De Novo Stage IV
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ReneV, thanks for the information, sharing your experience and wishes. Best of luck with your treatment. Knowledge is power, I learned a lot here, thanks to KBL for starting it. I feel my confidence is back, so tomorrow is a big day, planning to push the MO for SBRT!!!!
Illimae I am happy for you that the treatment has worked well.
I hope everyone is doing well.
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It makes me so happy that you’re getting information here and it’s helping. I’m so appreciative that we can all give information and talk about our specific circumstances from the de novo point of view.
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Just checking in. Hope everyone is doing well. I was catching up on some reading and thought would post to the group.
In reference to the below research article, I need further clarification from others, meaning perhaps I've come to the wrong conclusion or read to deeply into it. If I'm reading this correctly does the study seem to indicate radiation to the regional lymph nodes may reduce seeding/future seeding for metastatis?
Bitencourt A, Saccarelli CR, Morris EA, et al. Regional Lymph Node Involvement Among Patients With De Novo Metastatic Breast Cancer. JAMA Network Open. doi: 10.1001/jamanetworkopen.2020.18790
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Hi Tinkerbell,
I think the article is only saying that because most de-novo MBC patients were found to have regional lymph node involvement at MBC diagnosis, it's likely that regional lymph node involvement is a precursor of distant metastases in a substantial proportion of patients. Therefore, the authors conclude, lymph node irradiation (including intramammary nodes) in early stage BC could reduce risk of metastasis. They are basically advocating that radiation to lymph nodes in early stage BC should be done more frequently (possibly even when there is no evidence of node involvement) and more extensively (including intramammary nodes). It is pretty confusing, using observations in de-novo MBC patients to recommend changes in early-stage treatment...
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Piggy99: Thank you for responding. I wasn't clear if this was in reference to early stage BC or newly diagnosed MBC. Unfortunately there are not a lot of articles directed to "De Novo" MBC. So when I read it was like what is this? How does this help us already diagnosed with de novo.
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Hi, Tinkerbell. Thank you for bumping this thread. I was away on vacation and chose to stay off boards while I was gone.
Thank you, Piggy99 for such a thorough explanation.
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KBL: Hope you enjoyed your vacation. Need to keep this thread going. We are a minority based on the statistics "6% to 10%" are diagnosed with De Novo. I believe the number is a lot higher based on missed tumors on imaging with early BC. How much higher who knows, but this was almost me (stage 2 to MBC in 2 weeks).. Unfortunately the literature is rather limited. If someone reads a good article, heck even a confusing article like I posted, perhaps we can educate one another on this thread.
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I’m here too. I volunteered to move to a 2nd line treatment combo of Herceptin, Xeloda, Tukysa to better control the brain mets. So far, Xeloda is not my friend but I’m finally getting the right meds for my SE’s (1st 2 anti-nausea meds didn’t work). I feel pretty decent but waiting on Spine MRI results to see if I have lepto mets or if this is my 3rd false alarm. Also, leaving tonight to move to our mountain cabin in west Texas. I’ll post some pics later
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I tried to post a few minutes ago and it seems to be lost, so I'll try again.
Hi Tinkerbell, thanks for posting the article, it was interesting - anything they can figure out to help prevent MBC is good -- even if it wouldn't have helped our situation.
Piggy, thanks for the synopsis; it made reviewing the article that much easier.
KBL, I hope you went somewhere fun and spectacularly relaxing.
Illimae, I'm sorry you are having trouble with your tx; hopefully, the new meds will improve you situation. How fun to be moving to a cabin. I'm looking forward to pictures. My DH and I are considering a move to a lakehouse, but we're not decided yet.
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SeeQ, a lake house sounds amazing!
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Tinkerbell and Piggy thanks for the article and explaining. I do agree that there aren’t much study for de novo, and I second you , I welcome any information, study etc. sometimes I feel everyone including nurses and docs expecting me to know things way higher than I do as MBC itself is big!
Mae, wish you best luck with new combo. Enjoy mountain cabin, sounds great, looking forward to seeing your photos. did you get any symptoms for leptomeningeal? I had a mri back in April, the radiologist suspected with lepto disease, so I have to repeat spine mri every 2 months, this time is going to be 3 months tomorrow, i just know the team has a plan but they never inform me about it, annoying.
KBL I am sure you enjoyed your vacation, it was great idea you switched off from mbc world for a little bit.
I hope everyone is doing well.
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tinkerbell107,
Well you got me beat! I went from stageIIB to stage IV in 6 weeks. Reality is that it was there all along but there was no reason to suspect mets. Because of this I consider myself de novo
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ibeatit, no symptoms but I do have a brain met in the forth ventricle, that location is suspicious for lepto seeding. I’ve been through this scare a few times now but I feel like maybe it’s inevitable. I sure hope not though.
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Unfortunately, my vacation didn't turn out the way I'd hoped. We bought some property in rural Georgia with my daughter and her husband. We all went there so I could see it. It was beautiful. We have a metal garage there. That's where we stayed. I slept on a cot. We also have a little RV in there, and we had our small grandson sleeping in that. He slept like a champ and absolutely loved all the country toys, tractor, side by side.
The weather really didn't cooperate. We had almost a direct hit with TS Zeta and 50 mph gusts. That's not great sounding on a metal building. Lol. The next day there were some metal pieces that were hitting from the direction the wind was blowing. They rattled all night. My husband fixed them the next morning.
It also got very cold the last night. My daughter and her husband had left, so I decided to try to sleep in the RV. I could hear a critter scratching and made my husband set my cot back up. At around 3:30, I said critter be damned. It was too cold for me on the cot. I went back in the RV and prayed it didn't crawl on me.
Sleeping on a cot for seven days is not really sleep inducing.
We then hit a traffic jam on ou 355-mile return ride home.
I did like the property but won't be back unless I stay in a hotel down the road or there is a house.
Sorry for the rant.
Mae, I had to look up lepto. I hadn't heard of that. I hope it's another false alarm, although a false alarm isso scary to have. I'm thinking of you.
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KBL, I'm so sorry your vacation didn't go as well as planned. That's a different kind of roughing it! It's too bad about the mouse (?) in the RV. They like to get in there when they can, and they can wreak havoc with the wiring. My husband made an effort to 'seal' the bottom of ours this summer. Riding out a TS in a metal shed does not sound fund. We've had about enough hurricanes this year!
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Thank you SeeQ. Yes, it's a mouse. My husband will be getting something to fix the problem, but they don't bother him like me. I take it you’re in that continuous path that's been going on this year. It's just outrageous how the same areas keep getting hit.
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KBL, Actually, we have been very fortunate this year. Two years ago, Hurricane Michael devastated our area. We watch every storm that enters the Gulf of Mexico very carefully and worry how accurate the forecast is. I feel bad for the folks in LA this year, and simultaneously sigh in (selfish) relief. The first hurricane we tried to evacuate for ('tried' being the operative word), we didn't get as far as we would have liked, and weathered the outskirts of the storm in a tag-along RV (with two kids and a dog!). Also, not fun.
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Are you in Florida then? That’s where I am. Until this past week, Irma was the one that knocked out our power for over a week. Damn hurricanes. I feel your RV not being fun.
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Here is another article posted BMC Cancer 10/12/20. Research data is based on SEER database (2010-2016) .
A nomogram for predicting survival in patients with de novo metastatic breast cancer: a population-based study
https://bmccancer.biomedcentral.com/articles/10.11....
Despite the database being outdated I found the article interesting. Hopefully OS rates have significantly improved.
It's a moot point now just wondering how many of us had our primary tumor surgically resected? It appears to remain controversial but the article suggested "that primary tumor resection did improve the survival of a subset of patients." .
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KBL - Yes, I'm in NW Florida. What part are you in?
Tinkerbell, another interesting article. I, too, would like to think the survival rates are getting better with improvements in targeted therapies and immunotherapies. I suppose these are the kind of small steps that lead to improved treatment for MBC patients. It's frustrating that this disease has been known for so long and we still know so little about it. I know; things have come a long way, but...
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seeQ, I have been living with mbc for a bit over 9 years. From my long range perspective there actually has been a lot of progress. Neither Ibrance not Verzenio had been approved back then. There were few members on the stage IV forum that survived more than 3-4 years and while there are still not enough, there are more than I can even remember. No cure of course but look back 9 years we have made some notable progress.
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Every time I read or think about the “debate" or lack of evidence around breast surgery for MBC, I think about how many varieties of elective, cosmetic breast surgeries there are and wonder why these docs are so conservative when it comes to us? You can request enlargement, enhancement, reduction, lift, and even removal with no underlying disease. But not removal of a malignant tumor if you're Stage IV.
The only good reason I can think of right now to avoid surgery for MBC is that it could interfere with much needed systemic treatment if you wind up with infections or other complications from the surgery.
That, and the risk of lymphedema in the case of node removal. I may very well be missing some other good reasons here...but I am glad that science is slowly starting to consider that, with increasing survival rates, more aggressive treatment for us may be in order.
PS - thanks for the article, Tinkerbell. Adding it to my folder of BC info
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SeeQ, I am in the western central part of Florida and have a second property in.Suwannee County.
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Mae, I hope for best results for you. The reason I asked you because I have few symptoms and mri showed few Mets in my cord, the tumor team prefer to wait and monitor them regularly.
Tinkerbell, very good reading, thanks for the article. We had a discussion around primary tumor removal and our concerns here, still I don’t understand BS and former-MO logic, they strongly said surgery is off the table.
Olma, good point comparing cosmetic surgery vs MBC surgery. SeeQ, yes we do hope for more effective improvements in MBC treatments.
KBL sorry that your getaway didn’t go as you planned.
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https://ascopubs.org/doi/full/10.1200/jop.2015.008953
I gave this article to my MO early on in my treatment. He presented to the tumor board and I was able to have a lumpectomy and SBRT to the lung tumor. I have had no chemo infusions since Mid-January 2020.Scans since 2019 have shown no cancer. I do think doctors need to change their thinking when it comes to de novo patients.
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Really enjoy reading these discussions. Despite the debate back and forth re BC surgery, I think De novo needs to be treated aggressively out of the gate. I know the flip side but JCSLibrarian is a good example. Thank you for posting the article. When I meet with new providers often I'm driving the bus. I recognize they are busy and oblige my requests. However this is how little they know about de novo. What I'm saying is that we need to advocate for our little group for our lives depend upon it. As crazy as it sounds perhaps we can stay on the long end of the tail
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Made to the cabin and enjoying the peace. Mountains for days out here, I love it.
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Mae, I would love to be there with you. It looks just gorgeous. I hope the air is as crisp and clean as it looks. Enjoy
Tinkerbell, I totally agree. I’m so grateful for this forum and you ladies. I am occult denovo. It’s been tough not knowing where in my breast everything started and how long ago since it had spread to my bones and I didn’t know that’s what it was for six years. I told my husband I am truly grateful this cancer is such a slow-growing cancer. Now that it’s in my stomach as well, I often think about where it will head next. I don’t let it consume my days, thankfully. I appreciate every day is precious. We are having such beautiful weather the last few days. It’s going to change back to muggy, but I am enjoying the coolness while it lasts. There is not a cloud in the sky.
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JCSlibrarian, thanks for the article, your experience is inspirational for most of us.
Mae, this view is beautiful, enjoy it. I love mountains and the peaceful environment.
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illimae, gorgeous view, enjoy your getaway. Thinking of you and a good outcome on that MRI. XO
JCSLibrarian, thanks for another good article, and your experience. : )
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