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TOTALLY ALIVE (a health update) - House of Forgotten Thoughts

Aug. 23rd, 2015

04:22 pm - TOTALLY ALIVE (a health update)

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So, I've been not-posting long enough that people have started quietly asking me for updates instead of waiting for announcements, which I completely appreciate.

Updates!

Surgery went great, they took out the entire tumor with good margins and 10(!) sentinel lymph nodes. (Out of 50-ish on that side, usually they have to take 1-5.)* Good margins means no stray bits. Nodes also came back clean.

Tumor was completely mucinous, which means the cancer cells were surrounded by a snot blob, also fantastic news as those are much less likely to travel.

Healing up has been going well. I ended up taking three weeks completely off instead of the expected two (SO TIRED), but my energy is back up now and I'm no longer worried about dragging exhaustedly through the Netherlands with random temperature fluctuations.

Gender and body changes and stuff

I currently have no sensation on the skin or nipple on my left breast. They didn't touch the nerve, so they said it's just swelling and localized shock. It should come back in about 2 months after surgery.

Loss of sensation, even asymmetrically, isn't nearly as upsetting as I was afraid of, and I'm impressed by how much my "sensation" of that skin is actually mapped by my fingertips. It's a huge change in my data points about how I would feel about doing more radical chest surgery. For which I still have a giant blank check. I think people concerned about that as a factor should ask about getting a temporary nerve block (I'm sure there's a way to numb that nerve) and fooling around with it to see how they actually respond to the reality instead of the hypothetical.

I have two 1" long incision scars, one on my breast and the other in my armpit. I'm planning a Fury Road style smiley tattoo where Didi was. :)

Long term plan

6 weeks of daily radiation therapy (they shoot x-rays through Didi's former kennel and tattoo LASER SIGHTS onto my body there is so much science i am too excited for punctuation), which will be a royal pain scheduling-wise but shouldn't have many side effects.

I will get a radiation burn which will look like a bright pink sunburn for a few months! It will look a lot like a sunburn because all squares are rectangles.

10 years of Tamoxifen, a hormone blocker for estrogen and progesterone which has selective effects. Instead of just shutting down my ovaries, I can anticipate all the hot flashes, emotional lability, and skin change stuff from menopause, but not the bone density impact. I am very excited about keeping bone density. I am already living with two mood disorders, and don't expect a third to massively impact the way I live my life. Plus I will have an iron-clad doctor's note for this one.

My overall genetics have no markers for increased risk of later cancer. The tumor genetics have a very slight increased risk. I had the option of doing chemo, but the doctor refused to give a recommendation one way or the other. I will not be doing chemo.

About playing the odds

I could get a 2-3% ish reduction in long term distant recurrence (sneaky cancer shows up in another body part later) by doing 3 months of chemo. Once you figure in permanent side effect chances (0.5% chance of serious leukemia! No solid data on permanent neuropathy or brain fog!), this is about a 2% solid change for the good.

In big picture statistical terms, if there are 100 universes diverging from this point, and 100 of me do chemo, we will collectively spend 25 years doing chemo.

Or two of us could get a preventable later cancer and have to do some fighting again, and maybe one of those would even die and lose 25 years of life. But those two would get to do *next* decade's chemo. Dr. McCoy would still call it barbaric, but ten years is a long time in cancer tech. There is an embarrassment of research, and the curve is very, very fast.

* Another post about sentinel nodes as explained by Gotham City sewer architecture later. Remind me at least 24 hours from now.

Comments:

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From:randomdreams
Date:August 23rd, 2015 11:54 pm (UTC)
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This is great news.
Ten YEARS of tamoxifen. Wowie.
Cancer treatment is improving quickly. I'm cheering for you.
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From:gement
Date:August 23rd, 2015 11:56 pm (UTC)
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Standard course of Tamoxifen is 5 years. I get a 6-8% recurrence risk reduction if I do another 5, and that trade off feels worthwhile to me. And hey, I can change my mind five years from now, and science keeps moving.

* ETA: That 6-8% eats most of the other chemo reductions, bringing it down to that 2% I'm not worried about. That's why I'm doing 10 years.

Edited at 2015-08-24 12:00 am (UTC)
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From:randomdreams
Date:August 24th, 2015 12:46 am (UTC)
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Totally makes sense, esp. since its side-effects don't appear to be awful.
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From:mimerki
Date:August 24th, 2015 02:55 pm (UTC)
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Yay! I have been super busy the last several weeks, but thinking of you often. I am predictably glad to hear you are doing pretty well.
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From:maribou
Date:August 24th, 2015 03:57 pm (UTC)
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thank you for this thorough and extremely interesting (LASER SIGHTS!) update. I was still in the quietly wondering stage, so I am particularly grateful :).
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From:gipsieee
Date:August 27th, 2015 03:18 am (UTC)
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Thinking of you. Also, it's been 24 hours.. Gotham sewers?
Glad to hear the path report was largely good news.
Your nerve block suggestion is fascinating... wonder what it would take to get it to the ears of folks who would need to hear it for use in their clinical practices...
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From:plantae
Date:August 28th, 2015 05:05 pm (UTC)
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Thanks for updating. Good to hear.
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