ALND and LYMPHA surgeries next week

cw: descriptions and pictures of insides (lymph nodes)

The tumor board met today and decided that I will have a second surgery next week. The surgeon already let me know, earlier in the week, that a second surgery was likely, so yesterday I had both post-op and pre-op meetings in Seattle. The folks at the UW Medical Center were nice enough to fit me in at short notice yesterday morning. And we already had tentatively booked the OR time/space, so while I was meeting with the plastic surgeon's team at UW, I was getting pre-op calls from scheduling folks at UW.

my surgeon was complementary about this port-a-cath necklace by Alison

The SCCA folks were nice enough to move my afternoon appointment to a morning appointment after the UW folks got me in at 9am. Driving from Yakima that morning was about as much fun as you might expect and we nearly made it back in time to see Alison shave (another!) 15 seconds off her 1600 meter race time. (But, we didn't because, y'know, she was too fast for us!)

In her 1600, she's shaved almost a full minute off her time from the start of the season to yesterday!

The lumpectomy got clear margins on the tumor, so they're leaving my breast alone this time. The port-a-cath came out last week and my upper chest feels oddly flat without it there, but all three wounds from last week are healing just fine. Apparently the amount of numbness and pain I'm feeling (which are both totally manageable) are not unusual. In fact, yesterday was about as bad as I've felt in that arm since the day after the surgery, but I also lifted things I shouldn't have a few times, found myself leaning on the arm in the car, and they made me stop taking one of my pain killers as a pre-op procedure (Tylenol is allowed but not Ibuprofend and I'd been alternating them).

Javelin in middle school looks like lawn darts

Last week two of the three nodes from my sentinal node biopsy had "isolated tumor cells" in them, so next Wed, June 1, I will have an ALND (axial lymph node dissection) that will remove some more lymph nodes from the same armpit area. At the same time, I'll have a LYMPHA procedure which is done by a plastic surgeon and, for extra fun, isn't covered by insurance.

the header of the contract they make us sign before surgery agreeing to pay (out of pocket) ahead of time

Breast Cancer surgeons generally, and the ones at SCCA specficially, apparently disagree about whether an ALND is necessary in my case (meaning isolated tumor cells rather than micro or macrometastases, and after chemo rather than before). Apparently the study that will answer that question should be out in 3-4 years. As I can't wait that long, we had to make a decision without those results.

Over the weekend, my SCCA surgeon had spoken with several other surgeons and the majority thought the ALND was a good idea. Today at "tumor board" she got feedback from the radiation oncologist(s). The question was whether radiation (which I will have regardless) would take care of the rest of the tumor cells. Apparently the answer was either "no" or "not sure."

I can't even lift this little cutie

Yesterday my SCCA surgeon met with me and drew me a picture (literally) of the level 1, 2, and 3 nodes in that area. As she said, because all three levels (1= closer to the breast and 3 = under the muscle and harder to remove with surgery) had some cancer before chemo, and because 2 of 3 nodes removed last week had cancer cells, this caused some concern. If I understand correctly, the concern is about recurrence of cancer in those nodes, but not in the breast. The good news is that those isolated tumor cells in the nodes don't raise concerns for the surgeon that I might have tumor cells floating around the rest of my body. (This is the kind of thing I start to worry about once my focus starts to move away from the logistics of surgery and recovery.)

the location of level 1, 2, and 3 nodes (left to right)

In the ALND, my surgeon will open up the partly healed incision from the sentinel node biopsy and will cut away more lymph nodes. From what I read, this will be 10-40 nodes, but I forgot to ask the surgeon how many. She'll inject some dye into my arm (last time it was injected into my breast) that will identify relevant nodes and also will turn my skin and pee toilet bowl cleaner blue for a few days (assuming it's the same dye as last time). I'm not clear on how they determine which nodes to take, but I'm content to leave that to the experts.

The other pre-op yesterday was with a plastic surgeon. I feel like saying I'm getting plastic surgery should mean that I'll come out looking more beautiful, but in this case beauty is really on the inside, because the plastic surgeon will be rerouting some lymph drainage into my veins. It should cut my risk of lymphedema (swelling in the arms caused by lymph fluid drainage problems) about in half.

Because lymph nodes are clustered together like grapes (actually, I think they look like some kind of kelp or aquatic plant you find on the beach, but I don't know the name of that stuff), when the surgeon cuts them out, there will be relatively few lymph channels. So if she takes out clusters totalling 20-30 nodes, there might only be 3-7 lymph lines or tubes remaining in that area. There will also be some cut veins, because the lymph system runs alongside the circulatory system of blood vessels and the lymph fluid drains into the veins.

lymph nodes in clusters

After the ALND surgery, the plastic surgeon will come in and find those cut lymph lines (she compared them to spaghetti noodles). She'll gather up these noodles that are only as thick as a few hairs, and put a stitch in them. Then she'll find a cut vein and stitch the noodles into the opening of that vein and secure them.

This LYMPHA procedure basically just connects the spaghetti to the vein. Without the LYMPHA procedure, the spaghetti noodles would drain the lymph fluid into the arm instead of into the veins. The job of the lymph system is to collect any fluid (blood or the immune system's response to an injury like a bruise or infection) from the area and drain it into the lymph nodes and then into the veins. Lymphedema is what happens when those drains back up. Without the plastic surgery procedure, the drains are more likely to back up. The procedure seems pretty straight forward, really and seems like something you should obviously do if you are cutting up the lymph system.

lymph nodes and the breast illustration in my breast cancer book

The major disadvantage of the ALND procedure is the increased risk of lymphedema. The major disadvantage of the LYMPHA procedure, on the other hand, is that insurance doesn't cover it. (Insert complaint about the US Healthcare system and health insurance here.) The LYMPHA procedure may not prevent lymphedema, but as the plastic surgeon's resident (I think he was a resident, anyway, her helper doctor guy) explained, at least we tried everything we could to prevent it.

See, here again is where I get mad at statistics. The ALND without LYMPHA leaves me with a 20-30% risk of lymphedema. The ALND with LYMPHA cuts that to about 5-10%. But I will either get lymphedema or I won't. My personal experience is yes or no, got it or not, 0% or 100%. And just like how I "beat the odds" by getting breast cancer in the first place, despite my low risk, I will experience the procedures after the fact as helping or not based on what happens to me individually, rather than based on a statistical analysis of all the folks who have the procedure.

Statistical rant aside, I'll have both surgeries next week. My surgery this time is at UW Montlake (the main campus clinic), and as I am scheduled first that morning, it shouldn't be delayed like last week's surgery. This should be the last surgery. After this I will have a little bit harder recovery, they tell me, though I think that knowing some of what to expect may be helpful.

The pre-op/ post-op directions is a longer handout than last time, but has a lot of similar suggestions

I will be asked to keep my shoulder angled below 45 degrees for two weeks (or risk pulling the the spaghetti out of the vein), then work on increasing my range of motion during weeks 3-6 in order to prepare for radiation. They tell me that physical therapy will start after 4 weeks and radiation after 6.

lifting and pulling restrictions

My folks had been vising since shortly before my first surgery last week. They left today. It was, of course, really great having them here and it was great that they were able to be here with Alison when Sean and I were doing the first surgery. Unfortuantely they couldn't be here for the second surgery, but I actually think recovery will be a bit "easier" for me because they were here. After the first surgery, I was told to walk 10-15 minutes 4x a day and do a series of minor exercises with the arm. They went on walks with me (and helped make sure I remembered).

how you know that post-op will be more complicated: there's a video with instructions

I was supposed to not exert myself for the week or weeks after surgery and I'm only moderately good at following those directions. My mom actually helped me think about what was exertion and what wasn't. I though glazing some pieces couldn't be that much exertion, but after I spend an hour or two in the studio, I was feeling a lot worse. My mom helped me realize that what seems like not that big of a deal is more strain on the arm that I might realize.

greenware cups I haven't loaded yet (because of the first surgery and Mom's advice)

So, with my parent's voices in my ears, my plan is to take it easier than I would otherwise think I need to and also make sure I am strict about my walks and arm exercises. I can (probably) stay within the limits for 2-4 weeks if I know when physical therapy is starting (4 weeks after the second surgery) and when I can transition out of these limits. I just have to look at it like a job to heal well and assign myself that job as my focus.