36 yr old with stage 3, high grade, DCIS, 3 margins postive

Hi Noni,

I had DCIS with a small invasive tumor and I'm 46. To be stage 0 or stage 1 is a very good place to be. My personal choice was the BMX. I am 3 weeks post op and its not been easy. It is typically 6-8 weeks off work with reconstruction. I chose reconstruction so I have very uncomfortable tissue expanders in. I still can't do much physically and my surgical drains are still in. Hopefully they will come out Monday and recovery will speed up.

Please know that she will be fine but nay need MX just because margins were not clear. BMX would be more a personal choice. I strictly chose BMX because I want symmetry. Good luck to your daughter, she has plenty of time to educate herself and make the right choice for her.

Noni-Yes my chemo and radiation were due to having node positive cancer. It is not required for DCIS (sometimes rads if it is super close to the chest wall). My daughter was 2.5 when I was diagnosed so I understand the hugging thing. I showed my daughter where my 'owies' were and we figured out she could hug and snuggle into my back. She was very careful for the most part. Also grandma and grandpa came and stayed for the first 3 weeks so she got lots of extra hugs from them! I am well now and hoping to return to work (finally!! but time off was due to chemo/rads/recon issues) within a few weeks!

Just FYI, my PS said because my pecs were so strong it was more difficult to expand, so sometimes fit is not a guaranteed easy road! And just to be aware that the implants do make working upper body weird for me now, and my back is sore now that I am a uni-boober due to implant failure. But I am well, and getting stronger every day! Scary stats, of course, but the stats are all at least 5-10 years behind due to study length so I am optimistic.

Layman's Guide to DCIS

Hi Noni,

Sorry for what you're going through! Your daughter definitely has some quite personal decisions to make. I'll share my background, since it's similar.

I was diagnosed at age 36 with a 9cm+ high grade DCIS tumor with comedo necrosis. I had no choice but to have mx, though at the time I decided to do uni only -- I saw no reason to lose an otherwise healthy other breast. Final pathology showed pure DCIS, 100% ER+/100% PR+. 4 removed nodes were clear. I chose immediate reconstruction with a tissue expander, and eventually a silicone implant. I did not have enough donor tissue elsewhere in my body to do any other kind of reconstruction.

I took a long while off of work - about 6 weeks if I remember right, and then didn't travel for work for another 4 weeks after that. I probably could have handled going back to work sooner, though.

Because of narrow margins (<1mm), my case went before 2 tumor boards to determine whether radiation was appropriate. One board was split on their opinion, the other board (Dana Farber in Boston) agreed it was NOT indicated. Both boards, however, said that either decision could be justified. I chose not to do radiation. I also chose not to take tamoxifen, because we wanted to have kids and it is contra-indicated with pregnancy.

That was almost 5 years ago. I have since had 2 kids and breastfed both of them with my good side. I spent a long time noodling on what I ultimately wanted to do on my remaining good side - for symmetry reasons I would either need a reduction/lift or a prophylactic mastectomy.

Because of my two little kiddos, I decided on the mastectomy, and just had that surgery last week. It has been emotionally tough to lose my other breast, but on the other hand I would not be able to live with myself if I had kept the breast and then had a problem later on.

I wish you well and am happy to answer any questions you or your daughter might have

Noni,

A surgical margin is not related to the type of tissue. The margin refers to how far from the edge of the excised tissue any cancerous cells are found. A positive margin means that cancer cells were found at the edge of the excised tumor, and the reason that's bad is because it could mean there are remaining cancer cells within the breast. In other words they can't be confident they "got it all."

So your daughter had a lumpectomy. Pathologists studied the excised tissue and found cancer cells at the edge of it - hence the positive margin.

Thanks for the well wishes, and good luck to you and your daughter!

with extensive DCIS a mastectomy is often warranted mostly because it is hard to maintain a good cosmetic result when a large amount of breast tissue is removed. I had 6x5x2 chunk removed but I have plenty of remaining tissue that you can hardly tell.

That being said, DCIS is not life threatening. DCIS is not invasive. However negative margins are needed because they believe 30-40% of untreated DCIS will develop at some point in the future into invasive cancer.

Many people, particularly younger women have comedo necrosis. My doctors all told me that comedo necrosis means much more to the pathologists than to anyone else. I had grade 3 with comedo necrosis.

Getting a mastectomy does not mean that you will never recur. I've read that the chance of recurrence with mastectomy is between 1 and 8%. Lumpectomy with radiation and tamoxifen is between 5-15%. But and here is the important thing, survival is the same with either route.

As for double mastectomy, there is no proven increase in survival by doing this. There have been no studies done to show any kind of benefit. The risk of cancer in an opposite breast is not very high.

People often choose bilateral mastectomy for cosmetic reasons (although reconstruction is not without its issues) or for peace of mind. But in reality, there is no evidence to support the peace of mind thing.

My advice would be to slow down and not make a decision until she has thought about all the options and talked to several doctors. DCIS can afford to take a little time.

I talked to my surgeon about this in detail. I told him I am going to make a bmx (I have string family history) decision on my time, not cancers. I need to take the time to really think it through and in the middle of treatment isn't that time. He agreed 100% with me.

Nothing to add in regards treatment--just a sympathetic ear. All my best wishes to your daughter! There's not always a right choice, just one we can live with.

Hi Noni, with regard to reliable information on the internet on DCIS, I would trust the National Cancer Institute's information. You can get the more technical version by stating that you are a medical professional. The other most reliable source for diagnosis and treatment of DCIS is the National Comprehensive Cancer Network (NCCN) guidelines for treatment. These materials are produced by the top MD's from NCI-affiliated institutions and teaching hospitals.

After my initial lumpectomy, I had no clean margins in any direction. I proceeded to have two more lumpectomies to achieve the clean margins and was successful with that. I also had the high grade DCIS with comedonecrosis.

Your daughter's situation is higher risk than most, in that she is only 36 years old. That is one of the risk factors for recurrence. If you want to get a very very general idea of her recurrence risk, you could go to the Memorial Sloan Kettering Cancer Center DCIS nomogram, and plug in her numbers. You might not be able to do that yet, because she hasn't yet achieved clean margins, but you could play with it--pretending that the margins would be achieved with one or two additional re-excisions, adding on radiation and hormonal therapy and see what numbers you get--you would also plug in her age, etc. This works for lumpectomies only, not for recurrence risk post mastectomy. My recurrence risk is estimated to be 12 percent (50 percent of which would still be DCIS recurrence), which doesn't seem too high to me, actually, but risk tolerance is a very personal thing.

Finally, I would absolutely trust her surgeon, and you are right, with large amounts of DCIS, IDC can show up in the pathology from a mastectomy. Of course, IDC can unknowingly be present after a lumpectomy, but that's the purpose of doing radiation.

Is she having an MRI before you make these decisions? I would think that would be important.

Hi noni, the NY Times opinion page (don't still have the reference) had a follow up opinion piece after the larger DCIS article (Narod study). The opinion piece said that anxiety and fear of recurrence are actually relevant and important in considering treatment decisions for DCIS. Of course, as I'm sure you have gleaned from all of the material you have read, there are real pros and cons to the move to mastectomy and reconstruction. Although I opted for lumpectomy (three of them), I was more fearful of reconstruction than mastectomy, itself, as I came close to needing an mx (after three lumpies). One of the things your daughter should do, is to have a consultation with a plastic surgeon, prior to making any decisions. She'll get an idea of what is involved. I was also fortunate to be able to see implants and to actually palpate the breasts of two individuals who had had the implants. That was very helpful in my decision-making process.

noni458, I had to have MX due to two unsuccessful lumpectomies with involved margins. Because I had large breasts, I chose BMX for symmetry and I had flap reconstruction. Reconstruction is a big undertaking and finding the right plastic surgeon is key (my local PS had injured several women in my hometown so I chose to travel for reconstructive surgery). One option is to get the MX and have reconstruction later when her children are a little older. She can see if reconstruction is important to her and have a much faster recovery now. Also, I had a complication with my flap reconstruction that required more surgery. I thought of my breasts as a "matched set" and if one had to go, they both had to go. However, that doubles the risk of complications. Having a unilateral MX means that one arm is still strong and recovery is much easier. Out of all my difficult decisions, I think that the only one I would do differently is the bilateral MX. Best wishes to your daughter with these difficult decisions! She is lucky to have such an engaged caregiver.