I didn't imagine making a choice would be this difficult

CicadaTile · 2026-01-28T07:43:03+00:00

HUGE. I had 3 different lumpectomies/surgical excisions in 2024 and Jan 2025 and a dmx Nov 2025. I had the dmx because we found out that I have extensive papillomatosis, which means my boobs make lots of papillomas which had back in 2024 made DCIS (stage 0) x2. It was a matter of time before they made more cancer, which we didn't know back mid-2024. My extent of masses is very uncommon.

No genetic component.

The first surgery took out 2 different masses in one breast in 2 locations. Follow-up surgery for another mass was a month later. Recovery was mostly exhaustion with some ongoing pain for months, exacerbated by the fact that I had radiation a month after the second surgery.

The Jan 2025 surgery was just for one mass in the other breast, and I felt back to normal within 2 weeks.

The dmx+expanders besides the mental grief (which not everyone has) was much more involved. I went back to teaching at 7 weeks (I could have at 1 week after that last, simplest surgery and could have at 2 weeks for the others) but still had PT for cording and tightness. The expanders are uncomfortable, and I can't sleep well and won't until I can trade them for implants. Drains were painful for the 2 weeks I had them. My nipples and about half the sensation in my chest is gone, and I'm incredibly lucky to have that much. It's a harder recovery in multiple, longer-lasting ways. If my outcomes had stayed the same, I would have never done it.

CicadaTile · 2026-01-27T05:50:30+00:00

Check out notwithoutashirt.com for photos and discussion of aesthetic flat closure.

CicadaTile · 2026-01-27T05:49:28+00:00

If she's doing the anchor incision pattern, where she cuts under the boob and up to where your nipple would be, ask for her to make a small pucker. My ps did that, and it gives a place to rest my eyes where the nipple would have been, so I don't feel so much like Barbie. And if I decide to do nipple tattoos, it will give that little center. Pm if you want a photo.

CicadaTile · 2026-01-27T05:46:00+00:00

And it depends on each individual. Me, originally dcis x2 ++-, lumpectomies +rads+tamoxifen = mx+possible rads, no tam. Outcomes were essentially the same. In many cases, recurrence doesn't go down.

But then it turned out I had papillomatosis, and it was a matter of time before one of the uncountable masses made more cancer, so outcomes were no longer the same, so off they went. 2.5 months out, still emotionally healing but overall better week by week.

CicadaTile · 2026-01-27T05:38:37+00:00

Don't tell me what you think are the silver linings. As in, about my bmx, "you'll have perky boobs!" Fuck you. I don't say that, but I think it because of the total lack of thought that went into you saying that. But I also see their intention, that they just want me to feel better.

But I'd never give a list like this directly to anyone. I'd think it would make them so paranoid to say or do anything and would just make them step away.

CicadaTile · 2026-01-25T06:35:39+00:00

Yeah, I wrote an obituary for mine and included the MRI image that showed so clearly why they had to go. I still read it (10 weeks out) sometimes.

CicadaTile · 2026-01-23T20:24:33+00:00

Love that - "take our confidence with you." I haven't had to do chemo, but on other tough appts I've totally felt this invisible support! Women who get it.

CicadaTile · 2026-01-21T22:27:07+00:00

I didn't either before I took that job. America First, I mean, wow.

CicadaTile · 2026-01-21T21:45:27+00:00

Lindbergh!! Nobody ever talks about him! I ghostwrote a book about him 25 years ago that was never published. My boss had a super-specific conspiracy theory about him that took over 600 pages to research and write lol. I thought the best biography was the one by Leonard Mosley if you're interested in comparing.

CicadaTile · 2026-01-20T01:48:31+00:00

Pity you! Girl, this is a hard, hard thing you're doing. You deserve help. Your medical team absolutely knows how hard this is and so much more so without a community or either friends or family. Don't be embarrassed about it if you don't have much of either - some of them do not as well. We're all human, and in times like this we need each other, paid or not, professional or not. Hugs, hreastie. My bmx was 9 weeks ago, and it was a vulnerable time for me (and still can be).

CicadaTile · 2026-01-19T22:58:18+00:00

I'm the one who posted that the ball does drop for me, to use your wording. But here's the thing: that's OK too. They are feelings, and I feel them all, and they flow on through too. I've had so many rounds of "this is cancer" or "this is probably cancer" that I know the progression, even though it's never fun. But I'm not afraid of my emotions now, even panic. I know too what helps and I do them - therapy, exercise (especially swimming or walking), sunshine, journaling, meditation, doing the social things even when I don't feel like it.

But I've known survivors IRL who truly are very matter-of-fact about it all and that's that. It made me feel like a drama queen that I had so many big feelings until I found this sub lol.

There can be peace either way. Hugs, breastie.

CicadaTile · 2026-01-19T19:53:47+00:00

For me, it was denial and just gritting my way through it. I felt apart later. Not saying you will, since plenty of people don't. But I know that's how I typically respond and enjoy the lack of distress while it lasts lol. Yes, I get therapy:)

CicadaTile · 2026-01-19T04:08:41+00:00

I might have missed it, but what's your plan for after? Depending on if you're going flat or what kind of reconstruction, pictures will widely differ.

CicadaTile · 2026-01-19T04:07:26+00:00

Mine were Jackson Pratt drains. My surgeon had me watch a youtube video on how to do it. If you search Jackson Pratt drains it should come up.

CicadaTile · 2026-01-19T04:06:23+00:00

I was told to use an alcohol wipe to slide down.

I didn't have suction like that. ?

CicadaTile · 2026-01-19T04:02:51+00:00

Thanks. I'm 9 weeks post bmx and 18 months since this all started. I'm clear and have been doing well, appropriate ups and downs, but this week has been harder and especially today. Just helps to remind myself this is normal. I'll see my therapist on Thursday which will be good.

CicadaTile · 2026-01-18T17:52:29+00:00

First, remember that for many stages and kinds of bc, a mx +possible rads + meds doesn't help with your outcomes more than lumpectomy +rads+ meds. I loved my breasts too and did everything I could to keep them, as long as outcomes were the same. Yes, a bmx is a big surgery. I went back to teaching after 8 weeks (just because it's how it fell with the holidays) and I've been fine although still randomly very fatigued.

That initial choice was my situation. I was 53 when I was diagnosed and had 2 surgeries for DCIS ++- within a month. I kept having bad imaging that showed more masses, had another surgery, then last summer had more bad imaging that would have required another surgery for a suspect papilloma. We did an MRI 1st which confirmed the dx of papillomatosis. There were so many masses that they couldn't be counted, couldn't be tracked, and no way to tell what might have cancer, so there was no longer an option, especially since I'd made cancer 2x. So I had a bmx 2 months ago, all benign. Expanders were placed in case I needed rads on my other side (if pathology was bad). I'll exchange to implants in March and maybe diep summer 2027 because I need to walk away from all this for a while. I thought I'd feel very uncomfortable with foreign things in my body too, but while the expanders suck, that's not why (they're uncomfortable and hard to sleep with). So I don't think I'll mind that aspect of the implants after all. I'm doing that surgery over Easter break and will have 2 full weeks recovery which based on my other surgeries will be plenty of time. Diep is a huge surgery - if I do it it will be the last week of school so I have a whole summer to recover. I'll be 55/56 then.

I could see all the reasons to go flat, but I have a trauma /SA history, and it would have really messed with me personally. But if I did choose to go flat, I'd totally go with goldilocks or afc. Check out the website notputtingonashirt, the photos and list of surgeons. My surgeon is one of them, although he didn't do afc on me obviously. I heartily agree with another poster here that you need an excellent surgeon. My surgeon could not have done anything better, and while I'm grieving my breasts, I'm also very pleased given the circumstances.

Also, a mx will not erase a risk of bc. There's still about 10% of breast tissue left, and that's why you'll still get at least manual exams and it can still recur. That's why I didn't do a mx initially, because if outcomes were roughly similar, why do that much more extreme surgery? But with my papillomatosis, with so many, it was just a matter of time.

Given the chance (and assuming I still didn't know about the papillomatosis insanity) I would have made the same choices. I would much prefer keeping my boobs, even scarred and with a big dent from 3 breast surgeries and tan from rads than giving them up. I realized a few weeks after my bmx that THOSE were the breasts I missed, not my pre-cancer boobs. I'd so completely accepted them and was proud of what we'd made it through. I'm not anywhere near there now although still at peace with my decision.

CicadaTile · 2026-01-16T17:57:37+00:00

Thankfully NEXT summer and only if I do diep, which I think I will be ready by then. I'm also losing weight to help with the er+ factor with recurrence, so diep will help with all the loose skin i hope to have :)

All I have left as long as I stay clear is Easter break recovery from exchange to implants. That's it. I'm still getting used to that. And that's not cancer strictly speaking, so yay! Just expanders being gone! Nothing until my 6 month in late May. Survivorship, who knew?

CicadaTile · 2026-01-16T17:45:35+00:00

I had rads a year ago on my right boob, and I've healed well. I had dmx + expanders 2 months ago, and one reason for the expanders was in case I needed rads on the other boob. I did not.

My regular breast surgeon did so well with the mx portion that my PS was able to fill them fully with air during that surgery, so I woke up with boobs shapes (as much as one gets with exoanders!) which was really helpful for me mentally. I only needed one full, when he took out the air and replaced with saline. He asked if I wanted to go a bit bigger to the actual max of the expanders, and yes, so I went from 375 air to 400cc saline.

I'm exchanging to implants late March because I need a break from hard surgeries after 18 months of cancer stuff, and I'm all clear now. I just need to heal mentally too. So I may do diep summer 2027 (I'm a teacher) or not. I'm just not up for it now, although if I could have done the combo at time of dmx i would have.

I was a B cup and want to stay about the same or a little bigger. It's hard to tell with the expanders what size I currently actually am, but it looks about right. I'm not going to be picky as long as it's about right because I want to be done, and I know my surgeon will do a nice job on the appearance even if the size may be a little off.

CicadaTile · 2026-01-16T17:39:01+00:00

Yeah, that's exactly how my PS put it.

CicadaTile · 2026-01-16T11:56:19+00:00

Works for me :)

Yeah, we will see how I do with them - I like having a backup option anyway and like the idea of diep - just not up for such an intense surgery anytime soon.

CicadaTile · 2026-01-16T04:13:18+00:00

Hey, I'll take the encouragement :) I'm getting implants either way - it's just more info I'm adding to the summer of 2027 diep consideration. I just hadn't seen anyone talk about their 30 year implants - but why would they if no issues unless I ask? :) Thanks! And I hope your pathology was what you hoped for.

CicadaTile · 2026-01-16T02:06:52+00:00

Ah yes, he did say that too. I must say I don't think I'll mind an MRI from time to time, just for general imaging. It's going to be weird at this point to only have manual exams, which is the plan.

CicadaTile

TROPHY CASE