouble believing it ourselves. We were just enjoying this “not knowing the details” period so much, we were so sad to have it come to an end.

The pathology report shows 6 cm of DCIS with a small 3 mm area of invasive cancer. So like me, she has stage 1 cancer - stage 1a to be exact.  The two sentinel nodes are completely clear.  The invasive cancer is small enough Dr. Dirbas thinks chemo is out of play but Tamoxifen is probably in play. We will talk about this more with our oncologist Dr. Carlson in, get this, three weeks. Because hell, what is the rush, right?

Dr. Dirbas confirmed that in one area, the clear margin was less than 1 mm.  The gold standard for clear margins is 10 mm all around.  Therefore, he will go in during the second surgery (the surgery during which Jul will receive her permanent implant) and take more tissue and skin in order to make this margin clear.

Overall good news tempered by realism.  The extremely conservative Dr. Dirbas promclaimed, “I doubt this one will come back and bite you.  I think we got away with one here.”  We’ll take it!

It has been an agonizing ten weeks since we first suspected something was wrong. It was hard to believe that we needed to pull out our battle gear yet again, gather our troops, and head off into the terrifying unknown. We were just beginning to breathe again, looking forward to life outside of the doctor’s office. Scott was cancer-free, two years.

The doctors originally reassured me that it was nothing – a fluid-filled milk duct. I was too young for cancer. I was being a bit over cautious given Scott’s ordeal. Luckily my body put up a red flag when it had had enough of my reassuring doctors and I immediately heeded its warning. That was ten weeks ago. Feels like a lifetime. Please, please listen to your bodies. They are amazing creations and they are so very wise.

My reaction to terror is to figure out the worst case scenario and then learn how to deal with it. In this case, my worst case scenario was that my cancer had metastasized to my organs and would be considered terminal. I didn’t want to die. I wasn’t ready to die. I tried to understand this possibility yet at the same time realize that it was remote. I found solace in the advances medicine has made regarding breast cancer. They are amazing and new treatments literally come to market all of the time. In many cases, breast cancer that has metastasized can now be considered a chronic illness, not a death sentence. I can do this.

I decided that my motto would be “I will do whatever I need to do.” That was all. That is what I tried to do. After each test, after each bit of news, after each doctor’s visit I would say to myself, “You will just do whatever you need to do.” Okay. I can do that.

On I went. It felt as if I was climbing a really big mountain with really mean monsters lurking everywhere. I took one step at a time. I counted, “1, 2, 3, 4…1, 2, 3, 4…1, 2, 3, 4.” I never looked up. I only realized that I was getting closer and there I was, still going. “Just breathe,” my mom kept telling me. So I did. I was doing it and behind me there you all were, cheering me on, pushing me ahead, and giving me love and encouragement and literally nourishment along the way. I felt the warmth of your kindness and the strength of your friendship every minute of every day. You were the light along my dark way.

I don’t know how to adequately thank you all. There is no way. I am eternally grateful. What I want you to know is how much each and every gesture helped me. I know how hard it is to know what to say or what to do, especially when you are dealing with an introvert. How much is too much? How do I show I care but not overwhelm? How do I respect her privacy but let her know I am here? Well you did it! We relied on you and there you were. I am filled with an overwhelming sense of gratitude and now it is I that am unsure of how to let you know just how much you mean to me. I am unbelievably lucky to have had you by my side, along the way, up my personal mountain.

I haven’t reached the top yet but I do see the light. I am still not sure what else lies in my path but my motto holds true. I will do whatever it is I have to do. That’s that. There is one last favor I ask of each of you. Take a moment today or tomorrow to hug those you love a little tighter, to tell those you love how much you do so, and take a deep, healing breath in, letting your body know just how much you honor and cherish it.

Your ever grateful friend, cousin, niece, sister, wife, daughter,

Julie