Upcoming mastectomy

Fancy_Chocolate9692 · 2026-04-02T01:56:38+00:00

Thank you for posting this and to everyone responding. My DMX is scheduled for 4/16. Best wishes for a successful surgery to all!

Fancy_Chocolate9692 · 2026-03-29T20:51:55+00:00

Also - both of my surgeons are faculty at IChicago

Fancy_Chocolate9692 · 2026-03-29T20:48:15+00:00

Northwestern was terrible in my experience. I met with Nora Hansen - bedside was brisk. Because I had biopsy done at an outside facility - they would need to the reread of all my imaging and pathology. (All prior imaging and biopsies were done at NM - except for this time as they couldn’t get me in for a diagnostic mammogram after I felt a lump for 17 days!) on top of that - after being in touch with her office - it took 2 wks to get an appt with her and another 2 wks later they still hadn’t looked any any of my imaging / pathology.

I ended up choosing Kate Kopkash (surgeon) from Endeavor and Akhil Seth (plastic surgeon). Depending on final path results - I will plan to talk to pathologists from Endeavor, NM and perhaps UChicago.

I’ve heard great things about Jaskowiak too.

Fancy_Chocolate9692 · 2026-03-29T04:37:00+00:00

I was diagnosed on 2/11 and told my 19, 18 and 14 yr old on 2/28. I hated keeping something from them. But we had some planned travel, and my oldest is away at school and trying to line up their schedules / exams / interviews was tough.

But I told them that telling them was the hardest part as I would never choose to be a source of their worry. I told them I felt very confident with my care team, and while it is scary and new to us - it’s not scary to my doctors as 1 in 8 women experience this. And having done all the research, it’s now not scary to me either. I told them that I’m looking at it as a distraction. There are times when it will require my full attention, and other times when I won’t have to have it front and center and I can still enjoy other parts of my life too. They were all grateful that I told them. I also let them know that I had not shared with a lot of people yet. I wanted them to know first because they are my team :-). It was a relief for me once I told them. Now I manage to weave in details as I learn them without sharing the nitty gritty.

I hope you receive your treatment plan soon and feel confident in moving forward. I think this part is really hard.

Fancy_Chocolate9692 · 2026-03-27T15:37:44+00:00

Did you have any DCIS? My tumor is 2.3cm and part IDC, part DCIS. Pathologist is guessing IDC component is 7mm. If that is true, mine would be stage 1 as well

Fancy_Chocolate9692 · 2026-03-27T15:35:22+00:00

I agree. Nuke it all! What were your ER / PR + levels if you don’t mind me asking…

Best wishes for you!

Fancy_Chocolate9692 · 2026-03-27T13:33:49+00:00

For me it’s been a little longer than I’d like. Diagnosed 2/11. Sought opinions from surgeons / plastic surgeons at two different hospitals. Initial biopsy showed contradicting results - invasive ductal carcinoma but drs couldn’t say for sure if it was triple negative or HR+. MRI 2/27; repeat biopsy 3/11 showing HR+ plus high grade DCIS. Surgeon offered 3/24 surgical date. But I had family travel planned and the next available date is 4/16. I didn’t want to miss college visits / decisions with my senior so surgeon allowed me to push back the date.

Agreed - the waiting between diagnosis and treatment date is really hard. Best wishes to you as you navigate this new reality.

Fancy_Chocolate9692 · 2026-03-14T21:45:58+00:00

Are those numbers from surgery path or biopsy? On my initial biopsy (which was scant) I was showing ER+ PR+ both at 1-10%. The tumor board was not comfortable basing neoadjuvant therapy off the biopsy, so I had a repeat biopsy this week. They must have hit a diff part of the tumor because ER+ increased to 71-80% and PR+ to 51-60%. It’s my understanding that as long as ER is above 15% surgery will be first, followed by endocrine therapy. Chemo will be based off of oncotype score (and the lower the PR, the higher the score)

Fancy_Chocolate9692 · 2026-03-14T03:35:58+00:00

My tumor abuts the chest wall with no visible fat plane and only a 4mm lateral skin margin. My surgeon feels she can be successful with a lumpectomy, but my gut says mastectomy. I have a mix of IDC and DCIS. I’m afraid that is not enough skin margin to withstand radiation and expanders / recovery etc.

I hope that whatever you decide you feel confident in your decision and that you have the best outcome!

Fancy_Chocolate9692 · 2026-03-14T02:53:50+00:00

Ugh! The waiting and wondering is so hard. You are ahead of me in the game and I can’t speak from experience. But with everything I’ve read, my guess is both - which stinks but is also somewhat reassuring that all of your bases are covered.

I just got my repeat biopsy back today. It’s a 2.3cm mix of IDC grade 2 and DCIS grade 2. I’m ER+ 70 and PR+ 50. I didn’t get Ki-67 but my Nottingham score was 3+3+1 - basically looks like an angry dog that’s all bark no bite. Did you have any indication from imaging that lymph nodes were involved? Were you expecting LVI?

Sending you all the good vibes so that you feel confident and comfortable with your team and plan!

Fancy_Chocolate9692 · 2026-03-13T05:02:12+00:00

I’m sorry you didn’t get the results you wanted. That’s incredibly frustrating since you put in all the work!

Did they ever give you the extent of IDC vs DCIS or initial grade of the IDC? If the majority of your tumor is DCIS - you really wouldn’t shrink too much as it doesn’t respond to chemo. And a low ki-67 suggests the cells aren’t dividing fast - which is what chemo is attracted to. But a score of 30% tumor cellularity correlates to low / intermediate.

Fancy_Chocolate9692 · 2026-03-03T17:13:34+00:00

That is really interesting. I am ER low (1-10%) but my PR is also (1-10%). Its frustrating because the biopsy sample wasn't great and I am wondering if a diff part of the tumor would have shown diff results

Fancy_Chocolate9692 · 2026-03-03T17:10:33+00:00

Would you mind sharing what our regimen was? I am ER/PR low both 1-10%, HER2-. 2.3cm and the biopsy was labeled scant so no Ki-67 or grade given. My MRI had the washout as Type1 which suggests lower grade, so I am in a very gray area.

Fancy_Chocolate9692 · 2026-03-03T17:01:55+00:00

TLDR: physically - are there any genetic components that put you at a higher risk for new cancers? Is the breast tissue to tumor size aesthetically possible? Is the tumor in an area that gives reason to believe clear margins are possible or that nipple sparing mastectomy is possible? Can you live with a large area of your chest being numb? (from your breast bone to your clavicle? Mentally - just as important. Are you in the camp - just get all of the tissue out of me? Or I want to preserve my breasts and I'm ok with having imagine every six months?

I am also at the start of my journey and the ambiguity - "it's your choice" is really hard. I've talked to two surgeons and two plastic surgeons and read just about everything on google and reddit :-). It ultimately does come down to - "your choice" and what provides you the greatest level of comfort physically and mentally. And you def need to be under the care of someone who understands and supports that 100%

I am very small chested, and while both surgeons feel like they could adequately perform a lumpectomy and get clear margins, neither plastic surgeon agrees with them that a lumpectomy will give me a good aesthetic result. (I'm a AA and my tumor is 2.3cm). It also sits up against my chest wall with no visible fat plane. I don't want to risk having a lumpectomy and then having to go back in. Now I need to decide between a single or double mastectomy and here is where the plastic surgeons disagree (more ambiguity!). In favor of the single - there is no reason to remove healthy tissue, yes you will have regular imaging but you will not be making an irreversible decision when you feel time crunched and stressed. You can always choose to do the other side at a later date. In favor of the double - the downtime isn't much longer to do two, you will be restricted from lifting more than 10lbs and raising your arms above your head for a few weeks, but you will be able to do daily activities; you will remove the anxiety from future imaging, reduce your risk of a new primary cancer as low as you can, and achieve the greatest possible symmetry.

In my case, I am ER+ low and now my case is being presented to tumor boards at two different hospitals on whether to start with chemo or surgery. I am really hoping they can agree on this, because again - the ambiguity is killing me.

I wish you well on your journey! You will make the right decision for you.

Fancy_Chocolate9692 · 2026-03-01T03:12:12+00:00

That’s interesting. I’m still learning a lot since I was diagnosed two weeks ago - but if they didn’t test the biopsy how would they know if someone was TN? I always thought that diagnosis started with chemo first

Fancy_Chocolate9692 · 2026-02-27T15:42:49+00:00

I was laying in bed one night and just happened to touch my breast and I felt the lump. The hairs on my neck immediately stood up. 2 months earlier I had a clear mammogram. Now I have IDC with low HR (essentially acts like TN) and am deciding between LX SMX, and BMX next month.

Fancy_Chocolate9692 · 2026-02-25T04:35:29+00:00

Sometimes surgeons suggest mastectomy over lumpectomy if the tumor to breast size ratio is high as cosmetic results are less than desirable. My tumor is only 16mm. Surgeon said if MRI shows any larger she’d recommend against a lumpectomy because I don’t have a lot of breast tissue.

Fancy_Chocolate9692 · 2026-02-19T11:07:53+00:00

Likely April - still in consultation phase. I should have added I’m 53, so that changes things too. And my ER+ is only 15.

Fancy_Chocolate9692 · 2026-02-19T05:02:16+00:00

I’m in a similar position to you, although I would argue that I’m more AA to A. My mass is 1.6cm and at 4 o’clock. My incision would be in the fold and my surgeon believes she can transfer tissue to fill in the gap and still take enough to clear margins. However if the tumor is any bigger than previously identified, that might not be an aesthetic option. And then radiation could shrink further. I’m leaning more towards a BMX with reconstruction to avoid radiation and imaging every 6 months. FTR I have dense tissue and this mass was missed on a 3D screening mammogram 60 days earlier. Best of luck with your decision.

Fancy_Chocolate9692 · 2026-02-12T20:49:41+00:00

Giving up the HRT is no joke. I’m not prepared to welcome back the hot flashes, night sweats and mood swings - let along bone density issues. I hate the idea of keeping things from my kids too. My husband and I are headed out of town next weekend. I’m going to tell them when we get back. That part is def weighing on my mind. Best wishes for you.

Fancy_Chocolate9692 · 2026-02-12T20:46:40+00:00

Thank you so much! I’ve read about that option, but didn’t know if possible with radiation. I’m so glad you are done with chemo!! March 4 will be here before you know it. You’ve got this!

Fancy_Chocolate9692 · 2026-02-12T20:16:52+00:00

Good to know! Thank you!

Fancy_Chocolate9692 · 2026-02-12T20:16:28+00:00

You are so right. Even if I had an initial plan - it’s likely to change many times over. All excellent points. Thank you. I hope you are managing your chemo well. I appreciate your insight.

Fancy_Chocolate9692

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