De Novo Stage IV
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Just want to reach out and let folks know I'll be MIA for a while. My father has a recurrence of pancreatic cancer. He was cancer free for 2 years. I will be taking my father for chemotherapy weekly. On my father's off week, I'll be taking him for a 2nd opinion at John Hopkins next month.
Wish everyone good scans. Take care MBC sisters. I'll post when able.
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Tinkerbell you have a lot on your plate. Take care
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very sorry to read this Tinkerbell. Take care, hugs to you and your da
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Dancemom - I understood it as "early" to mean "right after diagnosis" and "improved locoregional control" to mean "no future progression in that area" and "does not extend life" to mean "it is not shown to make a difference one way or another on a large scale basis across all cancer types and mets locations to the point where it would mean a large scale change in current standard of care approach to not do surgery at diagnosis" But, hard to tell completely without seeing the full paper.
The Twitter comments Moth summarized contain some interesting points, however, and I imagine many MOs, especially those who work in larger centers, have seen all sorts of permutations and have a feel for when surgery would be of benefit vs not (the 'art' of oncology). Moth - do you have the Twitter link you could share?
Tinkerbell - take care through this difficult time!
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I know my surgeon was on the fence, she is who referred me to my MO originally. I see BS tomorrow and MO next week so I will hear more about next steps. I have seen studies going both ways, and I know they have access to, and can digest, much more info than the public has, as they are in a research center. I am happy going with their informed, educated, long discussed plans. (I feel that i am a common subject at the interdisciplinary conferences because every appt starts with "we were just talking about you"- and sometimes a call to one another while I'm there.)
It just makes me sad that nobody really has definitive answers. I am going with my MO's idea of AGRESSIVE and hoping something sticks.
Drains out today! I can't wait to shower!!!!!
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Tinkerbell, I’m so sorry about your dad. Thank you for letting us know you’ll be away. It saves us from worry about you. Please take care of yourself, and I hope Dad will be okay. Stupid cancer. Grrrrrrr!!!!
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Tinkerbell - so sorry to hear about your dad's cancer returning. I'm sure he feels some relief by having you there to help him. I hope everything works out well.
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Moth, thanks for sharing the article.
I think I am the only one without surgery here. We had long discussion about it before. My understanding is that cancer is very individual disease and a single treatment does not necessary fit all.
My first MO did not agree with surgery because he voted quality of life over complications of surgery or tissue damage of radiation, also he mentioned that cancer is already in my lymph nodes (system) so no benefit. RO, however, mentioned that cancer is already in dna and surgery does not change the fact, disappointing but at least I got some answers.
I must add that teaching hospitals-despite they follow lasted research,I hope!,- they are very political. I think they do not recommend surgery during pandemic while this hospital (the one that I’ve being seen) is the only spot in county accepting Covid patients and therefore the icu is full always and remaining spaces allocate to life-saving surgeries, mastectomy/ lumpectomy considers as elective surgery, unfortunately.Tinkerbell, like KBL thanks for letting us know you are away, I am sorry about the news which is hard for you. I hope your father’s treatment works well with limited side effects. That is great that your father has you in his side.
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snowdrop, no, you’re not the only one. My first MO discussed breast surgery with me but never went ahead with a referral. The oncology practice where I’m currently treated is not in favor of it, unless I was NED everywhere but the breast.
I could have gotten back in touch with the breast surgeon I saw initially to get her opinionbut I’ve not felt like pursuing it.
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I also still have my primary tumor-embedded deep in my chest wall. I am fine with it remaining in place-in my imagination it is just a dead lump now so it doesn't bother me. It shrunk quite a bit from Ibrance and then has remained stable. In some ways not having surgery feels like an advantage to me-it was one less trauma for my body and I don't have any lymphedema. Glad to know I am not the only one who still has their tumor.
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I also have my breasts. They can’t find the breast cancer in them anyway. I don’t know if anyone else who is occult.
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My Mets is to sternum so there isn't really a consensus as to whether its actually metastasized or a local extension from internal mammary nodes. Not common and not much info. Nobody wants to break my sternum to biopsy and find out, so I am getting all treatments.
Still have drains😢. Another week of sponge baths.
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wishing you a comfortable and speedy recovery from your surgery, dancemom
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The two studies at the time for surgery with stage IV conflicted with each other, so my team couldn’t confidently recommend it either way but I decided to go ahead with the lumpectomy. Honestly, with the HER2+ and sudden growth of that lump, I wanted the remaining small patch of cells after chemo out. No regrets whether there’s a survival benefit or not, you never really know with cancer, do you.
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Another one here who has had no surgery of any kind. Happy that I was not asked to make that decision.
I am now over four years out and just had clear scans last week. Nothing that looks active, nothing new. My bony mets were extensive, nearly all vertebrae involved from cervical to lumbar spine, numerous crush fractures, sternum, ribs, humerus, SI joints. Also small invasion into chest wall and lymph nodes. I have been NEAD for over three and a half years now.KBL I am De Novo occult as well. Nothing on a 3D mammogram, nothing on ultrasound, no symptoms, no lump nothing definitive on MRI but enough for them to believe they know where it originated from. Very rare presentation. By the time they found it, my metswere extensive and like you had probably been there a very long time.
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someone asked for a link to the Twitter thread. There were more than one but this is the one I bookmarked
https://twitter.com/PTarantinoMD/status/1479824911...
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i am de novo occult too. Never discovered in my breasts.Popped up on my liver, diagnosed with numerous liver Mets.
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Fosterkittenmom and D37, it’s nice to know I’m not alone with the occult. You tend to start thinking you’re alone in this. Fosterkittenmom, that is so awesome you are NEAD with as much as you had. I’ve been on Ibrance and now Xeloda. Just went for MRIs. My cancer hasn’t budged. It’s still everywhere. My tumor markers have come down, though, so I think it’s working. I’ve been able to eat more again and have put on weight.
DanceMom, sorry the drains had to stay in. That sucks. Hopefully the week will go fast.
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"De novo occult" sounds like some secret society. I suppose it sort of is. Reading through various threads today and everybody has such specific differences in diagnosis and treatments and reactions and yet last March I thought it was all the same thing, Cancer. It's hard to keep up with everyone.
Kbl, eating is good! Your tumor markers sound promising too.
Illimae, no regrets! I just get emotional about no boob randomly, even though I know they finished their job already. Nursing 3 kids at close to 2 years each, they were not really mine anymore anyway, lol.
Thanks for all the good recovery thoughts everyone. I'm actually feeling pretty strong now, just stinky. Its just moving around my arm is not good yet. I was able to do a little paperwork today, with more break time then work time. My 20 came to my appointment and held my hand and watched the one drain removal! She was ok, I cried. It was a weird reversal, she held me the way I used to hug her when she was getting a shot.
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KBL - you've only been on X for a few months, right? It's great that you are feeling better, eating better, and gaining weight. Those are all so positive. It may be that it just takes a little longer to show on scans. I hope so!
Snowdrop- no surgery here either. The little lump in my breast was of small concern compared to the large and numerous tumors in my liver. I've seen a couple articles shared on BCO over the last year discussing/advocating primary site surgery for Stage IV - maybe especially for those who are oligometastic? As I understand it, that has not been the standard of care, but it was being reexamined/reconsidered.
Fosterkittenmom - I'm so sorry you had such extensive spinal mets. It sounds like it had to be excruciating. My mom suffered crush fractures due to osteoporosis and it was horrible for her. How awesome that you have been NEAD for over three years!
Dancemom - I agree; I had no idea "breast cancer" was really an umbrella term for so many (nasty) variations on the theme. It's so sweet that your 20 was there to comfort you the way you have done for her in the past. Yay for that first shower!
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Dear all, this is the first time I write here. My name is Saulius and I "represent" my wife (you can see her disease history in signature). Our story was horrible: stage IV de novo at 33 with 2 year old son on our hands, liver full of mets, failing (AST/ALT ~400), we got first chemo "on our own risk" - doctors did not want to give it to her anymore:/ To join the discussion here, I want to say that my wife had a surgery after 1st relapse which happened just locally in the breast (IBC) after an amazing initial respionse to neoadjuvant therapy, and till this day doctors call this decision a "success". Clinical trials are "directions" and science of "means" but in times of personal/precision medicine, I think everyone's case should be considered separately. There are studies that state that primary tumors have biggest metastatic potential, and many de novo metastatic patients are "oligo" by definition or genomic profile (i.e. after fast spread all mets are very heterogeneous genomically), so surgery still should be considered depending on response to neoadjuvant therapy, which could improve OS a lot.
Saulius
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SeeQ, yes, since September 27th. I’m definitely going in how I feel to think that it’s working, at least for my eating issue. I’ll take it.
Hi, Salius. I’ve seen you in other threads. Thank you for coming in and giving information. I hope you and your wife are doing well.
Thank you, DanceMom
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Bsandra, you reminded me that being oligo was a big part of the decision and likely the only reason surgery was an option.
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I am in the camp of having surgery after Chemo. Had a great response to chemo and in July of 2020, had a lumpectomy (both breasts) and oophorectomy. Sam surgery, two different surgeons. My cancer is very hormone positive so decided to have the ovaries and tubes out at the recommendation of my MO.
I asked the surgeons straight up if surgery was the way to go. I really wanted to do it and they both confidently agreed it was a good idea. I felt strongly about having as much of the primary tumor removed as possible.
Heather
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Hi Saulius, welcome to de novo thread. Thanks for sharing your story with us. Great information, definitely’oligo’ is a factor. I wish the best for you and your wife and your little son.
I can use anything today for distraction....
I hope everyone is feeling well.
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So, just want to point out again that the twitter oncs who were a little "hmmmmm" about this study especially mentioned HER2+ and oligo as a subpopulation that needs its own statistical analysis. I'm not sure if this study is underpowered for that as total n=400 I haven't got my hands on the full text yet.
My takeaway from the several twitter discussions was - TNs, no, don't delay chemo; ER+s probably best not to as it didn't seem to confer benefit; HER2+ mmmmm, too early to tell but def consider it?
I think with the new ADCs for HER2+ and the longer OSs, reducing tumor burden seems intuitively to make sense.
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interesting moth, and all the other input.I am finding that there is so much unknown.
I had a post op today and looking at my pathology, surgeon asked when do I see -MO-. I said I thought radiation is next. She answered "you have a lot of questions for MO." In my case we did the MO treatment to get started on the sternum, then surgery. Now I suppose the question they are working on is what's next, radiation or back to letrozole or other treatment first? Pathology seems to have some not as common stuff in it again. And again, I am happy to be fortunate in a center where all this cross discipline discussion can happen. I hope all my data goes into files for future use for others!
I'm still sad about Rabbit
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DanceMom, I hope you’re healing well. I agree. I can’t stop thinking about Rabbit and her husband not being allowed to be with her. I can’t bring myself to ask him if he was able to hold her before she passed.
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Saulius: Hi and welcome to this thread. I am so struck by your other posts. You are an incredible man and a wonderful husband. I wish the very best for you, your sweet son and your lovely wife.
Rabbit was taken too soon. It seemed so sudden. I sometimes get afraid to sign on.
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Dear all, thanks a lot for the welcomes! My wife is doing really well - she only had 3 small suspicious level II axillia lymph nodes (5 mm), and only one that was barely visible on PET (SUV 1.7, no wonder as initial tumor and spread was so fast and huge) and were cyberknifed one month ago, liver is clear for past 4 years, no disease was seen anywhere else for a long time, so we hope we can continue like this (knock on wood:). I am extremely proud of her, have no words to even express my gratitude for what she has gone through for herself and for us.
I read a lot and there's really some discussion going on on "what is oligo". Now it is <5 mets with <X mm but if it is 20 and you got a pCR to all of them on systemic treatment, then into which category do you fall? It probably means that all your mets were so heterogeneous ("same") that it did not matter if you had 1 or 20, so I think these people should also be considered to treat with "curative intent", and primary surgery, especially if initial changes were big, would be important. Ehm...
Saulius
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