Battleship Week

When we saw Dr. W and Dr. MHW yesterday, I had asked if I would get tattoos on today’s visit. Dr. W said yes, and added with a sly smile that it’s battleship week.

Don't give up the ship!
Don’t give up the ship! (Thanks, L!)

It is with this in mind that I proudly share my battleship tattoo. My friend L sent this to me a few weeks ago, along with some other great temporary tattoos. Today seemed like the right day to get this temporary tattoo party started. Plus…battleship week.

We went back to RI Hospital today for my radiation “planning meeting.”

This was less a meeting than a 40 minute prep session involving the saddest excuse for a spa experience I’ve ever seen and a bunch of deep breathing.

Let me explain.

When I arrived, I was instructed to change out of my shirt and bra and put on two johnnies: one tied in back and one tied in front. I was advised that “they” prefer that we use the blue ones to tie in front. This seemed awfully picky to me, until I put them on, and realized that the blue ones provide a refined, smoking jacket sort of air to the whole hospital gown thing, and I was pleased to have followed the directions. I then walked myself to Waiting Room A, where Husband had already been told to wait for me.

Upon entering Waiting Room A, I discovered that they have an abundance of comfortable faux-leather chairs there for our waiting pleasure. I have to admit that this is far more comfortable than my previous experience with a radiation clinic waiting room. (Still, in defense of the Brigham & Women’s radiation clinic, they had really great snacks.)

A few minutes later, a radiation tech named Sheena (that’s actually her name, I couldn’t help but to include it here) led me from the waiting room to the scanning room. Based on her extended vowels, I judged Sheena to be of Midwestern origin. This made me like her right off the bat.

Sheena introduced me to her colleague, who prepared a quick-set plaster in a sterile blue bag while Sheena told me what we were about to do. I was there to have a CT scan that would give the radiation oncologists a better view of my chest. They wanted to have a big picture view of my entire chest, and also to take some images of my heart using the deep breathing technique I mentioned yesterday.

Dr. W came in to ask me a few questions and be sure I understood what was going on. He said that I’d get to lay down in my “mud bath” in a moment, and I expressed my surprise to find that they offered these spa experiences as part of radiation. Sheena’s colleague then placed the blue bag on top of the scanning table. Laying on my back, I reclined on top of the bag and put my hands over my head. I was told to lay very still and keep my head turned to the right so the plaster would set. The goal of this process was to create a customized mold that will be placed underneath me during each radiation treatment, so that I’m in the same exact location each time.

While the mold was setting, they began the CT scans. First they scanned me while I breathed normally, and then again using the deep breathing technique. I had to hold this deep breath without moving at all for 30 seconds (this is the duration of each radiation zap during treatment, with a few zaps aimed from different directions in each treatment) so they could get good images of the location of my heart, and also to be sure that the deep breaths were consistent. I’m sure they did other, much more technical things, too.

It's that teeny little speck just above the "v" of my shirt.
It’s that teeny little speck just above the “v” of my shirt.

Finally, once the scans were finished and everyone was satisfied, they gave me my tattoos. They are, alas, far less interesting than my battleship. These are tiny little dots that you would not even notice unless I pointed them out: one on each of my sides and one on my chest. Husband tried taking a photo of the side tattoos and I VERY quickly decided that those would not be shared.

Next step: the practice run. This will happen August 31. In the meantime, the docs will look at all of my scans to make the final determination about the short vs. long course.

At the end of my visit today, Dr. W told me that my deep breaths were completely successful in moving my heart out of the way. This is good news, not only for the obvious reason, but also because I think this means I’ll get the shorter course of radiation. (!!) I’ll get a confirmation on this on the 31st, if not sooner. More soon!


Battleship Week

Zappity Do Da

Today’s big news: we are *this* close to having a plan for radiation.

Last week was one of those weeks populated by doctor’s appointments. One was with the surgeon, Dr. D, who said that I’m healing very well from the surgery. She doesn’t need to see me for a full year. (Yay!)

This is not what Dr. D. looks like, by the way.
Dr. D made me an offer I couldn’t refuse.

Husband and I also met with Dr. B, a radiation oncologist at Dana Farber, last week. She gave us her perspective on the pros and cons of doing the shorter course of radiation (16 treatment visits) vs. the longer, traditional course (30 treatment visits). In both cases, the entire breast gets the radiation, which is why this is called “whole breast radiation.”

In short, here’s the difference: The short course is, cumulatively, a smaller dose of radiation, but a higher per-treatment dose than the traditional course. The shorter course also has reduced side effects in comparison to the longer one, which means that my skin would not suffer as much in the short term and would recover better over the longer term.

The accelerated approach is a newer technique, but there are 10 years of solid data on outcomes showing “local control” (meaning no recurrence of cancer) and survival rates that are as good as with the 6-week approach.

Today we met with Dr. W at RI Hospital again, as well as his resident, Dr. MHW.

Dr. MHW gave us the best soundbite so far: This cancer is at most a threat to my breast, not to me.

He explained that, with the short course, the irradiated tissues “perceive” a higher total dose. He had me with that language, so I asked for a little more detail. He went on to describe how the higher-dose treatments make it a little harder for the targeted tissues to rebound from one day to the next. The goal of this whole radiation business is, of course, to eliminate any remaining bits of cancerous tissue, so we don’t want them to be able to rebound. Not one tiny bit!

These images show normal breathing on the left, where the heart (that big gray blob in the center) gets hit with a lot of radiation, as indicated by the colored lines. The image on the right shows the heart moving away during the deep inspiration breath hold technique. In this particular example, the heart still gets a little radiation, but much less of the organ is exposed. Read more here:
These images show the view looking down into the left side of a woman’s chest cavity from above. The top image shows normal breathing, where the heart (that big gray blob in the center) is in the path of radiation, as indicated by the yellow line. (The green area is the breast.) The image on the bottom shows how the heart moves away from the chest wall during the deep inspiration breath hold technique. Read more here:

Dr. MHW also noted that they were likely to add “boosts” to my radiation treatment, regardless of whether we do the short or long course. These boosts are additional treatments, typically three to five more than the numbers mentioned above, which provide focused radiation to the specific area where the tumor was. These boosts are like a radiation insurance policy.

Both Dr. W and Dr. MHW agree that the short course would be an appropriate approach for me, but they’re reserving final judgment until after some additional scans are done tomorrow to determine the exact position of my heart. Since this is my left breast, there is a chance that radiation could expose my heart…something that we would all very much like to avoid. Dr. W said that many women’s hearts are far enough away from the chest wall that they are not at all affected by radiation, but (thankfully) they check these things out first. If my heart happens to be especially close to the affected area, there is a very simple “deep inspiration breath hold” that can move the heart further away during the short moments when I’m actually getting zapped. But we’ll sort this all out after another planning meeting tomorrow.

For now, I’m glad we’re making forward progress…even though I’m a little bit heartbroken about the fact that I have to go through radiation again.

Zappity Do Da

Hot Stuff

Just saw this bit about a new paper on a Chinese health study, which linked eating spicy food with “reduced risk of death.”

Dat's a long-lived puddy-tat.
No wonder Sylvester seemed to have more than nine lives.

In addition to my concerns that spicy food is apparently related to zombieism, I have to call BS on this one. I am the Queen of Spicy Food. Most women I know crave chocolate. I crave jalapeños.I sprinkle these exquisite dried spicy chilis from Africa on most foods. Husband bought me a cookbook dedicated to using Sriracha in every meal.

And yet, here I am. Writing this blog. About having two cancers.

I’m just sayin’…

Hot Stuff

I’m Positive! For EIC, ER, and HER2

Forgive the click bait with that title. It’s true, but I don’t mean to cause undue anxiety. Everything’s fine.

We met with Dr. M today. Both Husband and I really like Dr. M. He is hilarious, and has an ample supply of one-liners. He has doled them out generously during the two visits we’ve had with him so far, and I expect many more to come. You must understand that these aren’t easy puns or jokey one-liners. They are legitimately funny ways of phrasing the information he’s sharing with us. I’m a fan.

Although I got that call from Dr. D last week giving me the good news regarding my pathology, we hadn’t seen the report until today. Dr. M walked us through it, giving us his medical oncologist’s perspective on the results.

The headlines, as he called them, were as follows:

My rendering of a diagram Dr. M drew for us. The green lines represent the frequent but "spotty" nature of DCIS in an EIC positive cancer. The tiny black dots represent the relative size of the microinvasions.
My rendering of a diagram Dr. M drew for us. The green lines represent the frequent but “spotty” nature of DCIS in an EIC positive cancer. The tiny black dots represent the relative size of the microinvasions.
  1. The cancer is mostly DCIS.
  2. There was a lot of DCIS present in the sample. This was referred to as “EIC positive” in the report, which is short for Extensive Intraductal Component. In general, when DCIS occupies >25% of the cancerous area, it is said to be EIC positive. See a very streamlined primer on this here and a very interesting and much more detailed review paper here. EIC positive cancer is not more aggressive, but it generally has a higher rate of local recurrence. This is an important detail, therefore, because it means that having an EIC positive cancer is a significant risk factor that needs to be managed.
  3. There were at least 3 sites of microinvasions in the sample, but all the microinvasions were smaller than 1 millimeter. Dr. M noted that there is a 90% “cure rate” for tumors with microinvasions that are about 1 centimeter in size (10X bigger than the ones I have, in other words). If you extrapolate that out for my much smaller microinvasions, then, the cure rate should be even higher.
  4. The microinvasive bits were weakly estrogen receptor (ER) positive (but we already knew this from the biopsy results). The new info here is that the microinvasive cancer is also HER2 positive. HER2 stands for human epidermal growth factor receptor 2. With a larger tumor than mine (1cm or larger), the risk of recurrence with a HER2 positive cancer is 15%. Again, because my microinvasions are at least 10 times smaller, my HER2-related risk is much smaller, about 1-2%.

Given this information from the pathology report, we discussed chemotherapy, radiation, and hormone therapy.

Nuff said.
Nuff said.

Chemo: Dr. M advised against it. With my small risk of recurrence (post radiation), chemo would only reduce my risk by another 1%. Clearly, this is not worth all the horrible side effects and other long-term effects of chemotherapy. I see no reason to swallow poison unless it would definitively affect my survival. And my odds are already VERY good.

Radiation: Dr. M will set up a consult with a radiation oncologist at Dana Farber. Because I have two important risk factors (EIC positive cancer and my young age of diagnosis), Dr. M said he thought the radiation onc would likely want to “play it old school” by going with the traditional 6 week, whole-breast radiation.

Still, he thought they might consider an accelerated course of whole-breast radiation, which is a higher dose delivered over 3-4 weeks. Dr. M said the results from this accelerated course have been just as good or better than the traditional 6 week course, and the long-term effects of radiation (such as skin thickening) are reduced by going this route.

However, we were told by the radiation oncologist at Rhode Island Hospital that there is very little research on this accelerated course for someone my age. This is something I want to talk about with both the DF radiation onc and the RI Hospital doc (Dr. W!). I brought this up with Dr. M today. I wanted his thoughts, even though he’s not a radiation onc. To my surprise, he was willing to offer an opinion on this. He said, in my situation, he would advise against me being a guinea pig, or choosing an approach without good data. I concur.

Hormone Therapy: Dr. M feels strongly that I should begin a 5-year course of an aromatase inhibitor once my radiation therapy is over. There are some side effects, of course, but they’re not horrible. The one he’s most concerned about is morning joint stiffness. If this becomes a problem, we’ll revisit this prescription. Though many breast cancer patients take Tamoxifen (which acts differently than the aromatase inhibitor), he said that he leans toward the AI because I have an estrogen positive cancer. Still, he admitted that this is a “soft call” (tamoxifen vs. AI) because my cancer is only weakly ER positive. Taking this drug further reduces my risk of recurrence.

Whew. That’s it. It was a very productive meeting. If only the traffic back from Boston had been as cooperative…

Hopefully I can get this Dana Farber radiation consult lined up quickly so  we can get the whole radiation thing moving. Yee ha.

I’m Positive! For EIC, ER, and HER2

Origin Stories and Remembrances

I managed to sneak in a super-fast consult with the medical oncologist, Dr. M, for tomorrow. You may recall that I have to meet with him to get passed along to the radiation oncologist at Dana Farber. I expect to hear two things from him:

1. I don’t need chemo (this is what he told us previously and there’s nothing that should change this based on my surgery results), and

2. his opinion on whether I need to take a hormone suppressant, and if so, when that would start (and how long it would continue).

Will keep you posted.

I’m really writing today to share an obituary that really resonated with me. This is for Dr. Carolyn M. Kaelin, who was a surgeon and the founding director of the Brigham and Women Hospital Comprehensive Breast Health Center. According to this article, she was also “the youngest woman to hold a position of that distinction at a major Harvard University teaching hospital, and the youngest of several female surgeons in Greater Boston to lead such a center.”

Most importantly, for the purposes of this post, she had two types of cancer: breast, and then brain.

There are many details about her in this obit that speak to me, as they likely will to anyone who has ever had to interact with a lot of doctors.

Specifically, these details made me think of two docs I encountered during my radiation treatment for uterine leiomyosarcoma. My regular doc, Dr. B, was a very formal, “I’m the doctor, you’re the patient” sort of person. She didn’t seem to have much of a sense of humor, and I never felt terribly at ease around her, even though she was very much on top of her game, professionally. I usually saw her once per week during my 5 day/week, 5 week course of radiation in August of 2011. This was called my “on treatment visit.”

I started to suffer two of the primary complications of pelvic radiation, nausea and diarrhea, within the first week of treatment. Dr. B  prescribed Zofran to cut the nausea, and it was starting to work. On the second week of treatment, Dr. B was on vacation, so I saw another radiation oncologist for the on treatment visit. I can’t remember his name, so let’s call him Dr X, because it’s fun, and I’m also unlikely to need to reuse that letter. Dr X was the antithesis of Dr B: funny, informal, and willing to satisfy my intellectual curiosity about this crazy thing they were doing to my body. Oh, and English!

Not that one, silly. I said "DOCTOR X," not Professor X.
Not that one, silly. I said “DOCTOR X,” not Professor X.

Dr. X was pleased with my progress, especially when I reported that I had had a great appetite the day prior to seeing him. He then proceeded to describe the “humours” of radiation, or, as he liked to call them, “the radiation ya-yas.” The radiation ya-yas, he explained, can make you crave certain things and detest others. As in, if you want to eat 3 servings of ice cream on day, blame it on the radiation ya-yas.

And there is the origin story for Team YaYa.

Time will tell whether the radiation ya-yas play out the same way for breast cancer. (Translation: I might not have quite as many excuses to eat ice cream this time around.)

With The Story of Two Radiation Oncologists in mind, you can see why this lovely obituary for Carolyn Kaelin struck a nerve. Not all oncologists (or other docs) have this sort of compassion for their patients, but apparently she did. Fare thee well, Dr. Kaelin.

Origin Stories and Remembrances

I Feel Good

Good news today, Team YaYa. I got a call from my surgeon, who gave me about the best results we could have hoped for.

The lymph node is clean, with no signs of cancer. They found 2-3 additional spots of tiny microinvasions in the sample, but they were each very small, less than 1 millimeter in diameter. Most importantly, the additional microinvasions are a moot point because she got clear margins with the lumpectomy. This means that my original diagnosis holds, and I don’t need another surgery.

Group hug!
Group hug!


The next step is to meet with the medical oncologist again, who will then set us up with the radiation oncologist. We already met with the Dana Farber med onc, Dr. M, but apparently this series of meetings is how they customarily proceed at DF. I’ll try to get this meeting with Dr. M out of the way ASAP so we can get the radiation consult and get that show on the road.

In other news, I’m recovering well from the surgery. The two incisions look good, and I’ve had very minimal pain. The hardest part of this week has been the doing nothing…which is not my forte. But as far as post-surgery problems go, I’ll happily take boredom.

And now, since I can’t yet shake my groove thang without some significant ouchies, I’ve asked Mr. Brown to demonstrate how I’m feeling.


I Feel Good