Extenisve DCIS plus multifocal microinvasive ductal carcinoma

Bravemama34

hi ladies.  i was diagnosed less than 3 mo ago and since then had bilateral mastectomy and i'm in middle of chemo (TCH).  i had a palpable lump on my left side but had just finished breast feeding a few mo prior so i thought it's a blocked duct but eventually couple months later i got a mammogram which showed extensive multifocal DCIS with possible microinvasion and final path after bilateral mastectomy shows multiple areas (5-7?) of microinvasion each less than a mm with 1/4 nodes showing micromet.  her2 +++

i am wondering if there is anyone else out there with extensive DCIS (almost 14cm on the left and 0.2cm on the right) and multifocal microinvasice ductal carcinoma.

i have a two year old and was trying for the 2nd one when this happened.  i understand my diagnosis is very rare.  i have seen the other thread on micoinvasive with her2 pos but i mostly see one or two microinvasions and mine is a lot more and i also have never seen anyone with such extensive DCIS (14cm, grade 2 and 3).  i am very worried about my prognosis, recurrence and overal seeing my son grow up.

 

 

JEA16

hi mama!

Wow, I never expected to see anyone with a situation that so closely resembled mine...at the same time, no less! You are definitely not alone. I haven't posted a lot, though I do stalk these boards regularly and they have been a huge source of information and support. Still, I haven't seen someone with such a similar dx!

I was 34 when diagnosed and my youngest was only just about 17 months old. I had also just finished breastfeeding a few months prior so the docs were quick to write off the VERY large palpable lump. It took about a month to get my appt with the breast surgeon who did the biopsy and to confirm it was cancer. At the same time, my genetic testing came back positive for THREE mutations - BRCA1, TP53 (shortly thereafter I was dx with LiFraumeni based on family history and genetics...SUPER rare), and a third one of uncertain significance. I still have yet to find someone that can relate to that genetic soup, lol.

I had my bilateral mastectomy on 9/20 and final path showed the tumor was 11cm+, mostly DCIS with many areas of microinvasion <1mm (they didn't even count them all, there were so many) and an area of invasion that was about 3mm (all grade 3 with comedonecrosis). My tumor involved the nipple and went almost to the chest wall...and had lobular involvement. Mine is ER-/PR-, but Her2 +++ with "highly unfavorable" Ki67. It's hard to find a lot of reliable information on this situation since it's so uncommon, but from what I've been reading the biology of this booger is pretty aggressive. I too have worked myself up worrying about my prognosis and the ramifications of all this with 3 little kids...but i just keep telling myself that we caught it early...and I WILL be dancing with my boys at their weddings.

I'm so sorry that this disease affects anyone, but it seems particularly unfair for people so young. I'm sorry that we have to be in this together, but for what it's worth I can relate, and I am here if you need to vent or just need some support!

Bravemama34

i'm sorry you are in this situation. i'm glad however that you posted this so we found each other.  we do have very similar diagnosis.  even our surgeries are a couple days apart.  are you done with your chemo? will you be doing any radiation?  how are you doing with the kids.  it's so hard to have a toddler in this situation.  were you offered any imaging?

JEA16

wow, just realized we're even about the same age. Crazy! How are you doing with all of this? When are you done with chemo

I'm doing weekly Taxol x 12 + Herceptin...my fifth infusion is in a few hours. Just about halfway done with the Taxol. I've been having reactions to the infusions, but not severe enough to stop yet. So it's been a bit challenging, though still doable. It is kind of harder having the kids, especially the toddler...and the holidays. But luckily I have a fantastic support system here and my husband has really been great. I think the hardest time so far was after the surgery. Since I had immediate reconstruction, my PS had limited me to lifting no more than 5lbs for 6 weeks. This meant lifting my youngest (and getting him in/out of his crib) was a strict no-no. We spent a lot of time on the floor lol. Plus a lot of help from a lot of people! He had a really hard time with it at first, but eventually adapted. Honestly I feel like he might be better for it as he is more flexible about things now. All of them are doing pretty good with all of this. I save my energy for my family and they definitely motivate me to get through this as positively as possible.

Sometimes at night I go a little of the rails and my mind goes to that dark place. I did have a major meltdown at a wedding 3 days before my surgery. Mother-son dance. With 3 boys I always got a little emotional during those, but it changed for me in that moment and the thought that I could miss that for my little guys tore me up. What has really helped me during those times is reminding myself that none of us are really promised tomorrow and living each day worried about something that may not even happen will just rob all of us of the little joys that fill each day. I know it's hard, but it does take the edge off it a bit for me. Also, my aunt had breast cancer at 28 (just after breastfeeding also...hmmmm) and my dad had lymphoma at 26 - both of them are alive and well today!

I have not been offered any imaging in regards to the bc. I am going to have a full body screening MRI when this is all "over" (and my expanders are out), but that is only offered to me because of my Li Fraumeni and high risk of additional primaries. They all agree that I should get through this bc stuff first though. Aaand since I have to watch my exposure to radiation, a CT/PET is not recommended for screening. I'm not doing radiation for that reason also. Since my cancer was HR-, hormone therapy isn't planned either. So surgery and chemo/Herceptin are all I have in my arsenal. Hopefully this should do it! What about you?