Mastectomy with Close Margins

alizbeth

Hello.  I recently joined this community.  As way of background, I was diagnosed with extensive and multi-focal DCIS on May 6^th of this year. I had a mastectomy on June 3^rd. The multi-focal aspect of my diagnosis was made during the mastectomy.  Additional areas of DCIS were found in my nipple and near the deep margins of the chest wall. I had a skin and nipple sparing mastectomy, so my reconstructive surgeon will remove the nipple at my exchange surgery in a couple of weeks.

My bigger concern is the area of DCIS near the chest wall. In reviewing a couple of threads on this board and some technical articles, I know radiation is sometimes recommended. My case was presented to the tumor board; they did not recommend radiation but did recommend tamoxifen.

I am just curious for those that had questionable or close margins at the chest wall, was radiation recommended for you? Did they also put you on tamoxifen? And, lastly, what is the follow-up the oncologist recommends; in other words, anything additional like ultrasounds or MRI due to the close / questionable margins?

Thanks so much for your feedback.

Staple

My margin was close.  Nothing further was recommended.  I see my surgeon once a year is my only follow up. 

Moderators

Hi alizbeth! Welcome to this wonderful community where you'll find lots of knowledge and support.

Besides of the experience and advise of members here, you may find interesting to read also in the Radiation Therapy section of the main Breastcancer.org site.

We hope this helps!

The Mods

TB90

Alizbeth:  Sorry I missed your post on Sept. 2nd.  I have extensive experience with this issue.  I have close margins to chest wall and a focus of positive margin also.  I researched this to death.  With very close margins or a spot of positive margin (these categories are grouped together in studies) our risk for a recurrence jumps from 1 - 2% to somewhere around 13% depending upon the study.  Radiation can reduce that by 50 - 70 %.  I choose to have radiation.  Tamoxifen provides a similar, albeit less reduction. But tamox provides additional benefits in the other breast, etc.  Radiation was not recommended to me, in fact, my breast surgeon seemed to be against radiation.  There is recent research that suggest that radiation is beneficial for exactly our situations.  But then there are the risk factors of the radiation.  Tamoxifen also presents with risk factors.  After reading all the studies and looking closely at the SE, risk factors, etc. etc. I opted for radiation and my RO was quite supportive as he had dug out the same studies that are showing a significant benefit.  I was afraid of not being able to tolerate the SE's of tamoxifen and then having missed the window of opportunity for radiation once I found out that the tamoxifen was intolerable, could not go back.  But there are definite cons to radiation also.  You need to look at what risks you can live with (of recurrence and SE's) and make the best choice for yourself. 

There are other risk factors besides margin status that also suggest increased risk of recurrence.  A large area of DCIS and being multi-focal also increase risk.  Comedo necrosis is a very significant factor.  And young age.  So weigh your actual risks with your tolerance for risks against the treatment benefits and SE's and make the best decision for you.  I agonized over this decision and drove myself crazy as there was no professional recommending any one course of treatment for me.  So I made the decision that I believed that I could best live with.  I have never regretted my decision for even a second.  That is the good news. Wish that I could help more, but it is a very personal decision.       

Sorry if this is disjointed, but I am at work and being interrupted.  Darn how work interferes.  Lol    ((((((hugs)))))))    

alizbeth

TB90, Thank you very much for your response.  Your situation sounds identical to mine.  Both my breast surgeon & my reconstructive surgeon (both in OR during mastectomy) do not think radiation is necessary.  I believe my oncologist thought the tumor board would be a proponent of radiation, which is why he presented it before them, but the surgeon & reconstructive surgeon both stated they removed everything and did not think it was necessary.  I even met with the radiation oncologist, but she said the surgeons convinced her it was not necessary.  I am probably nearing the end of the window, if I haven't already passed it, and I have struggled very much with this decision b/c of all the things you said.  I do meet most of the risk factors: I am relatively young (42), had comedo necrosis type, and it was multi-focal.

Do you do anything special for your follow-ups?  Just a physical exam, or do you have MRI or anything else due to the close margin?

Thank you again for your response.

TB90

alizbeth:  First of all, remember that your risk of recurrence is very low, no matter what treatment you choose.  You had a mx for dcis and the drs feel quite confident that they got all of it.  You do have other risk factors, but there are also several studies that state that a mx is enough treatment for our situations. Also, radiation can make reconstruction more difficult, so you do need to factor that into the equation.  I am 55 and immediately decided against any further surgeries.  Plus my other breast is so small that they almost match.  Cannot imagine going to all that work to create something so small  

Perhaps tamoxifen would be a great choice for you.  Also, given your age, it may have even additional benefit. So do not panic if you do not have radiation. I lost about 50 lbs and walk/run every day and feel great.  I believe that weight loss and exercise are additional protective factors and you may also already do or can incorporate that into your treatment plan.  I know the feeling of that clock ticking and missing out on a treatment option.  But it sounds as though you have a team that is supporting you and hopefully you have some trust in their recommendations.  But I do find it interesting that in both our situations, the breast surgeons were against radiation and mine also attempted to influence my RO (he let that slip).  He remained neutral and then stated that for someone who likes to cross her t's and dot her i's, that perhaps radiation was the best option.  As I sat there with a binder of published studies, wonder where he got that idea about me.  Lol  But it remains a fairly grey area as studies support both positions.

I know that I am not helping.  I guess I am just trying to assure you that if there is no clearly right decision, then there is no clearly wrong decision either.  You should be just fine with whatever course you take.  Just add healthy lifestyle choices into the mix to give yourself extra confidence in whatever you decide.  As for follow-up, no MRI's here.  I just had my mammogram today on my healthy breast and now my RO is trying to decide whether or not to discharge me entirely from his care.  They really do not know what to do with us DCIS patients.  But just like the sense I get from you, we know that our situations are very positive, but that small chance of something serious developing from all of this still lingers.  That is what keeps me leading a very healthy lifestyle now. Ultimately the decision is yours.  Just know that once you make it, things do get easier.  I would love to hear from you once you make your decision.  All the best!