radiation after immed. reconstruction for DCIS margins < 1mm

Hi!  Yes, there seem to be only a few of us who need rads after a mast.  My bs basically told me that if I didn't do the radiation she was confident it would come back.  When I talked to the rads onc he gave me "at least 35% chance for recurrence without rads".   I just felt like it was something I needed to do.  I didn't want to go through all that I did with the surgery to have it come back.  My TE's were fully expanded and I am awaiting my exchange surgery.

I made it through with zero complications.  I was amazed at how well my skin did and my TE's are fine.  I was very tired at the end and it has taken me a long time to get my energy back.  If finished rads the beginning of July and am just now feeling like myself.  Ridiculous!

My med onc said Tamoxifen wasn't needed for me since I did both breasts.  If I had kept one she would have wanted me to take it.  I am very glad I don't need it....the side effects sound awful!  I don't know it there are a lot of threads about this...it seems there just arent' that many of us.  I'm still amazed at the fact that my whole breast was full of DCIS and no IDC was found.  I do feel fortunate.

My exchange surgery is scheduled or Nov 30....I'll let you know how it goes!  I am very nervous about another surgery.  I just don't want to have to recover all over again.  I am counting on it being 1,000 X's easier than the mast!

Hope this helps and let me know if I can help in anyway.

k

It does seem that they all have their views when it comes to DCIS....seems they really need more research.  I think my bs was basing her opinion on her personal experience as a surgeon.  Where my rads Dr got his numbers I don't know.  Even with rads he said he could only bring it down to 'around 4%'.  I know that is a GREAT number but frankly, I was expecting 1-2%.  Mine was found due to a palpable lump, grade 3 with necrosis....maybe that's the difference.  Have you thought about consulting with Dr Lagios?  (sp?).  There is a woman on here, SWALTERS, who  highly reccommends him and he is a leader in DCIS.  I did ask for a 2nd opinion on  my path before my mast (I started with a lumpectomy) and again before rads.  Nothing but pure DCIS was found. 

There is another woman here , Nana60, who has the exact same scenario as us and it was rec she do rads. 

I would be more   nervous about taking Tamoxifen than doing rads!  Maybe they feel Tamoxifen would be needed if you didn't do rads?  Beesie has some great posts on Tamoxifen.  In the end I  feel good about doing rads and avoiding drugs.....but that is me!   Such tough decisions and made harder by conflicting info.

Good luck!

k

Hi Jamiehop,

I had a similar path report from my left mx this past Aug 23. No microinvasion and no nodes involved, but positive margins in multifocal areas. (I posted similar question on this board in Sept., you can search it.) I also have TE and so far it appears as though my skin has held up well. My PS does not want to see me again until I am a month out of radiation. Radiation is delaying my exchange surgery by 6 months and there is a possibility that it will not hold-up, but I am trying to be positive.

 My BS said that no onco would recommend radiation for DCIS - I met with 2 med oncos and 2 rads oncos and they ALL recommended radiation. It was a shock, but I did the rads and will finish 33 treatments this coming Tuesday. 

I am scheduled to start tamoxifen in December, which I am not looking forward to. 

Feel free to send me a PM if I can be of any help to you. 

Please continue to let us know what your doctors advise as I am interested to know their recommendation.

Kim

 

Jamiehop,

My DCIS diagnosis sounds very similar to yours except I had a single mastectomy with TE instead of a bilateral mastectomy with TEs. My DCIS covered basically the entire lower breast and I had several close margins.  I originally had a nipple and skin sparing mx but had to have a second surgery due to positive margins.  Radiation was recommended to me because of the close margins.  I was told by the RO that it would decrease my chances of recurrence by 50%.  I just completed 10 out of 36 rad treatments today.  So far the TE seems ok but my skin is starting to react.  My PS made a comment that the radiation could shrink the TE but then said I could do additional fills if necessary after radiation was completed.  The PS also said I would need to wait at least two months after radiation was completed before surgery or additional fills could be done.

I am curious about your micromets to the SLN.  Is that the same as ITCs (isolated tumor cells)?  I was wondering because I had ITCs found in my SLN.  The doctors believe the ITCs got into the SLN from the core needle bx.  I was told not to be concern about it since no invasive cancer was found. I still wonder though if they missed something.

Tamoxifen is also recommended for me but it was my understanding it is for the protection of my non-cancer breast.  I seem to remember being told that if a bilateral mx was done then no tamoxifen needed but that was before I had the mx and the close margins.

Good luck with your decision.  I know it isn't easy.  Every decision I made during this treatment process was hard to make.  I still have not completely decided to take tamoxifen but probably will since my oncologist is strongly recommending it.

Jamiehop,

Thank you for the explanation regarding the micromets/ITCs.  None of my docs felt chemo was indicated in my case.  I would have gotten a second opinion too if chem had been recommended.   

My medical oncologist told me that my lifetime risk of a DCIS/IDC recurrance is 10-15% with doing radiation and tamoxifen. 

 I can understand your hesitancy regarding the radiation.  I was really depressed when told I would need rads. I would almost be finish now with the reconstruction if the rads had not gotten in the way.  I decided to do it since all my docs agreed that I could benefit from the radiation.  I do however worry about the TE and the final outcome of my reconstruction.

I'm joining your club, ladies! Nothing personal, but boo! I'm sad to be doing so.

I had a single mastectomy and TE placed on 11/15. Surgeon and PS were both hopeful of avoiding radiation, but anterior margin was less than 1mm (posterior less than 2mm) and while the tumor board that discussed my case last week was split in their opinions, 2 radiation oncs who were there recommended rads because of my age (36), including the one I will be seeing for the first time Thurs.

I had really hoped to avoid radiation. I haven't had any fills yet and am worried about how it's all going to go now. 

I suppose I'll find all this out Thursday, but will I get all my fills before starting rads? Is there a window within which they want/need to start rads? I think I am going to have whole breast radiation because they don't know exactly where the close margin was (the tumor was 9.5cm - basically the whole breast). How is this different from other types of radiation treatment and will SE be worse because it's covering a wide area?

Gee, I guess I could still say no to radiation, but I'm someone who would be pretty pissed at myself if I skip it and have a recurrence later.

Just a note on radiation and reconstruction. I had radiation the first time I had DCIS in 2001. It came back earlier this year, and I opted for a mastectomy because radiation wasn't an option for me the second time around. I considered doing another lumpectomy, but it was pretty widespread including the grade 3 and lots of lower grade stuff. My grade 3 stuff was also pretty close to the chest wall but since there was no signs of invasion either in that tissue or via the lymph node dissection, I think I am pretty good.

Anyway, my point on radiation and reconstruction is that I had an implant after the mx and did have a problem with it in terms of skin shrinkage. The skin and tissue on the previously radiated breast actually began noticeably shrinking a few years ago. So when I had the surgery and the implant, the skin really reacted and shrank right around the implant almost like a vacuum seal, even under the implant on the underside. So it's fairly unattractive and there is some discomfort since it is all pretty tight there and the implant is sort of pushed toward my chest. 

 I had a great experience with radiation at the time - no burns etc. and the skin continued to look great, so that wasn't an issue. I don't know how common it is for the skin to shrink but it's something you can ask about. Or maybe if you have another type of reconstruction than I had it could make a difference?

In the end I'm still glad that I had it rather than no reconstruction since I'd been dealing with a big difference in breast size for the last ten years and having to compensate for that with inserts and such. So this is more convenient at least. And I don't have to worry as much about recurrence, obviously, as I would have if I had another lumpectomy and just done tamoxifen.  

Hmmm, I had DCIS and was told rads no question.  Perhaps it depends on grade? 

I met with two plastic surgeons.  At the time, I was with a surgeon who thought I would need a mastectomy.   Both PSs specialized in breasts. One was supposed to only do reconstruction post treatment, the other was supposed to do it concurrent.  When we met, both said they would not do reconstruction until after any other treatment including radiation--in their professional experience, it created the potential for too many problems.  I think part of the problem is no one can really predict how any one individual will respond to something like rads.  I anticipated having a miserable time--I am fair skinned and always get miserable sunburns.  Instead I pretty much sailed through skinwise [though I did get tired].

As for tamoxifen, I've been on it since August with not a single side effect or issue.  It really depends on the individual.  I know when I was trying to make my decisions there were a lot of things I was really scared about like rads and tamoxifen but because my doctors recommended it, I pushed through.  I'm glad I did.  In the end, neither was nearly as bad in reality as they were in my imagination.

@3monstmama, I think where the question is for many is radiation in addition to mastectomy. I'm pretty sure that I've read that the recurrence rate with mastectomy is really low, like 2% since most all of the breast tissue is removed. Radiation reduces risk of recurrence about 50% so it would only reduce the risk of recurrence in most cases only about 1% and the benefit to risk ratio doesn't bear out. In my case I had raditation with breast conserving surgery my first time but had a mastectomy the second time since it isn't recommended a person have it twice in the same place (a) because it can do more harm than good and (b) the fact that it came back could suggest the cancer was resistant to radiation. So mastectomy was my only treatment choice other than another lumpectomy and tamoxifen, which doesn't provide the same benefit that radiation would have. It was actually recommended that I take tamoxifen now but for me I don't think the risk to benefit ratio works out, since the risk of recurrence is quite small (that 2% again) and tamoxifen doesn't totally eliminate it.

mom3band1g - Did you have PT during the time you were undergoing rads or did you wait until rads was over?  I am still in the middle of rads and my skin is so tight plus very red. Getting through rads has been very hard for me.  My PS also told me he would get rid of the scar tissue during the exchange and said I needed to wait a  minimum 2-3 months after the rads before doing the exchange.  Sounds like it is better to wait longer.  The RO and PS both seem unconcern about my skin and tightness and say this is all normal but I am so worried.

I can see from your dx that your entire 2010 year has been consumed with bc treatments and surgeries.  I am happy for you that your exchange is finally completed and hope your tightness gets better.

Thanks for the PT tip! 

hellome- depending upon the type/style of bra, sometimes you can find a 38 which would match your breasts and add a hook expander to get up to a 40. Both my dd and I have this difficulty.  We fit better into the sizes created for 38's, but they are too small for our ribcage.  Target sells these expanders.  3 Sets, different colors, for about $8.

Also, hellome, on the question of radiating the breast twice, I asked the rad onc today about that - can a breast be irradiated twice? I fully expected her to say "that's correct, it can't." What she said instead was, it's not recommended but she has done it. She irradiated one woman twice on the same breast and she did fine second time around, which was 7 years ago. That woman is doing well, and is turning 97 soon!

I too had rads after MX with TE and will be moving to the next phase starting Tamox next week. It's nice to have a place to to share with others in similar situations.