In November 2022, I felt a lump in my breast. I saw a doctor and was dismissed. I was told it was most likely fibro changes in preparation for perimenopause. Since I wasn’t 40+, and had no family history, I wasn’t considered a risk. The Dr wouldn’t even touch it. It felt like a rock! I saw a few more Drs with the same result. 6 months later, the pea sized rock turned to the size of half a golf ball! I went to Urgent care and while they have the machines to do a mammogram, they couldn’t perform one. If something abnormal showed up, they couldn’t follow up and it posed a liability issue. Instead, they set me up with a provider in their network to look at me. I went to that appt and the Dr there told me I’d have to come back to be seen for a consult regarding the lump and that this was just the initial visit for new patients. At this point, the tumor was the size of a golf ball! I refused to leave that office until I received the referral I so desperately needed to check this thing out! She finally gave me one!
Oct 2023, I was diagnosed with Invasive Ductal Carcinoma HER2+ breast cancer, and have been fighting ever since. It had been untreated for a year, festering for a year because no one would take me seriously. I was immediately put through a battery of tests and scans and was immediately put on the TCHP regimen. My body couldn’t handle all six rounds and we stopped at four. I was told there was no tumor so we could do surgery. I told them I still felt it, but I was ignored. I had a mastectomy, and they confirmed that I was right. There was still a tumor. I then learned that there was residual disease left (micrometastic cancer), and we needed to continue treatment. I endured radiation for 28 days (Im scarred for life and suffered severe burns as many do), and was then put on Kadcyla (another chemo/immunotherapy drug). I had three bad reactions to Kadcyla out of the four treatments given (I was scheduled to do 14 rounds), and because I didn’t take it well, we had to stop. My oncologist stated Neratinib is my best shot at this point to keep the cancer from spreading, however, my insurance denied the drug. Their textbook states I have to have been on Phesgo for xyz amount of time first. However, I was on Phesgo during the TCHP regimen and proved not so effective, but insurance says I need to be on it longer before they will cover the Neratinib. My oncologist appealed a few times and was denied each time.
Im currently on Phesgo, but I haven’t been taking that well either. Insurance has denied the appeals for the neratinib because I haven’t met their textbook definition for the treatment and their is no flexibility on it. Im told this Neratinib is my best bet to keep it at bay and give me several years but I’m being denied. There are no other options. If I continue to have bad reactions on the Phesgo, I’ll have to stop treatments altogether, and will never get the drug my doc wants me on and what shows the most promising. Im told the treatment I need is roughly $10.4k a month to treat it. The treatment would last a year (total avg of $126,000) which broke my heart. I cant afford the treatment!
Im not a well off woman and a mom of two kids. I’ve worked since I was 14, always paid my bills and taxes, and I have the “gold plan” insurance at work, but I cant seem to get the meds I need to live! I’ve continued to work to pay our bills and provide for my children despite being so sick from everything, and trying to remain positive, but I’m starting to lose hope.
Since the Phesgo isn’t being tolerated well, and having no other drug options, I either continue risking taking the less effective drug and the complications from it in hopes it staves off the cancer long enough to qualify for the neratinib through insurance without doing severe damage, or I stop treatments. My only other option is to try to fundraise for the drug out of pocket. Im not one to ask, but my family is desperate, and my boys need their mom. So I’m pleading for help for my sake, but more importantly for theirs! If you cant donate, please share, and thank you in advance for your prayers, donations, and thoughts!
As a last note, please advocate for yourselves! You know your body better than anyone, and dont get dismissed like I was! I may not be 40 or fit into any mold, but the clear signs should have been evaluated right then! No one should have to go through what I went through just to be heard and have a simple scan done! Had anyone taken me seriously, this could have been a simple lumpectomy and radiation and Id be fine. Now I’m fighting for a drug that could put me in remission and being denied left and right. My oncology team at NYOH has been incredible, but their efforts are at the mercy of these insurance companies, and can only do so much within those parameters. Thank you for hearing my plight 🙏
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