Legitimate concern for breast cancer

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Annette43
Annette43 Member Posts: 6
edited December 2021 in Not Diagnosed But Worried

Yesterday found 2 solid lumps in my left breast. They are not lymph nodes and painless. One is about an inch, the other about 1 cm. They were not here on breast exam at GYN last year. I am 43 and mom was diagnosed with stage 3b invasive ductal carcinoma at 44. I have been put on Cellcept and birth control pills for first time in my life in early 2021. Both increase risk for cancer. Have since stopped both.

Starting 3 weeks ago I had new onset neurological symptoms including loss of balance, vision, hearing, and transient episodes of numbness. I have had neurological symptoms diagnosed as an autoimmune encephalitis in response to a benign tumor with ectopic brain tissue in my ovary (teratoma) a couple years ago (this is why I was put on Cellcept). I recognize this as a similar reaction except it seems to be involvong my brainstem and I am concerned for paraneoplastic encephalitis. I have to go through ENT before neurology will see me. I have also had 30 lb unintentional weight loss over the past 2 months with no associated GI symptoms.

This is not anxiety but legitimate concern based on symptoms and family history. Never had a mammogram in my life and my doctor does not like to order tests or give referrals - everything with her is a battle to get. I have valid concern this may be breast cancer and under a lot of stress because of it.

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  • Jelson
    Jelson Member Posts: 1,535
    edited November 2021

    Can't you change doctors? at 43, with a family history of breast cancer, you are overdue for a mammogram. Could you go to an Emergency Room with your neurological symptoms? How frustrating and concerning this is.

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  • Annette43
    Annette43 Member Posts: 6
    edited November 2021

    I am on Medicaid and working on switching PCP. The problem is for new patient appointments doctors are booked out for months.

    Went to ER 5x at every hospital here. I have no sense of equilibrium 24/7 and hearing loss. Sent home from every one with diagnosis of “anxiety” for my neurological symptoms. Neuro says it could be vestibular neuritis, go to ENT first. On waiting list for ENT. My mom noticed her lump in late 30s and it was also dismissed as anxiety. They did not take her seriously til her nipple puckered and breast ulcerated at 44.

    Situation is extremely frustrating


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2021

    I'm sorry. There are so many issues with healthcare in this country, and on top of that, the sexism that leads to women's concerns being dismissed as anxiety is infuriating.

    I think your major priority now has to be to find a healthcare team who will actually work with you on everything/anything, but for the cancer specifically, is there a Planned Parenthood you can go to? They specialize in women's health, they have sliding scales for payment and take insurance, and hopefully they will be more likely to take you and your symptoms seriously. They may also have referrals networks.

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  • Annette43
    Annette43 Member Posts: 6
    edited November 2021

    Didn't know PP could do mammograms, or maybe order one? I have never been there before. Will call on Monday. Hope they don't need a referral from my primary. Thank you

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  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited November 2021

    Wow, Annette, I do hope you can find some competent care and SOON.

    Keep us posted.

    (((hugs)))

    Carol

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  • serendipity09
    serendipity09 Member Posts: 732
    edited November 2021

    Annette - I know how scary it is and I hope you get some answers soon! It makes me so sad to hear that you and so many others have to deal with the agony of waiting. I'm so sorry you are going though this.Sending you warm thoughts. Please keep us posted. {Hugs}

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  • kksmom3
    kksmom3 Member Posts: 183
    edited November 2021

    You can probably even do a walk-in at your local women's health or wherever they do mammograms. No appointment needed. Regardless, you need one at your age. Good luck!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2021

    Annette, whatever else is going on, here is the message your doctor needs to hear: "I found lumps in my breast. My mother was diagnosed with breast cancer at this same age. I need to see a breast specialist in the next two weeks."

    It seems like some doctor wrote "anxiety" in your record, and now that gets passed along to every doctor, enabling them to dismiss you rather than admit they do not fully understand what is going on, or put in the work to get you appropriate and timely referrals. I'd want to say to the doctor, "Do you really want to be the doctor responsible for a delayed diagnosis of breast cancer?"

    As far as the new patient appointment, call and explain to the new office that you are currently having a problem -- "I found lumps in my breast. My mother was diagnosed with breast cancer at this same age. I need to see a breast specialist in the next two weeks." -- so can they please fit you in now for this issue rather than wait for the standard new patient appointment. If they will not, call whatever Medicare representative or nurse navigator you have access to. Be clear and concise. Don't muddy the waters. Just tell them about the breast lump and family history. And try not to sound anxious!

    I'm steamed on your behalf here.

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  • Annette43
    Annette43 Member Posts: 6
    edited November 2021

    Primary said no mammogram until she examines me for lumps. Appointment with her is in 3 weeks. Totally ridiculous. Planned Parenthood said they don’t do mammograms but trying to find out if they can order one

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2021

    Ugh Annette43, that is so frustrating. I'm sorry the PP lead was a bust.

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  • Annette43
    Annette43 Member Posts: 6
    edited November 2021

    What PP told me is they can refer me to a specialist who could order a mammogram, but not put in the order for a mammogram. In any case, I called up every GYN and Women's Center I could find that accepted my insurance, and one of them had a last minute cancellation and could see me today. I went down there and the GYN ordered a mammogram. She said I should have had one starting at 34 because of my family history. On the way home from the appointment, my primary's nurse sent me a MyChart message relayed from my primary, basically scolding me for asking for the mammogram to be ordered urgently and without doctor seeing me in person first to examine for lumps first. Geez. Really got to switch primaries at this point, anyone will be better than this one.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited November 2021

    Well done, Annette! Can you choose this gynecologist for your primary care provider? I seem to remember that was a possibility with an HMO I used to have.

    I don't know what kind of power trip that PP and nurse are on, but it will be so good to get away from them. They seem to have forgotten the Provider part of their job! Is it their job to withhold even standard screening from you, let alone special screening based on family history? Play it cool, because they can write things in your chart. When you do switch, you'll want to check your records for accuracy. But for now, just address the breast concern. I hope all the findings are benign! Please update us when you can.

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  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited November 2021

    Annette, good for you! And like Shetland said, shame on your PP and his/her nurse! Power trip indeed. Are you keeping a log of all of your conversations? God forbid something shows up, but IF it does, it might just bring them down a notch in their opinions of themselves. Maybe they'll even LISTEN to their patient (you know, the one that has entrusted their care to them???) the next time. Sheesh!

    Will be looking for your update.

    Carol

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited November 2021

    Annette, when I fired my primary doctor a few years ago, I did it by email and laid out all the reasons I no longer wanted her as my physician. I figure it never hurts to have a written record showing MY concerns, since they can enter anything into their notes.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2021

    I sent a certified letter when I fired my previous PCP stating all the things Alice mentioned.

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  • Annette43
    Annette43 Member Posts: 6
    edited December 2021

    Got mammogram, they are benign lipomas and I have been recommended for high risk clinic and possible breast MRI depending on their eval. Mom's cancer had either grown from or into what was a lipoma, which was part of why it was dismissed as nothing until it was advanced. Fired my old PCP and was fortunately able to establish a new one.

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  • Jons_girl
    Jons_girl Member Posts: 696
    edited December 2021

    Hi Annette:

    I read a lot of posts here. I'm so glad you fired your PCP. What a unprofessional PCP! Wow! Often people with Medicaid aren't treated right by their drs! I have a friend who's gone through so much and who's still waiting for answers!

    Im so glad there was no cancer on your mammo!!

    The main thing that's important is advocate for yourself. With your family history you over qualify for a MRI! I have family history and I get two diagnostics every 6 mo as my protocol of watching me for returning cancer.

    You will see a lot of women here (including myself)who tell how their cancer wasn't ever seen on a mammo or ultrasound and even sometimes on MRI although that's not usually seen.

    When you are seen, I would push the high risk breast cancer women's clinic for a MRI. I’m starting to have those every so often now. Just tell them you over qualify for two diagnostics. Which you do. Especially with your moms dx with lipomas. Tell them you want peace of mind and want to make sure the mammo didn't miss anything.

    My cancer wasn't seen on a mammo. It was seen by ultrasound. But others here have had their cancers missed on ultrasound and seen on mammo. I had extremely dense tissue during the timeframe of my cancer dx. Which can make funding cancer on mammo almost impossible

    I don't share this to scare you. Just wanted to share this info because it's important to know this. I would think they will send you for another diagnostic. But because you have Medicaid you may have to push them and advocate alot for yourself.

    We are here for you! Sending a hug to you!

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