Newly dx DCIS...or more?

sierramtngirl

I'm 39. Three kids, ages 5, 3 & 11 months. I'll try to keep my background story short: I felt the need to get a mammogram (not sure what made me feel the need, but anyhow). No one wanted to do it because I was (am) still nursing the baby. Fought for one, got it. Asked for more views, found a group of microcalcifications measuring 2x5 cms. Radiologist ordered an ultrasound immediately, And no masses were seen on ultrasound. Stereotactic biopsy done and found DCiS, grade 3.

They called me and were so excited to report dcis. But now, after reading here, I'm terrified of idc being found when I have my bilateral mastectomy here soon, especially since I had such a big group of calcifications. The rational part of my brain keeps repeating that no masses were found on ultrasound, but I just can't help that I'm so scared of IDC being found too on my final path (along with the lymph node biopsies, etc).

Anyone have anything to share, one way or the other? I'm a mess. I wish my surgery were tomorrow

LAstar

My DCIS was grade 3 and was stem-to-stern in my left breast, but no invasive cancer was found. I'm over 5 years out with no problems (other than a complication with my reconstruction). Suspicious spots on the other side ended up being nothing, so I may have opted for unilateral MX had I known. I think the majority of cases are like mine, so I hope my experience encourages you! Waiting is the worst part -- recovering from surgery is not a picnic but it's behind you and you have the information at that point so your mind can rest a bit. Stay busy (which is not a problem with 3 kids!) and the time will fly. Good sweaty core exercise will help when you are getting out of bed post-surgery. Sending wishes for a smooth recovery and a clear pathology report!

gladyscat

Hello

I think I may be in a similar situation as you and I know how you are feeling. I was diagnosed with DCIS 1.2cm x 2cm and then following the MRI the area of concern was 7 cm x 4.6cm.I fund this very shocking and still cannot get my head round. I am having surgery on 22 November and have opted for mastectomy although surgeon offered lumpectomy, I knew that I would never settle if I had gone for that option.

I am worried as hell that they will find something else and my final path report will be that it has spread and I just do not know how to stop myself thinking of the worst possible senario. When I asked my breast surgeon on monday about possibilities of there being something else all he said was that there could be, but that it looked like DCIS - that was no help at all for me and I wishes I had never asked.

When is your surgery? I just want mine over and done so that I can then face the next challenge.

I am so sorry that you are facing this scary time too, but please message me if you ever feel like a chat.

best wishes with everything

MTwoman

sierra, I posted my (sort of) similar story you in your other thread. https://community.breastcancer.org/forum/5/topics/859628?page=1#post_5075031

Rrobin0200

definitely was in the same boat with you. Call it divine intervention, call it intuition, call it what you want, but I demanded a mammogram as well. I was 37. High grade DCIS was found in left. I was hysterical. Time Between the diagnosis and my BMX/reconstruction was 3 weeks. Waiting sucks. There's no way around it. My lymph node looked suspicious, but final pathology indicated nothing invasive. So what I'm trying to say is, your feelings are normal. Try to busy yourself with your kids. That's what I did. Ask your doc specifics on how's she will deliver The final pathology results to you. Will it be over the phone or at your follow up visit? Can you push up the BMX? Probably not, but worth the ask? Don't Be ashamed to ask for a xanax either

sierramtngirl

Saw it, and thank you. I love your anxiety post....super helpful.

sierramtngirl

Thank you all for your kind words. I'm so thankful for the support I've found here. I have to take the site in doses, because I get overwhelmed easily, and it makes my anxiety worse. I'm so emotional, as I'm trying to work on weaning my 11 month old. I'm so sad about it. And people in my real life say stupid stuff--- "well, the baby has had enough, he will be fine. When your boobs try to kill you, they have to go" (I actually had someone say this exact thing to me).

I don't have a surgery date yet. I have to wait until I see the plastic surgeon on Nov 1 and then hopefully, I'll have a date. In so many ways, I just want it done, and in other ways, I know it gives me a few more precious minutes of nursing with my little guy.

I will ask about how my final pathology results will be given. How long does it typically take? I started on Zoloft per my primary care's suggestion to help me ease through my hormonal transition as well (stopping breastfeeding). I'm just really having a hard time with all of it. Thank you all so much. x

Kacykw

I felt like I was reading my own story here. I was diagnosed with high grade DCIS in early October. I was nursing my 11 month old twins and had a horrible case of mastitis that landed me in the ER. It did not seem to heal. I am positive for the BRCA2 genetic mutation and my mother died at 43 of breast cancer so I went in for a mammogram. I am in the process of weaning my boys. Which has been BRUTAL, emotionally, physically and hormonally. Not to mention my recurrent mastitis situation. I am one of the few people that know exactly what your are going through. I am scheduled for a nipple delay procedure 12/21 and a double mastectomy 1/17. The plastic surgeon said that he would like to do the nipple delay for several reasons one being that he can check and see that the milk ducts have closed which can take months . If they are not closed before surgery that can raise the risk of infection. I just want you to know I know exaclty how you feel. Being forced to wean because of breast cancer. I am also very worried that the mri and mammogram prognosis could be worse because they were taken while lactating. Very little information out there about breast cancer diagnosis while lactating.

sierramtngirl

yes, I just found out about the milk duct thing too. My surgery isn't until Dec 13 because of it. I'm worried about them finding something scarier too because of breastfeeding. But, I've been told that MRI is very sensitive, so maybe just try to focus on that? I'm so sorry that you're dealing with the same. Hugs mama, so many hugs. Please keep in touch.

Catgal63

Hi...I was just diagnosed 10/26 with DCIS.  I had calcifications in my mammogram, had 2 (sites) biopsies of the right breast.  One site came back with noninvasive DCIS and the other, invasive mammary carcinoma.  I do not understand any of it as I have never gone through anything like this nor has any of my close friends or family members.  So I am learning as I go.  I am scheduled for an MRI on Thursday and then to see the breast surgeon on Monday to discuss treatment options (?).  I do not know what to expect.  I just know I am scared to death.  If I have noninvasive carcinoma, how can I possibly have invasive also? I do know they told me it was grade 0. I am ER+ and PR (weak) +, HER2-.  I do not understand what that means, although I have researched it repeatedly.  I think my brain just does not want to comprehend this AT ALL.  I am having issues sleeping at night, and I am still very weepy any time I speak about having breast cancer.  I have a lot of people praying for me, but no one I can really talk to about it and get any insight.  I am seriously thinking of asking my physician for a Rx for Ativan or something.  Except I am trying to be strong...sometimes I am and sometimes I am not.  It is just so overwhelming and I cannot stop thinking about it.  

I don't understand why if someone has it in only one breast, why get a double mastectomy? Does DCIS tend to recur in the opposite breast? 

The last MRI I had was for a shoulder injury and I found out during it that I was somewhat claustrophobic...it was awful.  How bad is the breast MRI? I was explained the process of it...but I would rather hear it from someone who has had one.  

It is awful needing to talk to someone about this, just to process, but every time I speak of it, I start bawling.  How can anyone make any decisions under these circumstances? 

Thank you for listening.  I feel better just getting it out.  

Rrobin0200

catgal, your feelings are perfectly normal. I went through the same emotions myself.... I can honestly say that over half of the women and men on this site have gone through the whirlwind as well. The first few weeks after diagnosis are the hardest. My advice to you is to make sure someone close accompanys you to your doctor appointments. That way, there's an extra set of listening ears and also to ask questions that you may have not thought of previously. Once there is a plan, you will feel more in control. It'll never get "better" until you receive remission, but a plan makes it "easier." And as for a BMX, I had one for peace of mind. I just wanted to take the most proactive choice that was offered to me. I have no regrets, but this choice is not for everyone. You have to figure out what's best for you. While a BMX doesn't fully eradicate the possibility of recurrence, I choose it bc I wanted to eliminate some fear. Best of luck to you. Will continue to think of you.

Alisoncarol

Hi,

I too just joined up this week. I had dcis and s dmx in 2015. It may seem aggressive to some but mine was so wide spread a mastectomy was the only option for my left breast. I figured I would play it safe with the right breast too. My margins did not come back clean do my bs went back in to get some more.

It all did and still does seem overwhelming. No one can tell you how you will feel but just know the decisions you make are “right" for you.

The breast mri for me was not bad . I was in the open laying on my stomach. There is an opening for your breasts to drop into. Can the dr. give you something to calm you before hand?

Judeshome

Hi Catgal, I am also newly diagnosed with DCIS after a whole slew of diagnostics. Mammo,ultrasound,core needle, MRI which I had two weeks ago for the first time and an excision biopsy four days ago which shows low grade DCIS scattered through my left breast. I will probably end up having a mastectomy on my left breast but have an appt with my BS on Friday to discuss options. My right breast has no issues as far as I can tell and I hope to keep it. I am also claustrophobic but didn’t have a problem with the MRI as your head is sticking out of the tube. This is what happened.......I arrived about 9am and had to change into loose cotton pants and a top like they give you for a mammogram. I went for a bloodtest to check kidney function was ok because they give you an IV so the contrast fluid will give them a better look inside your breast. (If you have kidney issues they won’t give you the contrast liquid). This didn’t hurt at all and I wasn’t aware of the fluid going in during the MRI. I then lay face down onto a sliding platform with my face on one of those padded face rests they use for massage. There was a little mirror so I could see out to the technician area, and they slid the platform back into the tube...you can’t see this happening as it is behind you. They gave me a warm blanket and a button on a cord to press if I had distress. They said if I moved they would have to cancel the MRI and I would have to come back on another day. The main discomfort was the noise for which they give headphones, they will play music through them but the banging of the magnets is so loud you can’t hear anything through the headphones, however, I was glad to have them muffle the loud noises. The other discomfort was the pressure on my lower ribs for which they gave some rubber padding which made it easier although I couldn’t take deep breaths easily during the procedure. Your breasts are hanging down into a cavity....I am convinced that if men had to have mammo MRIs this machine would have been designed differently!! Anyway, not too bad, I was extremely nervous and found that focusing my mind on soothing images and imagined sensations was extremely helpful. I imagined the repetitive stroking of my lttle black cat ‘Liddy’ on my lap. Also imagined singing my two year old Grandson to sleep in my arms. It was over and I was done...I am sure you will manage this, I think of each procedure as a step on the way back to sanity. It is the feeling of unreality when you have your diagnosis...is this really happening to me?? Moments of clarity and then the full realization over and over, at least that is how I feel. I will keep you in my thoughts and may good energy surround all of us who are going through this and make us stronger and more empathetic to those who experience adversity. Peace and blessings, Jude

Catgal63

Thank you so much for you replies.  I will just be glad to have the MRI over and see the BS to find out what my treatment options will be.  They told me I was grade 1.  Is all DCIS stage 0? I am hoping for just a lumpectomy, but trying to keep an open mind.  Chemo and Radiation scare the you-know-what out of me...Will I need to see an oncologist? I just don't understand the process, never having known anyone close to be that has been through this.  My bf and I were talking today and I told him I felt like maybe they had someone else's results...Could this really be happening? But I am able to talk about it a little more without breaking down, so I guess I am starting to settle into whatever it is to be.  Peace to all of you also.  I wish us all great strength and good positive vibes. Diane

Moderators

AlisonCarol and Catgal73-

We want to welcome you both to our community. We're so very sorry for what has brought you here, but we hope you find this to be a welcoming community, and that you find the support you need as you begin down this road.

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