Diagnosed with DCIS: How do I decide on treatment?

I was dx w/ extensive, multi-focal DCIS in 2005 at age 39 & the rec then was mastectomy w/ implant reconstruction (hormonal therapy didn't exist yet, at least for that). One radiologist thought it was high-grade, another intermediate grade.

The NCI had just come out in Nov 2005 w/ recs about overtreatment and I asked my Duke doc about why the radiologists could disagree over the type of grade and whether as a result my dx might be in doubt. I'm a trained scientist and so wanted to be privy to the research on my dx as well as areas of debate. I asked about whether i could just wait instead of turning my life upside down (single mom w/ highly successful career & finally back in doctoral program) for a surgery that could be postponed to at least a summer in a year or two. Nooooo--gotta have it. And also, he said he didn't get involved in "questioning the radiologists." I felt very invalidated. But I figured--trust the experts, for the first time in my life. Gotta let go and trust other people.

Well, two weeks after the mastectomy--with NO results given back about whether it was invasive, etc. and NO explanation by a nurse who seemed to dislike me from the outset for some reason--I finally get a call from the doc to the effect of, congrats! It was never DCIS after all. It was "florid hyperplasia." Like I was supposed to be HAPPY!

I was devastated. Some friends said, great! you don't have cancer! But that's like someone cutting off your arm and then saying, see! You didn't have gangrene after all! So when people couldn't understand my dismay, it appeared that I _wanted_ to be sick--probably because I had a very narcissistic Munchausen type mother who seemed envious that I had a dx in the first place, because she really liked being in a sick role and acted like the oxygen was being sucked out of the room if someone else was getting attention. She never even took me to the hospital or a drs appt once, or even took my kids to school during my surgery--"the traffic made her nervous," she said. But she managed to get lots of sympathy from her friends and co-workers. So I felt after the dx turned out to be "fake," in a sense, that I'd somehow falsely asked for others' compassion--made a claim on others' care when I shouldn't. And I'd actually been RIGHT to have pushed back at one of the world's top institutions. I was onto something. But somehow, I was in the wrong. No one could understand why having an unnecessary mastectomy when you'd actually pushed back could be upsetting. I was traumatized.

Why didn't the radiologists--when I specifically raised questions about potential other dx and about overtreatment--send my biopsy result to David Page at Vanderbilt BEFORE my breast was amputated and I lost so much blood that I'd suffer from anemia for the next 7 years until I finally had an iron infusion? My health never recovered since I have severe EDS and stressors like that accelerate problems w/ your connective tissue. My quality of life never recovered.

In response to Vanderbilt's florid hyperplasia dx, the original dx institution sent my tissue off to Mayo, who validated the original dx. My operating institution even had a case conference about it. I only found out accidentally. And one of the radiologists removed his dx from my file, trying to hide it--though a later oncologist realized this, when I brought it to her, and corrected it, and apologized to me.

You want feedback? I have to tell you that truly, my life was never the same.

Today, w/ all of my research into it, I'm pretty confident that had that DCIS not been seen because of another benign lump that led me to the mammogram at 39 in the first place--that it would have turned into invasive breast cancer, at some point. But what's important is that I could have WAITED and CONTROLLED THE TIMING of my treatment-- I could have had mammograms or MRIs every six months or year and then made an informed, planned decision.

And, low grade DCIS CAN involute. And the classification of what's florid ductal hyperplasia, or atypical ductal hyperplasia, or low to high grade DCIS w/ necrosis--that can be debatable too. It's getting better with machine learning, but still, these are human-determined diagnostic classifications at the "stage zero" point. Path-confirmed ADH and DCIS are by definition not an immediate crisis.

Those who say, well, there _might_ be microinvasions--well yes, but that's the case with all of us all the time. Most BC diagnoses as I understand it are of "interval cancers." There's always risk, whether or not you've got a tentative ADH diagnosis. With that mentality, no treatment is ever enough. There could always be _more_.

We have to ask, do we want to get on this ferris wheel of the however well-meaning breast cancer treatment industry, or can we step back and get perspective? The point of treatment is to live a quality life--but what if such an obsession with treatment, to the point of prevention, starts to undermine the quality of that life? Especially w/ adjuvant treatments that can cause a lot of systemic misery?

I respect people's decisions to proactively just cut them off, especially w/ the wonderful reconstructive options today--because they just don't want to deal w/ the anxiety anymore. I get it. Just be sure you have a thorough understanding of your risk and that _you_ are the one in the driver's seat. As long as you're fully informed of all points of view and then are making the decision that supports your values, then you _are_ living your best life.

But w/ stage zero conditions, I highly recommend stepping back, self-education, prayer & meditation, & service. Get away from the whole edifice to ensure you're not being carried along in a wave of unintended overtreatment.

God bless.

@pinkybabar1962 you were positive for BRCA right? That would probably account for the suggested double mastectomy (in addition to your actual cancer). Some women with BRCA had those surgeries preventatively.

Can you help me to find best doctor who can help me in my situation.my surgery was done 25 th April still not decided what is further treatment ?my surgeon said according to my genetic report go for double mastectomy I am confused now can’t make decision.

@pinkybarr your score is just over the line:

Women over the age of 50
For women over 50:

A score of 0–25 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 26 or above means you’re likely to benefit from having chemotherapy in addition to hormone therapy
Women aged 50 or younger
For women aged 50 or under:

A score of 0–15 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 16 or above means your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy

I am not a doc and cannot advise. My cousin had a score of 35 and did three out of four chemo sessions then stopped. I think she got a 3% reduction in risk each time.

One of oncologist said for chemo but I am waiting another opinion from north western medicine hospital oncologist.
Please advise me what are other options?

That's not high. Hmmm. I wonder what increased your Oncotype. Though I believe for post-menopausal your score still doesn't mean chemo, is that right?

Ki-67 Percentage of Positive Nuclei: 15 %

In 2012 was grade III. And yes, I had reconstructive surgery with implants. It has been a year and two months and I feel fine. Cancer is a lottery, Stay positive and strong.

@pinkybabar1962 do you have a high ki67%? Exact Science, the company making the Oncotype, might be able to explain your Oncotype, or perhaps your doctor.
What does your Oncotype report suggest as treatment?

Has anyone experienced large size slightly painful veins under their post lumpectomy breast that are visible under the skin and palpable- running from under breast to abdomen