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Aug 18, 2012 08:47 PM SJW1 wrote:
In 2007, when I was diagnosed with DCIS, I only had one surgeon tell me I needed a mastectomy. Because I thought that was over treatment for a non-invasive cancer that some call a pre-cancer, I got a 2nd opinion and was told a lumpectomy would work for me just as well.
Because DCIS is non-invasive, you can take your time, months if you like, to carefully weigh your options, talk to the experts and figure out what you would be comfortable with.
One option you didn't mention is taking tamoxifen before having surgery. Dr. Shelley Hwang at UCSF is doing trials with this in the hopes that someday this may replace surgery for some DCIS patients. See: www.ucsf.edu/news/2009/03/8165...
Also there is a new technique available now that some women are opting for instead of reconstruction after a skin and nipple sparing mastectomy or extensive lumpectomy. Suzanne Somers was the first in the US to use her own stem cells to regrow breast tissue. According to another DCIS survivor I know, this is now available to the average woman with good insurance. See: http://www.lef.org/magazine/mag2011/dec2011_Suzanne-Somers-Uses-Stem-Cell-Therapy-Breast-Rejuvenation_01.htm
Because of my experience, I also think it is a good idea to get a 2nd pathology opinion before doing anything drastic. Pathologists miss things and don't agree up to 20 percent of the time. I was told I didn't get good margins after my lumpectomy and they were again recommending a mastectomy. However, this all changed when I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. He disagreed with my pathologists and even lowered the grade of my DCIS.
He also calculated my risk of recurrence without radiation, using the Van Nuys Prognostic Index, as only 4 percent. Because you can only use radiation once in the same area, I opted out of it. The small benefit I would get was less for me than the harms. If you opt for a lumpectomy, you will also want to know your own personal risk without radiation, so you will know if it is beneficial to you.
Although a DCIS diagnosis is devastating, no matter what treatments you choose, you will survive this. In addition to all the standard of care treatments, you can also decrease your odds of a recurrence through various things like diet, exercise, supplements, hormone balance etc.
Please feel free to send me a private message if you have questions. You can also read more about my story at: dciswithoutrads.com/
Wishing you all the best no matter what you decide.
Dx 6/22/2007, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+