Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

recurrence after stage III TNBC?

Options
1235

Comments

  • KBeee
    KBeee Member Posts: 695
    edited February 2019
    Options

    When you're there, just make sure the tech knows abotu the other pain. If they note it, the radiologist should pay attention to that when analyzing the images.

  • pesky904
    pesky904 Member Posts: 263
    edited February 2019
    Options

    Thanks for the tip, I will make sure I tell them. This pain in my lower back and tailbone is only about a 1-2 on a scale of 1-10 but it's very annoying.

  • pesky904
    pesky904 Member Posts: 263
    edited February 2019
    Options

    So my bone scan results were just uploaded to my patient portal. In addition to the focus of increased activity in the proximal right femur, it also says:

    "There are no definite additional foci of abnormal activity noted in the skeleton to suggest neoplastic disease."

    What the heck does "no definite additional foci" mean? This is the same place that did my last bone scan on 9/21/18, just over 4 months ago, and at that time they were very specific that there was NO focal abnormal areas of increased activity.

    Is it just me or does the wording of this latest report kind of read like, "Eh, whatever, it's *probably* fine."

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited February 2019
    Options

    I think it means that except for the hip, nothing else looked problematic? Nothing beyond what IS mentioned (proximal femur - aka hip)?

  • pesky904
    pesky904 Member Posts: 263
    edited February 2019
    Options

    I just don't like the wording. Same radiologist as in September. In September he wrote there was no abnormal foci, period. This time he wrote there's no definite abnormal foci. They should be more specific. If there's none, then say none.

  • KBeee
    KBeee Member Posts: 695
    edited February 2019
    Options

    Understand that they may word things slightly differently doctor to doctor and the same doctor on different days may word things slightly differently. They are writing these for a medical chart, not as an explanation to the patient. I know it is hard to avoid, but trying to "read into each word" is going to drive you crazy and it will not change anything. You can call and leave a message for the radiologist if you have specific questions, but do try not to analyze each word yourself. Get clarification from that person. Waiting is hard. I get that. Do try to do whatever you can to stay distracted.

  • pesky904
    pesky904 Member Posts: 263
    edited February 2019
    Options

    I just keep telling myself that my back and tailbone hurt, not my right hip where this spot was seen. Since I have actual pain in my back and tailbone and nothing was seen, what are the chances of this one spot on my hip that doesn’t hurt being cancer. Seems more likely if it were cancer it would’ve been seen in the spots where I actually feel a little pain.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    Ugh, I got a call today saying they are having trouble getting approval for my MRI that is scheduled for Monday. I can’t believe I might have to wait even longer now.

    So everyone tell me all the possible things the focus of enhancement on my proximal right femur could be. It says it’s in possibly in the intertrochanteric or subtrochanteric region.

    It’s not arthritis. They saw uptake elsewhere that they deemed due to arthritis.

    I’m on NO meds right now. Triple negative, so no hormone therapy.So beyond arthritis, what are the possible things it could be?

  • KBeee
    KBeee Member Posts: 695
    edited March 2019
    Options

    Remember that they did not think this was evidence of neoplastic disease. Those are the words you need to hold on to.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    Well, they didn't think there were any other areas evident of neoplastic disease. This particular spot on my femur was a question mark.

    I just finished dealing with the referral fiasco and talked to the nurse at my oncologists office who said we definitely can't put the MRI off for weeks so she helped me by making some calls, but unfortunately we had to cancel my appointment for Monday. I'm now not able to get the MRI done until March 12, which will actually be a full month after the bone scan.

  • Flynn
    Flynn Member Posts: 208
    edited March 2019
    Options

    How disappointing that your mri got pushed out! Sending you good thoughts- I don’t have any insights for you.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    Thank you, Flynn. More waiting. My oncologist is upset. My primary care physician absolutely refused to give the referral without seeing me because it's been too long since they've seen me. Seems just greedy to me.

  • KBeee
    KBeee Member Posts: 695
    edited March 2019
    Options

    It is frustrating when it becomes about greed. Are their other sites for the MRI where you could get in sooner? Often they make them at he site where they have contracts, etc, but if you ask, you may get in sooner elsewhere. I've done that.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    KBee, no, unfortunately, I can't get it done anywhere without my PCP's referral and he won't give a referral without seeing me first.

    Even though my oncologist has been seeing me pretty much every month for 20 months and he hasn't seen me that whole time. He just wants to get paid for the office visit. So I guess his few hundred dollars is worth more than making sure I don't have a metastasis.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2019
    Options

    Can your Oncologist call the physician, and strong arm that asshole? Or go in to see the asshole, or possibly a LVN in his office?

    Idea #2, Hit up planned parenthood. I read abut them getting imaging for someone else on another thread.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    My oncologist is very angry. But after a million phone calls, no one could get anywhere. I honestly have no energy left. My mother died 3 weeks ago and my father died last week. I just need to be sleeping, not arguing with my PCP. Ugh.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2019
    Options

    pesky, I am so sorry you have been grieving your parents on top of all this. In fact, whether it's nothing or something, it is unlikely that a week or ten days makes a giant difference here, it is just so insulting and frustrating to get jerked around rather than helped. I wish you a good restful sleep and I am very sorry for your loss of your mom and dad. Sending a big hug.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    Thank you, Santabarbarian. ❤️

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited March 2019
    Options

    It makes me so mad how backwards the heath system (at least where I am in the US) is. Pesky i hope things go better for you and when you get the final results they are nothing to worry about. Any new news and the breast lumps?

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    They just told me the breast lumps looked fine and are likely post surgical changes and we will check them at my April follow up.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2019
    Options

    Nerdy

    Glad the breast lumps are not problematic!

  • Diaval
    Diaval Member Posts: 2
    edited March 2019
    Options

    Please. Everyone. Try to remember that every healthcare provider you encounter is your employee. Demand every bit as much from them as you would someone who does daycare for your children or fixes your plumbing or installs your cable. Blessings.

  • Diaval
    Diaval Member Posts: 2
    edited March 2019
    Options

    Curcumin as a supplement (as opposed to dietary intake) should be carefully evaluated when taken with tamoxifen.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2019
    Options

    Diaval - I agree about "your employee" 100%. When I had an early minor skirmish with my MO, I straight up told him that the life he was trying to save was MINE, and that if me having opinions and critical thinking skills was a problem for him, I would find a different MO. I am happy to say, he heard me, switched gears, and turned out to be fantastic.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    So frustrating. I saw the PCP today so I could get my referral for my MRI on Tuesday.

    He not only criticized the course of treatment I’ve had over the last 20 months, he also ordered a whole slew of other tests, including a liver ultrasound because of the elevated alkaline phosphatase.

    So now more appointments and more time spent dealing with this. Not sure how these doctors expect me to be able to find a full time job when they have me in appointments about once a week

  • Parrynd1
    Parrynd1 Member Posts: 343
    edited March 2019
    Options

    I feel you Pesky. Cancer can feel like and be a full time job on its own

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    Honestly, the stress and anxiety of trying to start my life ALL over again completely from scratch has been the worst part of this. Anyone who took time off from a job and then went back, I envy you SO much.

    My husband abandoned me shortly before diagnosis and I had been working freelance. Great when I was on his health insurance but not great when he up and left me with nothing.

    Trying to find a new full time job (and decide what I would even like to do with the rest of my life to make it feel meaningful) while recovering from cancer, still reeling from the sudden and brutal end of my marriage and having just buried both parents in the last 3 weeks is torture. And now this PCP who just met me for the first time is filling my schedule with all kinds of probably completely unnecessary tests just to justify making me go in for an unnecessary appointment so that I could get a referral from him. 😖

    MRI is now scheduled for Tuesday. The PCP’s office is now scheduling me for a liver ultrasound, which has to be done at a different facility on a different day. As well as a bunch of blood work and a urinalysis that have to be done back at the facility I was at yesterday (my appointment was so late in the day, the lab was closed.)

    Oh, and he wants to see me back in 4 months. Why? I guess to justify all this crap he ordered

    I just want to know what the bone scan showed on my hip and it’s turned into several more days of healthcare related b.s.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2019
    Options

    pesky,

    I doubt he is just trying to soak you for money. Truly. He is probably afraid of missing something important if he does not see you and evaluate you. A doctor cant order things without seeing you for that very reason-- they'd take on liability yet without full information. And, you have those enzymes to investigate, which might be important.

    If you truly can't trust your PCP, please find a new one who you CAN trust. But I believe it may be that he is taking your symptoms very seriously, and providing very good care. There are many people on these boards who can't seem to get the tests they need -- so I think the opposite problem is a better one to have. If God forbid there were an issue in your liver you'll be LUCKY that he insisted. And if not, you'll have an "all clear" that will help you move forward on your new life plans with full focus. Better to find out definitively. Another test or two is nothing compared to what you have been through.

    I think most doctors really want to help people, so I would give him the benefit of the doubt, take the tests, and then go from there.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2019
    Options

    PS if you are not divorced yet, he can keep you on insurance. I legally separated from my H but we did not divorce right away, and I was able to stay on his ins until things got to a new normal, and THEN we completed the divorce.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2019
    Options

    Santabarbarian, he abandoned me, moved to another state and took me off his insurance. He changed his phone number while I was in treatment.

    I didn't present to my PCP with any symptoms. He made me go in to see him and was refusing to give the referral for the MRI to investigate my positive bone scan until I went to him for an office visit. So a half day lost where I could have been doing freelance work to make some money.

    Then he noted my elevated ALP, which my oncologist has been watching for months. I told him my onc was on top of it, but he still ordered a slew of things that will now result in me having to go to two different other facilities on different days and lose even more time where I could be making the money I need to pay my bills.

    The healthcare system in this country is extremely messed up and it's all due to ridiculous insurance requirements and doctors' fear of malpractice suits.