Take two

I wanted to close this blog down with one long overdue post. Jul has recovered from her surgeries and has a full range of motion on her right side. She still gets phantom pains where they removed her breast but if that is all we are left with, we consider ourselves lucky. Jul hasn’t seen any side effects from the Tamoxifen and she will take it for the next five years. All data shows the cancer was removed.

My cancer brought me a great deal of clarity and erased an immense amount of fear. I am comfortable with my inevitable death and feel oddly invincible as a result. This is an amazing place to be. I watched Jul work through this minefield of growth and feel lucky to stand with her on the other side.

Our second dance with cancer made it brutally clear to me that while I was comfortable with my own mortality, I most certainly was not comfortable with Jul’s death. While I found my own death peaceful, the idea that she would leave me here, alone, was terrifying. Working through this fear was a journey that started the day we found out how bad things looked for her. I am confident I have found my soulmate — the brutal reality that I might not live my life with her was earth shattering.

So much of what I have learned over these past three years I see expressed by endless cliches on t-shirts and bumper stickers. But there is a gap between reading these words and understanding them. And then an even bigger gap between understanding them and living them.

The moments I have, the right now, are all mine. My experience, our experiences, gave us anchors to remember this. Radiation tattoos on my chest, surgery scars on our bodies, simple habits like rubbing my thumb against my index and middle finger. Each of these pull me back to now and remind me what is important.

Richard Bach said it best in his book Illusions,

Every person, all the events of your life, are there because you have drawn them there.

What you choose to do with them is up to you.

I am sitting on the couch in our bedroom, looking at the leaves blow in the trees above our house. There are few sounds more peaceful than that of wind gently rustling the leaves. The house is quiet and my puppy is asleep on my chest. Jul and I didn’t choose to live — that was just luck. But given this chance, we both choose life. I choose to feel my puppy’s heartbeat against my chest. I close my eyes and hear Jul’s breathing as she sleeps across the room. I choose to feel the wind roll in through the window and brush across my skin. I choose to be here, right now. I choose to be more alive than I could have ever imaged possible. I choose this moment.

Thank you all for being a part of this journey.

Jul is resting comfortably.

Jul goes in for one more surgery tomorrow morning. Shouldn’t be as intense as the last one although those stupid drains will be back. I’m hoping they will let us go home at night but right now they are predicting we will stay.

And our gut said, no chemo. But we didn’t trust our gut.

We journeyed to the woods, deep in the mountains. Walked through the mud. Floated sticks across the glassy lake. Stood in the sun on the ridge. The trees said, “Be still and strong. We have stood through fire and storm, drought and cold. We did not fight against it, and instead swayed in the wind. We have existed for thousands of years and will exist for thousands more. Just be.”

We journeyed to the desert, deep in Arizona. Walked through the dust. Piled rocks on the sand. Stood in the sun and heat on the ridge. The desert plants said, “Be still and strong. We have stood through intense heat and storm, drought and cold. We did not fight against it, and instead swayed in the wind. We have existed for thousands of years and will exist for thousands more. Just be.”

Jul journeyed to see a DCIS expert, deep in LA. Drove with Melodie to the hospital. Analyzed the situation. Asked many questions. Stood with the doctor in front of the whiteboard. The doctor said, “No chemo. No way. Chemo is not for you. Trust your gut.”

And our gut said, no chemo.

And we were sure.

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!