My Story

It all began as an ordinary nightmare with the ring of the phone and my doctor’s voice at the other end of the line. However in all actuality, it was not a terrifying dream but the dark side of reality rearing it ugly head.

“Your pathology report is back and you have DCIS,” he explained, “ductal carcinoma in situ.”  By his serious tone, I knew this was not something I wanted to hear, but I did not realize at the time that, treatment wise, he might just as well have said, “You have invasive breast cancer.”

Later my nightmare continued, as I found myself meeting with a surgeon to discuss my upcoming surgery. I was told that I needed to have surgery as soon as possible. While this in itself was upsetting enough, it was not the worst news I received that day. Next the surgeon proceeded to tell me that my DCIS was quite scattered and he did not think he could get good cosmetic results with a lumpectomy. I was devastated.

As it so happened, a friend had recommended Dr. Susan Love’s book, The Breast Book, a classic must read for every breast cancer patient. In this book, Dr. Love clearly explains all aspects of the disease and all options for treatment without using scare tactics. One thing she recommends is to always ask for a second opinion, so I did.

I was referred to another surgeon. After waiting in her office for over ninety minutes, I must admit I wondered if she was really worth the wait. As it turned out, she most definitely was. When she said she could do a breast conserving lumpectomy that would leave only a small dent, I could have kissed her.

At that time, I again asked for a second opinion; this time a second pathology opinion. My surgeon gave me the choice of using either a local pathologist or Dr. Michael Lagios, a California doctor with a breast cancer consultation service that anyone can use. Since I knew from hours of research that Dr. Lagios was a world-renowned DCIS expert, I chose him and have been grateful ever since.

Dr. Lagios examined my pathology slides and sent us a written report. Then in a forty-five minute phone consult, he patiently explained everything and kindly answered all our questions. This however did not change my diagnosis of DCIS. Although he agreed that I would need surgery, he reassured me that since DCIS is a non-invasive cancer, I did not need to rush into anything. If I wanted to wait a few months for surgery, I could.

Even more important however was our conversation about radiation. As part of his thirty year commitment to DCIS patients, Dr. Lagios has been devising a tool that can be used to predict a woman’s chance of recurrence. He and Dr. Mel Silverstein have developed the Van Nuys Prognostic Index (VNPI). Using a scoring system based on the age of the patient, the size of her DCIS lesion, the grade of her DCIS and the size of the margins obtained during surgery, they are able to estimate a woman’s chance of recurrence with and without radiation.

Since radiation therapy has certain inherent dangers and side effects, if a woman’s risk of recurrence is small, there may be negligible benefit in administering radiation treatment. As a rule of thumb, radiation seems to cut the risk of recurrence by approximately 50 percent. Therefore, radiation may make sense if a patient has a 30 percent recurrence risk, but may not be of value if her recurrence risk is only 4 percent for example.

Using the Van Nuys Prognostic Index (VNPI), Dr. Lagios determined that if I could get adequate margins, my score on the VNPI would be low enough to place my recurrence risk at 4 percent. In that case, radiation would be of very little benefit to me. Since radiation treatment can only be given once in the same area, I wanted to save it, in case a more serious invasive cancer later appeared. All I had to do was get good clean margins when I had surgery. Little did I know how problematic that would be.

Although I was upset about needing surgery for a pre-invasive cancer like DCIS, my surgery seemed to go well. Recovery was less painful than expected and cosmetically I was pleased that there was only a small visible dent, in spite of the very wide excision that was done. After the surgery, my surgeon said that the tissue she had removed measured 1” x 2” x 3”, which seemed like a sizable chunk to me.

With the surgery behind me, hope for a return to “normal” life resurfaced; that is until I received a call from my surgeon’s nurse saying my margins were positive. Normally being positive is a positive thing. Not in this instance!  Being told that 5 out of 6 margins were positive and one was close, is not good at all. It meant that there was still DCIS right up to the edge of the removed tissue in five places. In other words the DCIS was more wide spread than originally thought and they were not able to remove it all with the surgery. This seemed to mean that my only option was again a mastectomy.

In my desperation, I recalled that during our earlier phone consult with Dr. Lagios the previous fall, he had kindly offered to be available if we ever had any other questions in the future. I again contacted his office.

It was New Year’s Eve day when the phone rang. I was relieved and delighted to hear Dr. Lagios’ voice on the other end of the line. I was not only amazed to get a call on a holiday from a doctor of Dr. Lagios’ stature, but equally incredulous at what he suggested as an alternative to a mastectomy. He suggested I go to Arkansas!  If it had come from anyone else, I might have thought it was a crazy idea and this was reflected in my voice when I repeated “Arkansas” in a questioning tone.

His reason for suggesting a trip to Arkansas was because he knew a doctor in Fayetteville, Dr. Steven Harms, who had invented a type of MRI called a RODEO MRI, dedicated solely to breast imaging. RODEO is an abbreviation for ROtating Delivery of Excitation Off-resonance. Because it does not depend on fat suppression, clarity is better and smaller lesions such as DCIS are better seen. The specific reason Dr. Lagios suggested I get a RODEO MRI was to try to detect the precise location of any residual DCIS. The idea being that I could then have a more tailored re-excision, rather than the somewhat blind excisions that are often done.

After a seven month struggle with my insurance company, we finally made the trip to Arkansas in July. Dr. Harms found two areas of concern and both were biopsied. Both were benign.The worst they could find was atypical hyperplaisa which is less serious than DCIS and typically requires no further surgery.

As thrilling as this was, it also raised some obvious questions. If both suspicious areas were benign, why had my post surgical pathology report shown residual DCIS in the margins? Could it be that the RODEO MRI had missed something? Could the DCIS have regressed in the seven months since surgery? Could the pathologists have been wrong?

Again, Dr. Lagios requested my pathology slides for review. We were vacationing at a cottage the day his written report arrived in the mail. I had to read it several times to be sure that I understood it. Was he really saying that he did not agree with the Grand Rapids pathologists? Again I was in state of shock. I felt the need to talk to him one more time, to be certain.

Apparently, a pathologist’s opinion can be quite subjective, with disagreement occurring as much as 25 percent of the time. In my case, Dr. Lagios explained that while he understood how the other pathologists might interpret my margins as containing DCIS, he did not. With good margins now, this gave me a score of 5 on the Van Nuys Prognostic Index (VNPI) and that meant that my recurrence risk was only 4 percent. Not only did I not need a mastectomy, but I could also safely omit radiation. I was thrilled!

In addition to this, Dr. Lagios also discussed the two most recent studies on tamoxifen for DCIS patients. They were the NSABP B-24 and UK-ANZ clinical trials. The first study, which showed a 2 – 5 percent recurrence decrease, was in his opinion, somewhat flawed, since it included patients with positive margins. The second study showed no benefit when tamoxifen was taken. With such minimal recurrence reduction, Dr. Lagios did not believe that taking tamoxifen would be beneficial to me.

His recommendation for follow up was that I have a mammogram and MRI in one year. After so many months of worry and struggle, my nightmare was finally over. I was both stunned and ecstatic. We celebrated by fully enjoying each and every day at the lake that summer.

With all the hysteria that surrounds a breast cancer diagnosis today, sometimes DCIS patients are over treated. Hopefully in the future we will see less one-size-fits-all treatment and more individualized treatment options. Until then, it would seem wise to always request a second opinion from a DCIS expert such as Dr. Lagios. Doing that saved me from not only an unnecessary mastectomy, but also from the side effects and harms of radiation and tamoxifen.

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Responses

  1. Thank you Sandie for sharing your story. I have been in such a dilemma as to what I want to do next. In a nutshell I had a lumpectomy in May for DCIS. I am having second thoughts if I should of done this now. I have put off the rads for almost 2 months now because I am so torn and confused on whether I should do the rads or not. My oncologist said I should at least have the consult so I will have that done Aug 1st. I do have high grade, multi focal, er+ pr+ and Her2+ and a total of 18 cm taken out.. My question to you is …can I consult with Dr. Lagios over the phone? I would love to do the RodeoMRI but do not know if my insurance will cover it. I have Kaiser here in CA. I’d appreciate any feedback you can give me. Thank you so much. Renee

    • Dear Renee,
      Yes, you can consult with Dr. Lagios over the phone. However, if Kaiser doesn’t cover out-of-network consults, you might end up paying for it yourself.

      If you do talk to Dr. Lagios, ask him where you can get a dedicated (used for breast imaging only) MRI. He says there are now other dedicated MRIS that are just as good as an Aurora RODEO MRI.

      What you need to know to make an informed decision re radiation is what your risk is without it and if you have it.

      For more info re DCIS please check out our website dcisredefined.org.

      Also feel free to email me at lovetennis60@aol.com if you have questions.

      Wishing you all the best at your Aug 1 appointment.
      Sandie


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