Just diagnosed with DCIS

Anonymous

Just diagnosed with DCIS

kimbamcg

Hi group,

I'm just diagnosed with DCIS in my right breast. I had a mammogram that had troubling calcifications, the new views showed a cluster of tiny specs which required a mamogram needle biopsy. The biopsy results required a surgical biopsy, met with surgeon and she was amazing. She recommended an MRI prior to having a surgical biopsy. The MRI showed two different spots on the right side and one on the left that needed to get a MRI needle biopsy. UGH - three pokes in one day - lead to one spot on the right side is DCIS and the left side is in need of a surgical biopsy. I see my surgeon on Wednesday morning and have been reading out on the internet.

I'm curious what individuals have done in this situation - I don't want to have to go through an MRI every year, have things be questionable and then have to get an MRI biopsy for it to come back if I only have a lumpectomy. Plus, I'm worried about the long term effects of the radiation. I'm thinking of getting a double mastectomy and reconstruction. My thinking is to get it over with and have a piece of mind.

I would love to hear others experiences with Bilateral Mastectomy with Reconstruction. Also, Does DCIS come back after mastectomies?

Thanks alot in advance.

Kimberly

MaryAnneThink

Hi Kimberley,

I have also been recently diagnosed with DCIS 3 weeks ago. My first thoughts were to get Bilateral Mastectomy with Reconstruction. I have a family history of breast cancer.

But my surgeon advised to do a lumpectomy. RT may or may not be required. He said he could schedule a lumpectomy within a week. I was confused but didn't want to delay getting the DCIS out. So I went ahead with the lumpectomy even though in my mind I wanted a Mastectomy. Was told one week later I didn't have clear margins, so I went in for reexcision. Was also told I would need RT afterall.

Now that I have more time to think about it and do my research and get over the shock, I feel like I may be ready to undergo a Bilateral Mastectomy with Reconstruction. Still feeling scared but will have to decide whether to go ahead with either Mastectomy or RT soon. One minute I definitely want a Mastectomy to reduce recurrence risk. The next minute, after reading about possible complications associated with Mastectomy and Reconstruction, I think maybe get RT and hope never to get a recurrence.

I am 47. Is it worth facing the complication risks of Mastectomy and Reconstruction to reduce the risk of recurrence? Recurrence may be in the form of a more aggressive breast cancer

Do let me know your thoughts.

Anne

Sourisou

Hi MaryAnne and Kimberly,

I was recently diagnosed with DCIS too; I was not given a choice since I already had rads to the chest so I had skin-sparing UMX (so far, very satisfied). Although I'm higher-risk, I wasn't ready at this time to remove both breast. Did I make the right decision? Hard to tell. But there is a thread in the DCIS forum I found to be very helpful to weight the pros and cons of lumpectomy vs mastectomy: https://community.breastcancer.org/forum/68/topics... On page 1 especially, there is a post by member Beesie that details a series of very specific questions to ask yourself in order to gauge what might be the preferable solution for you.

It's such a hard decision to make, and nothing is guaranteed; some people have great experiences with one method, others don't. Recurrence is always a possibility, although much lower with BMX. But I believe the more we know and the more we hear of other people like us, the better we can chose what is right for us. Hugs to you both!

MTwoman

kimbamcg,

"I don't want to have to go through an MRI every year, have things be questionable and then have to get an MRI biopsy for it to come back if I only have a lumpectomy. Plus, I'm worried about the long term effects of the radiation." If you did have an mri every year you would only have to get biopsies for any NEW findings(not sure why you think that is what you'd have, am I missing information? mammo is typical, sometimes with alternating 6 month mri for at risk dense breasts) Also, mri does NOT expose you to radiation, but strong magnetic fields.

Please do consider reading fully through Beesie's post as well as other surgery forum posts. MX (esp. BMX) is not without it's own set of risks and many women have healing difficulties, get LE or have other objectionable outcomes. It isn't risk free. Just so that you have all of the information that you need to make a difficult decision.

MBPooch

I was also recently diagnosed with Paget's and an underlying DCIS. I knew from the second I found out that I would do a BMX and immediate reconstruction. The time between all appointments and diagnosis were excruciating and I just didn't want to be looking over my shoulder and wondering what else may be lurking. I just turned 46 yesterday and have two girls and an amazing husband that this has also been hard on. I just knew that I would constantly be questioning everything about my breasts (any little pain, wondering if I felt something) if I didn't move forward with the BMX. It's such a personal and hard decision!

Ljoe-10

just got a hold of my MRI results. Have not gone over them with my dr. I can't figure out these medical terms. I have stage 1 breast cancer. Common ductal carcinoma.

Also debating between lumpectomy and double massectomy to not having to think about it returning.

Is it a guarantee to be free of breast cancer to remove the breasts?

Sourisou

Ljoe, although it reduces the risk, unfortunately BMX does not guarantee you'll be free of breast cancer for the rest of your life - there are quite a few members here that had recurrence after MX. It's almost impossible to remove all breast cells during surgery, even with the best surgeons.

Rrobin0200

DCIS grade 3 diagnosis in march '16, left breast. Without a doubt, a BMX with immediate reconstruction was done 3 weeks after my diagnosis, and I don't regret anything. This was strictly for my peace of mind, knowing that I did everything I could at the moment. While it's true that a mx can't guarantee a recurrence from happening, I personally felt in my heart of hearts that if I only had a lumpectomy, I would have questioned the "what ifs." I Ann a worrier by nature, so This decision fit me and my family.

PNWBCHgirl

I had DCIS grade 3 in right breast fall of 2014 , had lumpectomy couldn’t get good margins and ended up with unilateral Mastectomy and reconstruction. No regrets went with a flap procedure and everything went well. In my final surgery had a reduction to balance the left with the new breast, had left mammogram just three months prior to reduction surgery, My PS sent the fragments from the reduction to Pathology and had to tell me at my post op appt I had DCIS i need the Left as well that was not found in 3D mammo or MRI . So I had a Mastectomy on the left with reconstruction in February 2016. No. Regrets here. Thankful It was caught very early by my PS.