I don't know what to do!

I hope someone with DCIS responds to you ... I had multifocal IDC so an mx was my only option. I ahve to say I was NOT looking forward to radiation which was my course of treatment before the other tumors were found.

Do you have DCIS in both breast?? Why can't you take Tamoxifen

Diane

Hi Eema   I just finished 5 weeks of rads post partial mastectomy and it was not nearly as bad as I thought it would be.  I was a bit pink and did get a rash over my breast but it is almost complete resolved.  My skin is slightly discolored (more like a tan now) which I'm told will also fad.

Good luck with your decisions.

Eema- I had DCIS in one breast and opted for a bilateral mastectomy (BMX).  I did not want to have to worry about a recurrence (also have a young son) and I know I would have had constant anxiety.  I was also concerned that if I did radiation and then later needed a mastectomy the radiated skin would make it challenging to do reconstruction.  (This doesn't happen all the time but can happen.)  But choosing between lumpectomy and mastectomy is such a personal choice and there is no wrong answer.  We all have to choose what is best for us.  And everyone on here will support whatever decision you make.  

If you do decide to go with mastectomy please make sure you find a really good breast surgeon BS) who is trained in nipple sparing mastectomy (NSM) and ask if you are a candidate. Usually with DCIS you are unless it is too close to the nipple or you are extremely large breasted.  (Too hard to maintain the blood supply to the nipple if if has too far to travel.)  This type of mastectomy is a lot less disfiguring when doing reconstruction afterwards, especially if you can find a surgeon who will do the incision beneath the fold of the breast.  (Not all of them do so be sure and ask.  Some still take it right through the center of the breast because it's easier for them!)  I would also encourage you to meet with several plastic surgeons (PS) who specialize in breast reconstruction.  There are a lot of different methods out there with pros and cons for each.  Unfortunately, each PS usually has their own specialty and encourages you to do theirs so that's why I say check out several.  The good thing (if there can be such a thing) is with DCIS you have time to research since it is not invasive.  Good luck to you.

I am Irish.  redhead, fair. blue eyes.  I had a lumpectomy and radiation a hear ago.  I am taking tamoxifen.  I did everything they told me to do.  I did not put cream on within 4 hours of radiation.  but I did use cream a couple times a day.  I went topless as much as possible when I was home.  I know that sounds funny, but it is very comfortable, nothing rubbing against your skin and I personally think that makes a big difference.  always went braless.

I had no problems with radiation.  I got a little pink and closer to red at the boost site.  I never peeled.  After my lumpectomy, I had no pain.  I took one pill after surgery because I didn't know if I would have pain, but none.  I even had a recision to get bigger margins and no pain with that either.  I was very fortunate.

All of this is a very personal decision.  At the end of the day, you have to be satisfied with your decisions.  DCIS is not an emergency so you have time to think about your decision.  I personally would not get a Mastectomy until I have no choice.  but that is my decision.  I'm 57.  I have a cousin that had breast cancer 23 years ago and is still fine, so I use her as my inspiration. Hopefully, I'll be as lucky.

Yes you can be disfigured by radiation but a mastectomy is very disfiguring.  PS can rebuild them.  With a lumpectomy you could still have some feeling, though depending on the amount of radiation and reconstruction.  MX you will be numb, though some do get some feeling back.  My PS said I could get skin feeling back, but no breast sensation.  

Emaline said: "With a lumpectomy you could still have some feeling..." Really? I haven't lost any feeling as a result of my lumpectomy, though mine was fairly small.

Eema,

I think if you knew what your odds of recurrence were with and without radiation, it would help you decide what is best for you. You can use the Van Nuys Prognostic Index to calculate if radiation would benefit you. However, you won't be able to do this untils you have surgery, because your margin size is one very important element used in deciding this. 

If you get good margins, your score on the VNPI might be low enough to omit radiation and/or tamoxifen. In 2007 when I had DCIS, I consulted with Dr. Michael Lagios, a world renowned DCIS expert and pathologist with a consulting service that anyone can use. Once I knew my chance of recurrence was only 4 percent, the 50 percent risk reduction that radiation typically provides was not enough for radiation to make sense for me. However, if your risk is 30 percent for instance, you may want to consider radiation. Much of it will depend on what you feel is best for you.

If you have questions, feel free to PM me or read more about my story on my website:

https://sites.google.com/site/dciswithoutrads/home

Wishing you all the best,

Sandie

Please be aware that a mastectomy does not necessarily mean that  you will be free from radiation. I am not sure how often it happens with DCIS, but if  your  margins are not large enough, you still may have to undergo radiation. I think  it is a misconception by some women that mastectomy means no radiation. I was prepared mentally going into my BMX with SNB that there was always a chance that I would need radiation. I was lucky, however.

I am 4 1/2 months post-op from a LB mastectomy.  Didn't have reconstruction.  I had previously had radiation 12 months before.  Had severe burns that lasted for a few weeks, but eventually went away.  Because I had a recurrence after 12 months, my only option was for mastectomy.  I still have bruising on my chest wall and my surgeon has Only 2 weeks ago I had my yearly mammo on my right side which suscpicious calcifications and on Monday had my stereo biopsy.  I have had 7 of these biopsies in the last 6 years and this one was the worst, probably because of the position of it - right near the axilla.  Needless to say, I was very fearful of another diagnosis of DCIS recurrence.  Couldn't bear the thought of going through another major surgery so soon after the last one.  Got my results the next day and all was good.  It was a benign fibrocystic tissue, which apparently is quite common.  Now I need to decide where to go from here - do I go through this anxiety every 12 months or do I go with a mastectomy?  Have an appointment with my BS in mid-August to discuss my options.  Good luck!