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Bilateral IDC

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annake
annake Member Posts: 31

hi, I have been diagnosed with bilateral IDC. My scans came up as non-mass, although the physical lumps are very large.

I have been told it is grade 2. going for a CT tomorrow and oncologist Monday.

anyone else with bilateral IDC?

Comments

  • LivinLife
    LivinLife Member Posts: 301
    edited April 2021
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    Whoa Annake! That is sooo unusual! Hopefully someone else will respond who was diagnosed bilateral. I know folks are out there though would be a smaller percentage... Please check back in once you've met with the oncologist tomorrow. I'm assuming you're having the CT just prior to that appointment. I hope all turns out well with that!

  • annake
    annake Member Posts: 31
    edited April 2021
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    hi, sorry I corrected my post. Oncologist is on Monday. Thank you LivinLife.


  • typhoon
    typhoon Member Posts: 59
    edited April 2021
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    Hi Annake - As you can see from my bio, I was diagnosed with bilateral BC (IDC and DCIS) about 5 months ago. My tumors were smaller than a centimeter (8mm, 5mm, and 5mm if I recall correctly). All were grade 1-2, strongly ER+/PR+, and all of the IDC was HER2-. I ended up getting a skin/nipple sparing bilateral mastectomy, direct to implant reconstruction. Both my surgeon and oncologist said that, while it isn't terribly common to see synchronous bilateral breast cancer, it also isn't particularly rare. In my case the cancer was very slow growing and had probably been there for a good long time. Because of the small size of my tumors, the low Ki-67 index, low oncotype score (9), and clear nodes and margins, chemo and radiation were not recommended for me. I am taking anastrozole for the next five years, with zometa infusions every six months for the next three years.

    Wishing you all the luck in the world as you pull together a treatment plan!

  • summerangel
    summerangel Member Posts: 182
    edited April 2021
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    Yep, I had synchronous bilateral IDC, which isn't very common, no. For those with issues in both breasts it is more common to have one side invasive and the other not, as typhoon had. As you can see in my signature, both sides were Grade 1 tumors and I haven't had any issues since my treatment in 2015. I didn't need radiation or chemo, and I ended up only taking Tamoxifen for about 4 months due to severe side effects.

  • trishyla
    trishyla Member Posts: 698
    edited April 2021
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    I also had bilateral breast cancer, but unlike some others, both sides were invasive. For me, one side was triple negative, while the other was hormone positive. They focused on the most aggressive cancer, the triple negative, so I had neoadjuvant chemo, followed by a bilateral mastectomy. Even though I had one node positive for a micrometastis, I chose not to do radiation.

    Have they given you any information on your hormone receptor status? That, and your node status will drive your treatment plan.

    Good luck. I hope everything works out for you.

    Trish

  • GreenOutdoors
    GreenOutdoors Member Posts: 68
    edited April 2021
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    Hi Annake,

    I’m sorry you find yourself here. I was diagnosed with bilateral synchronous IDC a few months ago. Though not common, my doctors all insist that having bilateral cancer does not mean a worse outcome overall. They just focus on the “worst” one. Just gear yourself up for lots of appointments and know that it does get better once you start active treatment.

    In my case, the biopsies and scans indicated grade 2 on the left and grade 1 on the right with no lymphs involvement. However the surgery pathology report changed that to grade 3 on the left and grade 2 on the right with a 4.5mm lymph node out of one sentinel node. A total of 4 tumors were found, as well as lymphovascular invasion on both sides. So I’m undergoing chemo now and will do radiation next.

  • typhoon
    typhoon Member Posts: 59
    edited April 2021
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    SummerAngel - The surgical path report showed that there was a small amount of IDC in the (primarily) DCIS tumor on the right side, so I did have IDC in both breasts - all medium-low grade and slow-growing. My apologies, I should have been more specific in my original comment.

  • annake
    annake Member Posts: 31
    edited April 2021
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    hi, I don't know much yet.

    on my Histology:

    ER+/PR+, HER2-

    KI67 in left breast : 25-30%

    KI67 in right breast : 10-15%

  • annake
    annake Member Posts: 31
    edited April 2021
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    hi, good news. It hasn't spread. so double mastectomy with reconstruction around the 28/29th. chemo after, they are not sure if radiation will be needed yet.. she mentioned they will do some sentinel lymph node mapping (something like that) before the opp. so stage 2, grade 2 at the moment.

    still need to see the oncologist on Monday


  • annake
    annake Member Posts: 31
    edited April 2021
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    how long did some of you take to recover from a bilater diep flap surgery? I am a single mother with a 7 year old, so I think it might a rough one ahead

  • typhoon
    typhoon Member Posts: 59
    edited April 2021
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    Annake - Great news that your CT scan was clear! That's a big hurdle, and one less major thing that you have to worry about right now. I'm glad you've got an initial treatment plan in place - hopefully it's helping you to recover a sense of control.

    My reconstruction was direct-to-implant, so unfortunately I can't be of any assistance with your specific DIEP flap question. In addition to the first hand experiences you will undoubtedly hear from others on this site, your breast surgeon should be able to give you informational literature on the surgery and recovery. I will say that I had a relative with me for the first week after my surgery, to keep an eye on me the first few days when I was still loopy from the anesthetic and pain medications, as well as to help with stuff around the house, driving to doctors' appointments, and that sort of thing. Even with my much less complex surgery, it was about a month before I was back to mostly normal. Bottom line, you will probably need some assistance. If you've told friends and family about your diagnosis, then you've undoubtedly heard a lot of, "What can I do to help?" Take people up on their offers, and give them specific things to do - they will be truly grateful to be able to help you out.

    Continued best wishes to you.

  • trishyla
    trishyla Member Posts: 698
    edited April 2021
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    Hi, Annake. I had bilateral breast cancer, diagnosed in late 2016 when I was 58. After five months of chemo, I had a double mastectomy with immediate DIEP flap reconstruction.

    I won't lie. It's a big surgery, with at least a four to five day stay in the hospital. But it is totally and completely worth it. I highly recommend it to anyone who qualifies. You go to sleep with warm, natural feeling breasts and ten to twelve hours later you wake up with warm, natural feeling breasts.

    As far as being a single mom, do you have an adult who can stay with you the couple of nights? Those were the hardest for me. After that, I was completely self sufficient. Heck, I was dancing in high heels at five weeks out. I would imagine you're much younger than I was, and will probably heal pretty quickly.

    With so many food and grocery delivery options, you should be okay for food. And at seven, your little one is the perfect age to be a big help to you.

    Biggest piece of advice I can give you is to make sure you have a highly qualified microsurgeon/s to do your surgery. It will make a HUGE difference in your outcome.

    Only other advice would be to build up your thigh muscles as much as possible. They will be your go to muscles for everything from using the bathroom to getting up off the sofa. Can't stress that one enough.

    Please PM me if you have further questions about the process, or recovery.

    Good luck!

    Trish

  • annake
    annake Member Posts: 31
    edited April 2021
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    hi everyone, thanks for all the responses thus far.

    so I am going in on the28th. I read that a rib will be removed to access the vessels. is this always the case?

    Also how is the pain after the operation? I have heard it is extreme, but don't you get medicated enough to alleviate the pain?

    after recovery it is 6 month's chemo, then radiation and 10 years hormone treatment.

  • texasmama
    texasmama Member Posts: 129
    edited April 2021
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    I wish I had seen this earlier. I had bilateral cancer and received the same treatments and surgeries as you. I would be happy to answer any questions you have.

    You mentioned you are concerned about pain. If your medication isn't alleviating your pain, tell your doctor. They should be able to give you something else. I found it helpful to walk frequently after my DIEP. I wouldn't go far- just a few laps inside the house. I really think it helped me heal quickly.

    Because I had bilateral cancer, my doctor sent me for genetic testing. I am so glad she did. I learned that I have a brca2 mutation. Knowing this, I have been able to make informed decisions about how to treat my breast cancer and lower my risk for other cancers.

    I hope your surgery went well and you heal quickly.

  • annake
    annake Member Posts: 31
    edited May 2021
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    hi all, I am recovering well. all my drains are out. had my first check up with plastic surgeon today. he is happy with everything thus far.

    i have an appointment with breast specialist on Monday to discuss histology. i know they did an axilliary clearance on one arm and a few on the other one which we will be using for chemo.

    my stomach skin still feels very tight. operation was 9 days ago, anyone else had this. feels like it will tear if i walk up straight. it is very uncomfortable.

  • clars
    clars Member Posts: 46
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    Hi! Bumping this as I have bilateral BC. Both IDC, grade 1 and smaller in left, grade 3 and bigger in right.

    My surgeon said since percentage of people who get bilateral BC is so low AND people who get it under 40 is so low (I’m 39) she wouldn’t be surprised if it is genetic, there just isn’t a test devised for it yet (I don’t have BRCA). Hmmm.

  • kaynotrealname
    kaynotrealname Member Posts: 422
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    Hi Clars! We know of quite a bit more breast cancer genes beyond the BRCA's and it's quite common to get tested for them in the US. ATM, Check2 and BARC1 off of the top of my head. Have you been tested for any of those? If not it might be worth your while just to see if they have some medications for your particular mutation that can help.

  • harley07
    harley07 Member Posts: 315
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    @Clars - I second what Kay said. I’m in the US and my doctor ran an Invitae panel of 70-80 genetic mutations. Turns out I have the RAD51D mutation which increases the risk of breast and ovarian cancer. Perhaps you could ask your doctor to run a broader range of genes. Best of luck.