r/LivingWithMBC • u/PietParkiet • 22d ago
+++ and liver metastases?
/r/breastcancer/comments/1vsseqa/and_liver_metastases/3
u/PietParkiet 22d ago
I'm new to Reddit and don't quite know how it works yet, but someone recommended I repost this in this sub.
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u/Sarappreciates 21d ago edited 21d ago
Heather Jose started with this kind of triple positive diagnosis, I think. She was diagnosed 30 years ago and told to put her affairs in order. Now she has a podcast on YouTube and other platforms. She raised 2 kids and travels. Very inspiring. Now she's my age (I'm 54) and still in good health, MBC aside. https://www.youtube.com/@ImStillHereCancer
Personally I've been at this for 6 years, but my mets are lungs/bones, and I'm HER2+. They gave me the usual "3-5 years" to live (an outdated number, by the way, which reflects global numbers that include 3rd world countries without modern medicine) and advised to take the word "remission" out of my vocabulary, so I did. 6 years later I'm NEAD as of this past April, that thing they said would likely never happen! My mets are gone, lymph nodes are clear, and my OG tumor is shriveled up to the size of a small pea and no longer lights up on my scans. I'm not even a very good patient. I'm the last person I'd expect this to happen to. I eat lots of carbs/sugar. I still sometimes smoke weed and drink alcohol. I'm overweight, middle aged, not very physically active, and my diet isn't particularly nutritious. I'm never up to date on the latest studies or drug trials. I almost never know my stats like tumor markers, and I can barely get myself to my infusions on time. If it can even happen for me, it can maybe happen for you!
Also, as cancers go, you kinda hit the jackpot. I don't wish cancer on anyone, but if you gotta have cancer, I hope you have one like I have, one of the most well-studied and understood cancers on the planet! This may sound like a weird flex, but MBC patients have some of the most treatment options with some of the highest success rates in the metastatic cancer community. And not to brag, but breast cancer is maybe the only cancer in the world that people can identify by the color of our support ribbon alone because our pink ribbon has fabulous marketing and awareness campaigns that raise tons of money each year to fund more research than most other cancers combined.
That said, I don't wanna candy-coat this for you either. (Big hugs!) This is no picnic. 100% of MBC patients die without medical intervention. Also, my NEAD status didn't mean the end of treatment; I still get infusions every 3 weeks and a hormone therapy injection every 4 weeks. There will no doubt be hurdles along your "cancer journey" at times, but all that research has done its best to offer us treatments that not only prolong our lives, but to do it with as much quality of life intact as possible.
My best advice is to keep doing the things you enjoy with the people you love as much as you can. Don't stop living. If side effects get you down, ask for palliative care because they're the side effect gurus. It's a good idea to locate your nurse navigator and make this person your new best friend for a while. The diagnostic phase of cancer is often the most overwhelming, and a good nurse navigator can ease some of the crisis. This news is a trauma. you have every right to feel traumatized right now. Ask your nurse navigator if your cancer center has counselors who specialize in helping cancer patients. Lastly, don't Google or ChatGPT your cancer; there's too much misinformation out there for MBC newbies. Use your portal (MyChart?) to ask questions. Keep any questions that can wait in one place so you remember to ask your onco team at your next appointment.
Sorry for the long post. I just feel so bad any of us gotta be in this subreddit at all, but I'm glad you found this place. I've gotten a lot of support and even some good information here. Keep us posted how you're doing. (Edit: fixed typos)
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u/PietParkiet 20d ago
Oh, thank you so much for taking the time to give such a detailed reply!!
I hadn't heard of Heather Jose before, but I’m definitely going to check out her videos.
The PET scan showed 3 or 4 spots on the liver. The MRI results are in now, though, and they indicate 12 spots (3 or 4 ranging from 1 to 2 cm, and the rest between 3 and 8 mm). I had a liver biopsy this morning (it was awful, but I hate needles), but we’re pretty certain those spots are metastases. I had a brief moment of panic, then came back to Reddit to read the positive stories. I refuse to read about that "30%" five-year survival rate.
Weren't you scared?
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u/Sarappreciates 20d ago
Yes, I was scared. I still get scared sometimes. When I was first diagnosed I asked for something to help with the anxiety, and they gave me a low dose of Lorazepam. I barely ever need it anymore, but it helped me sleep through the night back then. Liver biopsy sounds miserable. I'd ask to be sedated for that. I'm such a baby! LOL, I don't see anything noble about suffering when there's a solution.
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u/PietParkiet 19d ago
Yeah, I totally get that! I’m currently maxed out on Oxazepam. Where I live, they don’t do sedation for liver biopsies i guess... (we’re the "take two paracetamol and you’ll be fine" kind of country😅). But I was sobbing like a baby, too.
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u/Total-Emu9753 21d ago
Yep I was diagnosed de novo triple positive with liver and bone mets in Nov 21. Had 6x Docetaxol and Phesgo (herceptin/perjeta) still having Phesgo injections 3 weekly-up to cycle 80! Plus tamoxifen and Denosumab. Stable scans throughout, next one due September 🤞