Diagnosed with DCIS

rovnic13

Hi, I'm 49 years old, have a phenomenal, caring, supportive husband and 3 beautiful children.

On 6/24/15 I was diagnosed with DCIS and I'm so scared and numb. I know I have several options. I spoke to a Breast Surgeon already and will be having a 2nd opinion with another one on July 16th.

I am gearing towards a double mastectomy because I am afraid the cancer will come back.

Has anyone with DCIS had a double mastectomy?

Thank you

ddfair

Grace,

I had a double mastectomy after going through 6 lumpectomies for dcis and malignant phyllodes tumor in a 10 year span. The mastectomies were two separate operations about 18 months apart. The second mastectomy was done for symmetry. All the unilateral mastectomy gals in my local breast cancer support group wish they'd had both removed. It's so hard to get bras and fake boob to fit right and not creep up into your clavical.

De

rovnic13

De,

Thank you. I'm having a hard time processing all of this.

RAK1

Hi Grace,

I'm sorry you are going through this, but you will make it like we all have.

I am 51 years old mother of four. I was dx with DCIS in Dec.

I had a lump removed when I was 34. I chose to have a double mastectomy.

I had a skin and nipple sparing mastectomy with reconstruction. All cancer was removed. Tissue expanders were placed under

the pectoral muscles. They were filled to 400cc when I had the Mx. Then I had what was called rapid fills.

100cc and two weeks later another 100ccs. Three months later, I had round silicone implants 600cc.

If you would like to know anything else feel free to ask me. You can also PM me.

We all understand how frightening this all is.

I received so much support from the ladies on BCO. You will find the same.

Hugs, Robin

 

rovnic13

Hi Robin,

Thank you.

I've been researching so much...my brain is getting fried. I have a consultation on the 13th with a plastic surgeon.

Hopefully on the 16th when I meet with the breast surgeon for my 2nd opinion in NYC she will suggest a plastic dr. for me.

So overwhelming picking and choosing a doctor, and procedures.

So sorry you had to go through with this too!

Grace XO

RAK1

Grace,

Where are you located? I also saw had a second opinion.

Robin

rovnic13

Robin,

I live in Rockland County. 25 minutes north of NYC.

Grace

Eee3

grace,

I was diagnosed in May 2015 with dcis. I went to two separate breast surgeons and both recommended a double mastectomy. I had dcis in one breast and the mri found additional suspicious areas in left and right breast that came back negative in biopsy. I had a double mastectomy June 9th with immediate tissue expander placement.

My tumor was near the chest wall and I am young so the doctors feared radiation on me, hence, the double mastectomy. I do not have a single regret with my choices. Making the decisions seemed to be the hardest part for me. Once I had a plan in place, everything moved pretty fast. I will say that after my mastectomy that they found a second area of dcis that had not been found during mammogram, ultrasound, or mri.

You have to weigh all of your options and do what is best for you. This site has a lot of wonderful posts and information.

I hope everything goes smoothly for you and that you find comfort in your choices!

rovnic13

Eee3,

All of this is just so overwhelming but I am getting some comfort from all of you.

I have decided to have the double mastectomy. Once I go for my 2nd opinion I will decide on the surgeon.

Thank you so much!

Grace

MelissaDallas

Grace, just know that you can still have a recurrence, even with BMX. Having the mastectomy only has a slight recurrence reduction over lumpectomy. There are other reasons to want the mastectomy but I wanted to make sure you understood that it is not a guarantee

ddfair

Grace,

Are you thinking of having reconstruction? I know how overwhelming all of this can be. It's like being dropped off on a new planet. You will learn to speak a new language. You already learned your first word.....dcis. It will get better. Does your hospital offer a cancer nurse navigator? If so, that will make things so much easier.

Hugs,

De

RAK1

MelissaDallas, good point to add!

There are no guarantees! You make the decision that is best for you.

I have no regrets with my choice. The surgeons won't know what is going on inside until they get in there.

Had there been any signs of cancer in nipples they would have had to go also!

Grace, there is much for you to learn, but that is a good thing!

I read everything I could because I wanted to make the most informed decision I could, and I did!

I pray you find support, comfort and courage here!

Most of us are willing to share.

As I said before if you want pictures or have any other questions you can PM me.

Love, Robin

rovnic13

Hi Ladies,

Yes, I do know there are no guarantees.

Yes, I have decided to have reconstruction too.

I work in the hospital that diagnosed me. Yes, there is a cancer nurse navigator. Just found that out today.

Learning a little more each day.

Unfortunately, there is nothing I can do until I consult with the dr. in nyc on the 16th. So I've been researching a way.

Thank you so much!!

cheddiecat

Hi Grace!

It's overwhelming to comprehend all of the new information coming at you. So glad you are going for second opinion.

Like you, I was diagnosed with DCIS (3.1 cm grade 3) on right side following mammogram and biopsy. Met with a surgeon who planned a lumpectomy followed by radiation and anti-estrogen therapy. Our family has a very strong history of BC, so decided to go for 2nd opinion, and in the end was glad that I did. It took over a month to get an appointment at the facility, which worried me a bit. They over-read all my test results and requested original pathology slides before my appointment with BS who told me their analysis was that the micro-calcifications spanned an area 4.6 cm. I asked what would have happened if I had just proceeded with the lumpectomy of 3.1 cm area and he said the surgeon would likely not have achieved clean margins, which would have required another surgery. He also noticed that a magnification view mammo had not been done on left side, so sent me for that . . . and the waiting began before getting the ok to change and you get that sinking feeling in the pit of your stomach . . . . then the call-back for ultrasound . . . . scheduling for biopsy . . . and waiting for results in 7-10 days. I had an appointment scheduled the next week with PS (at same facility) and while in the waiting room, BS's nurse found me and called me back to advise that pathology report came back early and that I had DCIS (1 cm) in the other breast as well. So what would have been a discussion about a lumpectomy turned into a conversation about options of having lumpectomy with some cosmetic adjustment due to large area of tissue to be removed on one side with lumpectomy & breast reduction for symmetry on the other followed by lots of radiation OR skin-sparing mastectomies with reconstruction.

Anyway, my best advice is to get any testing you can because it provides you with additional information from which to form questions for more in-depth answers from your doctors so that you can make as informed a decision as you are able. I also had genetic counseling and testing and am positive for a lesser-known genetic mutation that causes BC in 1 of 3 carriers (so now the family knows a little more also, though the results are individualized).

Also, be sure to take someone with you into your appointments. Even after I had made my treatment decision of bilateral mastectomy, I had second thoughts and doubts about whether I was over treating DCIS, and my husband would remind me of things that I forgot [momentarily] and I would re-think everything through again and reach the same conclusion.

Cancer is a terrible thing to have enter your life and it's an agonizing decision to have to make. Your personal feelings and emotions come into play as well and you're the only one who can decide what's "right" for you.

I wish you all the best in your journey.