Has anyone chose only a surgery option for DCIS?

Have you spoken with the MO or RO yet? What further treatments did they suggest? By what amount would those treatments reduce your chance of a recurrence?

Hi--I just sent this answer to another question, one about radiation, but I'll just copy it here. I too was pretty sure I just wanted the lumpectomy and be done but...

Have you thought about the DCIS oncotype test? I was in your situation-, everything looked like I was at very low risk for recurrence (small lesion, great margins, low Van Nuys score, MSK nomogram etc), and I had been dreading the idea of radiation. When I learned that there was an oncotype test for DCIS that uses a sample of the lumpectomy or biopsy to predict the possibility of local recurrence, and the possibility of it being invasive, I thought that that would confirm my decision to decline radiation. Much to my surprise the score came back in the high range for recurrence. Although I think everyone thought I was crazy, I went for radiation. I'm sure that many people would consider it over treatment, but I wanted to do everything possible right from the start to avoid a recurrence. I did the three week "Canadian protocol" and it went very smoothly. Very little discomfort and I have quite sensitive skin. The oncotype test is expensive, but insurance covered it and I think it might be worthwhile talking with your doctors about it as an extra element to help you make your decision.

Good luck with your appointments!

The pathology report may well have more information.

My DCIS 'story' - I had my diagnosis of DCIS back in July, 2008 (Seven years ago now) -- left breast -- after a digital mamm which showed a cluster of microcalcifications followed by a lumpectomy/surgical excision. Mine was a very small focus area of DCIS (1.6 mm) with nothing identified as comedo (path report indicated solid & cribriform) NO necrosis present, considered intermediate grade, and I had clear margins after the surgical excision/lumpectomy. I have not had any additional treatment besides my excisional biopsy/surgical excision in July '08 which got that tiny area of DCIS out. At follow up appt. a week after that biopsy, a medical oncologist spoke with me and told me that my tumor was so tiny he thought there was a miniscule chance it would cause me problems down the road and he did not recommend radiation therapy or hormonal therapy with their associated risks and side effects for my particular situation. He actually told me I was not to lose sleep over this or worry about it and he never expected to see me again. I also met with a radiation oncologist who wavered a bit on his recommendation, (seems I was sort of in a 'gray' area on rad treatments mainly because of my age at that time - 46 - and one margin although clear was quite 'close' at 1.3 mm) but ultimately told me after we had a long discussion that I get a 'pass'. Therefore, I decided against doing anything more except for close monitoring with mammograms and MRI's as needed.

I have had two additional biopsies since the initial diagnosis of that tiny area of DCIS. In summer of 2011 microcalc's were again found in that same left breast and I endured another excisional biopsy which indicated all benign conditions. In July 2012 a small grouping of microcalc's (less than ten) were again showing up in left breast on mamm and I had a stereotactic biopsy to remove the majority of them which also came back benign. They put a 'marker' in at the time of stereo biopsy and I have had follow up mamm's since then which thankfully continue to be 'stable' in that area. I am at the point now, seven years since first lumpectomy/surgical excision, of being back to annual checks. In fact, at my mamm last month the radiologist report was actually a BIRADS 1 and I'm "good" for another year. My DCIS was a very, very tiny area and not exactly as yours is, but I did not choose to do anything further.

KYphoto - I do not have regrets at not choosing to do more . . . as I mentioned in first post, I have had additional biopsies on that same breast, so do I think my "breast cancer journey" is completely done . . . who knows?  Do I feel 'stress' each year when mammogram time comes around again - sure.   I might have made a different choice if I had a larger area of concern, if I had comedo cells, or had not had a clear margin after biopsy- even if it was a "close" one.   No one knows what the future holds and I guess I just try to continue to be diligent with my annual mammograms, try to keep a healthy lifestyle - eating as "right" as I can, staying at a healthy weight (I am 5'6" and about 120-ish lbs) and putting it out of my mind for my mental health (until annual mamm weeks rolls around again - then I always forewarn my husband I will be "moody"!)  Good luck to you as you make your decision!

I had a lumpectomy only for intermediate grade. The choice of rads was left up to me, but the RO did say he wouldn't lose any sleep over me whatsoever if I didn't have them.

I get the jitters at the yearly check up time, but so far so good. I've still got the rads weapon up my sleeve if there is a next time. I am keeping everything crossed that there won't be a next time. x

Hi Kyphoto,

I hope you don't have to do any more biopsies. It does seem that those of us with DCIS are followed carefully, and there are many opportunities for more biopsies, which in the majority of cases turn up benign results. I had one on the other breast right after the first annual post dx mammo, and I'm being followed for calcs in the lumpectomy bed area. I will not be rushing to do any biopsies unless there is some compelling reason to do so--absolutely no more BIRADS3 biopsies (had one of those at the surgeon's urging), which they changed to BIRADS4 to justify it.

I hope the rads goes smoothly for you. I did the Canadian protocol (16 sessions) and it went without a hitch--other than the expected post treatment fatigue, which lasted a few weeks.

Best of luck!

Hi KYphoto,

I was diagnosed with DCIS in my left breast June 24, 2015. After my initial dx and speaking to the first breast surgeon and plastic surgeon, I decided along with my husband that I wanted a bilateral mastectomy.

I went for a 2nd opinion to a wonderful Dr. in NYC and after speaking with her I knew I made my mind up. She gave my husband and I more information on the MRI I had. There were spots in my right breast that was nothing now but could possibly be something in the future. She also agreed with my decision. I did not want to freak out every time I had a check up. I know there are no guarantees in life, but I know I would feel more at ease.

My surgery was on Aug. 17th and I am 9 days post op. It's pretty rough at the beginning but I have no doubt this was the right decision.

Last Sunday afternoon i received a call from my bs and she informed me that my lymph nodes were clear, it was solely DCIS and I will not be needing any treatment. I was thrilled!!

My suggest to you, research and do more research. I knew all my options. I went in knowing I made the right decision no regrets.

Good luck to you!!! My thoughts and prayers are with you.

Grace

I, too, am faced with deciding on radiation and tamoxifen for non invasive DCIS (grade 2) and after consulting with the radiologist and oncologist, still don't know what to do because essentially there are no studies on non treatment versus the standard (surgery, radiation, tamoxifen). So do I not and risk return of an invasive one or do I do and risk stroke, blood clots, heart attack, thickening of heart valves, arrhythmia, lung problems, skin changes that will affect future surgery and treatment options and basically being over treated.

Being that the oncologist basically said, well if it's back invasive you're dead (I hope he doesn't tell his invasive cancer patients that) while essentially saying why risk 5 years on a pill? While the radiologist is saying why not risk you won't be the 15 percent to get a return (based on a computer program printout that she couldn't even explain what factors are entered into the program to spit out the numbers), which said 15 percent chance of a return (or glass half full 85 percent I won't get a recurrence) and 6 percent chance it'll be invasive. Those might be great odds in Vegas, but not your life.

They don't call medicine a practice for nothing.

Here's what I took away, both saying don't take my treatment, but the oncologist saying, I wouldn't take tamoxifen, but I would get radiation (albeit with possible thickening of heart valves and possible future heart arrhythmia, which will be great with your new type 2 diabetes and possible high lipids).

So as I see it, damned if I do and damned if I don't BUT more damned if it comes back. Even if only calcification, I'll be biopsied again.and gave the same stuff again while more terrified.

Sooo, I've decided (almost) radiation and to forego the tamoxifen. I had a small location. No close family history (mother, sister). I'm more concerned that a reincision for a too close margin released the kracken, so to speak and there may be some minute little bugger in there, plus 15 chance is just too big - for me. Think 100 women and you being one of the 15.

My radiologist wanted me to call if I decided (I see her in two days), but I'm scheduled for a mammogram tomorrow to see if any calcification is left, that will definitely make it more definitive for me.

I have found that non invasive DCIS is the hardest to make decisions on. And there are no great studies to help us or our doctors.

Meh527, I'm shocked that your oncologist said that! Wow. That's so different from what my oncologist said to me at my last appointment when we were discussing the SEs I've experienced while taking Tamoxifen. He said that even if I can't continue to take it my chances of dying from breast cancer are so low he's confident that I won't. The survival rate for breast cancer is very high, and I think your oncologist was out of line.

I actually have a very close friend who had a lumpectomy and nothing else. Her DCIS was a grade 3 and her radiologist encouraged her to do that at least but ultimately let it be her decision and what she is comfortable doing. It has been over a year & she is still clear. She was also told that if something comes up in the future they can be extremely aggressive in treatment.

Coincidentally, my path report is almost a twin to hers, but I choose radiation & hormone therapy because I lost my sister to this.

In the end your decision is yours personally. Whatever you do will be the best for you at that particular time.

Thank you so much for the links. I'm trying to research as much as I can. The recent NYT article threw me for a loop.