Returning DCIS after treatment for DCIS 2 years

I had DCIS 8 years ago and in Sept 2012 was dxed with IDC Stage 1, 0/2 nodes. 8 years ago I had partial mast and mammosite rads. Even with the mammosite rads which focused mostly on one area, I couldn't have a second partial, but had a mast instead. I also had immed implant reconstruction. There was talk of radiation making the skin that must stretch out over the implant too thin and therefore not an option as necrosis is a possibility. In my case the mammosite rads being internal left my skin where the rads were not much different from any other breast skin. I came thru the reconstr fine with no problems.

Because you have had whole breast radiation, you probably are not a candidate for partial mast and more rads as radiation is generally a one time event. That would mean your safest treatment would be a mast. If you consider reconstruction, plastic surgeons all have different ideas about the best treatment, but certainly previous radiation will enter the discussion. Good luck with your decisions and I hope there is no more that DCIS for you.

That's not a great experience is it GreenCowgirl.

I guess I'm another one that's been treated for nothing then.  I'll stick with what my doctor said in that "we're on the best end of the worst news, but sadly it is cancer".

Wishing you well with your treatments this time round xxx

Hello,

When you were first told you had DCIS, what treatment did you do?

Thanks,

Julie

just an opinion here.....but I think people who work with cancer and see the outcomes day in and day out, think in extremes.  My sister is an RN, and she wanted me to have a double mx.....for a lesion that was the size of 1/2 a pea.  My Radiologist also told me off the record (she is the sister of a friend) that if it were her, and she had cancer, she would opt to have both breasts removed - even tho in my situation it would be extreme.  I didnt ask my surgeon what she thought off the record, but she said my choice was acceptable to her.  

So wait for the 2nd opinion, read everything about your dx...talk to people who have been thru it.  Dont panic yet - its not over.  

Praying for a better outcome for you and peace with whatever decision you make

GreenCowgirl, the recommendation you got from the new breast surgeon is probably based on the fact that you've already had rads - as Ginger mentioned, so you can't have rads twice on the same breast - and that your biopsy pathology appears to be intermediate to high grade. 

Normally the options are lumpectomy, or lumpectomy + rads, or mastectomy. (Sometimes rads is needed after a MX too, but that's not common and can't usually be known until after surgery.)  In your case, the middle option, lumpectomy + rads, is off the table.  So if you don't want to have a mastectomy - and I agree that it seems extreme for what might be a very small area of DCIS -  the question is whether a lumpectomy alone, without rads, is feasible in your situation.  If you have a very small area of DCIS and very wide margins can be achieved, then it's certainly a possibility. But given that your DCIS is verging on grade 3, and given that this is your second diagnosis (or a recurrence; I'm not clear on whether this is a recurrence in the same area of the breast or possibly a new primary in a different area of the breast), that suggests a higher risk of recurrence if you opt for a lumpectomy alone. With any recurrence of DCIS, there is a 50% chance that the recurrence won't be found until the cancer cells have evolved to become IDC. So that's the risk if you don't want to have the MX.

I'm sorry that you are in this situation.  It will be interesting to know what the Mayo Clinic says and if they present any different options.  Good luck with that!  

Green cowgirl- (sorry my IPad just won't allow that as one word)

I go in bright and early tomorrow morning with, ugh, my period, oh joy goodie goodie-not, for the tissue expander replacement with silicon implant, a bit of lipo from my upper outer thigh(is that called saddlebags.) where my leg meets my hip, fat grafting around the edges of the fake boob to try to hide the edges, thin skin and I'm a relatively thin person with very little excess fat, and the lift and slight reduction for symmetry on the non cancer side. IF I forget to check in within a few days, please, if u want, pm me, and I'll tell you ALL about it.



IMHO, the mx was not a horribly agonizing procedure - I never used any of the narcotics even immediately after surgery, nor did I take anything for discomfort once I came home the next morning. I mainly just had a 'stinging' sensation across my umx side. I'd give it a 1 or 2 out of 10 on the pain scale. I later learned the stinging was the alloderm stitch line. Ick. The drains, I ad 2 of them were a pita and became uncomfortable because the tubes were SO flipping long- I'd accidentally end up pulling them when I sat down- that hurt! I was SO happy to get rid of them and get a real shower!

I don't mean to make light of having a mastectomy but it has occured to me that its similar to a lot of women's descriptions of childbirth.  Some say its no big deal and they set you up for a big surprise because it IS a big deal and also painful and others make it sound like the worst thing that could ever happen which its not.  Some people are just more accepting of what is and what has to happen to get from here to there.  In this case also, its different for everyone and their tolerence for pain and discomfort.  Keep your eyes on the prize which is disease free breasts, probably much better looking than the originals!

I was 65 when I had my mastectomy, so not young at all but in good overall health.  I had the mastectomy, expander and breast reduction done at the same time.  I had radiation because I had a positive margin on the chest wall. They never used to do radiation after mastectomy for DCIS but they do now in some cases.  My surgeon said she had to do a sentinal node biopsy when they did the mastectomy because they can't do it afterwards if they find any invasive cancer in the pathology.  A dissection is way more surgery than a sentinal node biopsy which they will probably do and should do if you have a mastectomy.  My nodes were clear.  By the way, I had genetic couselling also and was told only 5-10% of breast cancers are hereditary and not likely in my case so I didn't do the testing.

One other thing is, though I had little pain/discomfort with my lumpectomy and mastectomy, with the expander implant exchange it was not so easy and I had pain for a few days.  I saw the plastic surgeon today and she said it could be because operating on radiated tissue is harder.  The tissue is tougher and the nerves are more sensitive. This will probably be the case for you too.  I'm fine now though and its only 4 days.  Also, they look terrific!

Again, I stress to you, if a mastectomy is recommended, get a good surgical team, ie breast and plastic surgeons that you have confidence in, and let them figure out what's best for you.  Nothing wrong with your input but its nice if you just have to concentrate on getting well. 

I think it's great that your docs don't want to take lymph nodes.  I had two taken (and they were clear) but I've already had some early-lymphedema symptoms.  Who wants to deal with this for a lifetime?  No one!