Lobular Sucks!
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Claire, I'm so sorry for everything you've been through and are going through now. I am hoping someone will respond who has had a recurrence and is doing well and can give you some hope. I also hope once all the testing comes back and you have a plan and get on the plan it will settle for you. Hugs!
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Thank you kbl. It makes me nervous that no one has posted with a recurrence and is doing okay. I don’t like what that implies. 😢
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Hi, my mom had both ductal (2006) and lobular (2008) She was diagnosed with metástasis in one ovary un 2011 (lobular). After that she was stable on Aromail until 2019.
In june 2023 was diagnosed with liver mets. After that she was o Verzenio+ falsodex, but just a free months. She is now doing a clinical trial (taxol+ immunotherapy). Crossing fingers.
She had great QOL until june 2023. On Verzenio had some issues with diarrea and low neutrophy, but still living a good Life.
Crossing fingers.
Sorry about my spelling
Alicia
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Claire, I’m hoping someone will chime in here soon for you.
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Claire, your story touches me, and I'm sorry for all that you're dealing with right now. My lobular cancer was de novo, not a recurrence, but I remember the surreal hours and days that followed the MRI that showed extensive bone mets. My days got better as the treatment was put in place, and my life went on. I hope that focusing on the here and now becomes easier for you as well. This forum is a great place to be and has helped me more than I can say (although I usually lurk and don't post!).
Having said all that, I learned today that metastatic breast cancer was found in the biopsy samples they took from my abdomen last week during a laparoscopy. After 3.5 years of symptoms and so many tests, I and my medical team suspected this result, so it feels more like a place of settling than shock. Not necessarily a reason to celebrate, but almost that!
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JodyJ - we have a similar path here. DX 1998 original (not de nova) Met to Liver in 2002, stable until 2015 then Ibrance with faslodex (already had letrozole), lapraroscopy in 2019 (piece of intestine removed due to lobular mets on the outside, never seen on colonoscopy or a scan), Xeloda (capcitabine), Taxol, and now starting Feb.2023 Enhertu. It was a shock that it suddenly within 3 months went from clear to peritoneum, and all throughout the colon, but that's lobular for you. I knew there was a problem but it just didn't show up on any scans until it did. Scans How clear with Enhertu at the moment (just cleared my ILD- interstitial lung diseased that is a Enhertu side effect). I'm on an upswing now- Hope things keep working out for you.
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Ninaca, it's good to hear that you're on an upswing. I've come across your posts before when searching for information about lobular disease and abdominal symptoms. At the time, I was too emotionally frozen to post about my own scary symptoms and what they might mean. But I learned a lot from you.
I also have mets to small and large bowel detected on scans, but I'm still waiting to learn more details from the surgeon. Also waiting for the final pathology report. I'm wondering whether anything has changed in ER/PR/HER2 status since my MBC diagnosis in 2019.
It's great to know that you are doing well with effective treatment, although sorry you had to deal with the ILD side effect. Thank you for your post - and all previous ones. Wishing you the best!
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Hi. This is my first post here in 8 years. I went thru treatment for lobular and have been on letrozole since early 2017, looking for the 10 year anniversary when I could stop taking it. Now it sounds like my change will be to start another. Apparently it is now in my liver. I had a biopsy on Mon and waiting for the result. From this thread it looks like some are doing OK on the treatments. What can I expeect? What should I ask? How long did it take to get used to this? I'm 62 and not ready to give it up. Thanks.
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@coffee-lover I’m sorry you find yourself here. If you have ER+ cancer from your biopsy, they may start you on a CDK4/6 inhibitor, which they usually use with Letrozole, but since you’ve progressed on that, they may use Faslodex, which are butt shots monthly. There are three different CDK4/6 drugs, Ibrance, Verzenio, and Kisqali. If you’re not ER+, the treatment will be different. Please keep us posted on what you find out. Fatigue is the biggest issue with any meds. I have had lobular metastatic from the beginning. I never had early stage. They’ve never found it in my breasts, but I have it in all my bone, bone marrow, and stomach. It’s been over ten years in bone and bone marrow and over five in my stomach. I’m on my third line of treatment. I’m also 62. Please ask any questions you have.
Give yourself as much time as you need. It does get a little better once you have a plan. Waiting for answers is the worst part.1 -
@kbl thank you! The results are posted and er/pr/her2+ so I believe my options have expanded a bit. I have the onc appt tomorrow so hopefully he has some ideas on treatment. It's good to have knowledge.
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coffee-lover, I am sorry to hear your cancer has returned. How did you discover that the cancer had spread to your liver? Were there specific symptoms that alerted you to this development? Keep us posted on what treatments your MO will recommend.
Hugs.
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@coffee-lover Please keep me posted on how you’re doing and what your treatment plan is.
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I don't have much more to post except that the test for HER2 was considered inconclusive so it has to go out for some test (FISH??) and I will know Mon/Tues if that is part of the mix. So I'll have a plan of treatment sometime next week.
@lillyishere I did not have specific symptoms except the CA15T (I might have those jumbled) kept getting higher. My CT scan was clear in 1/23 and my CAwhatever was a little high. It kept getting higher and was really high by 1/24 so onc scheduled CT and bone scan. Bone scan was clear except for what I expected (I'm either really clumsy or really active lol) but the CT showed the liver with numerous lesions.
Something I find really jarring is finding out the results before doc appts. I knew that the scan had detected the lesions before I left the hospital and before the onc called. I love the tech but not sure it's a good idea to get that kind of news when I have to drive.
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Coffee-Lover,
I sympathize with your feelings on how you received the news. My wife was similarly situated when she was diagnosed Stage IV de novo just about a year ago. She'd been having weird symptoms and finally got both a bone marrow biopsy and an upper and lower GI with needle biopsies. Both reports basically came into her patient portal the same day (positive for metastatic breast cancer). I knew what it meant. She really didn't until she had a follow on appointment a couple of days later with both the GI doc and the oncologist.
I'm all for patients having ready access to their personal health information. But sometimes news like that needs to be delivered first in-person and not mechanically.
Sorry you are going through this. My wife has lobular as well. The good news is that lobular is almost always ER/PR positive, is occasionally HER2 positive but frequently "low" (meaning treatable by Enhurtu), tends to be slower growing, and tends to respond well to hormone therapy. If you look at some of the members of this forum who have lived a long time with Stage IV, many of them have lobular cancer.
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@bighubs I see you're in Lacey. I'm in Shelton. Small world!
It looks as though I'm HER2neg so I believe the plan is something other than letrozole plus a shot of something.
Doc has ordered genetic testing to see if that's another line of treatment.
I feel so much better than this time last week. Still a bit in shock but no longer panicking.
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Small world indeed. We live in Lacey now (since I work on Fort Lewis), but I actually grew up in Lake Quinault which is, as the crow flies anyway, quite close to Shelton (just over the Olympic mountains).
Glad to hear you are no longer in panic mode. It takes some time, but if you are like us, and everyone else I've encountered on this forum, you slowly start to realize that while the disease may curtail your life, it is highly unlikely it's going to kill you tomorrow, next week, next month, or even next year. So despite it hanging over your head, and occupying nearly every waking thought early on, it soon begins to fade into the background where it constantly lives and periodically reasserts its dominance during monthly blood tests and quarterly scans.
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