DCIS Treatment Plan: A New Standard of Care!
This thread is not intended to serve as guidance or provide any kind of recommendation for a woman trying to make a decision about DCIS treatment. I am not an expert on this topic, and I have only the most rudimentary grasp of the research being conducted on DCIS. This thread documents my recent visit to a comprehensive cancer care center, and it reports on my perception of what I was told. My postings refer only to my DCIS status, evaluation, and near-term treatment plan. I have no agenda to convince any woman to follow the course of treatment proposed by my medical team. Every woman is different, and DCIS comprises a spectrum of cellular malignancies and abnormalities. To my knowledge, there is not enough research data to provide conclusive recommendations for treating the broad array of conditions that fall under the DCIS umbrella.
Many of you kindly weighed in when I asked for help understanding my diagnosis and treatment options. I thought it was only fair to tell you what happened yesterday during a comprehensive evaluation of my case at a teaching hospital that has the distinction of being a comprehensive cancer care center. To protect my privacy, I am not going to name the medical facility. I ended up at this teaching hospital after asking a world famous cancer surgeon for help in finding a medical team that would tell me all of my treatment options. She located a remarkable team of cancer experts. To find a similar facility in your region, you can do an Internet search of comprehensive cancer care centers.
I flew back and forth to this treatment facility on a Mercy Flight flown by a volunteer pilot at no charge to me. I stayed at an American Cancer Society Hope Lodge free of charge, although I did write a small donation check in gratitude for the wonderful experience I had at the Hope Lodge. Both Mercy Flights and the ACS were integral in providing assistance to me, and I recommend ACS to any woman with a cancer diagnosis who needs assistance.
I took all of my images and path reports with me. The hospital had already sent my tissue slides out for a second opinion to a different pathologist. Yesterday morning, I checked in with radiology and I underwent mammograms and an ultrasound of my right breast and lymph nodes. The radiologist reviewed the new images and said they looked great. I had an excisional biopsy in September to remove abnormal cells in my right breast. I was diagnosed then with DCIS, Stage 0, Level 1. The radiologist said that the medical staff had reviewed the new path report, looked at all the images and path reports, and confirmed the diagnosis of non-invasive DCIS, Stage 0, Level 1.
After meeting with a cancer care nurse to go over my medical history and voice any concerns, I went to lunch. When I got finished it was time to meet with the world class medical team. I met first with the radiation oncologist. She said that she agreed with me that DCIS is being over-treated. I nearly fell over when she told me that the medical team felt the scientific evidence is now sufficient to predict with some confidence the risk of breast cancer recurrence for women with my diagnosis who have the low level, non- invasive DCIS cells excised without undergoing radiation or a masectomy. The rate of cancer recurrence in a Harvard study over 5 years for women who did nothing but have an excision of the malignant cells was roughly 12 percent. However, women in at least one other study, maybe two studies. who took tamoxifen after their surgical excision had the lowest cancer recurrence rate of all the women studied. I believe that well under six percent of the women who had the DCIS cells excised, and who had low level, non-invasive DCIS, and who also took tamoxifen had cancer recurrence, although I don't recall the exact percentage. I just know the rate of cancer recurrence in this group was low. The radiation oncologist said the standard of care is or has now changed for low level DCIS. The old model of lumpectomy and six weeks of radiation or a masectomy is being replaced by a new standard of care for early stage, low level, non-invasive DCIS. That standard of care will be removal of early stage malignant cells coupled with drug therapy, either Tamoxifen or aromatase inhibitors and deferred radiation.
The radiologist told me that with my diagnosis of low level, non-invasive DCIS that I was a good candidate for drug therapy to block estrogen from feeding breast cancer cell growth with deferred radiation after I had a second excision to remove the remaining DCIS cells. She discussed aromatase inhibitors and Tamoxifen as the options. In this scenario, I would take the drug therapy without radiation at this time. The risk of breast cancer recurrence with my diagnosis is very low if I take the tamoxifen. What she told me means I may never undergo six weeks of radiation or a mastectomy unless I get a new diagnosis of invasive cancer or some thing else changed dramatically to warrant these treatments. There is a risk of recurrence for all estrogen positive breast cancers, and I think the risk of cancer recurrence after surgical excision of DCIS cells at a very early stage coupled with drug therapy may be on par with the risk of recurrence from lumpectomy and six weeks of radiation or a mastectomy, but I don't have the exact numbers for the first option.
The radiation oncologist disappeared for a long time after we talked. When she came back, she was accompanied by the highly respected and very impressive cancer surgeon and a brilliant medical oncologist who specializes in drug interactions. First, the cancer surgeon offered me the option of genetic testing if I want it, an option I am not sure is necessary. Second, she said DCIS encompasses a number of malignant conditions, but agreed that all of the imaging studies and biopsies validate the diagnosis of early stage, low level, non-invasive DCIS. She said I need to have the rest of the DCIS cells surgically excised, but agreed that I could wait until anytime in January 2016. Third, she recommended that I start therapy with Tamoxifen immediately to stop the uptake of estrogen into the breast cancer cells allowing them to multiply. Fourth, she agreed that I am a good candidate for surgical excision to achieve clear margins coupled with Tamoxifen therapy with deferred radiation. Aromatase inhibitors are not recommended at this time because these cancer doctors do not want to risk my being in increased pain over and above the fibromyalgia pain that has disabled me. Some patients complain that aromatase inhibitors cause them to feel old and to experience arthritic pain.
I saw these doctors yesterday. I flew home from the teaching hospital this morning. After I got home, my brother went out to pick up my Tamoxifen. I took the first pill this afternoon. My mother took Tamoxifen for about three years and had no side effects. I am going back to the teaching hospital in January for a re-excision. Unless I get a new diagnosis, I am now headed for long-term Tamoxifen therapy with deferred radiation. My cancer is in the earliest stages, and I think that diet and exercise will also play a role in keeping the cancer from returning. There may be a new standard of care but it applies to cases that are caught very early. My breast cancer was discovered between mammograms. I had a normal set of mammograms in December 2014. DCIS is not palpable. Tell your friends and family members never to delay their mammograms. If they catch the cancer at its earliest stages, they may be able to forego the terrible stress and strain of lumpectomy and six weeks of radiation or a masectomy. In my case, I was on HRT, so the doctors say the female hormones on the drugs were feeding the tumor. It must have been growing rapidly to be detectable on imaging studies in August 2015 after a normal mammogram in December 2014.