Frustrated with process

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KB1012
KB1012 Member Posts: 4
edited July 2018 in Not Diagnosed But Worried

Hi. I’m 45 & have been going for mammograms for years due to my Mom having breast cancer. This last one they called me back for additional pictures. I was then cleared. Due to dense breasts my doctor also wanted me to have an ultra sound this year (first year for that). So that had been scheduled before the mamogram callback. On the ultra sound they found 2 nodules & recommended a biopsy. I made the appt which was supposed to be tomorrow. My doctor won’t authorize it because they want me to see a surgeon. So I made an appt with who they wanted me to see but it’s only a consult not a biopsy So now I have to wait even longer to find out. I can barely even eat I’m a so sick over this. Then the breast specialist I called couldn’t believe I didn’t know the correct terms for what was found, nodules,cysts etc She said I should be more aware of my health. So I’m very scared & frustrated. I’m supposed to go away with my family in a few weeks as well.

Has anyone else had these issues with the process?

Comments

  • Polly413
    Polly413 Member Posts: 124
    edited June 2018

    KB102

    I am sorry you are going through this. I am not sure what you mean about the "breast specialist" -- whether this was the breast surgeon you mention or an oncologist. Whichever it was though what they said seems odd as we patients are so worried and shocked its difficult to get all the terms straight at first. I had the opposite experience because the radiologist who told me that I needed to see a surgeon was a very experienced radiologist who I had requested read my mammos for 18 years and a friend as well so when he said I likely had cancer and needed a biopsy I believed it was cancer for sure. So when I called for an appointment with the surgeon and told the staff person I had cancer (rather than say I likely had cancer), she was confused how I had been diagnosed already without a biopsy! But she didn't press me for exactly what I had. After all before the appt I would send the mamma report to the office. Don't understand why the specialist needed to know the exact terminology when some radiologist had told you that you need a biopsy and I can see it was upsetting to be fussed at when you are scared already. It is hard to wait for answers but you will probably find in general that things move slow or seem to from a patient's point of view. I "knew" I had cancer on April 27 but my biopsy was not until May 19 and my surgery was not until June 15 -- a full 6 weeks or more from the mammo. You will worry no matter what I say because that is what we all do when we start this unwanted process but I send you good wishes. Polly

  • Angel1109
    Angel1109 Member Posts: 21
    edited June 2018

    I'm so sorry KB1012!

    I know the process sucks! I went through this with my mom (though she seemed to get a bit more sympathy and expedience from the medical providers than I feel I'm getting) and now I'm going down this road. I have been getting the run-around and no sympathy and in fact coldness at times from some. I can't even get my biopsies scheduled until I hand deliver my CD of images to the hospital. I don't drive bc of multiple chronic illnesses that are disabling. So next week I'll be able to get a ride to deliver the disk and then schedule biopsies from there. But the not knowing is hell. I'm sorry! I can understand. The more time passes, the more thoughts run through your head. I will be praying that your nodules will actually turn out to be benign. Sending you virtual hugs <3

  • NancyD
    NancyD Member Posts: 3,562
    edited June 2018

    That "breast specialist" should remember that at the beginning of all this, most people don't know the medical terminology. I guarantee you, though, that if you go through a biopsy—and find out it's cancer—you will learn them all very fast. One way to make sure you get the terms correct is to ask for a written report of your visits/consults. Or have a close friend or relative go to the appointments with you to take notes and ask questions that you might forget to ask. I was very fortunate to have a sister whose husband was a doctor come with me. Being a doctor's wife doesn't always give you knowledge in these situations, but she knew WHAT to ask so that I had the answers I needed.

    Good luck. I hope your nodules are benign.


  • beach2beach
    beach2beach Member Posts: 996
    edited June 2018

    Is the Dr. who wants you to see a specialist a GYN? I had been going to see the same radiologist for years. Also dense breasts..routinely would have mammo then sono. Sono is what picked mine up. Anyway my point is the radiologist when she came in and looked at the sono, recommended a biopsy. I scheduled it with her then and there. They of course reached out to my GYN who gives me the script for mammo/sono and they called to say they were advised of the recommendation for a biopsy. Had it done within a few days.

    Your Dr who wants you to see a surgeon should be telling you what they see and why they recommend you see a surgeon. Perhaps the dr. thinks a biopsy may not be necessary? I would call and request a copy of my mammo and sono,,and the report, pick it up and take it with you.

    wishing you benign results. :)

  • KB1012
    KB1012 Member Posts: 4
    edited June 2018

    Thank you everyone for listening & your positive wishes. I happened to mention the story to someone today not a great friend but someone I know well. She has seen the same dr that I have an appt with next week! I had no idea for the past year she had a suspicious area that was being monitored. It made me feel better knowing someone that went to him. She even offered to drive me!

  • Egads007
    Egads007 Member Posts: 1,603
    edited June 2018

    KB - hoping all goes well for you and im very glad you have a support buddy...so important. As for the doc...don’t put up with any crap about ‘knowing your health’ situation better. Like the others have said, most doctors realize that the ‘newness’ and anxiety of the situation drives most of it straight out of our heads! Besides, I’m sure the surgeon will have a copy of the report sitting in the desk when you go into the appointment. Sheesh, how many levels of rude was that! It was all a foreign language to me at the start, as it is for most of us, so I hope you weren’t made to feel foolish. Again, crossing my fingers for you, keep us posted!
  • Ah262
    Ah262 Member Posts: 19
    edited June 2018

    I’m also awaiting a biopsy and am very frustrated with the whole process. I feel like I’m getting the runaround every where I turn. I hope it gets straighten out for you soon and get clear resilts

  • Beatmon
    Beatmon Member Posts: 1,562
    edited June 2018

    Definitely dump the surgeon that chewed you out. I be sure and let the referring doc know

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Ditto, find another surgeon and get the biopsy.

  • KB1012
    KB1012 Member Posts: 4
    edited July 2018

    Update: so I saw a breast surgeon so he recommended the same as the radiologist. I had the biopsy & while both came back benign one had enough suspicious cells that the doctor wants to remove it. So I have surgery scheduled for 7/31 because I leave for vacation tomorrow. I went for pre testing yesterday & my chest X-ray came back abnormal! So I went back today for another one. So as if I wasn’t already a wreck about having surgery for the first time ever now I have the abnormal chest X-ray. I leave for vacation tomorrow. I’m trying to think positive thoughts but I’m a wreck!

  • fishfish
    fishfish Member Posts: 32
    edited July 2018

    You are not the only one, we are all in the same boat. Since my family doctor "found" something on my breast in March 2018, They never stop requesting me to do testing, it is already July 2018. I had 2 mammograms (one in the imaging company, one in hospital) 2 Ultrasounds (one in the imaging company, one in hospital) 1 full breast examination, then i have to go do one biopsy on the hospital on my right breast, then an MRI. Before i even get the result from the MRI, the hospital already request me to do yet another biopsy. This time on the left.

    I am communicating to both the hospital and its outreach office. They have absolutely no communication between them. I got booked for a biopsy in the hospital before I get my MRI result in the outreach office. The hospital give me no options and assume I have no life and I can take whatever day off to do test. They even call my dad (who is in the emergency list). They insist they don't have my cell-phone, and cannot reach on my home phone. My dad got all freak out to hear the call from the hospital. The hospital told my dad it is for a checkup, and when I called back, they told me it is for an biopsy.

    Do they know how much stress that people have to do all these tests? Do they know that it really affecting our whole family. Do they know they are affecting our mental well-being."Better safe than sorry" is no longer a reason to do more tests. I am just as frustrating as you are. I really want to let you know, you are not the only one,

  • KB1012
    KB1012 Member Posts: 4
    edited July 2018

    thank you fishfish! You are right it affects the whole family & our mental health! I downloaded calming music to help me tekax

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