What to expect at 1st appt. with surgeon?

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pleasantsa
pleasantsa Member Posts: 18

Hello,

This is my first time posting. After a whirlwind of testing (screening mammogram, 3-D mammogram, ultrasound, biopsy, MRI w/ contrast dye) that kept me busy and kept my mind occupied, I now am waiting a week to meet with the breast surgeon my PCP recommended and I'm going stir crazy. I am 50 years old and premenopausal. The mass in my left breast is 14x12x15 mm and the pathology showed IDC, ER+, PR+, and HER2 Equivocal which means it was borderline and I'm waiting on further testing to determine pos/neg. My axillary lymph node was also biopsied because it was inflamed and it was blessedly negative/benign. Will I be scheduled for surgery right away or do they do other treatments first? My mom will come from across country to stay with me when I have surgery but I don't know if that will be in weeks or months from now. I feel like my life is on hold. At first my researching was great because it got me familiar with the basics but now I'm obsessing. I just watched an hour long webinar for physicians about the new 2018 cancer staging rules from the AJCC - God help me!! Now I'm afraid if I ask my doctor about neoadjuvant therapy she'll be put off and think I'm a know-it-all. How do you strike the right balance between being a good, informed patient and respecting your doctor's expertise?

Thanks

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2018

    Hi!

    You probably won't get neoadjuvant treatment unless you are HER2+. Even then, many HER2+ BC patients do adjuvant chemo/targeted therapy. I was slated for neoadjuvant chemo because my lump was big and I was HER2+ (easier to get Perjeta as part of neoadjuvant treatment).

    If you're meeting with the surgeon, she'll want to discuss surgical options: lumpectomy, mastectomy, double mastectomy, and reconstruction (although you'll also need a plastic surgeon to discuss that). Unless you are HER2+, that's what I'd focus on if I were you. What surgery seems right for you? If you opt for a mastectomy or double mastectomy, do you want reconstruction? If so, what kind?

    By the way, your surgeon shouldn't recommend chemo, targeted therapy, or hormonal therapy. That's the job of your medical oncologist.

    Good luck!

  • FaithsMama
    FaithsMama Member Posts: 126
    edited April 2018

    Hi Pleasantsa, I am in a similar situation. I am

    Post menopausal though. 52 years old. Waiting for my surgeon consult on Friday. This is a tuff stage to be in because we don’t know to be cautious, optimistic or realistic.

    Hang in there!

  • Carquanmangee
    Carquanmangee Member Posts: 2
    edited April 2018

    Hi ladies, my first appointment is on Wednesday the 4th of April. I was diagnosed on 3/20/18 with IDC, 3cm, ER+,PR+, and HER2 borderline and the FISH not amplified. Really don't know what all of this means. Just need some understanding of what I am looking at. HELP!!!!

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited April 2018

    Hi Carquanmangee!

    If the FISH test didn't show an overexpression of the HER2+ protein, it sounds as though you are ER+/PR+/HER2-. That is the most common form of breast cancer. I suspect you'll do surgery first, and then your doctors will order the oncotype test to see whether the benefits of chemo outweigh its harms. Many BC patients who have hormone positive cancer don't end up doing chemo because their oncotype test says it's not worth it. Your oncologist will recommend that you do hormonal therapy (either Tamoxifen or an Aromatase Inhibitor -- AI) for five years. (You just take a pill every day.)

    Good luck!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    pleasantsa just wanted to chime in that surgery will probably be scheduled soon—not because it's an emergency but because there's no reason to wait, particularly with a lumpectomy. You can probably see from my signature that my surgery was 11 days after dx, and really a lumpectomy is not bad. Not much pain and other than not being cleared to do upper body stuff at the gym, life is pretty much back to normal after a few days. Typical follow-up with the surgeon (at least mine) is about a week post-op and he then again about two weeks after that. The good news is you need to heal from the surgery before you can start any treatment so you get this nice 4-6 week period with not much going on. You will likely have an initial consultation with an RO and/or MO before the surgery.

    There are tons of quite specific threads with great advice for just about every dx/treatment schedule on this site. It is such a blessing.

  • pleasantsa
    pleasantsa Member Posts: 18
    edited April 2018

    Thanks Elaine and Ingerp for the information. This site has seriously saved my sanity. I know all of our paths are different but it helps to have some general idea of what to expect.

    SuiteLisa and Carquanmangee I wish you both the best in this unfortunate journey we've embarked on. Please report back about what happens at your consults.

    Ingerp, was it a shock to get IDC on the right after DCIS on the left? Was your situation unusual or typical? Forgive me if these are dumb questions.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    pleasantsa--not dumb questions at all. The short answer is yes. My mom had something that was probably DCIS around age 62 (she didn't know the exact dx but was told many years later that if she'd gotten that dx then, they would have done a lumpectomy rather than MX), but other than that there is *no* cancer in my family. (BTW--she's doing great at 89.) I did have some ALH about nine years ago (that honestly I keep forgetting about!). I will have genetic testing done at some point but none of my doctors are expecting to see any positive results. They did say that because this one was on the other side and had very different characteristics from the DCIS two years ago, it's considered another primary vs. a recurrence. My hooters just need to stop acting up. Really. As to typical or not, I know *many* women get one incidence of DCIS, treat it, and never have anything else show up. But I am *very* happy I get looked at thoroughly every six months. I do feel like if anything comes AGAIN, it'll be caught early.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    It will depend on the HER2 status. When I was first diagnosed on the right side I had an IDC mass +/+/- that was 7.5 mm . I also had pre-cancerous calcifications along my chest wall. I was going to be able to have a lumpectomy with no chemo or radiation. The doctor then decided to do an MRI to make sure we weren't missing anything. The MRI detected a 15 mm IDC mass +/+/+ and a group of pre-cancerous nodules. Since this mass was HER2+ I had to have chemo and they strongly recommended a bilateral mastectomy. When I got the diagnosis of HER2+ it changed the game plan totally.

    But then after my diagnosis it was decided to do chemo first. I finished it in Aug and had my mastectomies in Sept.

  • pleasantsa
    pleasantsa Member Posts: 18
    edited April 2018

    I had my appt. with the surgeon today and you ladies were right on target. She suggested a lumpectomy. I have to meet with the RO to discuss my radiation options. The surgeon said they usually do whole breast, partial breast, or IORT radiation. Based on the research I've done I'm very interested in having IORT as a boost followed by a reduced schedule of whole breast rads (studies have shown less recurrence with this combo). They're doing this at places like Cancer Treatment Centers of America but not here in Denver. I'm going to see if the RO is willing to do this. Anyone know a good board to ask if anyone has had this done? I have a hard time finding some of the specific boards here.

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