Slow process & BRCA testing
Hi, all!
Have any of you had the process to get answers take a really long time? I found a lump in Sept, had a clinical exam in Nov, found two more lumps in Dec, finally had a diagnostic mammogram and ultrasound in Jan, and am now referred for a 2nd ultrasound after the first imaging missed the 3 palpable lumps (they did find a bi-rads 3 tumor on the opposite side). They haven't made the appt for the new ultrasound yet, but I'm guessing it'll take several weeks after approval like last time.
My gp would prefer to send me straight to a breast surgeon since the lumps have grown, but I'm under 40 and not covered for further testing until there are clear images. She's also mentioned the possibility of lobular carcinoma a couple of times now, but of course we won't know anything for sure until I finally get biopsied. I just want to know either way. Her team suggested I get BRCA tested since I have a family history of related cancers and said it may speed things up with prior authorizations, but I can't afford it through the avenues I'm seeing.
How do those of you who have had a long wait be patient and stay calm? And does anyone know of resources for lower cost brca testing?
Thanks in advance 🙂
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Thanks for the reply! That seems like the best, most logical course. I think I'm just getting impatient because it's been a 5 month process already and could be another 4 or so at this rate (the insurance has to approve the request which takes up to a month, then another month for an appointment for each) but I guess it won't make that much of a difference medically.
Thanks again!
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Hi Cozy, Welcome and thanks for posting!
There's some good info on our main Breastcancer.org site on Genetic Testing Facilities and Costs. Specifically:
"If you don't have health insurance or your health plan offers partial or no coverage, you might be able to apply for financial assistance through the genetic testing company or the cancer genetic testing program at your hospital. You can also look for companies that offer financial assistance or low-cost genetic testing via FORCE."
We hope this helps!
--The Mods
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2 months is great! I'm glad you were able to get answers relatively quickly, although they weren't ideal ones. I live in one of the bottom 5 states in the US for healthcare, which probably doesn't help, especially when there are a lot of extra PA hoops for under 40 and there aren't enough providers for the amount of people in need. I'm glad not every place is this slow. 🙂
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Thank you, Mods! I must have missed that page. I really appreciate the info. 🙂
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Good news: the second US referral was approved.
Annoying news: they put it through to the same center and tech as before, despite my GP specifying very directly that she wanted a different breast center/ set of eyes for the next US. I have no idea how much longer this will add to the process, but hopefully it isn't much.
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I'm still waiting to see a different breast center. I called to check the status today and it still hasn't been processed correctly despite specific notes being made by my GP. It stinks that being under 40 impacts priority even in symptomatic patients, but I'm hoping I get better news by the end of this week. I really appreciate the support this community gives even for those of us in the pre-diagnosis stage.
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Hi cozy,
I don't have any words of wisdom, but a lot of empathy. The one thing I'm learning is this process can take a long time and involve multiple tests, sometimes repeated tests. I've been on this journey since April when I had my screening mammogram. A mass was found and I had diagnostic mammo and ultrasound. Then 6 month follow up, which ended up being delayed because I had a vaccine and didn't think about the breast follow up then. The mass had shrunk, most likely a complicated cyst, but there was nipple inversion on the mammo, not the ultrasound done a few days later. Had consult with breast surgeon in January, who ordered an MRI. Long wait for MRI on Feb 1. No nipple inversion after all, but a new mass found, probably benign, 6 month follow up but wanted a second-look ultrasound. Ultrasound on Feb 6 showed not one but two masses now. So biopsy ordered. Biopsy tomorrow. Doing a lot of talking to myself between panic and calm. That these masses just popped up and are adjacent and MRI didn't even see the 2nd makes me nervous. At least they're small.
Hang in there. I'm right there with you.
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Oh goodness, nervousauthor. That is a really long time! The mass on my left side that was found by surprise when doing diagnostic imaging for the palpable issues on my right side requires a 6 month follow up in July, and although I'm hoping for no issues I'm kind of wishing they'd have just done a biopsy then so if it's trouble I could have it taken care of sooner. My gp said to not be surprised if there's growth on that side too, just because it's hypoechoic with internal vascularity. Between that and the right side mystery, it really is an adventure, but not the most fun kind. I hate that you've gone through such a long process where each test has brought more questions than answers, but I'm glad you're finally getting care that should make things less uncertain.
I'm sorry your masses have multiplied, and I hope you get the relative best case news after your biopsies tomorrow. Thanks for commenting with empathy and sharing your personal story. 🙂 Fingers crossed tomorrow and the coming days give you some clearer answers.
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I finally got a second ultrasound referral scheduled after a bunch of behind the scenes mess-ups on the hospital and insurance ends. It'll be a bit after mid-March unless things get messed up again, with a gp follow up in early April (the system they use is slow to get results shared internally) and hopefully finally the surgeon consult my gp wants by May. The first lump has doubled in size since I found it in September (so almost 6 months ago) which is making me more anxious when I can't stay busy.
I'm just over it and the way poverty slows the path to answers. Thanks again to anyone who has offered support through this wait.
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