Feeling isolated after comedocarcinoma
Anyone out there who had grade 3 DCIS, subtype comedo (aka comedocarcinoma) with expansile comedo necrosis? I was ER- and also had cancerization of lobules by high grade DCIS.
I had a bilateral mastectomy 2 months ago, which my surgeon and Nurse Navigator fully supported. I think they were relieved that I understood how fast-growing and aggressive my particular DCIS was. After I made my decision, my surgeon twice commented that had I put off my mammogram by 6 months, she would have been treating me for invasive breast cancer (she also thinks it was triple negative). I did a lot of research and the bilateral mastectomy was an easy decision for me and I don’t regret it.
However, I feel kind of alone. There’s a lot of medical publishing that talks about DCIS being over-treated, yet the authoring doctors do not or just barely even acknowledge that the comedo subtype and grade 3 exist, let alone warrant aggressive treatment. And because most DCIS is ER+, the fact that hormone blocking medication has no effect on ER- DCIS is just one of those outliers that gets brushed aside. I’m GLAD I don’t have to take those meds. I’m also scared because I can’t get the extra security they offer.
Some friends and even some of my Doctors of other specialties don’t really understand why I had a double mastectomy for “just DCIS” (and nobody really wants to be schooled in pathology haha). As if I’d have my breasts amputated for no reason or out of ignorance (??)
What I had was stage zero and it’s gone; I don’t feel I’d relate to women in a support group who have been through so much more with worse outcomes.
So I’ve got a combination of imposter syndrome along with a newly flat chest after a diagnosis that is commonly downplayed — despite having had an uncommonly aggressive subtype.
Additionally, though bilateral mastectomy definitely greatly reduced my risk, I do have increased risk of recurrence compared to most DCIS due to 4 pathological factors.
Even so, there’s no follow-up care for me other than a few checkups (no hormone blockers because I’m ER-, no radiation because I’m a heart patient and cancer was in left breast). Surgery and then nothing, which is both great and terrifying at the same time. It’s up to me to find any potential recurrence via self-exam. Yikes.
The “DCIS is just pre-cancer” attitude, the medical movement to remove the word “carcinoma” from DCIS, and the common concept that breast conserving surgery was a truly viable option for me (it would not have been the wisest choice to stop Progression of Disease) all combine to make me feel isolated. It’s a lonely place.
thanks for listening
Comments
-
Hi marshmella — we’re really glad you posted. What you’re describing makes a lot of sense, and you’re not alone in feeling this way. 💗
The way DCIS is often talked about can feel minimizing, especially for people who had high-grade or aggressive subtypes and made big decisions like mastectomy. Feeling dismissed, misunderstood, or stuck in an in-between space is something many members here relate to.
Even if others don’t fully “get it,” your experience, your loss, and your fears are real — and you don’t need to justify your choices to belong here. Thank you for sharing, and know we're here for you!!
1 -
Hi @marshmella. I relate to this! I had a bilateral mastectomy for DCIS, grade 3, with comedo necrosis and microcalcifications. I had an extensive history of papillomas and nipple discharge in both breasts, had multiple in both breasts biopsies over the years that were all benign. I found out I was CHEK2 positive after my sister passed away (due to other cancer, not breast or ovarian cancer) and started being monitored by alternating MRI/ultrasound and mammogram (although the mammos were useless due to density). I went for an opinion at a high risk breast clinic where they re-read my images and asked for another biopsy - and lo and behold DCIS.
Before the confirmed DCIS, both my local breast surgeon and the one at the high risk clinic said they'd recommend bilateral mastectomy, no question about it, if any DCIS or IDC was found. And I agreed immediately, but that didn't stop me from struggling with the reality of how crazy it was to get the "best" cancer diagnosis, stage 0, and go with the most extreme surgical option. The DCIS was found to be pretty extensive at surgery and there was some kind of questionable finding in a lymph node that was ultimately determined to be benign. My surgeon tells me we dodged a bullet that was definitely coming for me.
I do get a bit of imposter syndrome with other women who have had breast cancer or are undergoing treatment. And I feel like I have to justify myself (see last sentence in previous paragraph - see I was right!), both why I didn't just get a lumpectomy or why, if I had a mastectomy, wouldn't I have to have chemo or radiation? It doesn't match what people expect or think they know about a breast cancer diagnosis either way. Saying "I had breast cancer" sometimes feels loaded. It's a weird place to be. It even feels like I should justify why I'm even here reading this forum right now to happen to see your post!
I was diagnosed in January, almost exactly 3 years ago. I don't regret my decision at all. I'm so relieved to be off the cycle of constant surveillance and biopsies. But the events of that calendar year - where I was diagnosed with DCIS, had the mastectomy, reconstruction, and then a hysterectomy and oopherectomy (again, most prophylactic but constant benign issues) have had a big and lasting impact. I can't always explain that to people. I'm incredibly grateful, but I also have a lot of complaints about what has happened to me and my body, and a lot of worries about what else will go wrong, especially if no one's watching closely anymore. I'm not taking tamoxifen or other meds either - they didn't recommend in my case although I was ER+, and I do worry about the low but not 0 chance of recurrence.
So hugs, I get you. You're not alone.
1 -
Bilateral mastectomy with reconstruction, hysterectomy, and oopherectomy!! OOOF that’s a LOT. You have been through the wringer…over and over. I’m sooooo glad you went to a high-risk breast breast clinic!! How proactive and impressive. Your quote: ‘Saying "I had breast cancer" sometimes feels loaded. It's a weird place to be. It even feels like I should justify why I'm even here reading this forum’… you sum it up perfectly. So did this one: ‘…but that didn't stop me from struggling with the reality of how crazy it was to get the "best" cancer diagnosis, stage 0, and go with the most extreme surgical option…’ I think we were both very, very lucky but also very, very wise. Since grade 3 DCIS has a higher recurrence rate than grades 1 and 2, as do subtypes comedo and cases with comedo necrosis, we aren’t wrong to be concerned with recurrence. But it’s hard to “justify” that worry, too, when so many women face such terrible odds / are already fighting invasive or metastatic disease. It’s a strange club. I’m sorry about your sister. Hugs back!!
2 -
Thanks marshmella. It's true, we've been lucky, but we we've also hopefully made the smartest informed decisions we could for ourselves. I'll definitely accept everything I went through for heading off or reducing the risk of a later stage diagnosis. Glad you posted. It's good to hear from someone in the same situation! Cheers!
1 -
My friend (who died of a stroke caused by complications of a double coronary bypass, precipitated by poorly controlled T2DM, longstanding & unrelated to cancer) was diagnosed in 2016 at age 72 with multifocal DCIS, grade 3 with comedonecrosis. ER/PR-. That's more common in DCIS than in IDC. They did not test for HER2, explaining that most hormone-negative DCIS is HER2+, which is usually not a factor because the histological profile and wholly ductal location of DCIS makes it highly unlikely to become invasive, much less metastatic. Because it was multifocal and in both breasts, and she was flat enough to have not worn a bra in 30 years, (and uninterested in dating after having been widowed for 17 years), she opted for a BMX with no reconstruction. Once the drains came out, she said she felt liberated.
1 -
thank you for commenting!
0
