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Regrets about not being better health advocate

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odyssey305
odyssey305 Member Posts: 37

I wasn't sure where to post this, but I wanted to put this out there in case anyone is in a similar situation. So, last summer I was concerned about breast changes and I looked at the letter from my previous mammo and noticed that they mentioned dense breast tissue and said that I "might benefit from supplementary screening tests." I realize that language is pretty standard, but an ultrasound seemed logical so I made an appt with my primary to get a referral.

When I met with my (now former) PCP, he told me that I don't need an ultrasound because my symptoms were common during perimenopause and gave me the all clear. Fast forward 6 months, and you guessed it, IDC. The rest is history.

So now that I'm past active treatment I've been thinking about all the what ifs, as in what if this could have been caught earlier if my PCP would have just given me the damn US referral! I decided to call his supervisor, to at least make him aware and try to prevent this from happening to someone else And although I shouldn't have been surprised, he defended the other doctor and said the letter from my previous mammo didn't "recommend" an US, only said that I might benefit from additional tests, so basically it was up to clinical interpretation. Additionally, prior to actually being diagnosed with BC, I was considered low risk (5% lifetime risk LOL). I think I was asking for that kick to the head, but it still hurt. Now I'm back to blaming myself for not being clearer/more insistent about my symptoms. Lesson learned. But Ladies (and Gents), if you feel like something is off, tell your doctor and if she/he won't listen, find someone who will. Don't worry about being a bad patient, just be a good advocate for yourself. Soap box dismount 😊

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  • moderators
    moderators Posts: 8,178
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    Oh Odyssey, thank you for this post. Please don't ever feel guilty -- we're all conditioned to trust our doctors and think they have our best interests in mind. So, it's natural to listen to their advice and guidance -- after all, you're not the one with credentials (the ones they have anyway Winking).

    But what you can do from this experience is use it for the future, and become a better advocate for yourself, and just like you have, relay it to family/friends/members here and help them. So, thank you!

    For more information for yourself and others, check out this Breastcancer.org Podcast on Becoming Your Own Advocate.

    We hope this helps. Big hugs to you!

    Hug

    --The Mods

  • wondering44
    wondering44 Member Posts: 261
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    Odyssey,

    I hope you lose the guilt.
    I ❤️ your soapbox read. 😊

  • sarahmaude
    sarahmaude Member Posts: 338
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    Oh Odyssey305, do not feel bad!

    I got that letter for years. At peri menopause, I got alerts and callbacks for ultrasounds on “nothing” often enough that I became irritated by and skeptical of mammography and hated returning for benign ultrasounds. Your tumor was tiny, and even ultrasound 6 months before surgery may not have seen yours then.

    My tumor ended up being found in the breast that never triggered any callbacks. I found it myself, and was still skeptical due to too many false alarms.

    Hooray that you stayed vigilant! Your team found your tumor when it was extremely treatable. Now we will both get a lot of attention with our breast concerns. Keep your soap box, but use it for the future. Your doctor wasn’t necessarily wrong when you asked. Although….I think all of us with flagged dense breast tissue should get 3D mammograms and same day ultrasounds. That letter we get is 💩. It either creates anxiety or makes us numb.

  • serendipity09
    serendipity09 Member Posts: 769
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    Odyssey305- you're not alone. I had been receiving those letters for years. I was diligent to go in every 6 months for a follow up. My last mammogram in Jan 2020 was scheduled as I was concerned about a lump on my left side. Turned out to be nothing. Fast forward to March 2020 I find a lump on the right breast. It was the day our state shutdown due to covid and it was difficult getting an appointment. I reached out to my NP to ask if in my summary it mentioned anything about this lump as I didn't see anything. I had read it and just needed confirmation that I wasn't missing anything. There was nothing there, but she was she didn't want to risk anything. She sent me in for another mammogram and US two days later; the US radiologist didn't believe it was anything, but sent me in for a biopsy, just in case. Well low and behold it was cancer.

    None of this is your fault, it really is a crapshoot (hope I don't offend.) Just being a woman makes us that more susceptible to the beast.

    Like you, I had/have these feelings of had I done things differently; exercise more, eat healthier, something... could I have prevented it?! Probably not.

    Now it's time for you to continue to be kind to yourself and do the best you can going forward.

    Hugs to you! <3

  • odyssey305
    odyssey305 Member Posts: 37
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    Hi and thanks to everyone who shared their stories and support❤️

    Wondering - Those are words to live by! It felt good just to vent and be heard, thank you for that. I think that’s what I was missing from my conversation with the clinic supervisor. His flippant defense of my old PCP and the reminder that I my lifetime risk was supposed to be5% (gee, if only my body had cooperated!) really riled me!

    Sarahmaude - Thank you for your encouragement. My new MO ( I just met with him today) agrees with you that getting scanned 6 months earlier probably wouldn’t have found the tumor and definitely wouldn’t have changed the prognosis if it were found. I also 100% agree that women with dense breasts should get same day ultrasounds with their mammos and spare the 💩 letters!

    Serendipity - I’m sorry you had to navigate a BC diagnosis during COVID lockdown! It’s good that your NP took your concerns seriously. No offense taken at all. I think my two biggest lessons from BC are 1) the importance of being your own advocate and 2) sh*t happens. Even when we try our best in any given situation, the outcomes can be unpredictable. That’s a hard pill to swallow because I’m kind of a control freak, but it’s the truth. Breasts come with their own risks, and we are not to blame.

    Take care Ladies, hope you all have a lovely weekend