Close margins after bilateral mastectomy for DCIS--Radiation?

VT_whitley · April 2015

Hi, All. I had bilateral mastectomy to treat bilateral DCIS earlier this month. Final pathology showed no invasive cancer or lymph node involvement but the margin in the left breast was very thin--only 0.1 cm. Plus it was grade 3 and had some comedo and necrosis. I am BRCA- but have family history of BC. I'm 40. Right now I am in discussion with oncologist, breast surgeon, and radiologist about the possibility of doing some adjuvant therapy--either tamoxifen or radiation. I am leaning toward radiation since I am wary of the side effects of tamoxifen, and, from what I understand, radiation would be more effective at reducing any remaining risk. Have others been in this situation? Do you have any advice about which path to pursue? I am about 2.5 weeks into the expansion process for reconstruction. So the radiation would happen during this process (I assume).

thanks very much.

Nanam · April 2015

I haven't posted on here for a long time but I had a unilateral mastectomy in 2012. My pathology also showed no invasive cancer but grade 3 DCIS with a positive margin on the chest wall. I was advised to have radiation and I did. I had it with the expander in and had a few issues with my skin that were treated at the time. None of the real tiredness that many talk of. I did have to have the implant replaced at one point due to a seroma developing and healing problems that are not uncommon after radiation. However, all is well now. I would listen to your doctors and make sure the PS has done implants on a radiated breast before. Good luck!

percy4 · April 2015

Hi Dear - I cannot speak to mastectomy, as I had a lumpectomy. And my DCIS was low and intermediate grade. Still; in the center of that, I had a non-aggressive microinvasion. I consulted with Dr. Michael Lagios, the DCIS expert, and while he often flies in the face of convention about rads, he was clear that I needed radiation, in my case. Not because of the micro, but because of the narrow margins (smallest was .05 mm) with the DCIS. I researched here and everywhere, and though I didn't want rads, I could not get away from the fact that with narrow margins, it was not in my best interest to not do rads, so I did. Yes; I am concerned about possible short and long-term side effects from rads, but I figured I had to treat the cancer I have, now, with the most effective treatments they have, now, rather than worry about future possibilities.

MotherofFour · May 2015

Hi- I was dx back in Feb with a very similar situation (DCIS/Grade 3 w/comedo necrosis/multifocal/Paget's disease). Had my surgery in April. . .My lymph nodes came back clear and the surgeon said no rad/chemo needed but my oncologist said today I needed radiation. This is consistent with what I've read on this site (thanks Beesie for including this in the summary). There was a less than 1mm margin to my chest wall. My oncologist said "I will sleep at night if you decide not to take tamoxifen (though he wants to take that too!), but I will lose sleep if you don't have radiation). I am disappointed but want to minimize the risk esp. since my youngest is a toddler. One of my friend's is battling bc for the 3rd time. . .Her first dx was at 24 yrs old, 2nd at 40 and 3rd at 42ish. The 3rd time they said it was a recurrence of her first breast cancer. Even though she had a double mastectomy (the 2nd time), the first cancer apparently was left over in her chest wall and grew a small tumor next to an artery deep inside her chest. . .they decided it was too difficult to remove surgically so she ended up doing a year of chemo. So, I guess this is why I will have to do radiation.

But this is my question. . . is it really necessary to do 5 weeks of radiation for a possible DCIS micro invasion? I asked my oncologist and he said that is an excellent question. . .for a radiologist! Are there any studies on why 5 weeks of radiation is necessary? It seems like it would be applying the same standard treatment to a very different disease.

VT_whitley · May 2015

Hi Mother of Four,

I (the original poster) ended up getting two second opinions. I sent my slides and images to Dr. Lagois, a DCIS expert in CA who runs a consultation service for women who want second opinions about pathology and about treatment. My close margin was anterior (not the chest wall), and he very clearly recommended NO additional therapy, radiation or hormone. If you email me, I can give the studies he cited. Then, I went to Duke Medical Center and consulted with a medical oncologist, a surgical oncologist, and a radiation oncologist. All unanimously agreed that I did not need radiation therapy. My doctors here at home were more on the fence and would have done either (radiation or tamoxifen) if I had given them the go ahead. Perhaps your situation is different because the location of your close margin is posterior (chest wall), but if I were you I would get a second opinion about the duration of the radiation therapy. When I talked to my hometown radiation oncologist, he was ready to set me up with 33 treatments--standard regimen. I am glad that I got second (and third) opinions. Good luck.

april485 · May 2015

I agree with above poster. Dr. Lagios is the best and worth every dime of out of pocket if your insurance won't cover. He wrote the book on DCIS and the over-trmt of this type of BC. I opted to have rads but think he was worth the money.

MotherofFour · June 2015

Thank you both for the reply. . .Yes, if you could email me the studies that would be fantastic! I just saw the radiation oncologist yesterday and he said he would lean toward not doing it. But he admitted his research was extremely limited (like a couple of hours and asking his partner) and the studies he pulled were from 2008 and even that study was 50/50. Just pulled up an NHS study (invasive bc) published in 2014 but the data was from the late 80's-mid 90's (long term follow-up) and I was surprised it said the 50% reduction in recurrence from rads was only if it was in the nodes. . .my nodes were clear and it's high grade DCIS. But it also said they did nodes differently back then. He - the radiation oncologist- said there just isn't a lot of data for grade3 DCIS with mastectomy- "but I won't lose my license if I treat you"! He said if he did a poll among rad oncologists it would prob come out 50/50. I am still waiting for my oncotype dx results- should get to see those today- which will prob help me. This all has def made it more confusing as my oncologist said "I won't lose sleep if you decide not to take tamoxifen, I will lose sleep if you don't do radiation". He did say it was because it was deep, that he was recommending rads, that if it was 'outside' it would be a harder decision.

calidancer · June 2015

I just had a SNSUMX for DCIS June 8th. 6cm grade 2/3 with necrosis, no invasion, 0/1 nodes. Negative margins, one close margin on the chest wall. My BS was ready to say, I'll see you in 6 months... But I asked about the chest wall and radiation. She didn't seem to think it was necessary but didn't even refer me to an oncologist. She is going to present my case to the tumor board next week. I am hoping not to do RADS, it was a big factor in my decision to do a MX over a LX. I'm 43 and I don't want it to ruin my reconstruction and I have extremely sensitive skin and have had many chest x-rays in my lifetime already due to Legionnaires disease at 12 . Though if it is recommended I will have a hard time not complying.

I'm frustrated because I feel like I can't even be happy with the path report even with the good news of no invasion. The uncertainty is so anxiety provoking. Maybe that's my lesson from this....

calidancer · July 2015

Just in case anyone clicks here, tumor board says no Rads. Matches up with my research including Dr. Lagios.

On to a MO appointment to discuss Tamoxifen to protect the healthy breast.

MotherofFour · July 2015

Hi-

Well, I had two oncologists recommend rads due to my close margin to the chest wall which was .22mm i.e. microscopic- though they both said there just isn't enough data on this situation and it truly is my decision. In the end, the 7 percent recurrence rate they showed me was for margins of 1mm-10mm and mine was less. . .2/10 of a mm i.e. microscopic. Also, they did an oncotype dx test which came up as 65. . .higher than I would like even though it is too soon for short/long term studies for DCIS. My particular cancer cells have a 25 percent chance of recurrence based on invasive cancer cell genes with women who had a 2.5 cm margin and were on tamoxifen. Apparently, when/if it does recur in the chest wall there are no surgical options, which was another factor. It sucks having to make the decision on anecdotal red flags but oh well. So I just started this week. . .25 treatments total. . .no 'boosts'.

My question is this. . .they are putting a brass mesh over my Foob. They said it bursts radiation to the skin in case there is cancer on the skin. I am confused as to why this is necessary as the margin was posterior toward my chest wall. . .not the skin, in which case I could have had more surgery. I am going to ask my doctor on Tuesday but I was wondering if anyone else has had this mesh or a gel cap put over your chest wall during rads.

Jelson · July 2015

MotherofFour - maybe you should post your question about the brass mesh or gel cap on the general radiation board since it is not an issue restricted to DCIS - more people who might know about it might see it and be able to respond. Also, you might try the search function to see if these have been discussed before.

MotherofFour · July 2015

I have, no one seems to know exactly. . .except it is called a bolus and some people get it every other day instead of every day. There seems to be a lot of variation in rad treatments btw oncologists.

TB90 · July 2015

Hello Motherofour: I too had a mx and then radiation with a bolus. You are correct in that not all RO's use this method. It was explained to me that given there is no flesh between the radiation and the chest wall (like a breast would provide), the bolus is to trick the radiation into thinking there is flesh so that the radiation received by the body at the targeted site is accurate. The bolus is just another method to be very accurate in exactly the dosage and location of the radiation. Mine was the gel type and the weight of it actually calmed me down. Not only do RO's differ in their approaches, but their equipment differs which is also a factor. You need to ask questions so you feel confident that you are getting the best. Take care.

MotherofFour · July 2015

That's interesting! TB90 did you also have an expander at the time? I have an expander. . .I have no idea where to begin to research equipment, etc.

calidancer · August 2015

mmotheroffour did your breast surgeon take your fascia off the muscle? I'm just curious because now I am again feeling uncomfortable not doing Rads. I was told the fascia acts as a barrier so there wouldn't be any breast tissue left there. My implant reconstruction is over the muscle though so the muscle isn't pressed up against the skin... Hmm mm...

Close margins after bilateral mastectomy for DCIS--Radiation?

Comments

Categories