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Old 06-12-2020, 02:01 PM   #301
sterlingice
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Man, not the best of weeks

Prayers for all of you

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Old 06-12-2020, 02:44 PM   #302
Thomkal
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Man a big F*&K cancer this week. Sorry to all who are dealing with this right now, you are all in my thoughts.
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Old 06-13-2020, 01:00 PM   #303
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Thanks to all for your thoughts and prayers, they are appreciated. Looks like the surgery will be this next Friday.

Y'know it's funny. I'm not around here much these days but when I got the diagnosis I felt the need to let y'all know. A testament to the enduring power of internet community I guess

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Originally Posted by chesapeake View Post
Very sorry to hear this, Path. Will you be going to Fred Hutch?

I'll be working with Seattle Cancer Care Alliance in conjunction with Kaiser.

Also I went back through this thread and wanted to give my very best wishes to all of you dealing with this. FOFC is a special place.
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Old 06-18-2020, 09:38 PM   #304
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Just to update, we now have clearance for my wife's surgery. Following 2 cat scans and another MRI, they said next early next Tues (6/23) morning is a go.

The tests gave no indication of any spread anywhere at all, surgeon even voluntarily noted that its possible no radiation or further treatment will be needed after surgery.

I don't want to get too excited -- long way to go before we get any sort of all-clear -- but for this point, it's pretty much the best report we could get.

So next week things shift from wait, to ... movement? Hopefully progress.

Literally have to drop her at the surgical entrance door and leave, returning only when called to pick her up (expected to be 2-4 days hospital stay... so this surgery ain't no joke apparently)
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Old 06-18-2020, 10:00 PM   #305
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Hope it all goes super smooth!
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Old 06-18-2020, 10:25 PM   #306
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Good luck to her.
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Old 06-18-2020, 10:27 PM   #307
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Good luck! Thoughts and prayers.
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Old 06-18-2020, 10:33 PM   #308
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Good news there Jon. Hope all goes well with the surgery.
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Old 06-18-2020, 11:31 PM   #309
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Hoping for a good outcome.
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Old 06-18-2020, 11:50 PM   #310
JonInMiddleGA
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Dunno whether this comment belongs in this thread OR in the mental health thread, but I'm just gonna stick it here I think.

Tonight, while discussing the specifics about times, places, etc etc, I said something about thinking it was probably best if we just got a nearby hotel room so that me & Will could kinda rotate staying with her, grab some sleep and showers, etc.

My wife looked at me like I'd just landed from Mars when she pointed out that we weren't even allowed to go inside the hospital, much less her room.
That hadn't even crossed my mind, I think I was literally superimposing all the experiences from 20 years ago onto the current situation.

Hours later, I'm STILL mentally/emotionally processing that. Partially the 2020 reality of it, but also partially the fact that I was so zoned out about it that I was basically oblivious. "Oblivious" is certainly less than optimal for me to be right now, and I'm really kinda ... unnerved by realizing I was.

I'm sure I'll process it, but damned if it ain't taking me a bit to get through the processing stage. If that makes any sense.
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Old 06-22-2020, 12:07 PM   #311
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A bit of good news on my brother. The cancer had not spread anywhere else.

Today will be his first set of chemo treatments, 48-hour pump, followed by a second drug injection on Wednesday. Here's hoping he gets through this first 3 days fine.
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Old 06-22-2020, 01:22 PM   #312
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So my father had cancer a few years ago; it was removed.

Enter today, they think it has come back and hit a lymph node but they don't have all the details.

They're thinking instead of radiation they're going to treat via hormones.

I'm thinking that's good news, but it's still early. My daughter is very upset as is my mother but he feels good and has always been practical. He told my daughter he'd rather have it than any of his kids or grandkids.

That's my father.
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Old 06-22-2020, 01:31 PM   #313
JonInMiddleGA
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Good to hear good news on one case, hate to hear bad news on the other :/

About 30 hours away from wife surgery here.
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Old 06-22-2020, 01:40 PM   #314
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Good to hear that ABC, and hope he deals well with the chemo

That's horrible news to hear Qwik, but pretty brave to have that mindset about it. Not sure I would be feeling that way.

Still thinking about your family Jon.
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Old 06-22-2020, 01:59 PM   #315
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Quote:
Originally Posted by JonInMiddleGA View Post
Dunno whether this comment belongs in this thread OR in the mental health thread, but I'm just gonna stick it here I think.

Tonight, while discussing the specifics about times, places, etc etc, I said something about thinking it was probably best if we just got a nearby hotel room so that me & Will could kinda rotate staying with her, grab some sleep and showers, etc.

My wife looked at me like I'd just landed from Mars when she pointed out that we weren't even allowed to go inside the hospital, much less her room.
That hadn't even crossed my mind, I think I was literally superimposing all the experiences from 20 years ago onto the current situation.

Hours later, I'm STILL mentally/emotionally processing that. Partially the 2020 reality of it, but also partially the fact that I was so zoned out about it that I was basically oblivious. "Oblivious" is certainly less than optimal for me to be right now, and I'm really kinda ... unnerved by realizing I was.

I'm sure I'll process it, but damned if it ain't taking me a bit to get through the processing stage. If that makes any sense.

My dad has been in the same boat shuttling my mom around to all her procedures. We find out on Friday if she has to have the 3-5 days in the hospital option, or the 12-14 days in the hospital option. Didn't dawn on him that we wouldn't be able to visit while she's in the hospital.
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Old 06-22-2020, 02:02 PM   #316
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Still thinking about your family Jon.

I appreciate it, I really do.
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Old 06-23-2020, 12:20 PM   #317
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Surgery complete, patient in recovery now. Wife went through the procedure fine, everything according to plan, nothing unexpected. Likely 2 night hospital stay, then we wait 7-10 days for the lab reports to come back and dictate whatever followup treatment/care is indicated.

Basically the best news today could give us: no surprises
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Old 06-23-2020, 01:01 PM   #318
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Originally Posted by JonInMiddleGA View Post
Surgery complete, patient in recovery now. Wife went through the procedure fine, everything according to plan, nothing unexpected. Likely 2 night hospital stay, then we wait 7-10 days for the lab reports to come back and dictate whatever followup treatment/care is indicated.

Basically the best news today could give us: no surprises

That's good to hear Jon. Keeping you and your family in my thoughts and prayers.
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Old 06-23-2020, 01:15 PM   #319
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Good to hear, Jon. A lot of FOFC is pulling for your family and the other families that are affected by cancer.
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Old 06-23-2020, 01:21 PM   #320
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excellent news. praying for a good report.
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Old 06-23-2020, 01:33 PM   #321
Thomkal
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Glad to hear it Jon
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Old 06-23-2020, 02:52 PM   #322
Warhammer
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Good news Jon. Sorry to hear the news from the others, will keep those in our prayers.
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Old 06-23-2020, 05:48 PM   #323
rjolley
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Glad to hear that, Jon.
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Old 06-28-2020, 11:44 AM   #324
Thomkal
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Quote:
Originally Posted by JonInMiddleGA View Post
Surgery complete, patient in recovery now. Wife went through the procedure fine, everything according to plan, nothing unexpected. Likely 2 night hospital stay, then we wait 7-10 days for the lab reports to come back and dictate whatever followup treatment/care is indicated.

Basically the best news today could give us: no surprises

Hey Jon,

So is your wife home yet? Feeling "okay?" still
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Old 06-28-2020, 11:53 AM   #325
JonInMiddleGA
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Hey Jon, So is your wife home yet? Feeling "okay?" still

Oops, sorry, given my mental state* it's hard to remember what I have (or haven't) posted somewhere.

We picked her up Thursday morning, home by about noon Thursday. Largely medicated since then, happily though we're staying ahead of the pain management thus far.

The combined prescription load -- seven in all, for a variety of functions, provided some levity for everyone here, as Will returned with it Thursday evening ... in a full-size brown paper grocery bag.

Quote:
"I felt like I went grocery shopping in 1982 ... I had no idea the drive thru window at CVS would swing all the way out and both sides opened up, who knew? ... if I get pulled over with this much dope in the car, I'm going straight to jail, no passing go, no collecting $200"

I suspect we're all slowly transitioning from "relieved to be past the surgery" to "rising nerves about the lab report and follow up plan" but that's just part of the roller coaster that has to be ridden.



*Prior to this morning, I'd only managed to sleep more than 3h in a single session once in the previous 9 days. I'm a bit ... fuzzy.
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Old 06-28-2020, 01:10 PM   #326
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Quote:
Originally Posted by JonInMiddleGA View Post
Oops, sorry, given my mental state* it's hard to remember what I have (or haven't) posted somewhere.

We picked her up Thursday morning, home by about noon Thursday. Largely medicated since then, happily though we're staying ahead of the pain management thus far.

The combined prescription load -- seven in all, for a variety of functions, provided some levity for everyone here, as Will returned with it Thursday evening ... in a full-size brown paper grocery bag.



I suspect we're all slowly transitioning from "relieved to be past the surgery" to "rising nerves about the lab report and follow up plan" but that's just part of the roller coaster that has to be ridden.



*Prior to this morning, I'd only managed to sleep more than 3h in a single session once in the previous 9 days. I'm a bit ... fuzzy.

Thanks for the update Jon. I certainly can understand the lack of sleep over this, just make sure to take care of yourself too. My mother has about the same number or more prescriptions as your wife right now, and it does help ease the tension a bit to joke about how many, size of the bottle, how much they cost compared to mine,etc.

So no worries about forgetting updates you are certainly concentrating on the right thing right now.
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Old 07-07-2020, 12:56 PM   #327
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I feel like I should update y'all, even when there's really not been an update.

Today is day 14 of the "7-10 days for lab results to come back". We've heard exactly nothing from that. Nada. Zip. Zero. Crickets.

Her surgeon has now scheduled a follow-up visit on 7/23 and at this point I don't think we expect to be told anything until then. Unclear whether that's because the doctor has been yet again on vacation (I believe she'll have been out of the office 6 weeks out of 12 by the time we see her again, best we can count)

We're largely operating day-to-day trying to focus on the idea that "no news should probably be good news" but honestly there's no way to know if that's right OR if we're whistling past the proverbial graveyard about it.

Wife is having her surgical staples removed this afternoon, the post-surgical recovery part has gone reasonably smoothly, though she's having her usual post-heavy-drug issues (where she's basically kinda hungover as she comes off the strong stuff).

So, basically, we wait.
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Old 07-07-2020, 01:01 PM   #328
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No doubt the holiday screwed up everything. That makes it harder than it needs to be too.
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Old 07-07-2020, 01:23 PM   #329
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Man, just waiting has to be so frustrating. Sorry, Jon.
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Old 07-07-2020, 02:33 PM   #330
Thomkal
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Sucks that you haven't heard anything yet Jon. I do hope its no news is good news too
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Old 07-07-2020, 04:06 PM   #331
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Sorry to hear that Jon, hope you have some good news soon.
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Old 07-08-2020, 07:17 AM   #332
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I cam empathize, the time between scan and results is brutal...I'm so sorry you guys are dealing with delays.
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Old 07-08-2020, 12:28 PM   #333
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Yesterday's staple removal went fine enough, the nurse involved (who is like, whatever the phrase, her "regular nurse" i.e. the one that works directly for the surgeon) was surprised that we hadn't been told anything and suggested that we email the office to ask for information. She indicated pretty strongly that she knew the results but "not allowed to discuss those at all". I get that, I'm not faulting the nurse in the least she's just bound by the rules of her job, but I continue to be horribly disappointed in the administrative/ communication side of things from Emory. They've been an absolute shit show throughout this with anything other than the most immediate medical procedural part. Glad they get that right obviously, but damn, they've been Athens fast-food caliber on all the tangental stuff.

And since there's no plan for her to see anyone for clarification before 7/23, I'm not sure whether I want to get an incomplete picture of things via email, not at all sure that wouldn't be more (mental/emotional) harm than good honestly.
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Old 07-08-2020, 03:59 PM   #334
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I knew the FOFC had magic powers, didn't know they extended so far as getting doctors to phone with lab results. Good job FOFC.

So here's what we learned today.

Surgically, the news was quite good. Stage 1, literally zero indication of spread beyond the initial point of occurrence. Surgeon believes they got it all.

Longer term, not as great as we might have hoped.

She had a very rare form of cancer for the location -- a sarcoma, that is hyper-aggressive, with a fairly high rate of recurrence. Initial recommendation is a full course of chemo, with a goal of wiping out any stray cancer cell that _might_ be in her bloodstream.

Her initial reaction is to _not_ do the chemo, for this reason: the max benefit of it would be to eliminate any stray cell that _might_ or might NOT exist today. The chemo would do absolutely nothing to prevent the recurrence of the same cells in the future. surgeon "Chemo does not guarantee no return. Not having chemo does not guarantee it would return"

We will discuss options in more detail on 7/23

The working option atm is to plan to have regular scans every 3 months for basically the rest of her life.

So, surgery outcome very positive. Couldn't have caught it any sooner or better. Prognosis is more along the lines of a sword over the head for the rest of our lives
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Old 07-08-2020, 04:49 PM   #335
sterlingice
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That, um, oof.

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Old 07-10-2020, 09:39 AM   #336
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My update - not so good. Chemo's just hammering my mom, good days, bad days .... she had a rough one last night. Fell on the way to the bathroom, got herself a black eye for her troubles. Can't keep anything down. Sounds like my dad my have to take her back into the hospital just to get anything into her system.
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Old 07-10-2020, 10:03 AM   #337
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That's a terrible experience. Just awful CW. I hope today is a good day and she can find some comfort.
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Old 07-10-2020, 10:20 AM   #338
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Cancer sucks.
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Old 07-10-2020, 11:33 AM   #339
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So yeah, update, they're taking her in for fluids in a couple hours. She's pretty beat up and depressed.
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Old 07-10-2020, 11:34 AM   #340
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Sorry CW. This has to be pretty horrible for your family. Sounds like a good idea to bring her back to the hospital.
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Old 07-10-2020, 12:37 PM   #341
sterlingice
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Sorry, man

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Old 07-22-2020, 07:14 PM   #342
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Re-update, back in the hospital on fluids. I had to basically browbeat her into going this time.
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Old 07-23-2020, 08:07 AM   #343
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Ugh, that sucks. Hoping for better times ahead.
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Old 07-23-2020, 12:51 PM   #344
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Update from last night - they admitted her, gave her two bags of fluids. Severely dehydrated and anemic. Gave her some blood as well, and on antibiotics for some sort of infection (not Covid, they confirmed that).

The chemo is just wrecking her. Shit's just nasty. I'm glad they admitted her though, she needs to get stabilized.
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Old 07-24-2020, 06:09 PM   #345
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Diagnosis - severe sepsis. Had we not got her to the hospital when we did, she likely would have died. Somehow no doctor noticed this even after the 800,000 blood tests and exams she's had in the last few weeks.
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Old 07-24-2020, 06:14 PM   #346
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That is a major letdown in the medical system. Man, of all the things that you'd figure you could count on, a correct diagnosis and treatment is right at the very top.
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Old 07-24-2020, 07:16 PM   #347
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Diagnosis - severe sepsis. Had we not got her to the hospital when we did, she likely would have died. Somehow no doctor noticed this even after the 800,000 blood tests and exams she's had in the last few weeks.

Awful, prayers for you all of course.

I will say that this is the second time in a week I've heard someone face a serious situation due to sepsis. (the other person had no cancer,chemo,etc issues afaik)

I know it's bad shit any time but to hear about it twice in a week definitely feels like an outlier. Dunno wth is going on (though I'd sure put my money on staff reductions, etc) but nothing feels right with any health related stuff of any sort
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Old 07-24-2020, 07:51 PM   #348
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As always, appreciate all the prayers/happy thoughts/good vibes/etc.
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Old 07-27-2020, 08:46 PM   #349
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Sooooo, we had the follow-up / post-surgical visit with my wife's doctor today. More good (? tough word to use honestly) news than bad, or at least several pieces of definitely-NOT-absolute-worst case news.

It got pretty technical and science-y at times, so I'll give you my best explanation of it. Her tumor was NOT the absolute worst type of sarcoma.

It's a less-common and somewhat better prognosis that they shorthand as "mixed" or "mixed cell" (I think she used the latter term). Basically out of the dozens or more specific sarcoma types, her tumor was made up of cells of several different types. So it's not a "Name-Hyphen-Name Sarcoma",it's just "mixed". Which beats having some of the Named types for sure.

A lot of the other stuff was several layers past my understanding, though my wife spoke the lingo fluently enough that she even managed to stump the doctor with one question (something about mitochondria), admitting that she didn't see the answer in any of the reports.

Here's the upshot of all this: ain't no type sarcoma "good" to have, but it's not the purely worst one at least. The rate of recurrence is still around 50-50 or more, the mortality rate varies -- depending on where it returns & how quick its caught -- in the 40% - 60% within three to five years. But there's also patients who live long enough - 10 to 20 years - to die from some other unrelated cause.

How rare is this shit? It's the only case like hers to go through Emory so far this year. The head surgeon we're dealing with said she's never seen more than 2 cases a year in her whole career. And THAT is where this gets tricky.

Because it's so rare, there's very little data and nothing approaching a definitive study. The "to chemo or not chemo" question revolves entirely around "we recommend it only because it's an aggressive cancer and chemo works on other aggressive cancers so our best guess is ...". but we're told flat out that she has no data indicating whether it works on this type of sarcoma much less any way to compare odds with vs without. She could start chemo & have another tumor appear before finishing a round, she could never touch the stuff and never have another tumor period. Or vice versa .... and nobody would know what difference the chemo actually made in any scenario.

Doc is open to as much input from other docs/hospitals as we can gather, will sit with us and sort it out. (Sloane-Kettering is apparently the closest thing to any kind of experts on sarcomas and they are willing to review her records for a small fee and an online request).

"If you decide you want to try chemo,I'll help you make that happen. If you decide you want to only do surveillance (i.e. frequent cat scans), I'll help you make that happen. It's up to you and I'll help you get what you say done"

Doctor brought a tear to my eye with that little speech honestly, and I told the doctor "you said help ... and that's big ...because that's what we need".

So, 2-3 weeks before any more decisions will be made about anything. In the meantime, she's feeling relatively okay physically, recovering from the surgery and a bit of post-surgical infection, and was at least in an improved enough state of mind on the way home to mention that she might take advantage of a local store having a BOGO lipstick offer "since I might actually live long enough to use it after all"

For now, gang, that'll do.
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Old 07-27-2020, 09:15 PM   #350
sterlingice
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I, um, that line: "since I might actually live long enough to use it after all". Cancer sucks.

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