I wanted to follow up on what began as "just DCIS" and Thank You, PJ
My Story: A follow up from DCIS now Invasive Ductal Carcinoma
In May I was diagnosed with DCIS, I questioned treatment, especially when research showed such contradictory statements of what DCIS is; PJ helped me with this a lot and I wanted to thank her for this..especially when you learn what happened.
This started as a cluster of microcalcifications on the mammogram; the biopsy showed DCIS and then the lumpectomy provided a pathology of 3.2 cm DCIS, high grade, and basically positive margins...and according to the radiation oncologist, angry, serious stuff. They recommended a mastectomy; in the meantime, my surgeon became very beligerent when I asked her questions about the procedures involved and I ultimately fired her and found someone a lot closer to home and an incredible resource.
On July 23rd I had a total mastectomy of my right breast; the team had decided not to do a sentinel node, but while I was in there, 1 presented itself in the course of the mastectomy. The final pathology showed residual high grade DCIS and Invasive ductal carcinoma 7 mm; the one node was negative. They're strongly suggesting that I have hormonal adjuvant therapy, most likely aromatase inhibitors...I follow up with the medical oncologist on the 25th of August.
My new surgeon strongly encouraged me to have some sort of reconstruction at the time of the mastectomy; my first surgeon could care less and hadn't spoken to me of it at all! (another beligerent response to a question!) Because of limitations on time from work, I've opted for a phased reconstruction wherein a tissue expander was inserted and will stay until I have the full reconstruction in 1 1/2 years when I retire.
So, PJ, I was reeling from the whole process! How did we go from an "itsy-bitsy, no big deal" DCIS to extensive DCIS and invasive cancer! I'm finally coming to terms with it, but it really jolted me from my complacency that mammograms (smug in my digital films!) show everything, to the realization that in my case, they showed almost nothing!
My new surgeon wants me followed up with MRI's from here on out of the left breast and the underarm area of the right side as well; she'll be with me from here on out and I'm grateful for that and for your insistence to move forward with this!
Janice
Hi again, Janice - I"m SO glad you got a different surgeon! As I said, you'll have a long relaitonship with this person - best make it a good one.
I'm sorry it's evolved into IDC - but glad you discovered it. I had a similar experience - within 2 weeks went from "tiny little tumor, a lumpectomy will take care of it no problem" to WHOA BABY, bring on the chemo! Mammograms certainly don't show everything. But then again - I feel I need to caution you - MRs often show too much. They're notorious for false positives. I hope you don't find yourself in an endless cycle of "the MRI sees something, let's biopsy, whoops, it's fine, it's nothing." This does happen pretty frequently... You may be thinking, "better an extra biopsy than cancer," but it can get overwhelming, to say nothing of turning your breast into a painful pincushion! I've hear of some docs advising alternating mammograms and MRIs - you might ask if that's an option?
Good luck with the aromatase inhibitors - be aware they cause bone loss, and head you towards osteoporosis. Insist on a DEXA scan (if you haven't already had a baseline), and then follow up with another every 2 years. If your bone loss starts to increase, ask about osteo drugs - most likely a bisphosophonate, though by that time the new "wonder drug," Prolia, might be available.
Anyway, thanks for checking back. I hope everything goes well for you from here on out. Stay in touch - and good luck to you. PJH
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JaniceRH
Thursday, August 13, 2009 at 05:00 PM
PJ Hamel
Thursday, August 13, 2009 at 05:13 PM
Janice, I did a lot of research, and I'm taking Actonel - so ask if that would be appropriate for you. Also, take a look at our osteoporosis site - don't want to put the cart before the horse here, but you might want to get familiar with some of the terminology. I'll look forward to hearing what your next steps are after the 25th - best of luck to you, and thanks for staying connected here. PJH
Hey PJ, thank you, I'm glad you saw my note; they've already begun discussions about bone loss and new clinical trial in the same breath. I have to learn more about it, but it involves adding a bisphosophonate to the AH. I see the medical oncologist on the 25th and I'll report back.
Thanks again!
Janice