Invasive lobular, invasive ductal, plus microinvasions

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commander
commander Member Posts: 10
edited January 2016 in Just Diagnosed

After extensive screening and excisional biopsy, I received a dx of invasive lobular carcinoma, 16 mm, and invasive ductal, .8 mm. Also "multifocal microinvasive lobular carcinoma" and extensive and multifocal LCIS. All ER/PR+ and HER2-.

No lymph node removed yet or Oncotype test done. My surgeon is recommending bilateral mastectomy and flap reconstruction. I'm meeting with oncologist this morning. Appointment with plastics is not set yet.

Cancer diagnosis is no surprise because I had LCIS dx in 2006 and several times thereafter.I feel like the shoe has finally dropped.

I'll need a lot of information on reconstruction choices. The flap procedure seems very extensive and recovery seems rough, but better in the long term.

My sister is still in treatment for ILC. Stage I, but she received chemo due to oncotype score of 28. She had a very rough time with chemo, and developed blood clots in both lungs.

Telling my kids was the most difficult. I'm trying to be optimistic, but it's draining. I guess I'm reaching out for support.



Comments

  • Affinity42
    Affinity42 Member Posts: 28
    edited January 2016

    Commander,

    I'm still waiting for biopsy results. I just wanted to say hello, I'm sorry you're dealing with this, and I'm sure the veteran BC warriors on this site will provide advice and support to you moving forward. Be kind and gentle to yourself.

  • sgreenarch
    sgreenarch Member Posts: 528
    edited January 2016

    HI, just wanted to pop in to tell you that I was dx at age 49 in 2010 with multifocal ILC in the left breast, sizes similar to yours. It is now 5 1/2 years later and I'm fine. Had unilateral mx and never did do reconstruction. (Know that you don't have to rush into that decision.) You're in the hardest stage of this...once you have a plan it will get better. Use anti anxiety meds if you need them, and do be gentle with yourself. There's a lot of info on the ILC boards, and nice support. many good people here for you...

  • Beatmon
    Beatmon Member Posts: 1,562
    edited January 2016

    there is certainly a lot to be said for a little help from anti anxiety medicines. Some days you just need a little help

  • Midge70
    Midge70 Member Posts: 1
    edited January 2016

    Thanks that means a lot. I'm hoping that it hasn't reached the lymph nodes yet.

    My op is next Tuesday so will know more then. Things have moved very quickly since my first consult. I'm not sure whether to opt for a full mastectomy and possibly no further treatment or the lumpectomy with the follow up radio therapy.

  • windingshores
    windingshores Member Posts: 704
    edited January 2016

    It's a hard balance with kids, because if we act too cheery they don't buy it, and if we act scared or sad it upsets them.  Things will get better and they will see that themselves.....In the meantime a little benzodiazepine and Netflix can really help :)

  • Trvler
    Trvler Member Posts: 3,159
    edited January 2016

    You can go over to the reconstruction part of this board to get more info on that. There is tons of great info. My dx is pretty similar to yours. I had DIEP and I was warned that it was a hard recovery by my recovery was not that hard or painful. It is essential that you get the best PS you can find. I was referred to 2 of the 'top' guys in the Chicago area and I am glad I didn't use either of then. The first told me he couldn't make me as big as I was (which was a B). He didn't inspire a lot of confidence so I made an appointment with a second doctor. I was told by the ladies on BC.org to ask what his conversion rate was. Had a long phone chat with has PA and they told me it was 85%. I checked on Askthedoctor.org if this was ok and he say NO! He said zero. What that meant was what percentage of the time they go from DIEP to TRAM in the OR. You don't want TRAM unless absolutely necessary because they cut muscle and that is what can make the recovery hard and painful. So upon further research, I was decided to go to NOLA. (AKA Center for Restorative Breast Surgery). They are one of the top places for this surgery in the country. It turned out the doctor from Askthedoctor.com was from there and he was my second surgeon. They use two PSs there instead of a PA to get you off the table sooner.

  • Trvler
    Trvler Member Posts: 3,159
    edited January 2016

    Sorry. I hate typing longs posts on here because it goes too slow and I type fast. Where do you live? Have you been to the recon area yet?

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2016

    I had left DIEP and it was easy for me. I really was not in any pain. Some mild discomfort alittle. I was back to things in 3 weeks. I went back to work at 6 weeks. Both sides might be harder though.

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Midge70, welcome to Breastcancer.org. It is indeed a very difficult decision. Perhaps this section could help:

    Mastectomy vs. Lumpectomy.

  • commander
    commander Member Posts: 10
    edited January 2016

    I live in the Portland, Maine area. Not all options are available here for reconstruction. I will be going to Dana Farber in Boston, in the next couple of weeks for a consult. I may choose to have my surgery there.

  • commander
    commander Member Posts: 10
    edited January 2016

    Thank you for this and all the replies. It certainly feels good to meet others going or who have gone through this. I'm off to the reconstruction boards now. Lots to learn before I make any more decisions.

  • commander
    commander Member Posts: 10
    edited January 2016

    Fingers crossed for you! Waiting is so hard!

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2016

    good luck commander.

  • kaylynn
    kaylynn Member Posts: 124
    edited January 2016

    Commander a Central Mainer here!

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