I was refused a mammogram. What now?

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JenniferEver
JenniferEver Member Posts: 5
edited February 2018 in Not Diagnosed But Worried

Background: I am 33, and I am definitely not pregnant. I have two kids and breastfed for a total of seven years. Due to this, I like to think I know my breasts pretty well. My youngest is six and he weaned three years ago.

No significant family history aside from a grandmother who had lymphoma of the breast in her 80s.

I'd never had any issues with my breasts until about two years ago. It started with swelling and pain that came and went with my cycles and I thought very little of it.

Then, I developed bilateral palpable cysts that didn't change with my cycle. They hurt all the time to the point where I need constant compression. It hurts to shower because it requires me to remove my bra.

Then, my right breast randomly started producing colostrum again and grew a cup size. This was about...8 months ago?

I'm a busy nurse who seldom is able to take time off from work. Plus, my partner is dealing with metastatic thyroid cancer (3rd recurrence) so I ignored all of my stuff to get him through his.

The pain got worse. I cut out caffeine completely and took primrose.

About two months ago, my partner (fresh out from surgery) discovered a nodule almost completely under my right nipple. It's hard. It's fixed. It's oblong, but about the diameter of a large English pea.

At the same time, I developed two weird red flaky patches on the top (cleavage area) of my left breast.

So, I went to my midwife and showed her, and told her everything. She took a look and found enlarged axillary lymph nodes on both sides, and she was particularly concerned with the hard lump under my nipple.

She told me to not wait, and that she wanted me to have a diagnostic mammogram followed by an ultrasound. She also ordered blood work. That was a month ago. Like I said, it's really hard for me to get time off from work. The requisition says, "Suspected malignant neoplasm of right breast. Suspicious findings right and left breasts."

When I called to schedule with my local breast center, the receptionist had a really awful attitude. I read to her the requisition and she said, "Well, we don't do it that way. Due to your age, you get the ultrasound first and the radiologist will decide if you need a mammogram."

Whatever, I made the appointment and jumped through hoops at work to get coverage for today.

The appointment was at 1000, I arrived at 0915 so I could get the blood work done first.

The receptionist was nice this time but seemed confused because it was scheduled for ultrasound first and screening mammogram second, even though my orders said diagnostic mammogram and then ultrasound if indicated. It was also in her computer to only check my right nipple area and not both sides.

I explained to her that I had some weird stuff going on bilaterally and asked that she call my midwife's office for clarification. She said she would.

I was called back to undress. A tech came in, asked me to show her the lump (I did. She felt it and nodded as if to acknowledge its presence) and then she ultrasounded my right nipple for about two minutes before getting up and saying she needed to speak with the doctor.

After about five minutes, she came back in and said I could get dressed. She said I have dense breast tissue and that she can't see through it on the ultrasound. Then she said the doctor didn't think I needed a mammogram because of my age. Then, she said it felt like it could be a normal dense breast tissue lump.

I asked about the other cysts. She said, "have you tried primrose?" I asked her to check. She told me she didn't have orders to check anywhere else. I told her about my conversation with the receptionist and asked her to check to see if they'd received clarification. She said that I had a very low risk of cancer because of my age.

"Because of your age" is something I feel like I'm hearing a lot of...

I told her that I have pain, and even if it's not likely to be cancer, I would elect to have the cysts drained because of the discomfort they're causing (Again, I breastfed for SEVEN YEARS- it takes A LOT for me to say that my boobs hurt!) and that I wanted them looked at.

She said if my provider wanted, I could get scheduled for an MRI at a later time, but, "everyone has dense lumpy breasts at your age".

And then she left the room. I mean, she was nice about it, I was nice about it...but I burst into tears as soon as I got to my car. I didn't know what to do. It FEELS wrong. It feels like they're dismissing me solely on age.

I was not asked about my symptoms. I was not asked to point out other things. I did not speak with a radiologist. No one examined me even though I was ASKNG them to.

So, I had nothing to do (I was in there for a total of 20 minutes) and decided to go talk to my midwife. I drove there and explained to the office manager what had happened. Everyone in the office was pissed. They did resend the clarified requisition as soon as they received the request.They asked if I could reschedule it. I can't. Not for another month.

They made me an appointment for April 20th for a manual re-check and said they'd call me with the blood results and ultrasound report. Said they were so sorry and they'd call me if they needed to see me sooner.

That was that. I came home.

Can someone tell me if I should feel relieved by any of this or really, really, pissed off? I'm leaning towards the latter and would really like to understand WTF just happened.

Thanks for reading.

Comments

  • Lula73
    Lula73 Member Posts: 1,824
    edited February 2018

    You know, I’m hearing more and more of this as I’m hearing more young women get diagnosed at the same time. If you’re off the rest of today, I’d call midwife back and see if she can call breast center to get you back in for that mammogram today. Alternatively, go for the MRI instead. Especially if they want to pull the dense breast card. MRI will be more accurate anyway. Many MRInplaces are open super early and close super late so perhaps it would be easier to schedule around your current work schedule. Good luck!

  • JenniferEver
    JenniferEver Member Posts: 5
    edited February 2018

    If the midwife is still concerned, I don’t think I’ll be returning to that particular breast center. I feel that they should have called my provider to get the orders clarified and not dismissed me prior to receiving an answer. Furthermore, dense tissue or not, clearly my midwife wanted SOME kind of imaging done, this was in a building with an Urgent Care and CT/MRI capabilities. Why not call for those orders while I was there? I told them about my scheduling issues

  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited February 2018

    The way I see it, YOU are most important in this. More important than any careless, unprofessional medical personnel. More important than any tight schedules. YOU must make yourself a priority and get someone to take you seriously, no matter what it takes. YOU need you, your family needs you and you should fight for a diagnosis no matter how many days you have to take off work to get properly diagnosed.

    Dr's that say you are too young make me so angry. My reply would be: "how would you react if I were 50?" Don't let anyone put you off. Stage a sit-in if necessary but don't take no for an answer

  • Knitpig
    Knitpig Member Posts: 42
    edited February 2018

    Call your midwife and tell her you were refused a mammogram. Ask for a referral for a breast MRI. If it does turn out to be cancer you'll get an MRI anyway to determine the extent of the disease.

    The attitude of the people at that breast center are why women in their 30's usually present with later stages of cancer.

    You need to be your own advocate.


  • teachermomfl
    teachermomfl Member Posts: 104
    edited February 2018

    I've never heard of ultrasound being recommended before mammo. Did the radiologist confirm it's a cyst? Absolutely talk to your midwife about this, but if you have dense breasts, the mammo will likely not show anything the ultrasound didn't.You can try for an MRI, but they can be hard to get approved by insurance unless you've been diagnosed with something already, like cancer or ADH. If it is a cyst, it may be difficult to aspirate, given the location. I'm sorry you were treated this way by the imaging center.

  • JenniferEver
    JenniferEver Member Posts: 5
    edited February 2018

    My partner just did that. Left work early. Went down there. Spoke with a supervisor. Advocated on my behalf. Which is funny, because I do the same thing for him. I just had the right-sides mammogram. They saw the lump, and felt it, but said nothing showed up on the scan. They recommended following up with my midwife and watching it closely. I need to see someone about the cysts. That wasn't addressed addressed at all

  • JenniferEver
    JenniferEver Member Posts: 5
    edited February 2018

    you’re the same age as me..

  • JenniferEver
    JenniferEver Member Posts: 5
    edited February 2018

    They said “normal breast tissue”. It’s NOT normal. I wish I could show pics. You can see it if I pull the skin tight around my are

  • Lula73
    Lula73 Member Posts: 1,824
    edited February 2018

    ask for the mri.

  • Knitpig
    Knitpig Member Posts: 42
    edited February 2018

    Yes- we're the same age. It happens. There's no such thing as "too young" for breast cancer. I'm glad you got the mammogram.


  • Icietla
    Icietla Member Posts: 1,265
    edited February 2018

    >>There's no such thing as "too young" for breast cancer.<<

    ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

    True. This little girl was diagnosed with breast cancer at age eight.

    https://www.theguardian.com/us-news/2015/nov/24/eight-year-old-utah-girl-breast-cancer-chrissy-turner

    Case of another little girl, age six__

    https://www.ncbi.nlm.nih.gov/pubmed/10813345/

  • bevin
    bevin Member Posts: 1,902
    edited February 2018

    are you in the usa? I'd suggest calling your general practiotioner and have him or her order a breast mammogram. The radiologist doesnt determine what test you get. If a doctor orders a mammogram the imaging place muat follow the doctors script. Good luck.

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