Post-Mastectomy Radiation for DCIS

Hi all -- I'm new to this forum, I just had a bilateral mastectomy last Wednesday (Aug. 13) with DCIS diagnosed only on the left side (6 and 7 o'clock). My surgeon just called with pathology results and I'm almost identical to lollybeth -- lymph and invasive are both negative, but margin was less than 1mm. This isn't at incision site -- it's almost where the breast meets the chest wall. More DCIS was found in the left, and atypical hyperplasia on the right. I have my followup with my oncologist on Aug. 27, so I'll be curious to see what he says about treatment and I"ll post again then. I also have a followup with my plastic surgeon on Aug. 25, so I'll ask him too about options. It makes sense that with DCIS, if the milk ducts aren't up against the skin, the chance of any remaining cancer cells seems like it would be small, but could some cancer cells migrate during surgery I wonder? Just throwing that out -- I have no idea if that's possible. My breast surgeon definitely seemed concerned about the close margin.

Sheila 

Hi, lollybeth,

If your doctors feel that the benefits of you not having radiation outweigh having it, I would probably  go with the doctor's recommendation.  I had radiation 38 times on my left side, up to my neck, under my left arm, and almost down to my waist.  I am triple negative and had lymph node involvement, however, but I think every treatment you can take to prevent reoccurence is definitely worth it.  I know you want reconstruction, but the treatment is worth the wait if it gives you a better chance of no reoccurrence.  I decided against reconstruction, at this point, because I still have my right breast and I could not do the "inlfation" procedure because of my size.  Right now, I am okay with the prosthesis.  And, I'm not really experiencing much in the way of side effects from the radiation, but it seems like my chemo side effects keep lingering on.

In 1985, my situation was similar to lollybeth's....I had DCIS and a mastectomy. I had 0/35 nodes. There was a close margin. The doctors at U Penn recommended radiation. The doctors at NYU and at Dana Farber both did not recommend radiation.  Dana Farber looked at my pathology and was certain there was a margin before they made the recommendation.  So I did not have the radiation.  And I have not had a chest wall recurrence or any problems.  But this is one where I would think that getting a second opinionwould be very helpful.  In my case since my second opinion was so different, I got a third opinion.

All the best to you.

Mandy 

Follow-up to my previous post on Aug. 19 -- I went to my oncologist last Wednesday, who wouldn't commit one way or another as far as radiation. My surgeon had said that he wouldn't do a re-excision because in the spot with the close margin (there was only one place with a negative margin less than 1mm), he had already gone down to the skin to remove all the scar tissue from the biopsy, and he would have to remove skin at this point. He said that since the margin was on the skin side, it would be easy to detect any recurrence. My oncologist agreed with that, and said that since there was only DCIS, it was less likely that radiation would be needed, but he still sent me to a radiation oncologist. I saw the radiation oncologist this morning, and she didn't even hesitate to say that there was absolutely no reason for radiation. She based it on the type of cancer (since there was no invasive cancer) and the fact that I had a mastectomy rather than lumpectomy, so there is no breast tissue left. I fully expected her to say that I should have radiation for the extra measure of safety because of the close margin, so for her to state emphatically that there is no indication whatsoever for radiation definitely convinced me! And that was on top of both my surgeon and oncologist leaning against it too.

Christianne, was your mastectomy your second surgery? When you say "resection" that makes me think it was the second time, and your margins in that surgery were negative (meaning there was clear tissue removed all the way around -- no cancerous areas next to any remaining tissue).Your situation isn't exactly like mine, but having DCIS at the narrow margin is definitely better than having any invasive cancer there -- which is probably why no one is recommending radiation. The radiation oncologist also told me that if there's invasive cancer with a very close margin, there's a chance that some lesions could have been missed, but with non-invasive and all breast tissue removed, there's very little chance that any cancerous cells were left.

Sheila 

I also had a mastectomy for DCIS, with a margin in the upper outer quadrant of less than 1mm.

I'm having a second opinion done with the breast sample, as I had 6 attemps at a biopsy, and i don't see how any ducts would be in the upper outer quandrant. I think the close margin is due to the biopsy. ( They say that doesn't happen) I was also nuclear grade 3. I was also told no radiation  from a radiation oncologist, and yes from a medical oncologist. In looking at the anatomy of the breast I don't see how DCIS would have a close margin except at the nipple, or front of the breast. the rear of the breast has lobules, and the ducts appear to be very central in the breast, surrounded by fat. Just a thought since there are so many of us.

I have not followed up on this thread for a while - just read mamhop's dx, if you read my past posts (history of post) I have very similar dx, if is not that common - long long story - takes so much time to type it all.  I just finish my 16th rad treatment - I am getting 25, I have expanders in both breast - after 4 oncol. and rad. opinions and 2 tumor group advice I am getting the rads.  I am glad to hear you did not have to do this.  I too have grade 3 with necrosis, and cannot take other hormonal treatment because I am er- pr- and have a little bit of micro invas. but not in the limp nodes that they took at my first surgery/lumpectomy. I took had a very large mass of DCIS, it was 7 - 8 cm.  Close margins (not positive) So I was out of the standard care group. Now my reconstruction went from the simple and quick recovery and may drag out up to 2 years due to rad complications on my right/cancer side with expander.  Just wanted to put my 2 cents in so if it may help someone else in the future.  Good luck and start healing.    Holly

I"m curious if anyone has had radiation following recon with silicone get implants.  Mine are a couple of weeks old now and I'm healing well.  Unfortunately, they found residual DCIS in my right arimpit, "hiding" in milk ducts that were not removed during my mastectomy.  I'm meeting with a radiologist who says he's never seen this before and isn't sure whether radiation is appropriate.  A doc from the Mayo said he'd never seen this before either.  Don't know what to do.

Have you looked into MammoSite? It's targeted radiation that works from the inside.  It spares the outside skin.  You might want to check out their website.

I am new to this site.  I have DCIS low grade stage 0 in the left breast, it do not spread.  It is removed with clear margins.  My concern now is that I feel a double mastectomy would lower my chances of reoccurence greatly, my radiologist states that it isn't necessary that radiation of 33 treatments and tamoxifin is the best treatment.  I want to know how much less of a chance is there for reocurrence if I do or don't have the double mastectomy.  Who has been in my situation and what did you do. 

Hi. I am curious to see how all of this resolved for you guys. I am 4 weeks out of a bilateral mastectomy. I had high grade DCIS. After an initial lumpectomy where they determined that the DCIS was high grade and all over the place they receommended the single, I went bi. Each step of the way they thought it would be less and it kept being more and worse. My inferior and posterior margins are now 1mm. Surgeon is recommending radiation, medical oncologist says no, radiation oncologist says yes because there is always some tissue left behind and I have a 20% chance of recurrence or of a mutation of the DCIS to something more invasive because the DCIS was that high grade. She was surprised that they did not find anything more invasive and is recommending that they review the pathology. She is supposed to present my case tomorrow to the panel of oncologists. I have expanders in now and am nervous about the effects of radiation on the reconstruction as well as possible malignant side effects from the radiation treatment. It sounds like some of you have been down this path and have had different recommendations. My concern is that the margins are close to the chest wall which won't be as evident for recurrence. I am also 38 years old and a mother of 5, the youngest is now 7 months and I don't want to go through anymore future surgeries if  I can avoid it.

Thanks jklmtl@verizon.net 

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