Sending good vibes to you!
BIRADS 2, How Do You Do!
Had my MRI this morning - and got the results within 3 hours. BIRADS is a rating system; 0 meaning “exam was not completed”, 1 meaning “all’s good”, 2 meaning “spotted the occasional artifact such as scarring or calcification but nothing cancerous”. On up to 6 which is not a number you want to have. My mammograms have all been BIRADS 1, I think (I looked at one recent one, anyway). So, it appears that at least so far, I’ve beaten those odds.
So - the plan to continue “watchful waiting” stands, for now.
I saw the gyn onc later this morning and we had a long discussion. I have to get clearance from a cardiologist before ANYTHING can be scheduled, which is understandable if annoying “We’re sorry, you aren’t healthy enough to be kept healthy”. But assuming that, the plan is to schedule ovary/tube (and possibly uterus) removal as soon as feasible, but in the immediate term I’ll get an ultrasound and a CA125 test.
Thanks for sharing the good news! Onward.
I’ll take that as good news, all things considered!
Bumpdate:
I had the ultrasound and CA-125 in November. Nothing worrisome found - in fact, hell, they literally could not even SEE my ovaries (given my age, those tend to atrophy and be hard to see… unless they are doing Bad Things).
I finally got cardiac clearance for a bunch of stuff. I really wanted to get my colonoscopy out of the way before doing any other surgery; that was Monday. The idea of dealing with a colonoscopy, after recent abdominal surgery, was a bit daunting… plus if it had turned up anything unfortunate, all plans would change. Fortunately, all went well.
I’ve got a pre-op consult with the gyn onc next week, also a return visit with the breast surgeon to discuss monitoring and surgical options for the future.
I learned about a reconstruction technique called a DIEP Flap surgery… which basically includes a tummy tuck because they have to take the tissue from there. I know this makes me shallow, but that got me more interested in a preventive mastectomy, LOL.
The ovaries / tubes will vacate the premises in less than 3 weeks. The uterus… may literally come down to a coin toss as there’s no compelling reason either way (higher risk of endo cancer… but we’re talking 4% chance vs 2%).
My husband will be there for my surgery, as will a friend to keep him from going completely nuts. I’ve threatened to make them wear “Pussy Posse” T-shirts.
And… it’s all scheduled. 2 weeks from today (in fact, nearly to the minute), I get the inner girly bits evicted. That was finalized this morning. An hour later they called and asked if I’d like to do it NEXT Friday instead due to a cancellation; I declined.
I had scheduled a consult with a plastic surgeon re preventive mastectomy, before I knew the final surgery date… I think I’ll postpone that, as 3 days post-op is likely not the best time for that sort of thing.
Good luck!
Groups like 23andme or ancestry identify about 700,000 of the 3 billion base pairs in human DNA.
For about $300-500, you can have your entire genome sequenced, all 3 billion base pairs. however it takes a few months to get the results.
I’m not sure whats the best option or if that helps, but if you want a copy of your entire genome, you can get that now.
Best of luck with the surgery, Mama_Zappa, and hope you have an easy recovery.
Best of luck!
Thanks, all!
Right now I’m in the frantic “get everything organized” stage.
Pre-op approval from insurance: check… but they don’t state “robotic” and I need to make sure that’s okay.
Short term disability claim started: check… but MetLife’s right and left hands are in complete disagreement: I keep getting reminders that they NEED MEDICAL INFO NOW" to approve, but humans on the phone tell me “we don’t get that until AFTER the procedure”. WTF???
Lab work done: check, though LabCorp only reported on partial results, and I was afraid they’d lost one of the critical tests the gyn onc wanted.
Assorted household supplies: check.
Long checklist of stuff to do before / after: check. on Google Docs so my husband can see it too.
Humor to keep me from losing it at the time (and hopefully amuse the staff): ongoing. Got a plush uterus stuffie from I Heart Guts, debating how to spring that on them. Also got a plush cucumber (long story where I made the gyn onc crack up during the pre-op visit).
My husband is being pretty good at not panicking. Or at least he’s hiding it well. I think it’s quite unfair that I’ll get tranks at the hospital and he won’t… A friend may come along to keep him company. Sadly, neither of them was excited at the idea of wearing a “Pussy Posse” t-shirt for the occasion. I could probably put on Sad Eyes and they’d do it, but it’s not worth it.
All done!
My surgery was originally 2:10 Friday. Got told 2 days before that it was 2:50.
We arrived at 12:50 as told, and did all the intake stuff, and were told that the OR was busy until at least 3:30. But they gave my husband (and our Emotional Support Human, who came along because they wouldn’t give my husband any tranquilizers) a food coupon and a parking voucher, so that’s all good, right?
Part of the intake was a full-body sponge bath (done by myself, not nurse) using what was essentially Clorox wipes (not bleach, but something else). I was told “there are 8, and here is how you use them”. Package was adult-proof of course. I did most of it but my husband had to do my back.
Cracked up a pair of nurses by hiding the plush uterus under the blanket early on, and then saying I needed to show them this growth on my abdomen before we could proceed. IV got started with no muss or fuss, which was a surprise. They did another, in the OR, after I was unconscious, and botched that badly judging by the TWO bandages on my hand, and the IV in the other one. Of course, I wasn’t dehydrated for the first one, and I was badly dehydrated by the time they took me back - I really need to be better about advocating for myself in the moment, as I could have insisted they give me more fluids during the long wait.
Later cracked up the doctor as she popped in to see me mid-afternoon - didn’t have time to play hide-the-uterus but I did ask her if I got a discount for doing part of the work for her, and I pulled out a plush cucumber also bought for lolz.
After a few more emergencies - of which I was of course thankful to NOT be one - I was finally taken back close to 7 PM.
I remember a) moving myself to the table, and b) glancing over to the side and seeing this big object with a cover on it, and asking if that was the robot console and being told that it was.
Then it was 9:00. I blinked and it was 9:15. I blinked again and it was 9:30.
Two attempts to use the toilet: first failed, second produced a dribble which apparently was sufficient. Husband and ESH were brought back. I glugged a LOT of water and ginger ale, barely managed another dribble in the toilet, and we were back at the car just before midnight. The belly wasn’t too painful - like bad cramps. Instead of “pull up to the ER entrance and meet us” the discharge nurse just took us down the regular elevator into the garage, which was a big help, as finding the ER entrance would have been challenging given how tired my husband was at that point.
On the ride home, I realized they had given me something to dry out my saliva, because I was barely able to talk due to tongue and cheeks being stuck together. Home by 12:30 where I inhaled a small bowl of soup, some crackers, some ice cream, an ibuprofen, and an oxycodone tablet.
Much-interrupted sleep over the next few days as I was told explicitly to alternate ibuprofen and tylenol, one every 3 hours, and of course I was sleeping on my back at first (hint: don’t add a third pillow, or your head will flop to the side like on an airplane, and you WILL get a stiff neck). I realized after a day or so that the CPAP was just not gonna work at first - likely I’ll go back to using it in a couple of days. Paring down on the pain meds in the last day or so, largely because I’m sick of that %&$^ medication reminder alarm waking me up.
I made it downstairs for food on the Saturday but otherwise stayed upstairs. Sunday, I went downstairs and with my husband as escort, did a loop around our cul de sac. Monday, did it solo. Tuesday, did two loops. Yesterday only 1 because my gut suggested I needed a bathroom and I didn’t think a steaming pile on the sidewalk would endear me to the neighbors. Today I managed 3 loops.
Tomorrow we might attempt Costco - our TV died just before this and we need a new one. My son will drive of course.
3 more weeks off work unless I decide to be nice and go back a little early. I’m only tempted to do that because I’m likely going to take more time later in the year.
My consult with a plastic surgeon re possible risk reducing mastectomy was originally 3 days ago. When my surgery date got finalized I figured I’d better postpone it, though in hindsight I likely could have managed it. It’s been bumped out to the week after next.
Great news! Glad you are healing nicely and well on the way to recovery.
Thanks for reporting back in and I’m so glad it went well for you (except the g-d awful delay).
Kudos for you getting right out there and doing those laps around the neighborhood! You’re a dream patient.
Glad you’re on the other side of it.
And it’s on the other side of my skin…
I’ve been titrating the pain meds (Tylenol and Advil) for several days and plan to not take any today.
Next Monday, the titty doctor. Well, the plastics guy - already seen the main breast surgeon.
I’m getting more inclined to do all that - my health is arguably better now than it has been in years. and certainly better than it will ever be again. I worry that delaying risk reducing mastectomy until later might make it more difficult, health-wise - and TREATING breast cancer would definitely be harder.
The notes from the breast surgeon noted that I had expressed concern over my girls being long and skinny. What I actually said was “They’re becoming tripping hazards”. I guess she didn’t really want to document that in the formal records.
Keep us updated!
How’s the recovery going? Hopefully continuing to be more active?
Yep. Not doing MASSIVE amounts of walking, but I’m running errands pretty much as I need to. Three trips to Costco in the past 10 days (1 to buy groceries and look at a TV, the next to buy the TV, and then a week later for a few more groceries). The only issue I had with any of them was related to needing to stand too long, which was a problem well before the surgery. Only affected by the surgery because at the moment, I don’t feel comfortable trying to wear compression shorts.
I saw a plastic surgeon yesterday re the upcoming breast surgeries (will be multiple) and I see the gyn onc in about 10 days for my post-op.
Bumpdate of a sort:
I was cleared to swim at my 4 week post-op, though I held off for a couple more weeks as I was concerned over the weight restrictions and aerobic exercise. Generally feeling back to normal though my stamina isn’t ideal yet (orthostatic hypotension is still bad).
And boob job stage 1 is in about 7 weeks. Eeek.
It occurred to me that I’m lucky this all came up when it did - if I’m on Medicare in a year, Medicare generally does NOT pay for risk-reducing surgery. So, while I’m in theory eligible to sign up for it, I’m glad we still have private insurance.
My niece - who started this whole thing by being the first to find out about her BRCA1 status - had her tubes yanked a few weeks ago.
I sent her a bunch of pasta: bucatini, penne, calamorata, with a note saying “I heard you were in missing some tubes” or something like that. She was very confused until she saw the note. I’m just grateful nobody tried sending anything similar for MY surgery!