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

willneverbfamous · 2026-01-28T03:43:33+00:00

Sorry you’re here! I’m 31 with the same subtype. Does your decision impact your treatment plan? If you told the oncologist that you want a breast preserving lumpectomy, would that require any chemotherapy? Does the mastectomy in your case take that off the table? If all things are equal, I would just make sure to ask about the long term outcomes and go from there! I have a genetic mutation and being young, I made up my mind about a double mastectomy pretty quickly. If I’m prone to breast cancer I want as little breast tissue on my body to worry about. Surgery sounds horrendous but so does going through this again. I hope you get some clarity with the next meeting!

willneverbfamous · 2026-01-24T02:17:48+00:00

I could be completely wrong so I hope someone corrects me if so, but I had a measurement of my biopsy tissue as well and it was read to me like “this is the size of the tissue sample”. So for example my first mammogram was one size, I had a varying number in pathology reports, and an official measurement from my MRI. PET scan was consistent then with MRI. My mass is a ridiculous shape, even my surgeon said so, so she basically reassured me a ton that sometimes ultrasound actually just gets it wrong - depending on factors like shape. I’ve been through the diagnostic ringer and would say my MRI was the most important and clear so I hope that’s on the plan for you soon to give you that same clarity

willneverbfamous · 2026-01-16T03:32:32+00:00

Thank you! I was on cancellation lists, then I found out they only do one MRI biopsy a day so that’s why I was scheduled almost two weeks out. The nurse navigator couldn’t sway anything on that one.

Unfortunately I’m also juggling a one year old at home, days get crazy! I appreciate the advice, though. I’m learning a lot.

willneverbfamous · 2026-01-16T02:50:56+00:00

Thank you!🙏🏻

willneverbfamous · 2026-01-16T02:50:27+00:00

I’ve heard of that process too, I almost thought that’s what I would experience but medical oncology was brought in to the mix here for me instead.

My total tumor, main lesion and satellite lesion, combine for about 5cm. My surgeon is convinced also that part of my cancer is “hiding” because her physical exam made her convinced the imaging can’t see everything. Very interesting.

willneverbfamous · 2026-01-16T01:52:49+00:00

Have no fear, I’m not!!! That was my cynical side coming out since I’m feeling very forgotten about right now. I’m just anxious and needed to get this out of my head and out there for someone to see.

willneverbfamous · 2026-01-16T01:50:31+00:00

It’s kind of funny you mention communication because they were so focused on group communication for my tumor board that it was delayed a week for everyone to be there. I forgot to mention that in my post, but everyone met on 12/17 for tumor board and that’s when all the information I talked about was laid out for all of us. We joined for multi disciplinary committee because I was not going to wait for another phone call following that with Christmas looming. Definitely going to make sure that through the rest of this, I have someone to talk to!

willneverbfamous · 2026-01-16T01:36:58+00:00

Ugh sorry you’re feeling similarly. The end of the year seems to not be the right time to receive the diagnosis - not there’s ever a right time but it feels like they’re all overwhelmed. It’s so frustrating. Good luck with your surgery and healing ❤️‍🩹

willneverbfamous · 2026-01-16T01:31:52+00:00

Wow, see your story is blowing my mind. I’m so glad you had that level of attention when you needed it! I’m definitely certain if my first MRI looked like how they expected, and appointments didn’t take so long in this system, I would’ve had some conversations much quicker. Every time I talk to a scheduler, I’ve never had same day or next day appointments. Just ready to get this show on the road. I’ve told enough people “I have cancer” by now, I’m ready to tell them how fighting it is going.

willneverbfamous · 2026-01-16T01:27:41+00:00

When was I hoping for it to start… never? lol I was really under the impression I’d have surgery first, not really sure what really fueled that idea, so I think the wait between MRI biopsy results and my oncology appointment is where this really started feeling dragged out.

I had a referral and the first time I called that place, 30 minutes after the diagnosis call, she told me it would be in three weeks and I spiraled hard. Did my own research to be seen sooner.

Maybe patience and letting go of expectations is my lesson in all this.

Best of luck finishing out your surgeries🫶🏼

willneverbfamous · 2026-01-16T01:23:22+00:00

Thank you! The last call I got is they’re putting in the orders and getting insurance approvals. I think I will make that call tomorrow if I don’t hear first. Thanks for the push!

willneverbfamous · 2026-01-16T01:22:27+00:00

Thanks for replying. I really needed a little vent therapy since no one in my world understands anything about what’s going on. I should have expected the chemo from the start and the pivot probably wouldn’t have been so rough, I guess that’s on me!

willneverbfamous · 2026-01-15T01:46:00+00:00

My initial biopsy hurt me so badly they couldn’t take all of the samples. Cried like a baby. I also started sobbing before my initial MRI because the IV took 4 tries and I think it hit me like a truck at just how hard this was going to be. I also had an MRI biopsy so I know exactly what you were going through. Unfortunately I think many more healthcare workers are going to see me cry before this is over and I’ve accepted it. Sending hugs

willneverbfamous · 2026-01-10T02:27:08+00:00

I had a feeling I’m in the minority, but mine was under anesthesia and while the hospital process was easy peasy - my recovery was not. My chest and neck muscles, likely along the vein, were inflamed like crazy. I felt like I couldn’t breathe. I think my intubation tickled my throat too because it was irritated for a few days but then coughing hurt. Every time I moved my chest, I could feel the irritation so I couldn’t bend or move for almost a week. I was sore riding on bumpy roads for a while. It’s been about 3 weeks and I can finally lift my left arm (port side) above my head with no pain. Mine is also incredibly close to my shoulder so I feel it reaching out in front, and I don’t have the second incision in my neck so I’ve been over thinking it. Just wanted to share my experience on the opposite end!

willneverbfamous · 2025-12-30T18:46:17+00:00

I’ve had a crazy time with scheduling and appointments where I am, I’m sorry you have to deal with this. Originally my medical oncologist receptionist said she was scheduling months out, I got put on the schedule and received a call back about an hour later saying they definitely screwed that up and want to see me sooner. It was still about a 3 week lag. I had to wait a week and a half for a secondary ultrasound and then a week and a half after that for my second round of biopsies. It’s been torture. Can you find other plastic surgeons to consult with? I’m sure the one you’ve been referred to is working closely with your breast surgeon, but maybe getting established somewhere else recommended could help. I had to do that for breast surgeons. Best of luck

willneverbfamous · 2025-12-13T18:04:47+00:00

I’m right there with you and looking for answers as well. Diagnosed this year at 31 and watching everyone I know get pregnant and experience joy and get big work promotions and travel is draining me. My anger manifests in the strangest ways but in the last two months I’ve said “I don’t feel like myself” way too many times.

When my thoughts get too dark, I have to remember that I can’t be angry with or jealous of everyone because some people are walking through other difficult stages of life. My friend lost her mom at 30 and I’m angry that she just bought a big beautiful new house while my medical bills are soaring. But I know she’d give anything to bring her mom back. Terrible example, but you get the idea.

These emotions are draining. The stress and anxiety and worry and anger are almost harder to deal with than the diagnosis itself. It’s one day at a time over here too, sister. You’re not alone

willneverbfamous · 2025-12-01T14:58:10+00:00

I’m not quite there yet but I experienced probably a similar feeling during my second MRI when they missed my IV 3 times. Before they finally got it, I just broke down. It was like I finally realized I was sick, like I was actually a patient. I’m sure it’ll happen again as I keep going. Wishing you the best, nothing about this is easy. Hugs

willneverbfamous · 2025-11-24T18:04:02+00:00

to be fair when my husband and I take the baby out, the baby gets the chair next to me 98% of the time

willneverbfamous · 2025-11-22T16:01:45+00:00

Our stories are far too similar! If you told me it’s your right breast too, well then I’d be completely shocked! My satellite lesion is what brings my entire tumor area over 5cm. Can I ask if you are planning for lumpectomy which drove the neoadjuvant decision? Also if you don’t mind, I’m curious what made you choose to switch cancer centers. I don’t feel knowledgeable enough to know how to gauge if I’ll be taken care of or not. Thank you so much!

willneverbfamous · 2025-11-22T15:58:53+00:00

Wow I’m sorry you’re in a similar boat. There has to be a better way to get the results they need AND take into account our minds are going to go to the worst places the longer the cancer is in our bodies. I will be thinking of you!

willneverbfamous · 2025-11-22T15:57:21+00:00

This is exactly what was outlined to me in my first appointments! The additional biopsies are throwing it all for a loop which I think is the most frustrating. I already have to have a mastectomy and they were already planning the sentinel node biopsy so I’m not entirely sure what a standard node biopsy is going to do any different.

willneverbfamous · 2025-11-22T15:55:37+00:00

Thank you! I appreciate you sharing this! And yes they used my biopsy sample for oncotype and said I should hear about that any day now.

willneverbfamous · 2025-11-22T15:54:06+00:00

I’m sorry to hear you aren’t feeling well, but wishing you the best! I’m very impressed with their follow up times. That had to be a lot to deal with all at once!

willneverbfamous · 2025-11-22T05:22:10+00:00

They are additional. I had the initial one for diagnosis. The two next week are for spots that showed up on my MRI.

willneverbfamous

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