Cart before the Horse?

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RedemptiveSufferer
RedemptiveSufferer Member Posts: 242
edited November 2016 in Just Diagnosed

Hi! Nov. 4th I was diagnosed w/IMC (from what I understand that's a combination of ILC & IDC.) I've met w/my GS and PS and am to meet the oncologist Tues. At this point it looks as if I'll have a single mastectomy (sorry, I don't know all the abbreviations just yet) shortly after T-giving. My concern is I've had shortness of breath for what seems like a month now. I'm beginning to wonder if it has spread to my lungs and if a PET scan shouldn't be done first. I mean, if it has already spread I'd want to know so as not to disturb my lymph nodes unnecessarily. It's my understanding that the scans occur after surgery, but seems they should occur beforehand. Am I missing something? If it's typically done afterwards should I request it be done first?

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

    Have you told your doctor about this?

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  • tlgio17
    tlgio17 Member Posts: 191
    edited November 2016

    Hi there, I would definitely check w your doctor, I was DX 10/23 and the 1st thing my Dr did was have me complete Bone and CT scans to check if anything else was more pressing.

    Sorry you find yourself here as well and best wishes on your journey!!

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  • cive
    cive Member Posts: 709
    edited November 2016

    Yes, do discuss with your doctor. I also met with my MO and had various scans (MRI, CT) PRIOR to surgery. Good luck to you.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    Hi!

    I had an MRI and a PET scan before surgery. But, my tumor was big (5 cm.+), and one node was already compromised. (I was diagnosed at Stage IIIA.) Often, oncologists don't order scans if they believe the patient is Stage I or IIA. If I were you, I'd tell your doctors about the shortness of breath. It could be something unrelated to cancer, like a pulmonary embolism. Either way, you want to know what it is before they operate because you want to avoid complications. Best wishes!

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  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Trvler, actually I haven't. I guess because when it first started about a month ago I had a cold and assumed it was related to that. Many people in my neck of the woods were getting bronchitis. And it's kind of intermittent and I haven't thought about it at the time of my appointments, I guess because of other matters at hand. I was starting to think maybe it's anxiety related even though I don't feel that anxious. Not sure if any of this is making sense. When I began reading how some women w/TEs after surgery feel a tightness in the chest I realized I need to bring this to someone attention. I'll be sure to bring this up at my Tues. appt. Thank you!

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  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Tlgio, when you say your Dr. ordered the scans, was it your PCP? MO? Surgeon? Perhaps that will be my MO's plan who I'll meet for the first time Tues. I may need to slow down my surgeon's plan to get my mastectomy done ASAP until all the other tests have been completed. Thank you for the feedback and I wish you the best on your journey as well! I'm sure I'll "see" you around here!

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  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Thank you, Cive. Seems like that is the appropriate plan of action. Thanks for chiming in and have a wonderful weekend.

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  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Thank you, Elaine Therese! How did you know the one node was compromised prior to surgery? Was it swollen? It's good to know that some oncologists DON'T order the scans beforehand so I'm made aware to be proactive regarding this. I'll make a mental note of it because I don't ALWAYS experience shortness of breath, though it's at some point nearly every day. "Ugh"...none of this lined up w/my Thanksgiving plans. Have a wonderful weekend.

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  • scaredashell07
    scaredashell07 Member Posts: 272
    edited November 2016

    Hi. I had a PET/CT scan but no bone scan. It was before surgery. I also had shortness of nreath but seems it was stress because it doesn't happen anymore. I would tell doc you want a scan to confirm before surgery.

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  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Thank you scaredashell07. You give me hope that perhaps it's anxiety related. I'm trying hard not to automatically assume that the cancer has spread to my lungs.


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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    RedemptiveSufferer,

    We knew that one node was compromised because it could be seen on the ultrasound, the MRI, and the PET scan. Plus, we did a fine needle biopsy which confirmed cancer. Another reason my doctor ordered a lot of scans is that my tests revealed that my cancer was Grade 3, HER2+, so it was an aggressive type that was more likely to have spread already. Your cancer seems less aggressive, Grade 2, ER+PR+HER2-, though you might not know for sure until you do an Oncotype test to see whether or not you might benefit from chemo. Good luck!

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  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Thank you for explaining, Elaine Therese. This is obviously new territory for me so I didn't know how one could tell other than nodes being removed during surgery. I appreciate the info. Wondering if I'll need chemo or not...a big question circling in my mind. The surgeon automatically assumes it, but the MO may have a different plan of action depending on scans, tests, etc... One thing at a time, right?

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    RedemptiveSufferer,

    Your type of cancer is perfect for the Oncotype test, which looks at the genes in your cancer and helps your MO determine whether or not the benefits of chemo outweigh the risks. That should be ordered after your surgery, so no rush right now. Another test which helps determine whether or not chemo is appropriate for you is the Mammaprint test. Your insurance should pay for the Oncotype test; it may or may not pay for Mammaprint. Either way, your doctors wouldn't want you to get chemo right after surgery; they would want you to heal up a bit. Yes, one step at a time!

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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    ALWAYS be honest with your Drs and be sure that they know EVERYTHING that is going on! Even what 'you' think is a small issue may/can be very important in the over all 'picture'. It may not be a worry but they NEED to know.

    I knew that at least 1 node was positive as it had been the first site that was FNB that day - then went into other areas of breast for more FNBs. The node had been the first sign of presentation a week before when it literally overnight went to the size of an almond.

    There are many different TX plans - depending on many 'things' - type, stage, ER/PR/HER2 status, genetic, overall health, age all come into play for a TX plan. For the best outcome - the Team (Chemo Dr, Rads Dr and Surgeon) works together.

    For me (with a different DX), it was a Bone Scan, then a CT and MRI with contrast and finally a PET Scan before starting neoadjuvant Chemo. The PET 'lit up' on a spot along my lower jaw - immediately biopsied and nothing there.

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  • lekker
    lekker Member Posts: 594
    edited November 2016

    While the shortness of breath might not be cancer-related, you absolutely should mention it to any and every doctor you speak with before surgery. Even if it's only bronchitis, it might impact your anesthesia. And as to your surgeon telling you that you'll probably need chemo, just remember that surgeons don't prescribe chemo any more than medical oncologists perform surgery. Sorry you have to join us here but welcome

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  • RedemptiveSufferer
    RedemptiveSufferer Member Posts: 242
    edited November 2016

    Thank you, Elaine Therese. I've seen a lot here on the Oncotype test and have looked briefly at it online. Haven't looked at the Mammaprint yet. Sure hoping the MO is familiar w/all of these (what I'm assuming are newer) tests.

    Thank you, Kicks! You're right about needing to share. It didn't seem to be as much of an issue in the beginning but has become more prevalent. It left my radar every time I went to an appt. because my focus was elsewhere, I suppose. Will make a point to share Tues. when I meet the MO for the first time. I honestly had no idea that nodes could swell to that size so quickly! I'm obviously oblivious to how cancer works but will become a near expert soon whether I like it or not. So glad the biopsy along your jaw was benign!

    Thank you, lekker for sharing and for the welcome! Certainly hoping my surgeon was making an ill-informed assumption. Will bring up shortness of breath ASAP w/my docs.

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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2016

    Get notepad and write down every question you have when you have it - be sure to take it to appts. and be sure to bring up every one of them before you leave the appt. with answers you understand. You can make a second copy to hand to Dr as they can often incorporate questions into one answer.

    It is also good to keep a Journal of your thoughts/feelings/experiences as you travel down this often bumpy/dark road. Years later - it can be a source of stenght - personal or for others.

    Different types of BC present differently/differenf time frame. Even a type presents differently in each of us.

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