If you had DCIS, with clear nodes did you get rads?

Jules - (((hugs))))

I had DCIS - grade 2 w/necrosis. I had rads. I was in a gray area  the tumor board was split 50/50 - my rad onc didn't think I needed it, but we went ahead with a 2nd opinion with a colleague of his. He also sent my case info to a doctor who has done a lot of research on DCIS and rads. 

The 2nd doctor told me that my best chance for never, ever seeing cancer again was to fight it hard the first time. No saving it for the next time. We don't want a next time. The researcher said hell, yes, get the rads no doubt about it. My rad onc (first dr) set everything up & I started rads 2 years ago last week.

Radiation was not an easy decision. There are risks and there are benefits. I believe I benefitted and since a year later I was dx with LCIS and ALH, I think the decison was the right one. (My risk of BC is higher now).  I'm on Tamoxifen and I hope that takes care of it for me.

I did not have a SNB as my surgeon doesn't routinely do them for DCIS patients with lumpectomies and no sign of invasive.

Have you had a 2nd opinion? Maybe it would help ---- getting another dr's opinion.

take care...Pam

I had clear margins, and no nodes were removed as my very experienced surgeon said this was not necessary. I sought out 3 opinions and all said radiation was the "standard of care" and my best shot at not having a recurrence or invasive breast cancer. As Jules says, it was not an easy decision and I don't think I will ever be completely convinced. But with a high grade DCIS and estrogen negative, meaning that I would not get the extra boost of prevention that tamoxifen would offer, I am on my radiation "adventure". One good thing is that my margins were so good the radiation oncologist is prescribing only 28 treatments, rather than the usual 33 - and no "boosts". If only we knew which DCIS will become invasive and which will not!

PSK07 did a wonderful job of reminding me why I chose lumpectomy w/ rads iso mastectomy. 

 It seems that it is not the norm for women diagnosed with DCIS who have lumpectomies to even get a snb because dcis by definition is not invasive. It is the standard of care for women with DCIS who have lumpectomies to be offered radiation. However, http://www.breastdiseases.com/dcispath.htm  explains the van nuys prognostic indicator. Dr. Mel Silverstein was considered radical when he first posed the concept that not all women with a lumpectomy for dcis should get radiation.  If the scoring is now appearing on some women's path reports,(see recent threads on rads/dcis) I guess it is becoming more mainstream. It certainly provided guidance and peace of mind for me. I scored 8 - so based on age, margin, size of tumor and grade/type, clearly fell in the lumpectomy/rads group.  This is just a tool however, we all have our own issues and level of comfort regarding choosing more or less aggressive treatment.

Julie E

I had DCIS with one node removed. Grade 2. No rads here. I did have a bilateral. Left one prophylactic, right with DCIS that was proliferated throughout the breast. Good luck with whatever you do!

It is the standard of care for women with DCIS who have lumpectomies to be offered radiation. However, http://www.breastdiseases.com/dcispath.htm explains the van nuys prognostic indicator. Dr. Mel Silverstein was considered radical when he first posed the concept that not all women with a lumpectomy for dcis should get radiation.

I only had a lumpetomy, no RADS, when I had DCIS because my score on the Van Nuys Prognostic Index was low enough to only have a 3 percent recurrence rate. Not everyone needs to have radiation if they get good margins.  

Wow, Jelson and swalters, this is great to know -- thank you for posting that! I'm going to ask my doctor about this. I would rather take my chances without rads because of my hopes to have a baby... I had no idea there was even a possibility that rads after lumpectomy might not be required. Thanks for sharing that!

I was 37 at dx in 2008, DCIS mammie was clear at age 36 and a bunch of DCIS at 37.  Lumpectomy with SNB (clear) - elected for a bi-later reduction at the same time due to my larger size and familial history (although BRCA neg - 4 women maternal side incl mom).  I was told SOC was lumpectomy, SNB and rads - and went with it.  RADS weren't a problem for me at all.  I used to say there was an inconvenience with it every day for 7 weeks, but my dear friend Maria (since passed from BC) told me it is NEVER an inconvenience to live.  I look at my tatts like badges of courage and actually look for them when I am feeling down.  My 6 year old thinks they made my sickies go away.

This Saturday is one year since completion of rads - I wouldn't change a thing.  My problem now is Tamoxifen and contemplating a complete hysterectomy.

You need to do what you feel comfortable with - a 2nd opinion cannot hurt if you have concerns.  I am fine with my decision - you need to make yours.  Think of it as an insurance policy.  Gentle hugs!