Waiting and waiting and waiting for biopsy

I apologize in advance. I'm just expressing my frustration over the delay in getting a biopsy and wondering if my experience is typical or not.

This past August, I finally convinced my GP to order a screening breast MRI. I had it on September 14th.

My background: I'm 67, have BI-RADS D breasts, annual screening mammograms (always normal results), and a very strong family history of breast and ovarian cancer. I've been told by the Hereditary Cancer Program here in BC that I'm high risk for breast and ovarian cancer, but they stop short of recommending screening breast MRI or ultrasound since I'm BCRA1 and 2 negative. (However, they did suggest I could consider prophylactic double mastectomy.)

My GP called on Sept. 19th with the MRI results. She had spoken with the radiologist—he'd found a suspicious nodule in the axillary tail of the left breast and recommended a targeted ultrasound and biopsy. She told me I needed a biopsy and should hear from the booking clerk within a couple of weeks about a date. The MRI report came available in my patient portal Sept. 23rd. It said the MRI detected a highly suspicious nodule and scored it BIRADS-5. I had the US done on Oct. 3rd, but the biopsy wasn't done. I wasn't given any explanation why they didn't do the biopsy and I didn't hear back from my GP's office afterward either. The US report was posted to my patient portal on Oct. 7th. The tech located a mass in the general area of the one noted on the MRI, but based on the US findings, the radiologist scored it BI-RADS 4 (he didn't specify if it was A,B,C, or D) but said I still needed a biopsy with clip placement due to the MRI BI-RADS 5 with follow-up MRI if the biopsy was normal.

I finally called my GP's office on Oct 10th when I hadn't heard anything from them or the hospital regarding the biopsy. I was told the hospital had made a mistake, that my GP had ordered the biopsy to be done with the US. She said my GP had spoken to the radiologist the day after my US and that my GP had re-ordered the ultrasound guided biopsy. They confirmed that the booking office had received the order.

I'm confused by the discordance between the two imaging reports. Also, I realize breast cancer isn't an emergency, so I need to be patient. I've tried to not freak out while I'm waiting, but thinking about that BI-RADS 5 makes it hard not to. I feel like somebody screwed up and no one bothered to keep me in the loop or explain the reason for the delay. I'm annoyed I had to call my GP to find out what was happening.

I apologize for the long-winded tome. It's been more than 5 weeks since my MRI and I still don't have a date for the biopsy. I hope I get a date soon.

Finally, has anyone had a biopsy done in the axillary tail of the breast? I've read they recommend a sports bra after a breast biopsy, but I don't think a sports bra would work for a biopsy in that area. Any suggestions?

Thanks!

Comments

  • needs.a.nap
    needs.a.nap Member Posts: 220

    Hello @arabrab22. I’m so sorry you’ve been in a state of worry all this time! I know I called my breast care center bright and early the morning after my ultrasound “just to make sure” they had received the referral from my doctor and yes they had, but not an order for review, so nothing could be done until that order was received but my doctor didn’t even realize they needed that. Sigh. It’s way too easy to slip through the paperwork cracks these days. Once they got the correct order, the breast care center did need to have their own doctor review my images before scheduling me for a biopsy (because my ultrasound was done at a different hospital). Anyhow, I had an appointment scheduled within two or three business days and the biopsy was scheduled for the following week … and that felt like way too long to wait for an answer! I’m really sorry you’ve been put on hold like this.

    Keep calling and asking!! I can appreciate having to wait a couple of days for a call back to schedule but this seems a little absurd. Can you call the hospital directly and speak to whoever does the scheduling instead of going through your gp to get answers? Not sure how things work there. I probably drove the staff insane with all my phone calls in the beginning … trying to make sure I was doing everything I possibly could on my end to make sure things were in motion. Who can blame us for caring?!

    Hopefully you can get your biopsy soon!! Hang in there!

  • arabrab22
    arabrab22 Member Posts: 2

    Hi @needs.a.nap. Thank you so much for sharing your experience and kind, encouraging words.❤️

    I want to feel like things moving along, so I can know what I'm dealing with. But right now it just feels like things are stalled…like I'm in limbo.

    I'm so glad you were proactive and made sure your referral was received and correct. I'm a retired RN and I worked for 28 years at our local hospital. I understand how things work there, but for most people who've never needed medical services beyond seeing their family doctor, I'm sure it must be a bit of a mystery. Folks will trust that every step will move along smoothly not realizing how complicated things can be within the medical 'system'. At work, on a patient's discharge, I would review their outpatient tests and appointments and instruct them to follow-up if they had questions or if they hadn't heard within a few days re: any outpatient tests.

    I live in British Columbia, Canada. Our health care system is quite different from that of the US. Here in Canada, each province determines for how their health care system is set up and what and where services are offered. I'm not aware that British Columbia (BC) has any dedicated breast care centers, but I think Ontario might. BC is broken up into health authorities according to region. Mine is Interior Health, which encompasses an area of BC the size of Oregon. Luckily for me, we have an excellent tertiary hospital in my city and the cancer center is located right next to it.

    Because the local hospital is a large referral center, there is usually some form of prioritization for referrals/tests/surgeries. Depending on the service required, there can be waitlists and those waitlists can be long if the urgency is considered routine or low, or it could be the same day if it was an emergency. I assume my referral for biopsy is considered urgent, but what that means in terms of waiting for an appointment, I have no idea. My GP said I should hear within 2 weeks from the booking department, which was the case when they called for the US on Oct. 2 to schedule me for the next day. I'm about 2.5 weeks waiting now since my GP sent in the second/duplicate booking form/requisition. Fingers crossed, I'm hoping I'll get a call by the end of the week. Some departments don't mind if patients call. I don't know who does the booking when they have to coordinate scheduling a biopsy with the US department and a radiologist. My doctor's office has confirmed that the booking form was received by the hospital so at least I don't have to worry about that. I guess I could call the imaging department. When I was still working, I always found the clerks very accommodating as a professional courtesy. Now that I'm retired, I don't know how helpful they'd be.

    Again, thank you for sharing and your supportive words!! (I do hope someone will be able to answer my question about the sports bra and what is needed after a biopsy done in the axillary tail of the breast (the bit of breast that extended into/below the armpit)

  • needs.a.nap
    needs.a.nap Member Posts: 220

    Good morning @arabrab22. I’m definitely a “newbie” with medical things, having needed no specific medical attention in years and never having worked in healthcare to gain experience. It does sound like things are quite different for you in BC. And you know the ins and outs of it all … which seems like a great advantage. I look back and realize how ignorant I was about so much. I’m learning that there are a lot of pieces that have to get put into place to make each appointment happen.

    I truly hope someone here can answer your question. Possibly a sports bra would be comfy - some go pretty high up under your arm. I went and bought a sports bra for my biopsy because I also had read that and I eventually wore it (and loved the snug support of it!) but in the beginning they gave me a tube top compression garment to wear because I had a hematoma from the one area biopsied on the upper corner of my breast. The other area on the underside of my breast that also was biopsied was only a tiny bit bruised and I hardly even noticed that. I don’t think my experience helps you though. Apples and oranges!