DCIS recurrence - so many questions

hopeful23

I had DCIS five years ago that was ER 20% PR- grade 2-3. The DCIS was completed removed with stereotactic biopsy as the lumpectomy pathology only showed ductal intraepithelial neoplasia 1 (atypical intraductal hyperplasia) and low risk ductal intraepithelial neoplasia (intraductal hyperplasia). There are no margins in the report, and I remember being told that margins were not mentioned because the entire lumpectomy was basically a margin. I also had whole breast radiation and have been taking Arimidex for the past 5 years. I had no doubts I had put this behind me.

At my annual screening mammography at the five year mark, I had microcalcifications that were biopsied. There are actually two small groups of linear calcifications 1 cm apart. They elected to biopsy the “more suspicious" grouping and leave the other (wish they hadn't done that). The pathology came back as DCIS ER- PR- grade 2-3.

The fact that this has recurred, or even perhaps is new, does this make me more likely to have another recurrence? Does mastectomy with reconstruction make it harder to monitor for recurrence than does just mastectomy? I will definitely be asking these questions of my surgeon, but would appreciate anyone's experience with DCIS recurrence/mastectomy/reconstruction. Thank you.

I have also moved since my last surgery and treatment. Can anyone recommend a breast surgeon/plastic surgeon at Dana Farber in Boston

Beesie

Hopeful, sorry that you've been diagnosed again. Is this DCIS in the same area of the same breast, i.e. most likely a recurrence and not a new primary breast cancer?

If this is a recurrence, I don't know if you have a higher risk to recur again. That's a good question for your surgeon and oncologist.

If this is a new primary, well... unfortunately all of us diagnosed one time with breast cancer, whether invasive or DCIS, are higher risk than the average woman (who has never had breast cancer) to be diagnosed again. If you've had two diagnoses, are you higher risk again for a third? I don't know, but logically if your breast tissue has shown that it's a friendly environment for growing DCIS cells, I suppose the risk might be higher.

As for whether reconstruction makes finding a recurrence more difficult, I think it depends on the type of reconstruction. I have a sub-pectoral implant, which means the implant is placed behind the chest muscle. This type of reconstruction is less popular today but was pretty much the only implant reconstruction option when I was diagnosed 15 years ago. The benefit of having the implant behind the muscle is that it pushes the muscle and skin tightly together, both on top of the implant. With a smooth, flat and taut surface on the reconstructed breast, any recurrence, whether against the chest wall or against the skin, will be quickly noticeable as even the tiniest of nodules. So certainly for this type of reconstruction, monitoring for recurrence is as easy as going flat, and a lot easier than after a lumpectomy. I can't speak for other types of reconstruction but hopefully someone comes by who can.

LivinLife

I'm not one of the people on this site with technical knowledge though I am not sure how they could be sure about margins when just doing a biopsy unless it was truly a surgical excision.... there will be others who will weight in on that before long.... Recurrences certainly happen... As far as lumpectomy vs. mastectomy - recurrence rates are supposed to be similar. Reconstruction can make monitoring a little trickier. I had a bilateral mastectomy and will not have to go through any imaging unless a concern arises. Those with reconstruction do undergo imaging because issues can arise under or even within the implant, etc. Again others will likely be along to weigh in on this too....

hopeful23

Beesie and LivinLife, thank you for your replies. This is a difficult time. I realize how fortunate I am to have a diagnosis of DCIS. But sometimes it’s just hard. It really does make a difference to be able to open up with others who understand. Thank you so much.

Beesie, this does appear to be a recurrence, but I will find out more. I think the radiologist said it is about 1-1/2” from the lumpectomy. How was the recovery from your reconstruction? Did you have a tissue expander?

LivinLife, the margins that weren’t mentioned in the report were from a lumpectomy. The stereotactic biopsy previous to the lumpectomy had apparently removed all DCIS that existed. I believe you chose not to do reconstruction? Can I ask what you considered to make your decision?

I think eliminating the new DCIS is going to be mastectomy, but the choice of reconstruction and what kind are going to be difficult. Having found myself in the smaller percentage who have recurrence after lumpectomy and radiation, I know I will worry about being in it again. I am trying to work through a few things. 1) I don’t want reconstruction to hide recurrence. 2) Will I be okay with a choice not to do reconstruction? I just don’t know. I think I might knowing it is something I could opt to do later, but I just don’t know. 3) I have read implants can be difficult with a radiated breast. But the flap procedures seem to be more difficult to recover from? I’m not sure how I feel about a longer recovery right now. I already feel a bitoverwhelmed 😕

Beesie and LivinLife, how did you make your choice? It must have been difficult for you, too.

LivinLife

hopeful...That makes sense with the lumpectomy (margins...)... I knew before even being diagnosed with DCIS that I would not ever undergo any kind of plastic surgery on my breasts. I am on scleroderma forums and have heard one too many stories of difficulties and infections that arise. I also am a frequent flyer at the local wound clinic - the last 2+ years that's only been about my fingers, hands and feet though these things don't get better - that sealed the reconstruction decision even more. Additionally it involves more surgery - in some cases quite a bit more - and time under anesthesia. More surgery was not really viable for me given healing issues. I also grow more concerned with each passing year with anesthesia though I've done well with it (other than extreme nausea). These were some things that figured into bilateral mastectomy vs. mastectomy too. I wasn't eligible for radiation due to scleroderma... so lumpectomy was never really an option. I've been so fine with going flat - I'm 58 1/2 tho and that makes a difference too....my days of dealing with bra discomfort are over. Hope that helps!

Beesie

Hopeful, for me there wasn't a choice. I would have opted for a lumpectomy but with 2 areas of high grade DCIS totally over 7cm in size, in a small 34B (barely!) breast, a mastectomy was my only option. But since I never wanted a MX in the first place, I just couldn't go to having a BMX, so I had a UMX. I didn't want to deal with being flat on one side and honestly, I didn't think that emotionally I could deal with such an obvious daily reminder of my diagnosis, so it was never an option for me to not have reconstruction. But my goal was merely to even myself out and to have something to fill a bra; I wasn't interested in any of the more complex reconstruction options that involved harvesting from other areas of the body. Implant reconstruction, while less natural in appearance, was fine with me.

I was lucky - I had no problems at all with the reconstruction process. I did have an expander and while some people find them to be uncomfortable or even painful, it didn't bother me at all. I was actually fascinated by the process through the whole thing. But not everyone is so lucky, and unfortunately there is no way to know in advance if you will breeze through reconstruction, as I did, or if you will have pain and problems.

Have you seen this thread? It's in the DCIS forum, so most of the answers are from those who've had DCIS, although a few invasive cancer patients popped in to comment as well - but some of the issues are different in the decision making for DCIS vs. invasive cancer.

Topic: lumpectomy vs mastectomy - why did you choose your route?

And again, to your first concern about reconstruction making it more difficult to find a recurrence, with sub-pectoral implants, it is extremely easy, possibly easier than going flat (because flat unfortunately isn't always flat) to find either a chest wall or skin recurrence. To me, that was a real benefit of this type of reconstruction.

hopeful23

LivinLife, so glad you were able to make the best decision for you and have done so well. Thank you for your perspective.

Beesie, I have felt the same way. I wasn’t sure about not having some type of reconstruction. I decided, for me, a step forward in reconstruction process made me feel better. So I am proceeding with placement of a tissue expander. I was having a big debate with myself over sub vs pre pectoral placement prior to PS consult. I really wanted prepectoral if the chance of finding recurrence wasn’t hindered. I’m not sure I am satisfied I know the answer yet. I am going to Dana Farber for surgery. The PS told me he hasn’t done a subpectoral implant in two years. And he told me prepectoral implant will not hinder finding recurrence. I have more questions about this, such as how the breast is monitored. In the meantime, I am having left mastectomy with prepectoral tissue expander placement. The PS says I have time to decide going forward, that the tissue expander can be in place for up to a year. And I could proceed with implant and decide to do DIEP in the future. So I am kicking the can down the road. Going to try to learn more about the different procedures and effective monitoring. It’s a good feeling, but also doesn’t feel like a total plan is in place which would bring some peace of mind. I’m sure I’ll get there.

Beesie

hopeful, sub-pectoral vs pre-pectoral is a difficult decision. It wasn't one that I had to make, since pre-pectoral wasn't done back when I was having my MX.

I think that the answer as to whether finding a recurrence is hindered by a pre-pectoral implant may be different from a patient's vs. doctor's perspective. A chest wall recurrence or new primary will not be palpable, as it would be with sub-pectoral implants, but would be detectable with imaging. Take a read through the following recent thread. While this wasn't the topic of this thread, the discussion did cover this issue. Read from my post of Dec. 5th 11:27 a.m. onward (mid-way down the first page).

Topic: largest cc for direct to implant?

LivinLife

It sounds like you are making wise decisions you are comfortable with, including giving yourself time to consider reconstruction options. Glad you are doing that! Do you have a surgery date yet? Sounds like you are comfortable with your surgeon too....?

hopeful23

Thank you, Beesie.

LivinLife, surgery is Dec 21. I am comfortable with my surgeons. My daughter is having her first child in 7 to 8 weeks. I am determined to make the best choices I can and move forward so I can be there to help her and enjoy my granddaughter. I’ve been looking so forward to her.

Beesie

hopeful, how wonderful! A new granddaughter is definitely something to look forward to, and a great incentive to move through this and move on!

LivinLife

Congrats!

hopeful23

Beesie and Livinlife, thank you!!