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Freaked Out and Maybe Extreme

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solermoon
solermoon Member Posts: 3

Hello all,

So I had a breast MRI Sunday and now need an MRI biopsy. The MRI was very painful for me and now I have costocondritis from it. At first I was upset now I'm just pissed off. I've been on pins and needles all week waiting for an appointment which I thought was going to be made for an ultrasound biopsy now it turns out it's for and MRI biopsy. I asked if it could be by ultrasound and was told by a scheduler today the radiologist doctor said no. I feel like all these people who are our medical providers leave everything to their staff when they should be speaking to the patients about their care directly. I told the scheduler I wasn't going to do the biopsy because it was too painful having the MRI, she acted surprised.

I had been putting off calling or writing about an MRI complaint. I called the MRI head person today to complain about the MRI and she told me they could make me more comfortable the next time and to contact her directly before any further appointments. I had been putting off calling about the complaint. She was very nice and seemed genuinely concerned for my comfort. I really think they could update their equipment as I've seen more comfortable machine setups online. The torture device they used on me must have been designed by a man with no torso support other than your sternum and a precarious headrest that kept sliding out.

I had to call my doctor's office for the original MRI results because they never called me with results. The hospital scheduling was calling me Tuesday for and appointment 6 months form now for masses in both breast they are continuing to monitor. I thought whoah what a relief, if they're scheduling for an ultrasound 6 months out I'm good. I contacted the doctor's office immediately to find out my result of the MRI from Sunday. The nurse called me back and it turns out I need an ultrasound guided breast biopsy. Hospital scheduling was to contact me for the biopsy appointment. I waited a day and called them and they were waiting on an order which was when I requested it be a ultrasound, per the nurse, not the order for MRI they were waiting on. Now I'm told by a scheduler the biopsy has to be by MRI per the radiologist doctor. Why are all the people making decisions on my care invisible? I had to ask for the name of the radiologist doctor who said no. So frustrating.

I've decided all of this is too stressful and I can't see myself going through this every 6 months or so. I called my primary care and asked for a referral to an oncologist. Maybe I'm a control freak, impatient or being a baby. At this point I just want the breast tissue removed and breast reconstruction or implants. I want options. This waiting without information and knowing my family history of breast cancer, I'm done. My grandmother and three aunts all had breast cancer. My primary care doctor recommended a surgeon not oncologist. Is that right? I need to feel in control, know my options and have someone to air to. Maybe I'm a control freak, impatient or being a baby. I'm ready to do whatever the insurance company needs to whack these puppies off! Am I being extreme? Maybe I'm being over emotional...

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  • moth
    moth Member Posts: 3,293
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    Well, since you asked...yes, I think it's too extreme right now.

    I think if you're concerned about family risk, you should do genetic testing first. Many people have family history but it turns out to not be linked to any identifiable gene. If you're considering mastectomies, it would be a surgeon you'd see. Oncologists only deal with diagnosed cancer and precancerous conditions like DCIS so unless you're diagnosed with something, you wouldn't need to see an oncologist.

    Mastectomy and reconstruction are big surgeries with many risk factors, including infection. And honestly, the surgery causes a lot of discomfort for a lot longer than an MRI or an MRI biopsy. Some people have persistent nerve pain post op.. Many women also lose sensation in their breasts. These are big issues to consider - it is absolutely the appropriate surgery for some but should not be undertaken quickly or emotionally.

    A reasonable step would be to get copies of the imaging reports up to now. The reports are available to the patient so you can see what the radiologist saw and what they're recommending. Some masses are only seen by MRI and not by ultrasound so they need to be guided by MRI. I think it would help to get the reports, read what they say and then you can make a decision about your next steps.

  • smc123
    smc123 Member Posts: 30
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    When my first lump was found on my left side I was able to have able to have a ultrasound led biopsy. After additional tests I had to have an MRI biopsy on my right side. It wasn’t pleasant but this was the best way to get the biopsy. I trusted my doctors and the process.

  • melissadallas
    melissadallas Member Posts: 929
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    I would also say that there is a reason the sternum bar is minimally padded. The radiologist who used to post here says extra padding on the bar lifts your breast up out of the table openings, meaning that the back part of your breasts and chest wall would be omitted from the imaging

  • bruinjamie21
    bruinjamie21 Member Posts: 10
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    I had to have an MRI biopsy 2 years ago that was benign. I hated every second (obviously), and just had my yearly MRI and was told to come back for another one in 6 months. EVERY YEAR that I get an MRI it all gets to me emotionally and I throw my hands up and say, that's it, I want to just be rid of them. And I have yet to do it. My surgeon thinks it would be extreme, because I have no genetic mutations, despite a very strong family history (mother, grandmother, 1st cousin). So I just want to say, you're not alone in feeling what you feel.

  • minustwo
    minustwo Member Posts: 13,080
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    Moth is right - step back and think about what she said. Get copies of your reports.

    Melissa is right. The 'table' has to have minimal or no padding for the machine to do it's job.

    So ask your doc for some meds. I take one Zanax before an MRI. And one before a PET/CT. Otherwise I can't hold still. That is the only time I take Zanax - so a prescription for 10 pills will last me 20+ years.

    You will NOT be in control. You can have lots of input. You can make some of the calls. But you might as well make your mind up that you have to defer to the experts in lots of things. If you don't believe them or trust them or like the treatment you're getting, the best thing is to head to a different facility & doctor.

  • rah2464
    rah2464 Member Posts: 1,192
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    Minus Two has a great recommendation. Ask for supportive meds to ease the pain and stress. We all respond differently and that sternum area can be so very tender. I hope you will continue to pursue imaging and treatment, working through the challenges with your doctors so that you can make an informed decision. I will echo what Moth said, mastectomy can be a brutal surgery for some of us (I was one - struggled for two years with post op pain and scar tissue until we redid my implants). It is very frustrating and stressful because you want an answer right away and sometimes it takes a bit. Wishing you well and I hope you find a team that you feel understands you.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,761
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    Everyone has given you good feedback and I would agree that you do need to get a handle on your anxiety. It's very important for you to understand that oncologists deal with patients who have cancer, which will hopefully not be the case with you. The type of biopsy that is ordered is based on medical criteria pertaining to your situation i.e. location of your suspicious area. So, if someone else says that they had an ultrasound guided biopsy, that was what was appropriate for them but doesn’t mean it’s appropriate for you.

    Doctors, physicians assistants, nurses, schedulers, etc. all have a role to play. The reality is that a doctor cannot handle every aspect of your care.They depend on other medical professionals when needed and schedulers, clerical personnel when they are needed. If you have any questions about why a particular test was chosen over another, your doctor probably has a patient portal or an email system to answer questions. All the best.

  • solermoon
    solermoon Member Posts: 3
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    Thanks moth, minus two and exbrngrl. Your advice is sound and you are right surgery is not without pitfalls. I've had 3 major surgeries in my lifetime and they had long recoveries and many setbacks as far as quality of life stuff. I will get the heredity testing and after my costocondritis goes away I'll have the MRI biopsy. My primary care ordered anti-inflamatorios. I like the idea of taking something like a muscle relaxer for the MRI biopsy. I will call and request that. I've decided to extend the surgeons appointment out since they'll want all these things anyway. I've been working with my primary office to get their portal working. It's been a challenge because they just switched systems. It’s not linking to my established info for another doctor using the same software so I can't see or send info for my primary care. You gals have been very helpful, supportive and have given me things to think about and bring myself back to earth. I finally read the report from the hospital and the mass is only 6 mm so it's not like I have to do anything tomorrow. This is something I've kind of been scared of and expected my whole life. When I was younger I stupidly turned down the genetic test thinking ignorance was bliss.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,761
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    One thing that you need to be aware of is that the vast majority of folks who develop breast cancer have no known genetic mutations for breast cancer. The testing has expanded far beyond BRCA 1 & 2. I believe they can now test for 30 some odd mutations. Bearing that in mind, I hope that you receive genetic counseling prior to any test to help you truly understand what genetic testing can and cannot tell you as well as the full implications of genetic testing. I have a family history of breast and gynecological cancers and I belong to an ethnic group with a higher than average genetic risk for breast cancer. So far, all my genetic testing has been negative.

    Breast cancer is generally not considered an emergency and during these times of COVID almost everything in the medical world moves at a snails pace. Waiting and having the unknown hanging over your head is very stressful. But... don’t borrow trouble as my mother used to say. Easier said than done, but give it a try!

  • trishyla
    trishyla Member Posts: 698
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    One other tip to get through the MRI guided biopsy is to ask them to put a wedge under your hips. My breast MRI was so uncomfortable that I had to make them stop. The pressure on my diaphragm was just too much. I told the tech to either relieve the pressure or cancel the rest of the procedure.

    After some hesitation. she finally found a wedge for me. We put it under my hips and voila! Worked like a charm. Took most of the pressure off my chest and we were able to finish. Don't know why they don't offer that in the first place.

    Good luck. Hope all goes well for you.

    Trish


  • solermoon
    solermoon Member Posts: 3
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    I had my MRI guided biopsy last week and all went extremely well. Most importantly I got my results as benign the next day. I asked my PC for muscle relaxers for the test but she sent me Xanex which she told me was better and would feel like I had a glass of wine. There was cushioning this time below my chest with only one breast having to be exposed so some of the weight was distributed to my opposite side on the table instead of a bar in the middle of the sternum and the head rest was stationary and comfortable. The whole setup was better. Speaking with the head of the MRI department may have helped. I even fell asleep so am glad for all the advice I was given here. You all are life savers. I was very anxious after the last experience being so horrible. I felt more comfortable also having a female in the room when they did the biopsy MRI. The last MRI was just me and a young kid. I think his inexperience is why I was so uncomfortable last time.

    Even though the procedure went well the recovery was more than I expected. I wish I had taken off work the next day since I was in a lot of pain. I managed to get through by working right handed. I'm left handed and draw all day with a mouse so it was difficult. I've read recently that the after is worse for those of us with dense breast. I think they had to go deep on me too at 11:00 on the right breast.

    I have appointments set up for genetic counseling and to see a surgeon about prophylactic treatment. I'm just checking out my options and I will have some control I can't stand all the stress of constant testing. I don't understand why in six months I have to have both an ultrasound and MRI. Why isn't just an MRI enough? My next question for the doctor. Any way thanks to all for the great advice given here!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Thanks for the update - they are always apprecicated. I'm so glad that the biopsy was easier than you'd feared, and Yay! to having benign results. So happy for you!



  • rah2464
    rah2464 Member Posts: 1,192
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    Solermoon what wonderful news! I am so glad you found the supportive care you need and to top it off benign results woo-hoo!

    As to the MRI plus US - every imaging modality has its limits. It sounds as though you are in careful competent hands to monitor you going forwards. I was a dense lady as well and so wish I had been imaged with MRI/US technology sooner. Perhaps then I would have only been diagnosed with DCIS. I do agree with you on the pain from the biopsy though. The doctor had to really punch hard to get through my tiny but mighty dense boobs. It was very physical and I was pretty bruised for a couple weeks after.