Next steps

I look forward to a couple of months from now when I have something other than breast cancer on my mind. Or at least something else that’s top of mind, even if this remains an ongoing thread in my life.

Yesterday I met with the radiology oncologist (RO) for the consult. During that appointment, we talked through what’s happened so far and I let her know that I was probably not going to take the endocrine meds my medical oncologist recommended. I thought that decision might influence what she recommended for my radiation treatment, and it did. Originally she’d been leaning toward 16 treatments and now I’ll have 20.

Then she did what she called mapping. I was on a flat (hard!) table with a CT scanner but not a typical one (couldn’t tell you what the difference is just know that it’s different because the RO told me that). She and the nurse put stickers on various places on my chest, then circled my left breast with a thin, flexible wire. Finally the nurse drew on me with a Sharpie to line everything up—the room has lasers sort of like laser levels you’d use at home instead of a plumb line. That way, my body is lined up exactly as it needs to be every time.

Because the cancer is in my left breast, my heart will be exposed to radiation which can be a Very Bad Thing. So I’ll need to do what’s called deep inspiration breath hold. Basically, when you take a deep breath using your ribs and not going just from the belly, that moves your heart just a little bit out of the way of the radiation. You can read about cancer-associated heart disease here.

Of course, I’m a snowflake so this may not be something that helps me. Years ago, I was diagnosed with what sounded like a heart murmur, but an echocardiogram showed that my heart is close to the wall of my chest. When my heart beats sometimes there’s an echo that sounds a lot like a murmur. So my heart may be too close to the wall of my chest to be helped by holding my breath. I'll find out more next week.

Anyway, I had a couple of CT scans, breathing normally. Then I had a scan where I had to do that deep inspiration breathing, and I held my breath for the whole scan. Once that was done, the nurse came in and gave me three teeny tiny (hardly worthy of the name) tattoos. Basically, they are each one dot—left side even with my breast and under my arm, on my breast bone, and right side even with my breast and under my arm. I will have to remember to mention them to my dermatologist when I have my next post-melanoma scan.

I did think of one additional question for my RO after we left. I have a small pleural effusion on the left lung, which of course is the side that will get the radiation. So I’ve called and left a message to mention that and see how/if that impacts treatment. More to come . . .

Now the RO is building the model for my treatment, and I should get my appointments (I hope) by tomorrow since we’re aiming to start on Monday.

More encouraging news

I’m back from my two follow up appointments today with my oncologist and my surgeon. I took the whole day off work, mostly because the appointments were not back to back, nor were they at the same location.

My friend made this for me.

I have pretty much all good news—because of the kind of breast cancer I have, I already knew that chemo wasn’t on the table.  It’s just not a treatment that works on hormone receptor positive breast cancers (or HR+ if you want to abbreviate). Well, OK, it could have been if the cancer had metastasized, but it didn’t.

Instead, the normal treatment is surgery (either lumpectomy or mastectomy plus sentinel node surgery) --> radiation --> estrogen blocking drugs for five to 10 years.

Broadly speaking, there are two categories of drugs for the estrogen blocking. Here’s information about both kinds from the breastcancer.org site:

Selective estrogen-receptor response modulators (SERMs): The best-known SERM is tamoxifen. Tamoxifen acts like estrogen and attaches to the receptors on the breast cancer cells, taking the place of real estrogen. As a result, the cells don’t receive the signal to grow. Tamoxifen can be used to treat both pre- and postmenopausal women. Tamoxifen can reduce the risk of breast cancer coming back by 40% to 50%, and it’s the one my medical oncologist recommended.

(This part is from me) Keep in mind that as a stand-alone statistic, that reduction rate sounds fantastic, but you need to know what your personal recurrence rate might be. By all accounts, I’m in a low risk category, possibly less than 2% chance of recurrence over the next 10 years. Since this drug has some nasty side effects, and also has a risk of blood clots and liver disease, I don’t think it’s worth taking. I can live with a 2% chance.

Aromatase inhibitors reduce the amount of estrogen your body produces. Aromatase inhibitors are most commonly used to treat postmenopausal women but can be used to treat premenopausal women who are also taking medicine to shut down their ovaries. This medicine has fewer side effects but often causes bone loss and bone breakage.

Since I already have osteopenia (the step before osteoporosis) and I’ve already had a bone break, this isn’t the drug my medical oncologist recommended for me, and I agree.

To better assess my risk of recurrence, he’s ordered a MammaPrint test run on my tumor (boy that sounds so weird to say: my tumor. Actually I still have a hard time wrapping my head around me having another kind of cancer.). If I fall in the ultra-low risk category, then I absolutely won’t take the estrogen blocker. The juice just wouldn’t be worth the squeeze. If my risk is higher, then we’ll have to talk further about the options. 

My surgeon was also pleased with how I’m healing. I’m typically a fast healer and even though there's swelling he said it's really minimal compared to most. He said the recovery period is six to eight weeks, but I’m OK to work out as long as I don’t go swinging heavy kettle bells or anything.

Next week I see the radiology oncologist to get that process going. She’ll do some sort of mapping using a CT scan to get the locations established, and I’ll get a couple of tiny tattoos that mark where the machine needs to line up. I don’t know how long my radiation treatment will last but generally it’s three to seven weeks, five days a week. There’re some less than pleasant side effects but nothing horrible (although my surgeon did warn me today that my breast will swell from radiation—good to know!), and once that’s done, everything can start healing up.

Before I forget--how Monday went

I wasn’t sure about the order of operations—I just knew I had to be there at 7 at the surgical admissions and that I would have the wire inserted before surgery. Other than that, I didn’t know. Turns out, I got checked in and then sent to the breast center for the wire procedure. Both that and the IV insertion were my biggest fears; again, for me it’s all about the needles, not the post-op pain. While post-op pain hurts, it’s constant and I wasn’t awake when it was inflicted if that makes sense.

A friend gave me these &
I wore them on Monday

Anyway, we got to the breast center and I have to say everyone was beyond kind and gentle. When the technician learned how fearful I was of the wire insertion, she promised she would hold my hand—and she did. In fact, she had her hand on my leg as a reassurance even before the radiologist got started and that was just so comforting. At one point, I asked what her ink was on the inside of her upper arm. She has part of Proverbs 31 there and we talked about that. Then I asked about the music and that started a hilarious conversation about the evolution of music at the breast center. They’ve tried spa-like music (too many birds and frogs), country music (only the technicians were happy), some mellow music that ended up having quiet F-bombs in the lyrics so got nixed right away, and now they have some weird compilation of classical music (only it’s not classical, not really).

The wire itself was much longer than either Kent or I thought it would be. I guessed it would maybe stick out an inch but nope. It was more like half a foot, like a giant cat whisker, well past my body. The technician said they have three lengths of wire but were out of the smallest size. Then I had to have two mammograms to make sure the wire was in the right spot. That was weird and very uncomfortable, even though my breast was numb. Once those were finished, the technician sort of coiled up the wire and gently taped some gauze over it and down we went to surgery.

Once again, everyone was great, talked with me about anything and everything. The anesthesiologist made sure I had a patch for nausea (doesn’t everyone throw up with general anesthesia?) and told me because I have a lot of problems with nausea, he’d do something called tiva—total IV anesthesia, no gas. He said that method would help a lot and it did. The IV was as expected but then it was done and I could relax.

Kent got brought back, then my priest showed up and I was so glad to see her. She’s one of three at Saint Andrew’s and it meant so much to me that she came. She prayed for me and I must be turning into the biggest mush melon because I cried and cried. Kent cried too, it was just such a comforting thing for me and for him.

Then off I went. I remember the anesthesiologist injecting a sedative into my IV as they wheeled me away and I felt nicely mellow but could still help them get me on the OR table. Then she told me she was starting the tiva and that was it, lights out.

I did take a while to get alert enough to go home. I think I was in recovery by noon but didn’t leave for home until 2. But everyone was again so kind, checking on my nausea (which wasn’t bad), my pain (which was not pleasant), and getting me prepped to leave.

Once we got home, I slept for about three hours—long enough that Kent told me later he was getting worried. But I was fine, just very tired. I did end up throwing up but only once, which is a big improvement over most surgeries I’ve had.

So that’s the color commentary.

It aint pretty

If you’re my son, you might want to skip this blog post. It’s a little personal about things most kids don’t want to know about their mothers.

I took the bandages off this morning before my shower. To be honest, I wasn’t sure where my surgeon had made the two incisions he discussed with me. I don’t know what I expected but what I saw was not it at all.

First, I have two incisions in my armpit. I was not expecting two, and in fact everything I’ve read on the reputable sites all say one incision. These run parallel to each other and look to be a couple of inches long each. They are toward the front and now I know why my pecs hurt.

Second, and what’s really thrown me for a loop, the incision on my breast is on my nipple (it’s a semi-circle at the edge of my nipple). I was really not expecting that at all. I thought it would be more where the core needle biopsy was done, and where the wire was inserted Monday before surgery. Both of those were done near the back of the breast on the armpit side. But that lumpectomy incision is in the nipple area right on the edge.

My breast is clearly swollen on the armpit side and at least right now, it looks like I have a divot slightly on the top and to the left if you were looking down at your own chest.

So today I’m sad. Yes, I know this surgery was the right thing to do but I’m sad about what I saw and how my breast looks.

Edited to add that I was wrong about two incisions in my armpit. The surgeon used a dark purple pen to make a line that runs parallel to the actual incision. But the incision itself is also purply-red (got some bruising going on) so it looked like two incisions. 

I have scars

When I was 19 and in the Army, I had my appendix removed. I ended up with a 7-inch vertical incision about two inches to the right of my belly button and starting a couple of inches above that. Turned out, my appendix was not in the usual spot. Instead it was attached length-wise on the small intestine and my intestine got compromised.

But I didn’t know that, lying there in that hospital ward. All I knew was that I was in a lot of pain. In 1979, you had to have a shot for any pain relief, and I am beyond scared of needles. So I lay there with an NG tube up my nose (which was also really unpleasant, and made me puke—not what you want to do with a long abdominal incision like mine) and hurt.

At Jordan and Amanda's wedding
You can't really see the scar here

If I remember correctly, the medic changed the bandages on probably the second full day I was in the hospital. That was the first time I saw the incision, how long and ugly it was. I cried, really cried, over how ugly it looked. I was crushed that I was going to have such a big, ugly scar.

And it was an ugly scar. It looked like a thick red crooked worm on my stomach for the longest time. I think it finally faded in my late 20s, but it’s still thick and crooked 30 years later (wow, I just realized it was 30 years ago pretty much right now).

I went on to have another six major abdominal surgeries; most were on the same site as my c-section with the exception of the five holes punched in for the laparoscopic surgery I had in 2006. With that one, I joked that I now had the Big Dipper on my belly.

So my belly isn’t pretty. My muscles are strong, I’ve worked the snot out of my abs mostly because otherwise I thought my guts might end up on the floor. But my belly isn’t so attractive.

Then in 2017, I had that melanoma removed on my back. I was self-conscious about that scar too, especially at my older son’s wedding in March 2018. My new daughter-in-law has also had melanoma, and she showed me her scars and told me the dress she actually found for me was gorgeous and I should wear it. She was right, and I did wear it.

This past Saturday night, I wore a different dress to the Juvenile Diabetes Dream Gala, and that same scar is visible in the dress. I don’t care though. It’s a mark of survival.

I hope that I can have that attitude with however my body looks after today.

Juvenile Diabetes Dream Gala 2019

Last year I won tickets to attend the Dream Gala from work—my employer supports JDF along with a slew of other organizations. I didn’t expect to win tickets again this year, but I did. Having an event to go to just a couple of days before surgery was a nice treat. Although I’ll be honest, both of us kept forgetting about the gala. We’re a little preoccupied these days.

Here are a couple of photos from last night. As with last year, this was a well-organized delightful event.

I'm not so good at selfies

I love my dress

The puppy sold for $13,500!