Choosing a Location for Radiation (SCCA or Northstar)

cw: oh great, she's talking about cancer again, when's she ever gonna get back to clay?

Today I met with my radiation oncologist at Northstar Lodge in Yakima. We had met with the radiation oncologist at Seattle Cancer Care Alliance in December, but had never gotten a meeting with the local folks. I was getting anxious because...well...because I am impatient generally and because I wanted to know when and where radiation would happen.

celebrating ">45 day"

I'm just over three weeks past my surgery and I was told that I couldn't exercise or do chores until at least 4 weeks or after getting approval from the physical therapy people. I know I should be happy to chill and relax and have an excuse not to help Sean and Alison move furniture in order to clean the carpet upstairs, and I guess there is a certain joy in reading a book while the two of them carry a drum kit down the stairs, but exercising keeps my mood stable. When I don't exercise, I get cranky and anxious, so for the past 5 weeks, I've been varying levels of hurting, anxious, blue (not just from the dye), and cranky. I'm ready to be done.

the drum kit, not in its natural habitat

I am feeling much better as far as the pain. Yesterday I celebrated ">45 day", a holiday I made up to celebrate the day I could start lifting my surgery arm above 45 degrees. The LYMPHA people (the plastic surgeon and her team) wanted me to resist lifting my arm for at least 3 weeks, preferrably 4, so that the stuff they did to try to prevent lymphedema could have more time to heal. For me, since I'm doing radiation, they wanted me to start lifting it higher after 3 weeks so I'd be ready for radiation (for radiation I'll need my arm to be all the way above my head).

the lump in the carpet, for which cleaning and flattening out, the drum kit was moved

My discomfort was significantly decreased yesterday. I suppose it could be a coincidence and at exactly 3 weeks one starts feeling better, but I suspect I felt better because I was able to move my arm. I didn't lift it above 90 degrees (uh...because I think that's what I'm supposed to do 🤷), but it felt very good to relax and move it a bit more. It is still sore and I still have a lot of numbness, but the pain isn't sharp like it had been and I can go for hours without thinking about it. It is still awkward to sleep in certain positions because of the arm, but I'm nearing the point where I can sit without taking into account the position of that arm.

Choosing a Location

As of yesterday, we hadn't yet decided where to do the radiation, in large part because we hadn't met with the radiation folks in Yakima. When we met with the SCCA folks in December, we asked each of the doctors "Why should we do this part in Seattle?" At the time, we chose that phrasing, but looking back I might ask "Should we do this in Seattle or Yakima?" IDK if it would make a difference in their responses.

my folders and books about breast cancer, filled with questions, directions, contact information, and get well/thinking you cards (yes, I have enough of these cards to warrant a whole folder--it's the bulging green one)

Anyway, the surgeon gave us compelling reasons to choose her and SCCA/UW: she only does breast cancer surgeries and her pathologists look at cancer all the time, so everyone has more cancer-specific and breast-specific experience, as opposed to the also highly qualified Yakima surgeon who does other surgeries, too. It helps that we were talking about a limited number of one-day visits to Seattle for the surgery and related visits. Though, as it turns out, we were in Seattle for surgery related stuff more like 7 times (MRI, Savi Scout (fail), another MRI & consult, surgery, pre-op/post-op, surgery, post-op), including 5 overnight visits (because of weather on the pass or early appointment times). 

when I am not allowed to be in the studio, I just add cat pictures

The oncologist answered our question by saying, essentially, "don't." She said oncology in Yakima would be just the same, with less driving and they might be able to get us started sooner. So we did chemo at Northstar in Yakima and they were great and also I can't imagine trying to drive to Seattle so many times during winter and during a time when I had nausea a lot. As it turns out, for chemo in Yakima, I went to Northstar Lodge on 28 or 29 separate times, though to be fair, if we were doing in in Seattle, we might have consolidated some of those trips into one long day, as I "only" had 16 infusions. My blood work was done 16 times, but sometimes it was taken the day before. I had 8 or 9 meetings with my doctor, and 4 growth factor shots (which always happened the day after chemo).

I mean...is that reasonable?

For anyone who wants the data, that means that I've had some kind of cancer related meeting, appointment, or procedure in Yakima or Seattle on 55 or 56 separate days over the past 7.5 months. Some of those days I had multiple meetings or procedures, and I am not counting phone calls or days I had to go in just to pick up precriptions or drop off paperwork. I expect to have at least 35 more visits by the time radiation is finished, for a grand total of 90+ appointments in 10 months (no stars; do not recommend).

Anyway, we asked the Seattle radiation oncologist the same question back in December. She described to us how SCCA had both techniques and technology to help keep my heart safe during radiation. The cancer is on my left and so is my heart. If the radiation is too deep, it could damage my heart (and lungs, and ribs, but the heart is the biggest concern). The breath hold technique sounds like it is the standard technique for keeping hearts safe. Basically, if I take a big breath and hold it, my lungs push my breast away from my heart, thus keep the radiation away from the heart. 

cute, but exceedingly naughty (she's been learning to knock water cups over on desks or tables at night)

The SCCA radiation oncologist described a fancy 3D camera system with an iPad the patient can watch while doing this breath hold technique. She said this system automatically stops the radiation if I am not holding my breath correctly ("if you sneeze" is what she actually said). Additionally, this 3D imaging system allows SCCA folks to forgo the tattoos that would otherwise be used for lining up the patient during radiation. She explained that Yakima probably didn't have this technology, which had us leaving that consult in December sure that we'd do radiation in Seattle.

Sean replaced this window, but for a while it was "confused cat entertainment TV" as she walked back and forth unable to figure out how the fenced in area works

However, even at that first consult, the other doctor (or doctors, I can't remember and my extensive notes are hard to read) said "wait until you talk to the radiation folks in Yakima."  So, over the course of the next 5+ months, we have waited (did I mention I'm impatient?). In that time, I've asked several local women about radiation in Yakima and those with recent experience at Northstar have been overwhelmingly positive about radiation there. Based on research and talking to folks, I had already determined that Yakima would probably use the breath hold technique, too (they do). The travel has also been wearing me down, now that we've driven there so many times, so I went into today's consult wanting to find out that I can safetly "stay home" and do radiation locally.

my extensive notes, tabbed for SCCA radiation and Northstar radiation

Since December, we'd been discussing a plan to stay in Seattle during the weeks that I'm doing radiation. There's an SCCA house where we could stay in a suite for discounted rates, and we could make it into a kind of vacation by taking advantage of being in Seattle (South Lake Union area) to see sights and do things we don't normally get to do. We'd discussed having all three of us stay during the first few weeks and having me stay alone during during the weeks Alison had school or band camp. We even discussed having my parents or my brother and his family come visit in Seattle at some point during the treatment.

the calendar where I attempted (multiple times, with multiple revisions) to determine when I might be having radiation (the answer: we still don't know)

However, as we got Alison's summer band schedule and as the various extensions (like two surgeries) extended out our timeline, this plan became less and less appealing. Also, the drudging slog of treatment after treatment after treatment, and the extended discomfort of feeling sick or hurting, have also worn away at any excitement I might have felt about treating it like a "vacation." My anxiety about how painful or tiring radiation might be also has put up a good defence against Seattle. If I gotta be in pain, I wanna hurt at home with my clay studio and my cats and my friends.

Radiation in Yakima

After today's visit with my radiation oncologist at Northstar, we've decided to do the radiation in Yakima. (whew!) They do do the breath hold technique, as expected. They don't have the fancy 3D camera and iPad setup, but my doctor was able to assure us that they will be able to monitor my heart and keep my heart safe. If I'm not breathing right (or if I sneeze), the "linear accelerator" will be interrupted, stopping the radiation. Basically, my take away is that they'll keep me as safe as SCCA would, but I won't see all of the process. Worst case scenario, I'm thinking, is that they tell me to breathe better and I get confused or frustrated because I can't see what they mean. But, in exchange, I get to go home afterwards, instead of staying in Seattle all week. 

the middle part of Northstar Lodge from our seats waiting for the radiation consult, for the full effect, imagine birdsong (on recording, I think)

And, at the end of the process, when I'm presumably going to be feeling the worst, I get to be home feeling crappy with my family (well, with Sean, since Alison is going to be spending 11 hours at band camp every day!) instead of alone in Seattle trying to figure out how to get Dairy Queen and a cat delivered.

the beautiful building (or space between the parts of the building), might be a pretty strong incentive to go to Northstar, but it's only visible from the waiting areas)

The radiation oncologist at Northstar Lodge was very good about answering our questions, both about radiation and about post-surgery stuff.  She drew us several diagrams illustrating the location of the cancer and the how the radiation would be designed. It felt like a little more of a post-op consult, combined with a pre-radiation consult. She also talked a little more in-depth about the risk of recurrence and factors that impact that.

Sean in one of the rustic chairs; he thinks they've generally sacrificed comfort for "style"

I hadn't entirely realized or understood that they took out two types of carcinoma in the lumpectomy. I kind of knew this, but it didn't really click until the explanation today. In December, 3 days after the start of chemo, an MRI in Seattle showed a tumor of 4.5cm, larger than it had been at the November biopsy. In May, when they took it out, that tumor, an "Infiltrative Ductal Carcinoma" had shrunk to 1.2cm. But they also took out a 2.3cm "Ductal Carcinoma in Situ". 

Measurements (to scale in the original) of the original tumor (top) and what they took out in May.

Both the IDC and the DCIS start in the ducts of the breast, meaning the channels by which milk gets out. The "in situ" means that the cancer has stayed inside the duct. It might move along the length of the duct or swell the duct walls, but it hasn't broken out yet. The "infiltrative" means that the cancer has burst out of its original duct area. The IDC is more agressive and more worrisome, and it sounds like maybe sometimes DCIS is treated almost like pre-cancer, but the fact that I had both IDC and DCIS (the latter of which is not necessarily visible via MRI), means that I've got a bit more risk of recurrence, and need for radiation.

my doctor's illustration of the ducts (tree branch thingies) and the milk producing lobules (round shapes) in the breast. the dark 

The other increased recurrence risk factor for me, she said, is that that I am "young." I asked if the increased risk was because I have more expected life years in which cancer can catch me (like, if I live to 84, I've got the length of my current lifetime again in which cancer can show up). She didn't exactly answer this, but indicated that extended time could be a factor. 

(detail) the black colored in section is the DCIS; the arrow is either the infiltrating or some isolated microscopic tumor cells

A factor that decreases my risk is my cancer's response to chemotherapy, both in the tumor and the lymph nodes. Even though I still had "isolated tumor cells" in the two lymph nodes, there were more than two lymph nodes invovled originally (incidentally, one of the reasons for needing to do radiation in the underarm area is that they weren't able to remove the level 3 nodes using surgery, because they are deeper in my body). I asked if the chemo-response just means that if I got cancer again they could treat it with chemo, but she explained that the response to chemo reduces my chances of a recurrence at all. 

my doctor's illustration of a "slice" of "my" body from the perspective of a CT scan. the B at the bottom is for backbone

Before radiation, they will need to do a CT scan in order to make a plan for radiation. I really enjoyed the detail and specificity she went into in explaining the radiation plan, and this one came with another illustration. I am delighted by this illustration because it is such a different way of looking at the body from what most of us are used to. She drew a slice (like if you "cut the cucumber so you can see the seeds" she explained), of the body, but she drew it from below (notice R and L on the drawing above). I am always delighted when someone represents something from a perspective that doesn't seem natural or automatic to me. I naturally would assume the right side of the paper is the right side of me, looking down, but she's looking up, putting the cancer on the "wrong" side from where I'd expect to see it.

The plan she makes for radiation will depend on my anatomy, because, presumably, people's parts are in slightly different locations or proportions to one another. I also didn't initially realize that she'll be doing radiation on 3 or 4 different parts of my body. I knew the plan was to irradiate my breast and the armpit area where the lymph nodes were removed, but today she indicated they'd also irradiate a section of lymph nodes around my clavical (I can't remember if she said intra or inter or super or where exactly, but the illustration helps). If she's able to do so safely, she'll also zap some radiation on the lymph nodes near the middle of my chest.

the top rectangle is the clavical adjacent area of lymph nodes, the shapes below are the lung (and where it will move to when I take a deep breath)

The angles of the radiation are also important, because she wants to come at the area where there's potentially bits of cancer still hanging out (breast and lymph nodes) from an angle that reaches the potential cancer bits but doesn't damage the heart, lungs, ribs, or throat/thyroid. She sounded confident that she'd be able to spare my heart (it sounded like her confidence was a combination of her experience, their tech, the breath hold technique, my age and ability to hold my breath correctly, and what she saw of my anatomy in my earlier CT scan). She might not be able to fully avoid hitting the edge of my lungs, but she'll try for that. 

detail of the "slice" diagram, showing angles of radiation

After determining to do the radiation in Yakima, my biggest concern was how much this is going to hurt. I have variously heard radiation described as "like a bad sunburn" and "not like a bad sunburn" (the latter in response to my question "Is radiation like a bad sunburn?"). So that's clear.

This doctor answered in a frustratingly imprecise but probably reasonable way, saying that it varies. Apparently my pale skin "may" make my experience a bit worse, but because I am "slender" it may be a less severe reaction. The logic on the latter is that a slender person has less skin to be damaged by radiation, but I'm not sure this holds up, when you consider the irradiated area of skin is still in proportion to the whole body, and that the amount of skin shouldn't really impact the intensity of the pain or damage to that one part of skin. But I will admit, from having suffered both, that a bad sunburn on a small part of the body is preferrable to a bad sunburn covering a large area of the body. I've just never directly compared how it feels to have a similar proportioned burn on a large or a small body.

 

a graphic of possible side effects from radiation--I like Northstar's visuals

Essentially, I'll have to wait and see how bad the pain is and how bad the fatigue is. With any luck, though, the fatigue will be lessened by not having to travel to Seattle for the treatments. While mustering my motivation to drive to Northstar for the 27th treatment, I'll remind myself that at least I'm not driving to Seattle for it.

The other thing I was hoping to nail down soon was when radiation would start. Unfortunately for that goal, when is up to the physical therapy people (the ones who only do occupational therapy) at the lymphedema (prevention) clinic. I have my first meeting with them on July 5, after which point they will determine whether I can move on to radiation right away or if I need to do more PT/OT with them first. I think the main thing is whether I can lift my arm above my head. I haven't tried lifting higher yet, because I think I'm not supposed to.

because I'll always have lymphedema risk, I went looking for a medical ID bracelet to wear on that arm and found "Road ID" which sells these things you can attach to the band of a fitbit watch.

If they give me the ok on June 5, I may be able to get my planning CT from Northstar that same week, and start radiation the next week, in which case I'll be done by the end of August. On the other hand, OT may want me to do some more stuff before they give me the go-ahead to lift my arm and do radiation. I have five more appointments scheduled with OT through August, but the note on the schedule they sent says we can cancel if I don't need them.

When I spoke with folks in December, I was told that radiation would take 5-6 weeks (M-F). Today the estimate is 6.5 weeks. The first 5.5 weeks, or 28 treatments, are for the breast and lymph nodes. After that, the tumor bed gets a full week "boost." The treatment will be fairly short (just 3 minutes of radiation for a 30 minute appointment), but daily. 

I wasn't sure the watch one would work, so I bought a bracelet one too.

I find it interesting that every treatment so far has taken the maximum amount of time. The chemo was 8 weeks of AC plus 8-12 weeks of Taxol, which turned into 12 weeks of Taxol. There was going to be one surgery, maybe 2 (there were 2), and now 5-6 weeks is 6.5 weeks. Luckilly, I guess, recovery has been quicker (maybe). After chemo, I was told I needed 2.5-6 weeks before surgery; I had 2.5 (and then another 2 between the two surgeries). In Seattle, in December, I was told recovery after surgery would be 6-8 weeks. Last week, I was told 6 weeks (pending OT approval). Today, radiation was ready to do my preparation CT today, if I was able to lift my arm.