New Diagnosis - Recurrence less than 1 year
I had DCIS last year, had a lumpectomy with neg margins, no necrosis, 90% Er/PR positive. Tiny, so no additional testing. I did not do radiation, but i was on tamoxifen.
Almost a year to the the day of my lumpectomy, I had a screening MRI. Two spots came up as “new” (I have extremely dense and “busy” breasts). Had to wait 2 months for biopsy because I had a hysterectomy that was rescheduled 2 times.
Biopsy results from Friday: One is benign, other is 3cm high grade IDC with high grade DCIS and lymphovascular invasion. It’s about 2 cm from lumpectomy bed. My MRI from end of October showed no lymph node involvement. Oncologist has no answers, just that we need to wait for additional testing, which will come after my HER status/full tumor profile.
Im kicking myself my not getting the double mastectomy last year, but I was worried about my job (first year teacher).
I cannot stop obsessing snd am both looking forward to and dreading going back to school on Monday.
Comments
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Welcome to the forum. We're glad you have found us, but sorry that you are part of this 'club'.
If only we all had a crystal ball and could foresee the future-right? There was no way that you could know the bc would come back. It might easily have been a one and done thing. At the time, you made the decision that was right for YOU and that's all that matters. I'm so sorry you have to go on this journey once again and so soon after your first time. BC is sneaky. It plays by no rules. We just have to take things one day at a time and get through it.
Don't second guess your decision from the past. Move beyond it and deal with your new dx. You will get through this and we are here to help you with it.
Take Care.
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Hello @Chellechelle.
We are really sorry you’re facing a recurrence. You don’t have to figure this out alone. This community is here to walk with you and support you however you need.
Holding you in our thoughts.
-The Community Mods
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@chellechelle This is exactly what I am afraid of. I am newly diagnosed with DCIS, grade 2, solid 30 mm x 15 mm x 12 mm with small focal necrosis, ER+ (91% - 100%) on June 22nd. The MRI I had yesterday confirms this, no new abnormalities found. So, the "logical" course of action seems like lumpectomy, right? But I keep thinking about a mastectomy, even though a part of me keeps saying that that would be an overly dramatic response to such a "small" and "simple", non-threatening cancer.
How are you doing now?
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@elanor.m Hi!
I am doing okay, but A LOT changed from my last post to now.
I decided on a DMX this time, although they told me I was a candidate for another lumpectomy. At my first oncology appointment, (6/19) they told me that it looked like my lymph nodes were "plump" but most likely nothing to be concerned about.
Had my DMX on 3/3, pathology came back as mostly the same as the biopsy except I had 2/4 lymph nodes positive for macromets and 8cm of DCIS that didn't show up on any of my scans. Because positive nodes, I knew chemo was on the table now. However, my oncotype score came back as 19 - intermediate risk for recurrence and less benefit of chemo. I ended up doing 4xTC chemo anyway and will start radiation next week.
It is a difficult decision because you could very well over treating DCIS with a DMX, but I would not classify it as "non-threatening."
I had extremely dense breasts and it was hiding all kinds of stuff. Due to my low KI67, it is also possible that the IDC was there, too, and we just didn't see it.
I got unlucky, most women don't have outcomes like mine. I just wish I had listened to my gut because I wanted to DMX to begin with.
I want to be honest, though. The DMX was hard. The drains were miserable, the expanders still hurt everyday and I have no sensation in my nipples or below. Right now, I am still badly scarred - through my plastic surgeon said it will get better. Due to radiation, my reconstruction options will be limited and require multiple surgeries.
I wish they had better tests and treatments so that all women could avoid the DMX safely. They are definitely working on it, but right now most decisions are based mainly on algorithms and statistics. My oncologist keeps telling me they aren't magic numbers and nothing is guaranteed. Even with a DMX, they can't get ALL the breast tissue and in cases like mine the lumpectomy won't clear what the scans can't see.
An alternative perspective I have been thinking about, though. Had I gotten the DMX last year, I would not have received any more scans. If there was DCIS left in the breast tissue or a new breast cancer formed and it progressed to IDC, then we likely wouldn't have known about it until it was causing symptoms and possibly metastatic. Not sure how much logic stands up there, but it has been rolling around in my brain. This can STILL happen to me with my DMX, too…
Best of luck in your decision. None of this easy and even DCIS is scary. It is "real" cancer by the way, don't let anyone diminish or invalidate your feelings because they think it isn't. It is just early enough that you have a much better prognosis and a chance to halt it.
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