De Novo Stage IV
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Dear @heidihill , I know you since 2017:) You are amazing and were the one to give us hope! Hugs,
Saulius
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Oooh how I love to see numbers like 18 years! @heidihill I’m rejoicing with you. It will be 7 years for me later this year. Thinking back to when I was first going through treatment, I was uncertain what my future would be. Those early anxious days were long and tiring. So many unknowns and even what I did know was bad news/worse than the news after the first biopsy. Things went down hill for many months until things started to improve with Abraxane. It was through the kindness and encouragement of many on this forum that I was able keep going and staying positive. I’m grateful for all of you!
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Hi everyone! I'm brand spanking new here and am incredibly lost, as I feel a lot of you 'de novo' patients probably were. I was diagnosed at the end of March after experiencing debilitating back pain for 5 months. I honestly thought I had a bulging or herniated disk in my spine and only needed a spinal injection and physical therapy. Lo and behold, when I finally got a MRI done in mid-March (paid for OOP since insurance kept denying the test order) it showed metastatic lesions over almost all my vertebrae. A nurse practitioner at a pain management clinic had to break the news to me as she was the first person to read the MRI report. Subsequent testing shows nodules in my lungs and liver along with compression fractures in my spine and hip joint. I was terminated from my job 3 weeks after sharing the news with them and list my benefits shortly after. Thankfully I was able to start a targeted radiation treatment while I still had coverage and the facility completed the 10 day treatment even though it extended into non-covered dates towards the end. It took about a month to see the full benefits from the treatment, and I walk with a limp now but the pain, as long as I take my pain meds regularly, is completely manageable. I was prescribed Tamoxifen to take but stopped taking it about a week ago because I couldn't keep anything down and felt like poo and couldn't get out of bed and LIVE. I feel MUCH better this week but am concerned about what this means for me long term. I stumbled across this site earlier this evening and am so glad I did. I go see my oncologist in 2 days and will talk to her about the tamoxifen but feel much better after reading that there are other options I can try. She's pushing me to do chemo and I don't want to and I didn't feel like she's been overly communicative in what other routes may be available to me. I have a question: since losing my job I've been living off my 401K that I cashed out but I have no income and can't really imagine I'll ever have a income again, or good insurance coverage. I've filed for SSDI and medicare/medicaid but I'm a single mom of 3 and am concerned about how I'm going to support myself and my kids and how I'm going to get decent treatment with my diagnosis. Does anybody have any advice or guidance on this? I'll admit, I have been almost hopeful that the cancer kills me soon because I don't know how to handle the financial hurdles I'll be facing once I run out of money, but then I feel super guilty because I don't want to leave my kids earlier than absolutely necessary. Anyway, any advice or support would be so greatly appreciated, I've really been struggling with this new reality of mine.
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@daisy3483, welcome to the BCO community. We're so sorry for all that you've been through over the past few months, but we're glad you've found us, and we hope you'll continue to lean on the support of our members. Many here have been where you are right now, and may be able to share their personal experiences, resources, financial concerns, and the challenges of living with a metastatic diagnosis.
In the meantime, you may find these sections form our main site helpful:
Tips for Lowering Medicine Costs
Paying for Breast Cancer Care (Podcast)
Covering the Costs of Your Breast Cancer Care
You may also be interested in our Virtual Support Groups for people living with metastatic breast cancer. Many members find them to be a valuable source of connection, information, and support from others who understand what they're going through:
We're glad you're seeing your oncologist soon and can discuss the issues you've been having with tamoxifen. Please keep us posted on how that appointment goes. We're thinking of you and are glad you're here.
The Mods
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@daisy3483 Gosh, you have been through so much already. My heart breaks for you. If you want to stay alive, you have to take the medicine, I'm afraid. It gets easier over time, really. The body needs time to adjust. I am not sure what kind of breast cancer you have, but it seems odd that you would only have been prescribed Tamoxifen. I hope you have a good oncologist who can talk you through all this and provide help for the side effects. I am sure there are others here who can give you advice on the financial side since you are certainly not the only one facing these hurdles. I hope you can live a long time for your three kids.
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@daisy3483 I second everything @tougholdcrow said. I’m not sure where you are getting care but I do see you are in Texas. I also am surprised with your MO (medical oncologist) prescribing only tamoxifen. I am older than you and post menopausal so that definitely comes into play. But, in any case, you may know this already but I’m throwing it out there just in case. MD Anderson, in Houston, is ranked highest next to Memorial Sloan Kettering (MSK) in cancer care. Here is a link to their locations. I would recommend reaching out to them and seeing what they have to offer you. Such a big reputable cancer center must have lots of supportive programs and networks that may make life easier for you to navigate at this time. Do not be afraid to change your MO or get second opinions on care decisions. Your life is at stake here.
Just to give you my example, at 64 years old (Dec 2024), I was diagnosed de novo with ‘innumerable bone lesions’, malignant pleural effusion and metastases in my lymph nodes. Weirdly, no breast tumors. Hormone positive and HER2 low. I was immediately started on an AI inhibitor that, put quite simply, works to reduce or eliminate estrogen in your body and then put on an additional med referred to as ‘targeted therapy’ that, simply put, works to attack cancer cells while sparing healthy ones. I am a New Yorker and my docs are at MSK.
This forum is wonderful and full of amazing smart and caring folks. I am happy you found us. Use and abuse- it will only help you.
sending warm hugs! xo juliana2 -
@daisy3483 We're just checking back in with you since we haven't seen you since you first posted. You've received some great advice above, so we want to make sure you see it.
How did your appointment with your oncologist go and what treatment plan has been decided? Whatever it is, we're all here to support you and this thread is evidence that you can live long and well with metastatic breast cancer — with the right support. We hope you'll keep coming back, asking questions, and getting advice and inspiration from this amazing league of folks navigating similar paths. We're all here for you!
—The Mods
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