On 1/31/13 I found a lump and the next day had a mammogram and ultrasound that showed no malignancy. However, my intuition told me I was a victim of a false negative mammogram and ultrasound. Even though two surgeons said to come back in 3-6 months, I did not wait. I found a surgeon who removed the lump on 2/28/13 via lumpectomy and got clear” margins, although he was surprised to find it was DCIS, stage 0 breast cancer.
Post surgery, I was ushered like a scared sheep to a “standard of care” radiation oncologist, but refused radiation therapy. I then was sent to a medical oncologist for tamoxifen, which I took, but was sick on the couch until I quit taking it 10 days later. I knew there had to be something better.
What radiation oncologists fail to mention is that an irradiated breast cannot be operated on again. Should something come up later, it would be instant mastectomy. In addition, they do not offer partial breast radiation (brachytherapy) as an option. Instead, they are quick to suggest the grueling 6-8 week radiation treatments as “standard of care.”
It was through hearing Sandie’s story that I learned of Dr. Lagios and his second opinion services. My pathology reports were sent to him. He gave me his interpretative report and I spoke to him. His suggestion was to have a RODEO MRI and re-excision. An MRI guided biopsy was performed in June, 2013 and a re-excision on 6/20/13. He reviewed that as well.
The pathology showed that after 4 months the DCIS was no longer confined to the one lumpectomy site and I now also had LCIS, which put me at higher risk for getting invasive breast cancer. Even after this re-excision, DCIS, which could eventually become invasive, remained. Although we tried to save my breast for many months, even after two surgeries my score on the Van Nuys Prognostic Index was still an 8. Since I was small breasted with not much more to work with, I decided to end the worry by having a prophylactic simple mastectomy on 7/2/13. Had Dr. Lagios not had my “back,” I am not sure if the margins would have been clear even after a mastectomy, since pathologists differ on what a “clear” margin is.
The word “carcinoma” in DCIS (ductal carcinoma in situ) was something I could not live with in my body much longer…watching for it to turn into a staged cancer. The word “in situ” means in place. However, it does not always stay in place.
Because of my mastectomy, I was able to skip radiation and taking harmful meds. Also due to my working out every day, my recovery was fast. In fact I was driving in less than a week and will be scuba diving again soon. My schedule now is having MRI/mammograms every six month for 2-3 years.
Fast forward to 2015. Since in 2013 my surgeon had performed a skin sparing simple mastectomy with reconstruction, I now decided to have delayed reconstruction. On June 19, I had surgery to insert a tissue expander, later followed by 4 fills to achieve my desired size. The final step was another surgery on August 13 to replace the tissue expander with an implant and breast lift, while also augmenting the other breast for symmetry.
What I should have done when I found I had DCIS, is have a bi-lateral mastectomy to not have to worry about any more mammograms and had immediate reconstruction at the time of that surgery. Delayed reconstruction is much harder.
However, I am happy with my final results. My reconstruction is such that while I may be 62 now, parts of me look 22. It is amazing what they can do to put us back together again…better than before.
No doubt in my mind, DCIS is not anything to mess with – trust your intuition, research and get second opinions always. We must all do what is best for ourselves.