What is one thing you wished you knew about DCIS or any breast cancer diagnosis??
I went into my post DCIS diagnosis under the false assumption that my lumpectomy on the right breast and reduction on both was a one and done deal. I was not prepared for the roller coaster of events that occurred post surgery. DCIS in the 3X biopsied benign left breast, a left mastectomy, tissue expander placement, radiation , Letrozole for 5 years and then DIEP flap breast reconstruction. I wish I had joined a support group right after my diagnosis, I think I would have been more aware of the what ifs.
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@befuddled2 - Welcome to Breastcancer.org. And thank you for sharing your experience and for starting this thoughtful question. What you describe really highlights how unexpected and complex the path after a DCIS diagnosis can become, even when the first plan seems relatively straightforward.
If you’re open to it, we have some resources on our main site that explore DCIS, treatment pathways, and life after treatment that may be helpful for others reading along too:
We hope this helps. We're here for you!
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Good question!
I wish I had known how much pushback I’d get from acquaintances AND DOCTORS who do not understand that Grade 3 DCIS that’s ER- with comedo necrosis, pleomorphic calcifications, and cancerization of lobules warranted a bilateral mastectomy. I wish I had asked my breast surgeon for succinct verbiage to prepare for this surprising and painful and inaccurate and unsupportive reaction, particularly when I encounter it in medical settings. (It happened again at gynecologist appointment yesterday. Shocking. Invalidating. Painful. I’m always too surprised for words).
I’m so tired of being “corrected” by non-cancer Doctors. I had a malignancy. My treatment was very appropriate. I went into surgery empowered by knowledge that I sought. I did not panic, nor did I over-react from fear. I was NOT “overtreated”. I am extremely fortunate that a bilateral mastectomy stopped what was bound to be invasive cancer in its tracks. (AFTER I had made my surgical decision, my breast surgeon twice stated that had I put off my mammogram by as few as 6 months, she was certain she would have been treating me for invasive cancer that was likely triple negative.)
My case was very aggressive. Yes, there is aggressive DCIS. It exists. Stop pretending it doesn’t because it’s inconvenient for a narrative.
I’m tired of being invalidated. I’m barely half a year past surgery. I did not have both breasts amputated for fun. My surgeon would not have performed an unnecessary bilateral mastectomy. My insurance would not have approved it. I am at peace with my decision. Do not trample on my peace.
I’m tired of being underestimated by acquaintances and providers alike who have bought into the campaign that ALL DCIS is simply “pre-cancer”. It is not. The low-grade and high-grade tracks are distinctly different. Low Grades may be indolent. That’s not to say it isn’t problematic.High Grade (Grade 3) DCIS is the molecular twin of invasive cancer. It has not broken through the basement membrane yet. It is cancer. It’s not invasive cancer. But it is cancer. It is NOT indolent. It is primed to destroy cell walls and invade adjacent tissue. The progression to invasive cancer is statistically likely and it can happen quickly. It is NOT safe to downplay grade 3 DCIS, particularly with comedo necrosis and/or cancerization of lobules.
Are women supposed to wait until stage zero has become invasive before seeking adequate treatment, merely to earn the approval of people who are ill-informed regarding the progression of grade 3 DCIS? I had an opportunity to prevent cancer from becoming invasive. I did not squander that.
I was ER-, so I could not get any protection from hormone-blocking medications such as Tamoxifen. My tumor was in left breast. I have a long history of arrhythmias that could have been exacerbated radiation. I made the right decision for my case. But I had to withstand pushback both before and immediately after surgery from medical providers. Ouch. I’m still getting pushback now.
I feel terrible for befuddled2, above, who may PERHAPS have been better served by a single “drastic” surgery such as mine. (I do not know if that is the case.) Her prolonged treatment experience sounds miserable. I feel that medical community has not met her needs adequately. Unforgivable. I do not know what grade DCIS you had, befuddled2, but you are living proof that DCIS can and is a serious condition that is a life changer. It should not be trivialized. I’m so sorry for what you have been through so far. I do not know if a different initial treatment would have changed your trajectory; regardless, it does you no good to go through such an ordeal and then have that invalidated (if you’ve ever experienced what I have. Not saying you have!) I’m sorry your journey has been so long. And difficult. And did not meet your expectations.
My initial impression regarding DCIS per an internet search when I first had my biopsy done (I knew the lab was looking for DCIS) highlighted much information that turned out to be unintentionally misleading and not at all applicable to my case.
Regarding the critics: I have zero regrets about getting a bilateral mastectomy. I didn’t do reconstruction. My future holds once-yearly checkups only. My surgeon says my chance of recurrence is less than 1% now. Who wouldn’t want that? Why must I face down continuous medical criticism? I wish every patient could have the gift of such an outcome. I feel terrible for what other patients go through and their extended worries.I have come to believe that some women are getting underserved — or worse, they’re getting harmed — by the current movement to de-escalate DCIS.
Perhaps my post may help one patient who needs support or is getting pushback from a tough decision. I hope I’m being helpful (and not the opposite).
It’s beyond time to stop throwing the baby out with the bathwater. Though preventing over-treatment is a well-intentioned campaign, it’s time NOW to examine the unintended consequences of this over-simplified movement and make a course correction. Stop harming DCIS patients just to promote a narrative.
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Marshmella,
You've precisely described my experience over the years. It's even worse in Europe. In Vienna, I had a famous breast surgeon ask me very rudely and directly, "Why did you have a mastectomy?" All I could muster was, "Uhhh, because my doctors told me to?"
My spot of DCIS about which I was told, "you'll have surgery and be able to get out of here," turned into idc and invasive components of dcis in all four quadrants with a positive sentinel ln. So I stayed for another 3 1/2 months.
As I sit here with a new diagnosis, 18 years later, I so wish I had had a double mastectomy.
I'm not telling anyone it's dcis. I know better.
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