Overkill??

rn4babies · July 2011

I recently have been diagnosed with 4mm DCIS,Grade 3, solid and cribriform types, with focal suggestion of comedo necrosis. I also have a very strong family hx. My surgeon recommended lumpectomy with radiation and tamoxifen. From what I've been reading on this website, I feel this may be overkill. It's my understanding that DCIS under 5mm doesn't need radiation. Does the Grade 3 change this? Of course I'm not keen on the Tamoxifen either. It seems as if lumpectomy should be enough. Any input on this would be greatly appreciated.

cycle-path · July 2011

rn, you might want to look at the VNPI Worksheet here. The question of what's "overkill" is believed to depend on a variety of factors other than size and grade. Hope this helps.

rn4babies · July 2011

Thank you so much for this link. It looks like I may be a "7" because of the high nuclear grade. I don't know the widest thinnest margin so I gave it the lowest score. I guess the Grade must be the deciding factor for RADS in my case. Thank you so much.

stage1 · July 2011

rn This was the hardest decision I have ever struggled with, even tho I am IDC, I was mostly DCIS, with just a tiny invasion. I went back and forth on my decision for 5 weeks and finally decided to do the rads. I was so on the fence the whole time. It seems like even if I was DCIS only, they would have wanted me to do the rads. The fact that it was grade 3 convinced me. I still do not know how fast grade 3 spreads as opposed to grade 1 or 2. The MO and the RO and the surgeon never even mentioned grade. I looked it up myself. I had the comedo kind..I took the rads, no simple decision, but recurrence, is nothing to fool with Cry

BeckySharp · July 2011

rn4babies: I was Grade 3 DCIS. I had mammosite radiation since my two nodes removed were clear. You may want to look into that. Radiation was recommended because of the Grade 3. Becky

shannonW · July 2011

The way my breast radiologist described it...the grade 3 in "young or pre-menopausal" women is a matter of not if but when it will turn into invasive cancer IF not removed. The general course of treatment from what I've read is lumpectomy,rads and tamo or mastectomy(which is tx I choose as my DCIS was completely thruout my R breast, grade 2 and 3). When going thru my tx no one discussed with me my VNPI(not sure why as I only saw the onco once to go over patho). Not sure how much it's used around here but by my own calculations I was a 9. Anything under 10 is lowest risk of reoccurence is my understanding. Some do totally fine on tamo with minimal SE's and others have a harder time with SE's.

rn4babies · July 2011

My surgeon does not recommend mammosite. He said long term results have not been proven and that all docs may eventually go back to traditional rads for that reason. Also, I'd have to travel 2 hrs away for it and my insurance won't pay for it. I'm stuck with traditional regardless of what his opinion is. It would be alot better, I know.

3monstmama · August 2011

I was also grade 3 with comedo and necrosis and I also did zaps ( the traditional type) and tamoxifen. I was surprised by the lack of problems I had with rads, given all the possibilities.

I have to say, I would not take getting a sentinel node biopsy so cavalierly. After reading how any tampering with the lymph system could lead to problems, I was far more worried about a sentinel node biopsy. From my reading it seemed to me to be one of those things that they can't really predict and something to be avoided if at all possible. I thought that absent other signs of issues, sentinel node biopsy with DCIS was no longer recommended?

cycle-path · August 2011

3mons, SNB is still recommended for diagnostic purposes. What's no longer recommended is axillary node dissection.

3monstmama · August 2011

cycle-path, I am aware of the situation with axillary node dissection.

But according to what I have read, sentinel node biopsies remain controversial with DCIS. Its definitely something to be done if they find micro invasion but in other cirucmstances, its not so clear-cut. If you don't have micro invasion then its still DCIS and there is no reason to check the nodes because with DCIS, its all contained.

Beesie? are you listening?

cycle-path · August 2011

Beesie has sometimes been attacked and driven away by a small handful of zealots who don't agree with her. She's been gone for a couple of weeks. Here's something she posted on that subject a little while back.

"- Checking the lymph nodes, i.e. a sentinel node biopsy, is not required for those who have pure DCIS. However women who have high grade DCIS have a reasonable risk that some invasive cancer might be found in the final pathology; because of this, often an SNB will be recommended (note that it is current practice to check the nodes if any amount of invasive cancer is found). This is particularly true for women having a mastectomy because an SNB cannot effectively be done after a mastectomy. Sometimes doctors will recommend an SNB to women with high grade DCIS who are having a lumpectomy. Current treatment guidelines suggest that women with DCIS who have a low risk that invasive cancer may be found (i.e those who appear to have a small amount of lower grade DCIS), do not require an SNB even if they are having a mastectomy."

dancetrancer · August 2011

My BS told me that if I end up only having DCIS that I should not need the SNB b/c as cycle-path stated, DCIS does not spread. (Currently awaiting more tests to determine if there is an underlying invasive cancer.)

mom3band1g · August 2011

I believe SNB is not done with a lumpectomy unless IDC is found. With DCIS that is large and requiring a mast a SNB is reccommended. Once a mast is done you can't go back and do the SNB if it turns out IDC is found. Does that make sense?

Beesie- I wish you would come back!

RetiredLibby · August 2011

I am currently having a recurrence of high-grade DCIS 4 years after a lumpectomy, re-excision, rads and tamox. I'm having a BMX (right prophy) and I am, of course, having an SNB since it is a recurrence.

L

DeeLJ · August 2011

This is an interesting thread about the SNB. My doc didn't plan to do one during my mastectomy because the area of DCIS was removed during my lumpectomy but I do remember (in a bit of post-anesthesia and dilaudid fog) him coming in and saying that they got a node anyway. In my patho report it states that there was one lymph node without evidence of metastatic cancer, so does this mean he did one? I go to my followup appt soon so I will ask anyway but interesting to think about.

3monstmama · August 2011

I think cycle-path and I are saying the same thing. With pure DCIS, there is no way that there would be anything in the Sentinel Node because everything is contained so no need for biopsy. But if ---because of the size of the DCIS-- you go for a mastectomy then they have to do the SN biopsy because part of what is removed may contain the SN.

If all you are doing is a lumpectomy and they feel its just DCIS and that is confirmed by the pathologist while they are in, then no need for a SN biopsy.

If you are screwed with a reoccurance ((HappyLibby)), Cry then they do more because the concern is that there may be more that they haven't found.

I had no SN biopsy. I am fine with that.

texastoots · August 2011

Just wanted to comment regarding your node. I had lumpectomy on 7/28/11 and when I went to the bs last week for the path results and 1 week check up she said they had actually gotten a node in the breast tissue she removed. Seems there are some of us that actually have lymph nodes in the breast tissue itself. My dil asked because she thought it was freaky and the bs said that it was, kind of, haha. Maybe that's what happened with you. My bs said she would not do snb with dcis but would have if she had to redo for margins. Which luckily she didn't. I'm kind of glad I had the freaky thing happening. Makes me feel better about the path dx being more complete.

dancetrancer · August 2011

Mom3 that makes perfect sense and is exactly what my surgeon told me. If I only need a lumpectomy, they won't do the SNB (they'll do a path and if more than DCIS is found, THEN they'll do the SNB). However, if I have to have a mast b/c of widespread DCIS (likely due to more calc's being found last week), then they have to do the SNB first b/c they need the blood flow from the breast to do the mapping to the lymph nodes. Once you have a mast they can't do an SNB b/c there is no way to map - the breast is gone. So even if my mast path came back as DCIS only, they still wouldn't have had any way to know that ahead of time for sure, since IDC could be lingering underneath. So that is why they must do the SNB if you are having a mast, even it is only for DCIS. OK, that was really, really convoluted and wordy...hope it makes sense!

SaraAust · August 2011

Hi I'm just reading through this post as I am trying to decide whether or not to do tamoxifen (as other topic sites may have noticed). I went in for a NSM 04/28/11 as I had a large mass on my left side US showed ADH it turned out to be 11cm DCIS with an invasive Muscinous Carcinoma measuring 1.2cm. My surgeon did not do the SNB although he ran the dye through in preperation but b/c he couldn't reach the node without making another incision he decided not to thinking that I didn't have cancer subsequently I had to go back in and have the SNB 2 weeks later with a technique that they apparently use in the UK as routine to track the node and that is through the skin so they don't need the breast tissue to map for the nodes. I was extrememly nervous with the accuracy of this but I was told that this is the way the UK do all their tracking. So there are ways that they can check for the SN if the breast has been removed. I just hope it is in fact accurate. This other technique also left a permenant stain or "tattoo" on my skin which apparently has only ever happened to my BS once before...has anyone else experienced this???

Now going back to my reason for reading this, I was also told that I don't need to have any further treatment after the NSM b/c I am low risk due to the size of my tumor but reading the DCIS posts I see that there are so many of you on tamoxifen or other treatments with smaller DCIS than I have. I'm wondering why my BS is not recommending anything for me when I have both...I am seeing him next week after I have my MRI on Fri (at my request) and I will go into all this with him then...but I'm so glad that this forum exists so that we can be informed more on what others are doing and how it is working for them etc. I have learned so much from so many people here that I'm sure my BS prepares himself for my long list of questions whenever I see him. Thanks to everyone for all your experiences and knowledge...

SaraAust · August 2011

Hi I'm just reading through this post as I am trying to decide whether or not to do tamoxifen (as other topic sites may have noticed). I went in for a NSM 04/28/11 as I had a large mass on my left side US showed ADH it turned out to be 11cm DCIS with an invasive Muscinous Carcinoma measuring 1.2cm. My surgeon did not do the SNB although he ran the dye through in preperation but b/c he couldn't reach the node without making another incision he decided not to thinking that I didn't have cancer subsequently I had to go back in and have the SNB 2 weeks later with a technique that they apparently use in the UK as routine to track the node and that is through the skin so they don't need the breast tissue to map for the nodes. I was extrememly nervous with the accuracy of this but I was told that this is the way the UK do all their tracking. So there are ways that they can check for the SN if the breast has been removed. I just hope it is in fact accurate. This other technique also left a permenant stain or "tattoo" on my skin which apparently has only ever happened to my BS once before...has anyone else experienced this???

Now going back to my reason for reading this, I was also told that I don't need to have any further treatment after the NSM b/c I am low risk due to the size of my tumor but reading the DCIS posts I see that there are so many of you on tamoxifen or other treatments with smaller DCIS than I have. I'm wondering why my BS is not recommending anything for me when I have both...I am seeing him next week after I have my MRI on Fri (at my request) and I will go into all this with him then...but I'm so glad that this forum exists so that we can be informed more on what others are doing and how it is working for them etc. I have learned so much from so many people here that I'm sure my BS prepares himself for my long list of questions whenever I see him. Thanks to everyone for all your experiences and knowledge...

dancetrancer · August 2011

Unsure, that is really quite interesting that they were able to do a SNB after your mx. I just tried to research the accuracy and found this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909950/

Karam et al. recently reported on 10-year experience from the Memorial Sloan Kettering Cancer Center with attempts at SLN biopsy in the setting of a previous mastectomy [21]. Of the 20 patients in whom it was attempted, 13 (65%) had successful SLN identification in the axilla, and nearly a 90% identification rate was observed in those treated previously with mastectomy and less than full axillary node dissection. Of the 13 patients with successful node identification, two were found to have metastasis to the SLN. Full axillary dissection was not performed on all patients, so false negative rates are not known; however, no patient had isolated axillary recurrences during follow up.

So it sounds like they had some accuracy with the test, although it was a small study. Hope that helps. BTW, the case study this was quoted from kinda freaked me out. The pt had DCIS, mx, but the cancer returned as invasive in her skin. She did not take tamoxifen. I'm still a newbie here, and need to do my own tamox research, but this case study definitely gave me pause. (Even though I know you shouldn't base decisions on one case.)

Overkill??

Comments

Categories