Decisions for Treatment of High-Grade DCIS

Only you can decide what's best for you. I did, however, make the same decision. I had bmx a year ago. My pathology showed abnormal cells throughout my healthy breast. I know it was the right decision for me. My genetic counselor told me that given my family history, I have some gene, they just don't know enough about it yet. Good luck!

I was diagnosed with dcis in right breast in dec. 2011. I had lumpectomy, radiation and tamoxifen. Then in dec 2013 it back in both breast s. Now I'm having double mastectomy with tram flap. I wanted diep flap but dr. Might be able too. I hope I didn't want to long. My surgery is April 10. I feel I should of maybe had a double mastectomy from the beginning because now it's to reconstructs he radiated breast. 

I had BMX and don't regret it. My reconstructed breasts are symetrical and all my surgeries went well. I know that I did all that was in my power to remove the cancer. I would have been uncomfortable with anything less than BMX. I wish you good luck. Move ahead with confidence, you will do fine. 

Lots of high grade DCIS here, plus a microinvasion of IDC.  After an MRI showed my other breast to be clear (despite a history of fibroadenomas, cysts, fatty necrosis and just a few weeks earlier, a biopsy for calcifications that turned out to be benign), I opted for a single MX.  I would have much preferred to have a lumpectomy + rads but I didn't have any choice on the cancer side because there was so much DCIS in my small breast.  But I figured that the clear MRI was a sign that a single MX would be sufficient.  

8 years later, my 'good' breast is still good.  I don't know what the future holds but I'm glad that I didn't allow myself to get caught up in the fear of my BC diagnosis and have more surgery than I needed.  The MX surgery and reconstruction itself was easy for me, but living with a MX and a reconstructed breast is not nearly so easy - no major issues but lots of little issues.  What I found is that it takes a good year or even longer after the surgery/reconstruction process is complete before I could really appreciate what it's like to live day-to-day with my new body.  For me, the aches and pains associated with having implant reconstruction are sometimes not noticeable, but at other times are really bothersome, even 8 years later.  And for me, the loss of sensation is a big deal.  So I am very glad to have one natural breast. Hopefully my 'good' breast remains 'good' for all my life, but if not, I will deal with whatever the future holds in the future. 

So definitely no regrets here.

Angela, I'm sorry to hear about your recurrence.  It is my biggest fear.  I have Stage 0, high grade 3 necrotic comedo type with HER2 positive, ER- PR-.  Had surgery, all went well and I am going on week 3 with the Canadian protocol of radiation which is a total of 21 treatments.   I know nothing we do makes a difference... does cancer run in your family and were you you  HER2neu positive ?     One doc wants me on tamoxifen even though I do not have ER+ tumor - but I'm glad I read this post b/c apparently you did all the right things and it still recurred.   From what I read, some cancers are resistant to tamoxifen - I hope your doctors are looking in to this because all of us are researching and hopefully doing what we feel is best based on the professional's opinions and from our own research.  I wish you the best of luck.  Hugs, Jazzing

I also have High Grade 3 DCIS with Cribriform and Comedo cells in my right breast. I dont know the biomarkers and my doctor says its not important with pure DCIS, but I would like to know (even if no invasion). I was diagnosed on 4/17/2014 and my surgery (BMX w/ reconstruction) is on 5/20/2014. I was advised to have a mastectomy because of location and size of my breast. I am 42 and was about to start IVF....so I am hoping to get pregnant at some point....which was another factor is choosing a BMX (not being able to be tested while pregnant). I hope to have my egg retrieval about a  month after my surgery.

I have several questions relating to recurrence and pregnancy. I read an article on LBBC.org where Dr. Powel Brown said that HIgh Grade 3 DCIS has a 60% chance of recurrence regardless of Mastectomy or lumpectomy. Have your doctors given you that same statistic? For those with Mastectomies, do you get Breast MRI's each yr instead of mammograms? I feel like I am always going to live in fear now....

My doctor said I need to wait at least a yr before getting pregnant. Wondering if any of you have heard to the contrary with pure DCIS...no chemo/radiation/HRT after. Obviously, I dont know if I have pure DCIS yet....but here's to hoping.

And realistically, how long will it take to recover.....will I be able to go back to the office after 2 weeks?

The numbers Dr. Brown gives are disturbing but not consistent with the body of literature on DCIS. As he does not give citations for his numbers and is quite vague, e.g. "after treatment", it is hard to evaluate his information. 

Before his estimate of 60% recurrence rate for high grade DCIS, he gives an estimate of recurrence rates for DCIS in general of 20-40% "with treatment", an estimate that is consistent with data in the literature for patients who have a lumpectomy and no other treatment. It is not consistent with data for patients who had mastectomy or lumpectomy + radiation therapy + tamoxifen (if hormone +). Grade makes a big difference in how fast a recurrence is likely to occur but makes little difference in the ultimate recurrence rate over time. I question where he is getting his numbers and would need to see citations that support them before I would believe them.

I know it is hard when you are dealing with decisions now but Dr. Brown really seems to be an outlier who has not shown the basis for his estimates. 

infobabe...I don't think that site is accurate for DCIS.

It says that I have over 60% chance of spreading to the nodes. I specifically asked my doctor who is the head of breast cancer surgery at Mt. Sinai and came from Sloane Kettering. She said statistically there is a 10% chance of DCIS being invasive once pathology is done. She then said of that 10% there is a 10% chance that is will spread to lymph node. 10% of 10% is 1%. Even if underestimating...I don't think DCIS w/ even micro invasion has a 60% chance of spreading to the lymph node.

I think that site is for invasive breast cancer and not for DCIS.

Scared42, I wanted to weigh in on the IVF. My hormones were really unstable for about 8 months after my BMX. My cycles ranged from 3 to 6 weeks and I had a lot of mood swings.  I think my body was producing more estrogen than my body could process after my breasts were gone.  Your doctor may want your hormones to stabilize before IVF. I was 42 at the time.  My cycles returned to normal within a year.  

Are you having reconstruction?  Some people feel much better after 2 weeks without reconstruction,  but 3 or 4 weeks maybe be a more conservative number to plan for and longer depending on reconstruction.  

The Sloan-Kettering nomogram does ask about grade,  but lumps 2 & 3 together.    I think they figure that once the DCIS has been removed, it isn't relevant how big it was originally - only what the remaining margins are.

What I like about it (as opposed to cancer math) is it tells you your risks of local recurrence, which for pure DCIS is probably a bigger concern than metastases, anyway.

Hi,

I have been diagnosed with high grade DCIS 4.5cm. Genetics came back as positive for Brca 1 genetic defect, Strong family history.My sis is going through chemo right now. Have bilateral mastectomy planned and planning on getting rid of my ovaries. How are you doing and how have you got through this?

Joobs