Monday, December 26, 2016

On Cancer Doulas

When last we left our heroine, she had just had an invasive tumour removed, but found out there could be traces of cancer left behind. She was left to choose between surgery, radiation, tamoxifen, or nothing. Let's see what she does next...

I had never heard of Healthcare Navigators before, and it seems they don't exist as much in Canada as they do in the more expensive and privatized healthcare to the south (except for Indigenous needs), but they're becoming more of a thing here. In Ontario, some hospitals have them, and we're apparently leading the way to integrating a navigator even before an official diagnosis, but I didn't encounter any and don't know how to find one. Believe me, I've looked. If you're pregnant, you can get a doula to help you through all the issues that come up when you're at your most vulnerable and being bombarded with contradictory information. Cancer is very similar. It's just way too confusing to navigate alone. I'd like one that comes around to appointments with me, not one that stays in the hospital. Without a partner, I've had to rely on my barely-adult children to come to my appointments and try to make sense of everything. They have exams to study for and essays to write. This isn't a burden I wanted them to take on, and there's so much I would have liked to have known.

It would have been great if someone mentioned shaving my pits ahead of time. It's not something I ever do, and they put surgical tape right up in your pits, then send you home with arm exercises. I couldn't raise my arms without ripping out the hairs, and I had to get my poor children in there with tiny scissors freeing me from my own physical constraints. It also would have been great to have someone suggest I DON'T do both surgeries at once. Yes, it's fewer times under anesthetic, but it's a longer time, which can be worse. And the after care for one (plenty of walking after the oophorectomy) was contraindicated for the other (bed rest after the mastectomy). Now I know, but it's useless information to me at this point.

It would also have been amazing to have someone knowledgable there to answer my questions. I ended up back in emerge when one breast swelled to about half a boob size. After four hours, the hospital assured me that I don't have an infection, and that's all they know to look for. They sent me home to google for information. I can only guess that it was a sudden build-up of fluids, but we're still not sure. It went away before I could get in to see the surgeon. I have weird pains on one side now, but I have no interest in getting it checked out. What's the point?

I've been going to my follow-ups alone, and it's even more awash with conflicting advice now that they know I actually had cancer. No doctor seems to have a clue what other doctors do, and nobody has their head around the entire process. Here's a bit of a mild horror show - more frustration than fright. My main surgeon was confident that the plastic surgeon could just move my belly fat up to make new breasts, but the plastic surgeon was quite certain I didn't have nearly enough body fat for that. Implants were the only option, and I bowed out of that and let the surgeon know I would just rock a flat chest. He told me he wouldn't stop trying to convince me because "You're too young not to get them redone." Hmmm.  Does this mean I can't be an attractive woman with a flat chest? Does it mean I'm too young to spend my time and energy pursuing my own interests instead of pursuing a mate? It struck me as a slightly insulting comment, but I ignored it. He's likely about my age, but he was raised in a different time. I try to be forgiving.

But then after surgery, when I saw the topographical roadmap left on my chest, he told me it always looks horrible. It just does. Then I spoke to a genetics counsellor who told me he likely left extra skin behind for the plastic surgeon to use in reconstruction. I asked her to set me up with a therapist who specializes in this kind of thing, because I still haven't been able to look at myself in the mirror topless. It's really gross.

But, What. The. Fuck. If that's the case, then this is when I needed an advocate to verbally bitch slap the bugger. After that nightmare after surgery, I have no intention of going back under to get things cleaned up. I can accept that the surgery is just going to look like crap (despite the many beautiful pics of women who are living with a flat post-op chest online), but I have issues with the possibility that he deliberately ignored my decisions and created a mess unnecessarily. But I was too sore and tired and scared to complain.

I saw my gynecologist who said my ovaries were healthy. I asked her about the options available for my lymph node issue, and she was surprised tamoxifen was one of them (to reduce estrogen for my estrogen-loving micro-tumour). She said usually people come to her to get their ovaries out so they can stop taking tamoxifen . But when I saw the genetics surgeon, she seemed to think that letrozole was a better option for post-menopausal women. There are tons of side effects, and the most concerning to her was loss of bone density. She said I could take it for a while to see if it helps, but how do you tell if it's helping? She also suggested a physical every 4 months for two years, followed by one every six months after that. But with whom? My family doctor's not going to know what to look for. Other than that, lots of fresh fruits and vegetables and easy on the caffeine and alcohol.

Then my surgeon sent me to a radiologist for a consult. The radiologist was confused why I would have been sent there. He told me radiation is only used to shrink a tumour. If they don't know if there's a tumour, then they don't randomly radiate the area. But if there's cancer in the lymph nodes, which might have sucked up some cells from the invasive tumour, then they'll likely do six months of chemo followed by radiation because it'll be travelling everywhere. If I wait, and just check for lumps, and they find it later, then the chemo and radiation treatments will be longer and more intensive. The surgeon told me I'll have to do yearly mammograms despite not having breasts. The radiologist told me they don't do mammograms without breast tissue present, and I'd have to have yearly ultrasounds. Either way, radiation isn't an option at all right now, and I used a half-sick day unnecessarily. When all the doctors say each other is wrong, how can you possibly know what's right?

Before I left, I asked him about the math of it all: Previously I had a 90% chance of getting breast cancer, whereas most women have a 10% chance. But now I have a 1% chance of having it in my lymph nodes, so isn't that something to ignore?? I mean, they don't suggest surgery to women with a 10% chance, so why would I get surgery? He said it doesn't work like that. I have a 1% chance of a recurrence of cancer, which, apparently, is very different. Something like that.

So now I have even less confidence in the general surgeon because he sent me to a specialist who didn't think I should be there. Then the radiologist, whom I JUST MET told me he ended up presenting my case to rounds since neither surgeon who first discussed it, nor my gynecologist showed up. Wow. Anyway...  Luckily the radiologists did show up or nobody would have been able to tell me what happened there, and I wasn't really supposed to even meet with him. The four surgeons who looked at the case all said I should get the lymph nodes removed, BUT, the radiologist told me that I should keep in mind they were "speaking politically." Looking at my file, without me in front of them, they saw a risk involved in doing nothing, so they leaned to the side of doing something despite the risk of lymphedema (which is a 1% to 15% risk depending who you ask). Apparently the worst case for that is wearing a compression bandage on my arm forever, but I don't really believe anything anymore. I'm sure I can find an even worse case scenario. The radiologist and genetics surgeon and regular surgeon all leaned towards doing nothing because they saw me all skinny and healthy in front of them. I'm a low risk for a recurrence. But it's four against three.

Unfortunately, the radiologist couldn't tell me what the lymph node surgery would be like, except that it should be far less invasive and take a fraction of the time. So I have to go back to the original surgeon to find out for sure. We'll see if I have enough balls to complain a little about it all. Probably not. If it's an easy surgery, and I can time it to line up with March Break (so I don't have to deal with the very different nightmare of planning weeks of lessons and then fielding daily e-mails from the supply teacher), then I might go for it. I'm too curious to just leave it be without knowing for sure.

What a gong show!


Unknown said...

Don't you have some kind of cancer doula with PosAction? Is that even the correct term? I know there's some kind of nurse who walks you through everything. It's part of your benefits.

Marie Snyder said...

Ack! We do!! PosAction is just regular counselling, but CarePath is more focused on health care system management. I totally forgot about it when I needed it most! But it's curious none of the doctors seemed to know about. They only talk about a local support group that meets to do yoga and crafts and stuff during the work day. Only one could refer me to any kind of counselling - a social worker at the hospital. Everyone seems very insulated in their own little worlds in this profession. You'd think DW would have reminded me when we had to work through all the sick day issues caused by the board inputting them incorrectly.

I called today to see if I can sort out my options more clearly. It's not the same level of care a doula gives - physically going to appointments and being able to look at anything weird to assess if it's emerge-worthy or not, and speaking up when doctors make questionable choices. It's all done over the phone. They get copies of the reports though. I'm not sure if they'll react like the panel who never met me - err on the conservative side. (Or like Telehealth, which always says to go to emerge.) But it's another opinion about risk factors and maybe finding a different general surgeon.

Unknown said...

I'd be curious how CarePath works out for you. We have it with OTIP too.
Let me know.