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Archive for the tag “mastectomy”

Bad news, confusion, and a giant WTF


I had nearly given up on getting my pathology report yesterday. I’d started second-guessing my memory about what Dr. Superman had told me. (“He said Monday or Tuesday…maybe he meant NEXT week…”) I’d called my surgeon’s office in the morning to make my post-op follow-up appointment that morning and asked the receptionist about my report. She said it wasn’t in yet and she’d call them and find out what was going on. Then I heard nothing all day. So, I was pleasantly surprised when Supe called me around 5:30. He took a minute to apologize for the delay. He said something about how it was taking longer to process or whatever blah blah blah. Get to the good part, I thought. Go ahead and tell me “Congratulations, you are cancer-free.” bad-news-bears1

Only that’s not what he said. One of the lymph nodes he removed had cancer in it. Still. After SIX ROUNDS of shitty, miserable, fucktatious fuckwad chemo. The other node had fibrous shit in it which he says indicates it probably did have cancer, but the chemo got it.

Then the other thing he said was that in the junk he took out of my boob there was DCIS which is Ductal Carcinoma In Situ, also known as Stage 0 cancer. This stuff I guess can’t kill you unless it escapes your duct and becomes invasive (Turdy was Invasive Ductal Carcinoma). From what I understand it’s a sleeper cell. There is debate in the medical world over whether it is being overtreated currently. Right now protocol usually is to cut it out and maybe radiate it. Chemo doesn’t really work because it targets fast-growing cells. Sooooo this is another cancer that had never shown up before. Not on mammogram, not on ultrasound, nor MRI nor PET scan. It’s an October surprise.

So what now? What do I do now. Here’s were Dr. Superman gets infuriating. (Insert a bunch of words about how he’s nice and a skilled surgeon and I respect him, etc etc). Supe thinks in terms of stats. Overall stats. So when I was wondering whether to have a mastectomy or a lumpectomy, he didn’t offer an opinion, just told me that after ten years there was no difference in survival rates. So it didn’t matter which I chose. And he told me the same thing yesterday. That the chance of recurrence of the cancer statistically, over the long term will be the same whether I just go ahead with the radiation I was going to have anyway or if I have more surgery. The difference will be how I feel about it.

“Well, if I just have the radiation as planned, how will we know it worked?”

“You’ll know in ten years when the cancer hasn’t come back.”

Okaaaaayyyyy. That…doesn’t really work for me.

So here’s what I know from this conversation:

  1. The chemo didn’t work completely.
  2. I am not “cancer-free”
  3. I can’t participate in the radiation research study I signed up for.

Here’s what I don’t know:

  1. What the fuck?!
  2. If there’s any more cancery shit in the lymph nodes that are still in my body.
  3. How much boob Supe took out.
  4. If there was anything left of Turdy in my boob.
  5. If the DCIS was in the scoop he took out, is there any more in my boob that they didn’t find before?
  6. What “more surgery” means. Bigger scoop? Mastectomy?
  7. Why no one will give me a fucking straight answer.

Reading back about HER2 + cancer I noticed something that I hadn’t seen the first time.

“According to The New England Journal of Medicine (NEJM), up to 70 percent of patients with HER2-positive breast cancer respond to treatment. However, total remission for the condition occurs in around 7 to 8 percent of patients.”

Maybe I don’t understand it correctly, but it appears that only 7 or 8 percent of HER2+ breast cancer goes into remission. Well, that can’t be true, can it? I mean, was there only ever a small chance that I would, at some point, be cancer-free? Do I not properly understand the term “remission?”

Why did I think I’d get to hear those “cancer free” words? Why was I so convinced I’d be popping champagne corks instead of shaking my head and wondering what the fuck has gone so wrong?

Dr Supe told me he’s on call this weekend and if I have questions to call his service and tell them it’s an emergency. Which is very kind. But I…don’t know that I can ever get a straight-up honest answer out of him. Unless it’s something that I can’t use. When he says it’s statistically identical for me to have more surgery or just the radiation…what does that mean for me as an individual? That I’m fucked either way? Or I’m okay either way? And just what ARE the statistics? He didn’t mention any numbers…and I could spend all day and all of next week looking for that stat and I won’t be able to find it.

I don’t know where I stand. I have an appointment with Buffy the Cancer Slayer on Monday morning and hopefully she will be straight with me. Also, I need to get my hands on that pathology report and see for myself just what is what.

I’m not a child. I’m not fragile or addle-brained. I don’t need to be protected. I’m not asking for nuclear launch codes; I just want to know the truth about what the fuck is in my body, how dangerous it is, and how to make myself as safe as possible.

Is that asking so much?

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What To Do About the Boobs

shehulk1First of all, this round of chemo can kiss my ass. Just in the last couple of days have I been able to eat meals, and it’s time to do chemo again. As each round gets progressively shittier, I will not be surprised if the awful nausea/gross taste lasts the full three weeks between rounds. Pissed and disappointed, but not surprised.

I also have two new side effects:

1. My thumbnails are doing this.

FullSizeRender (5) FullSizeRender (4)Some chemo patients lose their nails entirely. I’m hoping that doesn’t happen, but I also thought I might be spared this side effect.

2. Neuropathy. At least I think that’s what this burning itchy feeling is on my hands. It’s not constant, thankfully, but it sometimes wakes me up at night. What freaks me out about this side effect is that it can be permanent.

So that’s the sucky stuff. Here’s the good news: In my last post I fretted about what to do with my boobs. This past week I met with my breast surgeon, Dr. Superman (formerly known as Dr. Boobcutter) and I have a lot more clarity now. He assured me that “cutting everything off” will not statistically improve my survival rate, but if it will give me peace of mind, he will do it. He also, regarding my “one boob that’s a wonder of science and one that’s had three kids” concern, told me that if I had a mastectomy on the right breast, when they did reconstruction they’d do a little perk-up on the left breast and get them as symmetrical as possible. So that made me feel better.

What the plan is, though, is to start with a lumpectomy. On examining the bad boob, Supe was unable to feel any sign of Turdy the tumor! He said he’s “thrilled” with the chemo. So all he’ll have to remove is the little metal clip that Dr. Moviestar put in when he did the original biopsy. He’ll take that plus some surrounding tissue. It will most likely be a small enough amount that while Right Boob will have a scar, it won’t be the ginormous shark bite disfigurement I was imagining.

Turdy melting

The pathologist will examine this tissue and look for any microscopic cancer cells that may have escaped. What we’re looking for are “clean margins” aka no bad cells in the tissue around where Turdy used to live. If the margins aren’t clear, then we may go back and do the mastectomy after all.

Here’s the stinky part: After Dr. Supe consulted with Dr. Cap, they decided that because I have those four bad lymph nodes under my arm, I will also need to have a sentinel node dissection. They are going to–brace yourself–inject a radioactive tracer into my areola. Yes, boys, that’s Nipple City.

sentinelHopefully, I will already be knocked out for the surgery when it’s Tracer Time? Anyway, the tracer will flow to the lymph nodes and Dr. Supe will run a wand with a Geiger counter over my armpit and see which nodes react to the tracer. Those are the nodes that he’ll remove because they are most likely to have cancer cells. It’s a better option than taking all of them out and checking each for cancer. I can’t help but wonder if a radioactive boob will trigger a metamorphosis from part-time bitch into full-time She-Hulk.

I told Dr. Supe that I wanted to do everything possible to prevent a recurrence. And he told me that with HER2+ cancer, the most critical time is the first five years. With other flavors of breast cancer I guess it can come back within 15 years, but with HER2+, as he put it, “If we go five years without a recurrence, you come back to my office and we’ll drink champagne.”

Deal.

So here’s the tentative schedule:

  • Round 4 chemo July 9
  • Round 5 July 30
  • FINAL round of chemo Aug 20!!!
  • Lumpectomy and sentinel node dissection the week of Sept 7
  • Start radiation (5x week for 5-7 weeks is standard) first week of Oct

And then? I should be done.

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