Anxious about today's appointment!

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jomako
jomako Member Posts: 20
edited April 2016 in Waiting for Test Results

I have been lurking here for a couple of weeks, gathering information and inspiration from the stories members have graciously shared. I have been dreading each day for the last week, knowing it was bringing me closer to today. On the one hand, I am desperate for answers while on the other hand, I am not sure if I am going to want to hear some of the potential answers.

Just a little over 3 years ago, I had a cancer scare. It was terrifying - I lost both of my parents to cancer within 6 weeks of each other in 2006, and between the lung nodules and lymphadenopathy, it was looking like an aggressive lung cancer or lymphoma. After a biopsy, it turned out to be sarcoidosis, which is a pretty rare diagnosis.

In the middle of March, I went for my first screening mammogram. Everything went smoothly and then in early April I got that letter in the mail informing me there had been a finding. So, I scheduled a visit to my internist, and then a week later spot magnification views were taken. At 5:30 that same day, I got a phone call from my internist and an appointment scheduled for the following morning. Based on my experience with my parents' diagnoses, I knew that wasn't a good sign.

Another week has passed, and I'm going in for a consult with a vascular surgeon recommended highly by my internist. I am full of questions. I am a BIRADS 4, no subcategory given. The spot magnification views showed mildly pleomorphic calcifications. Looking at the imaging, there appears to be over 20 spots that vary in appearance over a 2mm X 4mm area. No mass was detected.

I am not sure how much to trust the imaging, though. From what I am reading, it sounds like what is seen can vary quite a bit between ultrasounds, mammograms, and MRIs. Not that I am trying to borrow trouble, but I seem to do better when I stay reality based and fully aware of the situation. While it would be extremely rare for it to manifest in breast tissue, I don't even know if we can rule out the possibility of this being related to my sarcoidosis. I accept that there aren't going to be any real answers just based on imaging (I learned that lesson well during the diagnostic process for sarcoidosis) and that I am just going to have to wait for the biopsy, and if a procedure is done based on those results, then the pathology report will hold the best answers.

I have another consult scheduled with Moffitt Cancer Center next Thursday. I went through Moffitt when I got my sarcoidosis diagnosis, so it is a little surreal to think of returning so soon. They are a top notch facility, though, and I like the idea of being with one team of doctors through this entire process. I will find out today whether or not this highly recommended vascular surgeon I am seeing today is just a biopsy only doctor, or if he would be able to treat me through the entire process.

Anyway, I am just hoping for some grace and courage today. My list of questions is prepared, so hopefully I will get some useful information out of this visit, though I'm aware that a lot of my questions are probably not answerable based on the imaging alone.

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  • morelandks
    morelandks Member Posts: 51
    edited April 2016

    jomako - HANG IN THERE!!! Through my own BC process, the worst times have always been in the "before" times - when I was waiting for results, or getting ready to start the next phase of treatment and not knowing how Inwould tolerate it. I have found fear to be way worse and more debilitating than dealing with actual bad news or the pain of treatment. I can so relate to what youare feeling as you wait for the appointment!

    You are not alone, and you absolutely will get through this, whatever it may be.

    Good luck today, and please let me know how it goes.

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  • Momof6littles
    Momof6littles Member Posts: 184
    edited April 2016

    Good luck with today's appointment! I know that waiting and wondering it the worst part of it all. I'm like you, I like to have an understanding of what's going on/has the potential to happen. For me, that stems from my parents' diagnosis as well - they both died from cancer within a year from each other (mom had breast cancer, dad had pancreatic cancer). They were not fully informed as to how bad it was, and that was incredibly disappointing for everyone. I guess tha's why I try to understand worse case scenarios.

    I hope and pray for calmness, and greater understanding for you.

    Jennifer

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    Jomako --

    We are thinking of you today, too! Please keep us posted on what you find out!

    Warm welcome to you!

    The Mods

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  • jomako
    jomako Member Posts: 20
    edited April 2016

    Well, the meeting did not go very well with the surgeon. I had several questions for him, and after I asked a couple, he wondered why I was "intellectualizing" the decision whether or not to proceed with the biopsy, which he strongly recommended that I do. I was a bit taken aback - would he prefer for me to break down in tears or have an anxiety attack during this office visit?!? I guess I missed the memo stating that was the acceptable protocol. I took a moment and then explained that I already knew I was proceeding with the biopsy, I just wanted to gather some information about what the imaging meant and how things were going to proceed.

    In short, to be candid, I thought he was a jerk. But, then again, he is a surgeon, and I know a lot of surgeons are jerks, so that might not be a reasonable criteria to use in deciding whether or not he is the doctor I should go with. But, I don't like him and don't feel like I would be comfortable talking to him and asking questions knowing that he'd probably be thinking that I'm "intellectualizing" again.

    So, I allowed them to schedule me for a biopsy on Monday, but I am pretty sure I am going to cancel. Not just because I think he is a jerk, but because one of the questions I asked him was how many of these kinds of biopsies he does. He replied that he does 3 or 4 breast biopsies a month. That concerns me because the area to be biopsied is extremely small, and he was honest enough to admit that it was going to be difficult to hit that spot for the biopsy. If this biopsy fails, then we'd have to go with a MRI guided biopsy, which takes a lot longer and which he further reports that women do not like because they have to lie still and it is very noisy.

    I'm going to talk all of it over with my husband tonight just to get his perspective and make sure this is a good decision, and will likely call and cancel first thing in the morning.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2016

    I'm sorry you had a bad experience with your surgeon. I would find out if you can see a breast specialist. It sounds like the biopsy is the stereotactic kind? I had that done 10 years ago. They had to "shoot" the needle twice because the first time the calcifications were missed and scattered. Who knows if I had something going on since then and it was a false negative.

    I think the moment you feel uncomfortable with a doctor or clinic, you should not go back. So many women are led to do tests and treatments that they either don't understand or the risks are not explained. Good for you on asking the tough questions and being on top of your imaging. I wish you the best going forward and crossing fingers for benign results.

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  • morelandks
    morelandks Member Posts: 51
    edited April 2016

    Hi Jomako - I agree with LovingisLiving (what a great handle!) - trust your instincts. I, too, ask lots of questions - it's just part of how I process everything. I have had a wonderful surgeon, a fabulous medical oncologist, and an unbelievably lousy radiation oncologist (she actually yelled at me for asking questions). I stuck things out with my RO, but in hindsight I wish I had not. Being able to communicate with your doctors is such a huge part of the whole treatment process. So, if at all possible, I would encourage you to consider getting yourself to a teaching hospital that specializes in breast cancer. Ki

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    At breast centers it is usually interventional radiologists who do the biopsies. Lots of them every day. Not the surgeons.

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  • jomako
    jomako Member Posts: 20
    edited April 2016

    Thank you so much for your support and advice - it really helps!

    It is difficult to pass up the opportunity to get this biopsy done on Monday, but I already have a consult scheduled with Moffitt Cancer Center, which is the highest ranked cancer center in Florida, on Thursday. I was diagnosed with sarcoidosis at Moffitt a little over 3 years ago, so I have experience with them and know that their doctors encourage questions and are willing to patiently explain things until patients feel informed.

    I regret that it will add extra time to this very slow process, but I wasn't expecting the local doctor to be able to schedule a biopsy so quickly. Maybe Moffitt will surprise me as well and be able to schedule a biopsy quickly. My husband agrees that it is worth waiting to go to Moffitt so we can both feel comfortable with the doctors providing my care.

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  • dtad
    dtad Member Posts: 2,323
    edited April 2016

    You absolutely need to be comfortable with your surgeon. IMO it should be a breast surgeon preferably at a university based teaching hospital. I also agree that radiologists that specialize in breast cancer are the most skilled in doing biopsies. Also I had a MRI guided biopsy and it wasn't bad. I did however take a small dose of Ativan for the procedure. I think its really important to do whatever you have to to get a good specimen with one, not numerous biopsies. Good luck to you and follow your gut....

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