De Novo Stage IV
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exbronxgirl - Yes, I acknowledged that treatments have come a long way. Articles published just 5 years ago forecasted a much shorter life span for MBC with liver mets than the years I expect to achieve...which - realistically - are much fewer than I would expected at the beginning of this year. We still have a long way to go.
Mae, your view is AMAZING. Peaceful and quiet sounds wonderful.
JCS - great article. I loved that the writer's focus was on a CURE.
KBL, I really feel for you ladies with ILC with regard to scans not working as well for you. And...speaking of hurricanes...that danged Eta is one to watch.
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Spine MRI is negative for lepto met, so I get to keep living as normal, yay. I’ve been so tense the last few hours waiting on these results but now I can relax a bit and get back to cabin life, thanks for the support. I wish everyone well 💗
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great news Mae, I am happy for you (((hugs))) now time to enjoy beautiful mountains.
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Illimae, great news! And back to that R&R.
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Mae, I’m so happy for you. Now you can enjoy your vacation and let the relaxation begin.
SeeQ, yes, here we go again with Eta. I was hoping Florida would squeak by this year. Hopefully it turns. They are having a tough time predicting this path. The models are all over the place.
Thank you for your kind words about ILC. It’s amazing that the incidence of ILC occult de novo is somewhere between 0.3% to 1%. It’s crazy.
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Mae - so glad your scan came back negative for lepto! I actually woke up yesterday morning thinking about your scan results. The cabin is gorgeous - but how did the bathroom turn out?
KBL - sometimes I think getting hit by lightening would have been easier to achieve than de novo BC.
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Sondra, you’ve got that right
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Thanks Sondra. The bathroom is a work in progress, currently it’s a bucket underneath a medical toilet chair, lol. Not the comforts of home but better than outside next to a tree. We’ll be spending much of the winter on interior walls, bath and kitchen. In spring, we’ll tackle the outside and new building like a workshop for DH and a she shed for me.
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Mae, I must have missed whether this is your new home or a getaway home? Either way it sounds awesome
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Rosie, it’s been a slow build over a few years but once we finish (within a few months), it’ll be permanent. We’re hoping to sell our home in Houston within the same time frame. I’ll go back to MDA every 3-4 months for scans/MO visit but I have a second MO lined up in El Paso for the routine stuff like Herceptin every 3 weeks.
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Mountain critters!
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Mae, I thought I posted this already, but hope all goes well with finishing the work. It's fun seeing a home come together. Great that you can still keep your team at MDA and do routine things closer to home. Enjoy your new surroundings 😊
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Illimae, your visitors are just checking out the new kids on the block! Seriously, that's so fun to be able to see them like that.
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Mae, that’s so awesome. I love critters as long as they’re not mice or wasps.
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I love them too. I am personally against hunting unless it’s truly a survival or life/death situation, DH is not, although he has never hunted while I’ve known him. He talks about how they’ll taste but I strictly forbid it within the mountain community because I want them to come visit. We moved into their habitat and I feel we have a responsibility to share and be kind. I plan to have some veggies planted for those foraging, while securing our personal crops.
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Mae, you girl are a great planner, keep your care team and add a local, bravo! Those visitors are so cute and fun 🙂
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Mae: Just wondering if these mountain critters are your only neighbors. Best to feed them lol
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Tinkerbell, they aren’t, they roam the area and I don’t want to tame or make them depend on us but I do want them to come around.
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Late comment on the surgery question for de novo stage 4 (I was distracted by my country's election). Removal of the primary tumor will not help all of us survive longer. Those with more extensive cancer at the de novo assessment are still assumed to be better off doing a less aggressive treatment. I had the works: primary tumor in the breast. plus bone, underarm and chest nodes, and lung, all with cancer. My oncologist would only recommend me for palliative surgery, to improve QOL. That said, I am now starting year 7 of stage 4 survival, and am still only on my second line of treatment.
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NineTwelve,
There are however oncologists who believe that removing the primary tumor lessens the overall tumor burden. That is why we do see some de novo patients who have had lumpectomies or mastectomies. I think in general that your statement is correct, but it is not a universally held view.
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Certainly I don't want to enter a debate about surgery or no surgery for the primary tumor. My point is to bring education forth so folks can have a candid discussion with their treatment team. I often wonder if my stage IV wasn't found out after the fact would surgery be on the table. Does it make difference? Some studies say so which can be flawed or have selection bias. For most of us this discussion is a moot point, our paths are already determined. However for newly diagnosed, perhaps these discussions are warranted, even if it helps only one person.
Another article on the role of locoregional surgery which was a Topic Alert on Practice Update yesterday.
Ma, L., Mi, Y., Cui, S. et al. Role of locoregional surgery in patients with de novo stage IV breast cancer: analysis of real-world data from China. Sci Rep 10, 18132 (2020). https://doi.org/10.1038/s41598-020-75119-0
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I know in my case, they wouldn't decide my fate on surgery until they figured out what the spot in my liver was. They told me I wouldn't get a mastectomy if it was a met bc it offered no really survival benefit.. Then, I did so well with treatment and had a complete response that they decided to treat me curatively vs palliatively, and went aggressive. So, that included a double mastectomy. I'm happy I got it done, not only for the mental aspect of removing the diseases breast, but also because I had extensive dcis, apparently LCIS, PASH, papillomas , Hyperplasia.. the works. If it could happen to a breast, my tiny one held it all.
But anyway, I think it's so personal. I don't think anyone should be denied if they want one , regardless of stage. But hey, that's my opinion
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As B-A-P said, response to initial treatment is one factor that makes some doctors more willing to recommend surgery for Stage IV. That was a factor for me, in getting local treatment for a spine met, also. And my former MO thought breast surgery might be a good idea if I remained NED, yet, my current MO has sort of the opposite viewpoint.
This is definitely an area of uncertainty for doctors because of the conflicting studies and so far, a lack of consensus on which Stage IV patients could benefit.
Interestingly, I came across this article a few weeks ago...researchers exploring the possibility of *some* early-stage patients with HER-2++ disease foregoing surgery, if they have a complete response to neoadjuvant chemo and Herceptin. This isn't set to be standard of care anytime soon, but it is something they're exploring. Surgery does have risks and a financial cost, so I guess they are calculating risk versus benefit.
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I agree with the complete response to systemic treatment being helpful for decision making. I had neoadjuvant chemo resulting in the breast tumor and lung tumor being non-existent. After a lumpectomy and SBRT, the scans show only a small amount of dead cells in the lung. My MO is still concerned there are cancer cells circulating that could find another host organ or bone. Until then we will think positive that we got it. Much better discussions than those of life expectancy.
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If I had ever been NED, I would have pushed for a mastectomy. Everyone is different, and I agree that with the evidence we have, there is no certainty on the question. So we should be given all the information and allowed to choose the option which better suits us. I think if I had to do it all over again, I would still have chosen to delay IV chemo and mastectomy for as long as the antihormonal treatments could last.
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Ninetwelve, 7 years is really good for stage 4. Have you ever had your bone mets radiated? Or any other local treatments to the mets? I'm almost 2 years in de novo bone mets in both hips. As I am currently stable on Ibrance ( no SUV in bones or breast per PET), I 'm still debating whether I should radiate my hips to kill the mets if possible. I had lumpectomy before bone mets were found.
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Thanks, 42young. It's been six years, and I started my 7th year past diagnosis a couple of months ago. My bone met appears to be inactive. I have organ involvement, though, and that changes things. A lot of BCO people have had the radiation to their bone mets and I think they will chime in with their experience.
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Thanks ladies for the readings, it is good to see there are hopes around for de novo s.
42young, I had my bone met radiated. According to my former MO and RO, RT suggested when symptoms are there, like sever pain, neuropathy etc. what is suv for your bone Mets before and after targeted therapy? If the Mets response to medication well, it would be hard to push MOs for RT. I hope I answered your question.
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42young,
I have lived with mbc for 9 years. I have a single bone met to my upper femur. I had rads to the little bugger and have had no progression. My other tx has been AI’s. I have cycled through all three of them hoping for fewer se’s but I can’t complain. Wishing you the best
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Thanks everyone for chiming in
I-beat-it, my bone SUV at diagnosis was 4.8, then it went down to nothing within 6 months of treatment. My MO at Dana Farber said they can radiate if I claim pain. However, with mets in 2 places, they are not sure if I will get any benefits from it. He said those mets may stay inactive for long time without radiation or may wake up anytime. My other MO at local cancer center said no radiation if inactive on scans.
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