I don't know if I'm confident or delusional...

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Ciaci
Ciaci Member Posts: 304
edited December 2017 in IDC (Invasive Ductal Carcinoma)

Hi all, this is my first post, though I've been reading for a few weeks. My journey started with my very first screening mammogram in April of 2017. I'm 55, and way overdue for that, of course, but I kept putting it off. I'm very shy, and standing topless in front of someone as they positioned my 38A's on a glass plate was just something I couldn't convince myself to do (no, the irony of that isn't lost on me - more people have seen my breasts in the last few weeks than in my entire lifetime). What finally made me make that appointment was a GP who told me she wouldn't see me anymore unless I had one done...

So, anyway, there I was, totally clueless, thinking that embarrassment was going to be the worst of it, when the technician, before even taking the first film, casually asked, "Have you always had that dimple there?" Dimple? What dimple? I couldn't even see it - it was on my upper left breast, just next to the underarm seam. I'm overweight, and always had fat rolls there, so hadn't noticed it. She took the films, they called me the next day, and scheduled a follow-up mammogram with an ultrasound for a few days later. While I was still laying on the ultrasound table, sticky from the gel, with just a paper towel laying over my breasts, a doctor came in to tell me I needed to get a biopsy because there was a "mass that looks like it could be cancer." I swear, my heart just stopped.

By the time I got home, my GP had called me, explaining that she was away on vacation, but would schedule an appointment with the general surgeon in their office to do a surgical biopsy. Since the mass was attached to the underside of the skin (causing that dimple), she didn't see any reason for a needle biopsy, and I agreed. The surgeon was of like mind, and explained to my husband and me that he wanted to schedule a lumpectomy and node removal for testing - whatever it was, there was no good reason to leave it in there.

The following Monday, I had the tumor removed, along with the first three lymph nodes on that side. Diagnosis: Invasive Ductal Carcinoma. I asked the surgeon how long it had been there, and he said it didn't matter (he knew I was beating myself up over not going for a mammogram sooner), and that we would deal with it now. He said he took out the tumor, half an inch of tissue all around, one node with a small tumor and cancer cells in it, and the next two nodes, which were clear. He then sent me to an oncologist.

So far I've just had a consultation with the oncologist, who has scheduled a PET-CT, a MAGU scan, a Port insertion, and a blood test to see if I am indeed post-menopausal (I had a hysterectomy for fibroids 16 years ago, but the surgeon at the time left one ovary so as not to plunge me into menopause at 39; I went through the whole hot flash thing a few years ago). Barring anything unusual with any of the tests, his plan is chemo, radiation, and hormone therapy (tumor is HER-something-or-other).

All of this has taken place in the space of a month. I have three children, ages 25, 24, and 22. My 22-year-old is graduating form college on Sunday. I'm overwhelmed, and by turns angry and teary, but most of all, I feel like it isn't really happening. I don't feel like I have cancer. Maybe because I had no symptoms at all? Maybe because the surgeon took out the tumor and node? I just can't wrap my head around it. I understand the next year is going to be rough (no timetable yet, but with all the oncologist has planned, I know it won't be quick!), but I'm worried about side effects of treatment, not the cancer itself.

Whew - feels good to get all that out!

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  • Molly50
    Molly50 Member Posts: 3,773
    edited May 2017

    Welcome to BCO. You are not alone in your feelings of this not being real. I was so healthy when I was diagnosed that I couldn't wraps my head around it. It sounds like your team is on the ball. You need a copy of your pathology report so you can inform yourself fully of your diagnosis. Get a file folder to hold all your paperwork and have someone take notes during your appointments. Is your oncologist ordering an oncotype Dx test?

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  • runor
    runor Member Posts: 1,798
    edited May 2017

    Ciaci, I can identify with your feelings of this being unreal. One minute you're just living your life and the next it's like someone hits you in the head with a board, you wake up in a different place going down a different road that was never part of the plan. At least that's how it felt for me. Complete disorientation.

    It took me 3 months from the first call saying something didn't look right before I finally had a diagnosis. When the surgeon sat down across from Hub and I and said, "I do not have good news" my heart stopped. The world stopped. Everything was suspended in that unbelievable, heart stopping moment. It's like when she uttered that sentence she shattered life as I knew it. Forever.

    It sounds like you are in the hands of people who are on the ball and not dragging their feet. That is a good thing. As to your feelings of this not being real, or not believing you can have cancer because you feel healthy .. I think many, many women know EXACTLY how you feel! Being just over 3 months into this cancer crash myself, I am still trying to find my bearings. I did a lot of reading. A lot. There is a lot of junk on the net. There is also good information. As you read you will get a feel for what is junk and what has value for your situation. Take notes.

    Of course, how you proceed depends on your own life views and style. A friend of mine who also had breast cancer didn't read anything. Didn't ask a single question. Didn't really want to know. She just showed up for her appointments, did what the doctors told her, no questions asked, and to this day if you ask her what her diagnosis was all she can tell you is she had breast cancer. That was her way of coping. Didn't feel that knowing anything would help her so she didn't give over one minute of time thinking she needed to be informed. She just soldiered on. Me? I am not that good with giving up control to outside forces so I have to know what's happening and why. But you have to find the way that feels best for you - and only you are qualified to make that decision. You have to find how you are most comfortable navigating what lies ahead of you.

    I am sorry you got this bad news. I am sorry for every woman who hears those words. This site has lots of good information to offer. You are not alone.

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  • Ciaci
    Ciaci Member Posts: 304
    edited May 2017

    Thanks for responding so fast!

    Molly50, he didn't mention an oncotype test, maybe because it had already reached the lymph node? I'l ask him about it.

    runor, I know what you mean about finding the right fit. My sisters are astounded that I had a general surgeon do the lumpectomy, and am seeing a "regular" oncologist for the rest. They keep telling me I should go to a breast center. Honestly, the matter-of-fact way these doctors are treating this - as a problem to be fixed - suits me better. The oncologist I'm using also teaches at the nearby medical school, and he used a wall-mounted computer to explain exactly what had happened, and will happen. He spent an hour and a half with us, explaining everything, answering questions, and I handled it much better than I would have if he had been overly solicitous. When he finished, I felt strong, armed with the knowledge I needed to fight this. On the way out of the office, an elderly patient in the hallway rubbed my arm and said, "You'll be fine, dear, they'll take good care of you" - and I promptly burst into tears! On the way home, my husband joked that we'll have to remember to avoid the kind little old ladies...

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  • Tappermom383
    Tappermom383 Member Posts: 643
    edited May 2017

    "You are not alone" - so true! The women on this site have been my lifeline in this unasked-for adventure. I know exactly what you mean about not believing this is happening to you. I felt as though I were standing outside of my body, that this was happening to someone else. I was so calm about it that one friend was quite worried about me. Several days after getting my pathology report from my lumpectomy, I suddenly burst into tears over breakfast. All the emotions finally caught up with me!

    I'm not having chemo so we're different there but I start my radiation next Monday with the mapping and planning. I keep reminding my husband that this isn't"t one and done, that we're in this for the long haul. I'll be on Arimidex after radiation.

    Your team sounds very supportive, which is so important. My surgeon expedited my procedure so I could go to Colorado for my grandson's 1st birthday - I sure appreciated that!

    I agree with the advice to get copies of all your reports. I have mine in a binder. Just read through them again the other day - they make more sense now.

    Enjoy the graduation! And check back in and tell us how it was and how you're doing.

    MJ




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  • Brutersmom
    Brutersmom Member Posts: 563
    edited May 2017

    Ciaci, You are not alone. I had a great surgeon who does both breast and gerneral surgery. Everything is moving fast right now for you. You need to do what is best for you. I chose to stop and get a second opinion. I insisted on the OncoDx test before agreeing to anything after surgery. I then scheduled a second opinion at a cancer treatment hospital about an hour away. It was the best thing did. I went back to my original docs for treatment but it helped to get everything into perspecitive.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited May 2017

    Brutersmom,

    If Ciaci is triple positive, (ER+/PR+/HER2+), her doctors would not order an Oncotype test because that is only for women who are ER+/PR+/HER2-.

    Ciaci,

    About 25% of breast cancer patients test positive for an overexpression of the protein HER2, which encourages the cancer cells to divide and divide and divide. That's why HER2+ breast cancer is typically Grade 2 or Grade 3 and is considered aggressive. About half of the breast cancer patients who test positive for an overexpression of HER2 also have cancer that is fed by hormones (ER+/PR+). Hence, triple positive BC patients typically get BOTH targeted therapy for the overexpression of HER2 (Herceptin and Perjeta [if tumor is bigger than 2 cm]) and hormonal therapy (Tamoxifen or an aromatase inhibitor) to starve the body of the estrogen that has been contributing to the development of cancer cells.

    In the past, testing positive for an overexpression of HER2 was a bad thing. Only 40% of BC patients who had HER2+ cancer were still alive, five years after diagnosis. However, with the development of targeted therapy (Herceptin and now Perjeta), the survival rates of BC patients who are HER2+ are about the same as for other BC patients. That is to say that over 90% of HER2+ cancer patients who were diagnosed at Stages I and 2 are still alive after five years, and that over 75% of HER2+ cancer patients who were diagnosed at Stage III are still alive after five years.

    The big difference between the HER2+ and HER2- crowds is the length of active treatment. For example, I had five months of chemo (AC + THP) and then a year of Herceptin after that. It's a marathon, not a sprint.

    Hoping that your PET scan shows no cancer spread! I've always found PET scans to be more relaxing than MRIs. The MUGA scan is to develop a baseline which will be compared to what future MUGA scans will show. One chemo regimen (Adriamycin + Cytoxan) can be tough on the heart, as can Herceptin (targeted therapy for HER2+ cancer. Throughout your treatment, you should be getting MUGA scans every four months or so just to ensure that your heart is OK. ((Hugs))

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  • Kimm992
    Kimm992 Member Posts: 135
    edited May 2017

    I think most of us can relate to the feelings you're having. Even now, being completely finished with everything, I still sometimes look back at all I went through and think, "did all of that really happen??".

    It's hard to see when you're just at the start of it all, but the worst of the treatment will be behind you before you realize.

    You are going to be just fine.

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  • Ciaci
    Ciaci Member Posts: 304
    edited December 2017

    Hello again! I just saw this initial post of mine on my dashboard, and decided to come update, in case anyone reads it.

    What a lot has happened since May! My former oncologist (yeah, the one I was so satisfied with in this post) turned out to NOT be what was best for me. When the PET scan showed a metastasis to my spine (one spot, less than 2mm), he basically told me to go home and do nothing, as I was now incurable. He said chemo wouldn't help, and even though they typed the cancer and found that I was ER+/PR+, HER-, he never mentioned any other options. A weepy call to my internist, and I was sent to Sloan Kettering here in NJ. Wow, what a difference!!

    I am now on my 6th cycle of Ibrance/Femara, and doing great! No side effects to speak of, just a little more tired than usual. I go for new scans the end of next month, to see where we stand, but I'm happy and hopeful. Oh, and I decided I liked the solicitous approach after all, LOL!!

    So I guess I wanted to hop in here and say don't be afraid to get that second opinion, and don't ever take "no" for an answer - there's ALWAYS something else out there, you just have to find someone willing to look for it with you!!

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  • Mucki1991
    Mucki1991 Member Posts: 294
    edited December 2017

    I'm so sorry that jackazz oncologist told you that.. That truly is horrible. I'm glad your treatment is going well.


    Best wishes for you

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