What does this even mean?

Options
MayDayMelK
MayDayMelK Member Posts: 69
edited July 2019 in Waiting for Test Results

To make a long story kinda short, I started having pain, increase in cup size, and discharge back in Nov 2017. I had a mammogram in early 2018 that was abnormal (only BIRAD3) but due to family history the decision was made to do a stereotactic biopsy. The results in Feb 2018 were:
"Fibrocystic changes including fragments of cyst wall and patchy columnar cell change. Clinicoradiologic correlation is recommended." To me I feel like they were questioning if the surgeon even hit the target.

Everything was chalked up to cysts but the columnar cell changes meant they wanted 6 month follow-ups, but I lost my insurance and just got back to it last month. They did the tomo 3D mammo this round and said that while it didn't look malignant, they suggested an MRI with and without contrast because when they compressed for the mammo I had bloody discharge. I met with my PCP who referred me out for the MRI but did tell me that I may want to consider shopping around for a breast surgeon while I wait for the MRI.

I'm only 33 and I've been in surgical menopause for 8 years now. I cut out 90% of my daily caffeine, lost weight, etc and have been more physically active since all this started in hopes that it was hormonal but my breasts have become more sensitive and painful, moreso the affected breast.
Does anyone have any experience with this or insight?

Comments

  • OnTarget
    OnTarget Member Posts: 447
    edited June 2019

    Hi MayDay,

    I'm sorry, I have to admit that I have no idea on your diagnosis, but I wanted you to know that I wish you the best of luck with it!

    Waiting is the hardest part, and I hope that you get good news!

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited June 2019

    Thank you! I feel like this has been drug out for SO LONG now so I wish they would get on with whatever needs to be done. I'm trying to stay in good humor but I'm over the pain, discharge, and unknown.

  • CGLion
    CGLion Member Posts: 56
    edited June 2019

    May, I was wondering if you had your MRI yet and if you got your results? I just had mine Sunday and they stated it is suspicious for ductal carcinoma. I have to go back for a second look mammo and US to look just at the area found on my MRI. I'm hoping they can do a biopsy at that time and that I won't have to wait and schedule a MRI guided bioposy. Really just looking for someone in similar shoes. Right now, after reading the report, I feel like I want to cry because it seems so certain now. But I also feel like I don't yet have permission to cry since it still is not definitive without a biopsy/pathology result.

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited June 2019

    CarissaRae I completely understand what you mean. They had to move my MRI to another facility so I will be having it tomorrow. I had a biopsy over a year ago that had columnar cell changes and they feel that I likely have something going on in the ducts due to the bloody discharge I've had. I'm kinda ready to cry myself because it is mentally taxing having to wait through all of this. Did they give you your report then or did you have to wait for the office to call you?

  • CGLion
    CGLion Member Posts: 56
    edited June 2019

    I was kind of a bad patient, lol. I had not heard from my doctor for 3 days so I went to the imaging center and asked for a copy of my report, since I was told it would be done within 2 days. I thought they would tell me no but they gave it to me without any question. The next day I called my doctors office in the afternoon to make sure they had received the report. I thought they may not have received it since I was sure they would call immediately once they read it. The receptionist told me they had received it and put a note in that I had called inquiring. 30 minutes later another doctor called and told me my doctor was on vacation and that the report had just been sitting in her inbox, overlooked. I admitted I had already read the report and she advised the results were concerning and not what they had expected, while apologizing they had not called earlier. She told me they always do a second diagnostic mammo and US that specifically looks at the areas that are first found on MRI. That is now scheduled for next Wednesday and they will do a biopsy at that time if they can see it. Otherwise I will have to wait and schedule a MRI guided biopsy. I've never had a biopsy before so that itself will be a learning experience!

    I am so sorry your MRI had to be postponed!!! I'll be thinking of you tomorrow, and that it will give you some answers to what is going on. It is crazy how stressful this waiting and wondering about the unknown is.


  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited June 2019

    I'm so glad I'm not the only one who has done that. I got my results for my stereotactic biopsy myself lol. I had waited for a week and got them myself the same way you did. I told my husband that I will be back at that hospital on Wednesday for our daughter to have an ultrasound so I will just grab it then if I haven't heard anything. (If it was closer than an hour away I would go Monday.) The MRI itself was pretty uncomfortable today, it's hard to keep my arms raised directly above my head since I had neck surgery.

    I had the stereotactic biopsy and other than some pressure it wasn't horrible. I was able to handle the pain with Tylenol afterwards. Just be sure to ice if they do get to go ahead and do it. Thank you for your kind words! I will be thinking of you on Wednesday!

  • BevJen
    BevJen Member Posts: 2,523
    edited June 2019

    I am pretty sure that your imaging center/hospital/whatever has to give you your reports by law. You can get a printed copy of the report as well as a disk with any scans on it. My previous MO didn't call me with results very quickly, so this has become my modus operandi -- go and get the reports myself and then see if the MO will talk about it once she knows I have the reports. Personally, I think it's inexcusable that MOs do not call cancer patients with test results as soon as they can -- and by that, I mean the day that they receive the reports.

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited June 2019

    I completely agree with you there BevJen. I think they should set it up where you are notified the same as the doctor, IMO. My daughter has a really really rare neurological disorder and I have learned that even if they doctor gives me their opinion of the report, I want to read over it myself. Having been in the medical system with her for over 8yrs straight now has led me to not trust doctors who don't give you all the information. I am trying my best to be patient but if I haven't heard by Wednesday I will be getting a copy of it.

  • CGLion
    CGLion Member Posts: 56
    edited July 2019

    BevJen, thank you for telling me that! I'm thinking of telling my doctor to just hand me a copy of the report in the future so I can read it over and ask questions instead of them giving me their summary. I have found it amazing recently how much information is actually provided in the report. I don't understand why they choose not to share it with us especially considering how poor their communication can be. I had a chest x ray after surgery in January. The report was posted in my patient portal and it stated I had a slightly enlarged heart. This is brand new since I just had an Echo 2 years ago and am under the care of a cardiologist. I figured that information would be given to my cardiologist but found out it was not at my last appointment. My cardiologist was surprised when I asked about it. It is scary how much it seems like important things actually are slipping through the cracks.

    MayDay: Yeah the MRI sucked! I had a cervical rib and first rib removed in January due to pinched nerves and that arm positioning was not fun! Has me really hoping they can do a stereotactic or US guided biopsy. Hoping you get a call today or tomorrow so you don't have to wait until Wednesday!

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited July 2019

    Thanks! I got a call today that said that my precertification wasn't done for the MRI Friday so they want payment OOP which is $5800 so I got to to deal with that, but no results. :/

  • CGLion
    CGLion Member Posts: 56
    edited July 2019

    I am so sorry that ended up being your first phone call!!! Honestly I'm kind of pissed for you about their lack of tact. :/ I've been very lucky in that regard so far. My imaging center used to be really bad about demanding payments immediately, but this go around I even offered to pay before the procedure and they told me not to worry about it and to just wait for the bill in the mail.

    Hopefully having to make those phone calls helps with keeping you distracted while you wait.

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited July 2019

    Yeah I wasn't very happy. I got the nurse and she said they're working on it now but that they won't call me about results til next wee because they're taking the 4th off. So I will be grabbing it myself I guess tomorrow. 🤷 My kiddo has some appointments so at least it won't be wasted gas. Do you go in the AM or PM tomorrow? I will be thinking good thoughts!

  • Ali_R
    Ali_R Member Posts: 7
    edited July 2019

    I hope the report has nothing but good news today. Thinking nothing but the best for you!

    Al

  • CGLion
    CGLion Member Posts: 56
    edited July 2019

    Mayday, thinking of you and hope you were able to grab your report today. And double hope that it provided you with answers and not more questions!

    I had my second look mammo and US today. The mammo was still clear, but the radiologist came in after the US and they took more images. They looked really closely at several locations but were not able to get anything definitive in relation to what he saw on the MRI. He told me he was still concerned and didn't feel comfortable with waiting and watching.

    He said he wants to do an US guided biopsy. He said he will take several samples throughout the ductal area behind my nipple making a couple passes. That is scheduled for the 11th. I just really hope this provides a definitive answer as to what is happening.

    Hope to hear from you soon,

    Carissa

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited July 2019

    I did get it, and it was good news. It stated that there were no signs of malignancy, but it did suggest to have ductal excisions as they could not rule out DCIS with my symptoms. I am waiting on my doc to schedule me to come back in and speak with her and go from there. I want to consider all options and find out what my risk percentages are before deciding on how much I want them to take for the ducts. They had suggested a reduction removing all ducts and lobules previously but I worry that having surgery that might create scarring that could mask cancer in the future knowing our family history. So I'm thankful that there were no signs of widespread malignancy, but still left with questions as far as what we want to do moving forward.
    I'm hoping you get a definitive answer soon!

  • CGLion
    CGLion Member Posts: 56
    edited July 2019

    I am so happy for you getting that great news from the MRI....But I'm sure you have some mixed feelings due to the additional recommendations meaning it is not really over yet. I found a summary of a study about the effectiveness of MRI in detecting DCIS. I thought I would share so it can maybe aid in to your decision making with your doctors.

    https://www.cancernetwork.com/breast-cancer/mri-ac...

    It is so hard with nothing being able to give that 100% assurance that everything is ok. I'll still be poking in on this post if you decide to continue to keep up updated on what is going on. And if I come across any other articles that might fit what you have to consider I'll post those here also.

    I hope you have a wonderful weekend!

    Carissa

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited July 2019

    Thank you CarissaRae!!! I'd love for you to keep me updated and vice versa if you would like to as well. I feel like this was wonderful news, but yet not the final answer if that makes sense. My husband thinks I should definitely have the excision to give me a peace of mind, but supports if I decide to have a PBM.

  • CGLion
    CGLion Member Posts: 56
    edited July 2019

    Mayday, that would be great! I'll make sure to let you know how the biopsy goes Thursday. I'll also update you when I get my pathology results.

    I'm hoping you get scheduled quickly to talk to your doctor. And very happy you have a supportive husband :)

    hope you had a great weekend!

  • MayDayMelK
    MayDayMelK Member Posts: 69
    edited July 2019

    Thank you! We ran away for 2 days to Atlanta to take our oldest to meet up with his best friend. We did the Atlanta Aquarium and the World of Coke so they had a lot of fun, which also helped me in waiting for my doctor's office to get back. They always shut down for a week around the 4th.

Categories