Post-Mastectomy radiation for dcis

violamama

hello! I have been combing the boards trying to find any information on my particular circumstance, but all I have found is a bit older and I'm wondering if research/standard of care has changed. I had my BMX on Monday and got pathology results yesterday. I had pure DCIS, grade 3, er-/pr - , 8.5 cm with positive margins on the chest wall. I'm meeting with my RO on Wednesday to discuss whether or not I'll need radiation. I know radiation after mastectomy is rare, but I'm also not comfortable with the positive margins. Has anyone else been in a similar situation? Did you need radiation? What is the latest research saying? Thank you!

MinusTwo

viola - Did they discuss more surgery to clean up the margins? Positive margins in some cases means chemo. With a BMX, how will they limit the rads? Sorry I don't have any updated info.

Mariangel43

Good morning, Viola and Minus Two. You can get the recent ASCO guidelines (from last semester 2016) in which they establish how post mastectomy patients would better be cared for. You don't say if it is the same stage for both breasts. As far as I am informed, if the tumor is big, (more than 3 cm), do not have clean margins and it is spread within the breast or to the other breast (which this is the case), RT is recommended to reduce or kill the spreading of cancer cells to other organs.

You do not say if you have lymph nodes or vascular invasion (which should come within the pathology report); both conditions also require RT. Most probably, they will give you 60 Gy and some boosts. Talk with your RO about lymphedema and other side effects before he/they establish the dose. Tell him/her if you plan reconstruction of both breasts. If you do, the PS should put the expanders before the RT because skin may be severely affected and lose the capacity to stretch. Whether silicon implants or autologous implants, PS needs to put the TE before RT.

Minus two is right. Normally they would surgically remove the affected tissue on a second surgery if you have been left with tissue enough. If there is not enough skin and tissue they irradiate you.

Good luck, Viola.

Sitti

Violamama, my knowledge is very limited and maybe someone else that has been in your situation will respond. I did have pure DCIS, grade 3, er-pr-. I'm sure your BS explained it was more aggressive. I had an initial lumpectomy and although the margins were clear, in one area the margin was only 1mm and my B.S. wanted to go back in to get a better margin. The RO agreed given the makeup of the cancer. It was at that point, my surgery plan changed from LX to MX. My margins all ended up clear but I think if the margins hadn't been clear against the chestwall then radiation would have been required. It seems I've read of others on the board that have said that. Hopefully someone current will chime in and hopefully you will feel confident in your RO when you meet this week. You can always get a second opinion too if that will help you feel more confident. Wishing you the very best, keep us updated.

BarredOwl

Hi violamama:

I am glad to hear that you are meeting with a Radiation Oncologist ("RO"), because the question of post-mastectomy radiation is within their area of expertise. The question of possible re-excision (not very common with mastectomy) is a question for the breast surgeon.

To my layperson knowledge, current clinical consensus guidelines from NCCN and ASCO do NOT address the question of the post-mastectomy radiation for pure DCIS (Stage 0), but please confirm it with your RO. The recent December, 2016 focused guideline update from ASCO appears to be directed to post-mastectomy radiation in certain patients with invasive pT1 or pT2 breast cancer. As such, it does not appear to apply to those with pure DCIS (non-invasive pTis, N0 disease). Thus, I believe that the question of post-mastectomy radiation therapy for pure DCIS is informed by various clinical studies conducted in patients with pure DCIS. To ensure that you receive accurate, up-to-date information about the most current and/or reliable studies relevant to your situation, you can ask your RO for a discussion of the key clinical studies he is relying upon to advise you. You can request the RO to send you citations or links if you'd like to review them.

Also ask what clinical and pathologic factors are relevant to the question, and if radiation is recommended, which specific factors weigh in favor of the recommendation in your case. Hopefully, you will also receive case-specific estimates of local recurrence risk without radiation and local recurrence risk with radiation. Be sure to ask what type of estimate is being provided (e.g., 5-year? 10-year? local? other?). The absolute benefit of treatment (the difference in your risk without versus with radiation) is weighed against the risk of serious side effects from treatment, in a personalized risk benefit analysis in light of your personal risk tolerance.

Where some clinical judgment is involved, you may wish to seek a second opinion from an independent institution. This may include a review of all imaging and actual pathology slides (sent overnight), along with consultation with a breast surgeon and radiation oncologist regarding possible re-excision and/or radiation.

Best,

BarredOwl

calidancer

I had a close margin (1mm) on the chest wall. The tumor board agreed no Rads.

It was explained that the surgeon had taken the fascia off the muscle at the chest wall and this is a good barrier so there's less chance any breast tissue would be left behind in the area. On the skin side there is more margin for error and possible to leave small amounts of breast tissue because there's no obvious division between breast tissue, skin, and fat.

They also like to leave the option for Rads available for a recurrence since you can't radiate an area twice.

CEL82

OMG!!!!! Just found this post! I had a NS BMX in December 2016 for DCIS (ER/PR+, comedo-necrosis, grade 3, multifocli). At that time 1 area was <1mm clearance on the posterior side, but no ink on tumor, and all the docs said no further tx.

Well I was just dx with a recurrence October 2017 in the same spot as the <1mm clearance area - in 10 months! The path is showing DCIS still, thank god! Identical to the previous DCIS, my surgeon is saying it is residual cells left over. I had 2 lumpectomies to get clear margins this time. I told the surgeon before my last surgery, please, you need to get at least 2mm clearance! -he did. Now they are recommending radiation! I have already decided i am going to do the radiation. I have been reading studies regarding radiation after mastectomy and i think i should have been offered this after my bmx... i feel that my case was totally downplayed with it being DCIS, "oh your fine, stage 0, no treatment needed!" -by every doctor, and i saw 4 surgeons, 2 ps, and 2 oncologist- all said the same thing.

I found 2 small studies on NIH about rate of recurrence for DCIS after dmx and it says risk factors for rate of recurrence- even with just DCIS that i wasn't told about):

Age, margin of clearance, grade of tumor, size of tumor.

In these studies the women that had small margin clearance <5mm and had radiation never had a recurrence.

CMary

Hi violamama,

I'm really interested in your post because I had a mastectomy at the start of October for DCIS and one of the reasons I chose mastectomy was because I believed it would eliminate the need for radiation. I'm now being told I need to consult the radiation oncologist because the bottom margin was not clear. I have a tissue expander in -- not sure how that will complicate things. I see the radiation oncologist this week. I'd be interested to hear how things have been progressing for you. Wishing you the best.

NotVeryBrave

CEL82 - I'm curious. How did they diagnose your recurrence? After only 10 months? So sorry!

violamama

Hello CMary, I apologize for the late response, I just checked back for the first time in a while. I ended up doing the radiation, tolerated it well, and feel good that I have done everything I can to make sure this cancer journey is over! My RO presented several studies and tried to determine my chance of recurrence based off th a data. Unfortunately, there is not a lot of data out there with my situation. We decided given my young age, large area of dcis, being grade 3 and er/pr neg it would be best to do the rads. I hope you have found peace with your chosen path!

CMary

Hi! Thanks so much for replying, and I apologize that I didn't see your reply until now. I have started radiation, have just had 6 of my 28 sessions, and am having some concerns about the effects on the temporary implant, but I plan to check in with my PS tomorrow, so we'll see. Thanks for the support. I'm happy to hear you've had success.

CMary

Hi @violamama.

Thanks so much for replying, and I apologize that I didn't see your reply until now. I have started radiation, have just had 6 of my 28 sessions, and am having some concerns about the effects on the temporary implant, but I plan to check in with my PS tomorrow, so we'll see. Thanks for the support. I'm happy to hear you've had success.

strawberrybubblegum

Hi @CMary,

I am similar as you - DCIS, large area, and positive margin after mastectomy, and I'm 39. I now have tissue expander, and my BS told me I might need to get radiation therapy (shocking and sad!). What did your PS say about the TE, future implant and radiation side effect? My PS told me "he will make it work".... I want to have confidence in him, but after reading so much, I just feel radiation is going to make my future implant problematic.

Also, are you having radiation while having TE? My PS said that he might even do my exchange before radiation therapy, since my size is small... Thanks in advance if you can share your experience. It is very frustrating that mastectomy is not the end of my journey.... and I can't get all the answers I need because doctors went on vacation... (not complaining, just saying)...