Stage IV: How do you define curative intent?
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First of all, DivineMrsM - OMG! And WTF is up with that disability doc?! <--- that was for all the linguists ::giggle::
Even if the cure for cancer is discovered tomorrow, we (well, "they") won't really know for 30, 40, 50 (more?) years that is "the cure" when it's proven by the cancer never recurring. I think chronic, or (really) long-term NEAD, is the best we can hope for in our hopefully-long lifetimes.
Edited to add... the more I think about it, the more I like LTNED - Long Term NED (Even though I keep seeing "Lieutenant Ned" when I read it, lol)
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SeeQ, now you've done it. None of the girls will be satisfied to dance with NED anymore. They will want to dance with Lieutenant NED!
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SP - As they should! LOL
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SeeQ, yes, Dr. Denial was a piece of work. I was instructed to take all my ct/bone/pet scans on cds to the appt. but he never asked for written reports. He looked at none of the cds and even asked if I wanted them back! A real kook. Wore lots of gold jewelry. The place I went to had his name emblazoned on everything “Dr. Denial Cancer Center”. It was creepy. I was denied disability due to his report but got a lawyer and the decision was reversed. Imagine that.
I enjoy words and try to roll with changes in our language but some things I hate. Turning nouns into verbs usually irritates me: “We’re going to ‘plate’ the food.” Ugh. I especially despise “adulting”. First of all, grow up! Secondly, stop complaining about it!
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Divine,
I am very accepting of linguistic change but the noun to verb thing is irritating. Given how quickly this change has been accepted I think it’s here to stay
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Very interesting discussion here. I appreciate what everyone is bringing to the table so far. I also think of curative or cured as being "no more disease, no more treatment" to borrow the phrase from and earlier poster. I guess that is a high bar to clear for Stage IV, but that's what I think of as curative. Most of us have heard of Judy Perkins - who does seem to be cured. Hopefully there will be more cases like this.
Then there are some exceptional responders out there who are NED for so long that it makes you wonder. I am thinking of one young woman in particular who I listened to in a podcast - she got to NED on Ibrance when it was still in trials, and has been NED ever since. She has even reduced her dose of Ibrance and still no peep from the cancer. In the absence of a true cure (meaning the cancer will never, ever come back and we will need no further cancer treatment) being NED for a long time is the next best thing I suppose.
I'm one year into having MBC and my cancer is just progressing up a storm and I am discouraged, to be honest. But I haven't totally given up yet. I think a real cure is possible. I don't know if it will happen in my lifetime, but I think it will happen one day.
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Lt NED ---- I'll go dancing with him any day!
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Or his brother Normal Lifespan NED. It seems to me there is a continuum from extending, prolonging, or continuing life for months or years to extending, prolonging, or continuing life until normal life expectancy is reached. All this assumes we stay on treatment until we can't, since we can't know how we would do off treatment, and most stage iv patients will recur off treatment, even from NED. Maybe in the future there will be a treatment promising enough that there will be a trial to show how stage iv people do long term after stopping it, and a large number of them will never recur. That would be similar to early stage treatment, where we have a good enough shot at being cured that treatment does not continue beyond five or ten years at most, even though we can't tell for sure who will be cured and who will recur. So I think "curative intent" means treating as if the person is early stage and actually has a chance at a cure (even though we can't tell who). Do you think that "curative intent" is simply a phrase that conveys to the insurance company or government health plan that the doctor thinks it is worth it to offer a particular stage iv patient what they would offer an early stage person?
By the way, I have heard that the Stable Boy is a decent dance partner too, and can dance as long as his buddies Ned and Lt. Ned.
I've had people ask me if I can go off treatment now that I am Ned, but sadly the answer is no. My family was so joyful when I reported my recent Ned that I wondered if they were equating it with cured. Again, sadly, no. There is a COST to extending, prolonging, or continuing life when you are stage iv. We pay it as long as we are able and/or willing. Many people do not understand this place between cured (no treatment) and facing imminent death. This place where we continually adapt our lives to fatigue, side effects, appointments, complications, etc.
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Great topic. I have nothing to contribute, but am adding it to my "Favorites" so that I can follow it.
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I love reading people's thoughts on this. I find the whole language of cancer infuriating and especially the way the media tries to simplify what is a very complex illness - you either "beat cancer" or you die! There doesn't seem to be any middle ground. I hate the way "terminal" is used in the media as soon as somebody has cancer that has spread.
I was diagnosed last year and I had no clue that women were living years and in some cases decades with continuous treatment and scans. Like I say I either thought you got cured or you died immediately from it.
I really don't think anybody should use the word cure for this illness. There are women out there who got diagnosed early stage and go away telling the world they are cured only for it to come back as stage 4 in a few years time. Some of them have no clue this is even a possibility, I think that's really sad and the term "curative intent" is misleading.
Similarly at the moment all my liver Mets are now undetectable on scans. My oncologist tells me of women she is treating (on the same her2 therapies of me) who are 17 and 15 years out from diagnosis and living a good quality of life. She gives me hope to treat this as a chronic disease. Then I look at my form that I've signed for treatment and the box "palliative treatment" is ticked and my heart instantly sinks and I think, am I kidding myself that this is a chronic illness. It's funny how just looking at the one word can bring up all my fears and doubts.
I think you just have to ignore the language and focus on your particular case. Even if I was NED for ten years I don't think I'd think of myself as cured but I would then truly begin to believe it's chronic and something that I could manage.
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I do think those terms terminal and palliative need to be adjusted for the between time of MBC diagnosis and the last few weeks/months before the end. The term 'thriver' has come about (which, personally, I dislike) but the medical terms, or at least medical terms we use to communicate between ourselves, our families,and our medical staff haven't quite caught up. Legally and medically, yes they are correct and accepted for those types of communication, but its really hard as a patient to use/hear those terms when working with your care team, even though you know its not meant in a literal sense.
This is all a very interesting discussion, though. Cancer has many confusing messages and myths around it in the first place and then you break it down to the BC level and that has even MORE confusion on top of it, with a lot of images and messaging reinforced by those corporate pinkwashing movements that by the time you get to MBC (and the life-prolonging drugs available to this type of cancer, at least) its very difficult to break it down and not only find the right language but also dispel a lot of the myths.
Finally, I don't think anyone can call themselves cured of any cancer until there is a blood test (or other modality) developed that can 100% detect cancer cells in the blood stream (which is a long ways off). But you can't tell that to most people because it would destroy hope and thats really all this game is about. Hope (and belief) that the tough treatments you are undergoing and the body parts removed will get all the cancer or keep it away for a long time or contain it at the very least.
Is Lt NED a naval aviator?
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SondraF - Well LT NED could be a naval aviator, because we're flying pretty high at that point... and naval ranks are abbreviated in all caps, so it works! Lolol
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Katiexo,
You made me think of when I was first diagnosed with MBC. I had a PleurX catheter inserted to deal with fluid in my right lung. The surgeon wasn’t sure if I would have to pay for the expensive bottles and having home are come twice a week to drain. He filled out a form for me to submit that described me as palliative. I balked and wouldn’t send it in as in my mind that meant near death. Of course, that’s not the medical meaning but my reaction was visceral.
I’m one of those early stagers with late progression. A friend always described breast cancer as having the sword of Damocles hanging over you. I hear people say they are cured and think, I hope so for your sake. Most people just don’t understand that those stinky little cells can hand out for decades.
For me I don’t think cured necessarily means no treatment though. I was on Tamoxifen and then an AI for a total of eight years but it was considered preventative. Did I have cancer at that time? I guess so but there are many others who may not, particularly if they did not have vascular and lymphatic invasion.
Interesting discussion..
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My MO at Dana Farber has told me that they are planning a clinical trial for Her2+ MBC de Novo patients with curative intent. He said that doctors do not know when to take patients off of maintenance drugs. They will be stopping meds for these clinical trial patients and "wait and see" what happens.
When I was diagnosed with de Novo MBC my MO told me that my MBC (I am ER+/PR+/HER2+) would be treated as a chronic disease and I feel good about that.
My brother was diagnosed with early stage breast cancer and his MO would not use the word cured. He's 6 years out, not taking anymore meds but his doctor will not tell him that he is cured. He told him there was a 30% chance that his cancer would come back, I was told that there is a 20% chance that mine will not come back and I would be "cured". I see the word cured as a guarantee so I think using it to describe cancer could be misleading.
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D37,
Thanks for your input. Chronic is still a problematic term for me because we don’t really have a tried and true treatment in place to manage a chronic disease in the way Type I diabetics do. This is another pasta situation. Throw something at it and if it sticks, i.e. no progression, then call it chronic tx. And I say this as a long term MBC patient! I am eternally grateful for my longevity thus far, but my tx and it’s good outcome so far are not applicable to most others. I don’t say I’m chronic, just very lucky!
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Wow, so that sort of trial is happening. Of course for Her2+ De novo since that is where we are seeing long-term survival most often. Do you happen to know the trial name or number? Many of us see the words "curative" "chronic" and "palliative" as misleading when it comes to cancer treatment. Our language needs to catch up to the current state of medicine in the field of breast cancer. That reminds me that there was a long discussion here on BCO a few years ago about finding a term to describe mbc patients who are living longer than one would expect just looking at statistics. New situation, new words needed. Go Linguisitcs.
https://community.breastcancer.org/forum/8/topics/843810?page=1#post_4703703
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exbrnxgrl,
That’s a good point. I do feel very lucky right now! I’m new to MBC but I’m doing well and feel good. I do like the sound of chronic though!
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D37 and Shetland Pony - I saw that trial discussed on Twitter, very exciting, I posted some stuff in the Breaking Research thread here. I’ll get a link.
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ShetlandPony,
I’m trying to find some information regarding the trial. Here is an interesting article about curative intent discussing research that the project leader Heather Parsons is doing https://reporter.nih.gov/search/13EECE094C8EC2D17598B8961CAA4A01A2FFCEB861BF/project-details/10215653
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If you scroll down a bit to BSandra's post on June 2 on this page, I made a reply with some slides and he also posted a slide or two from a different MO at Dana Farber -
https://community.breastcancer.org/forum/73/topics/860294?page=89#post_5672232
I can repost the slides in another thread if that would be helpful.
D37 thanks for that link, looks like they've developed a blood test and are looking for other markers to gauge who would be good candidate to pause treatment. I do know there are people with HER2+ MBC who have posted here and elsewhere that they have successfully stopped H&P after X number of years, there were some recent posts in the H&P thread - anecdotal evidence that this can be done - but to have biological indicators to guide a decision like this would be amazing.0 -
Olma61,
Thanks for the link to the slides. My MO mentioned in April that the trial regarding curative intent was in the planning phase. When I see him in September I will ask him for an update
That would be amazing if they had a blood test
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D37,
I like chronic as well but our “chronic” at stage IV is still the same old pasta throw. Although I like precision in language I am so grateful for my longevity that I personally don’t care what we call it. However, the academic and educator in me demanded that I start this thread 🤣
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Thanks for a really interesting discussion. I am one of the denovo HER2+ patients in what my oncologist calls - deep remission. I have been 6 years on maintenance therapy of Herceptin and Perjeta with Lt. NED. A month ago my onc and I decided to discontinue Perjeta because of its side effects (itchiness, diarrhea, awful fingernails) but to continue on Herceptin. We are watching and waiting now.
I am really pleased to see so many non-HER2+ people posting about long-term remission here. I agree that we need new language to describe our treatment. Thank you for the link to the article that outlines palliative vs curative vs life-extending chemo. I think we should consider chronic and maintenance as potential adjectives as well. I also wish that we could use "treatment" instead of "chemo" because I always have to explain that my drugs are not chemo-chemo (I have a full head of hair) but rather targeted therapies. Of course, the Herceptin bag says CHEMOTHERAPY on it.
Here are a couple of articles talking about potentially "cured" MBC patients:
Cancer vs. Judy Perkins
https://corp.inspire.com/resource/people-v-cancer-judy-perkins/
Judy is a friend of mine. She had TNMBC and had run out of options when she started a clinical trial with Tumor-Infiltrating Lymphocytes. The NIH has trotted her before Congress to speak as someone "cured" of MBC. Her story has been published all over the world, so you can Google her to find out more.Long-Term Survival of DeNovo HER2+ MBC Patients
https://pubmed.ncbi.nlm.nih.gov/30139836/
This study came out a couple of years ago. They looked at all of the HER2+ MBC patients between 1998 and 2015 at two cancer centers who were diagnosed deNovo and who achieved NED. 100% of them stayed NED. However, it's important to notice that there are more patients in later years and fewer in earlier years, so the jury is still out, but it's an interesting study.0 -
Great links! There is another lady named Barbara who was also “cured” with immunotherapy. I think she is involved with one of the advocacy orgs.
And in the HER2+ MBC realm, there areat least two long term survivors from the original Herceptin trials who have gone off meds.
Barbara Bradfield, who was played by Bernardette Peters in the film “Living Proof”
https://cancer.ucla.edu/Home/Components/News/News/472
And Ginger - this info is from an older post here on BCO -
Quote “I read a different message board occasionally for HER2 and a woman posted this in September...
I wanted to share with you, that once a year, I get to go to a dinner with a few other cancer survivors from the Jonsson Comprehensive Cancer Center, it is a donor dinner. Two years ago I met Ginger, she is one of the original ladies on the first Her2 trial. She was featured in the movie. She is alive and well at 70. When she went on the trial she was almost in liver failure, her liver was covered in mets. She is no longer on any treatments and is living happily in Bakersfield.”
Here is a more recent video featuring Ginger -
** note I still put quotes around “cured” because nothing with this damn disease seems final to me. Still, these stories are amazing and enough to inspire hope for better outcomes in MBC0 -
Thanks, Olma61! I shared Ginger's video with the HER2+ MBC Facebook Group. We have a member who was on the original Herceptin trial (not Ginger). It's so affirming to see women who have lived their lives while on treatment.
sj
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I'm confused. I don't know what I'm doing, where I'm going, and how I'll get there. It's been almost 13 years for me and am on the same treatment as I was when I started in 2008 - Herceptin and Arimidex. I was switched to Kanjintin 6 months ago, but I thought I was feeling side effects, so I went back on Herceptin. I have typical non-serious side effects that are manageable from these.
HOWEVER, the side effects that I have accrued from other medications have taken over the rest of my health and well-being all these years. I won't bore you with my stories (do a Search if you want), but I have had major jaw and mouth problems due to Zometa (was on it for 10 years), illness for months while prepping for implant (almost didn't get it because of infections), hospitalization due to false pneumonia xrays, etc., etc.,etc. I fell last month being unbalanced, had diarrhea, body aches for 2 weeks, and had Covid testing and a brain scan to rule out.
Most of my past continual, severe pain doesn't come from my bc. My mets are the same as they were 13 years ago. Last few years, I was on Augmentin for over a year and eventually developed unbearable side effects, and I will have to find something else if the inflammation comes back.
MY BOTTOM LINE is that we can never know if we kicked cancer or NED'd because it can always pop up again when you least expect it. The cure/treatment is worse than the cancer.
Thanks for letting me rant.
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stage 4 is curable for a small percentage of women , using the definition of living a normal lifespan and dying of something else. I agree with others that drs are treating select patients ( oligometastic, young, her2, etc) more aggressively with the hope of “ curing" them. When I was diagnosed 11 years ago, this term was not around.i went to Mayo for a second opinion and the onc talked about doing a trial to “ help future generations “, basically writing me off.
I pushed my local onc for aggressive treatment, found a liver specialist to do ablation and did a her2 vaccine trial, all to help me stick around long enough to raise my 3 kids who were 8,11 and 12 at the time I was diagnosed with two liver mets.
Fast forward to today, I have a new young onc ( who was trained at Mayo) who talks about me being oligometastic and thinks I am cured . I have been Ned for 10 1/2 years and on no treatment since 2015.I will never say I am cured, just as someone who is early stage never knows if they are, until I die of something else, hopefully 30 or 40 years from now
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Lauriesh, what a beautiful story to read!
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sort of related to this discussion, S2E19 of Our MBC life podcast is a recap of ASCO and Dr. Pluard was asked if he thught a cure was possible. He said yes & he was also asked to define what cured was in his mind.. https://www.ourmbclife.org/episodes
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Scrunchthecat, how fascinating that your FB group includes a woman from the original Herceptin trial. Altho I am dealing with her2- mbc, awhile ago, I read the book “Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer“ because the story is so incredible. It talked about the different women in the trial, including Barbara
Bradfield and I'm thrilled to hear she's still living.
I don't remember reading about Judy Perkins before, if I did her story has slipped my mind, so I will google her. And Ginger.
I'm also thrilled to learn about the Long-Term Survival of DeNovo HER2+ MBC Patients study looking at HER2+ MBC patients between 1998 and 2015 diagnosed deNovo who achieved NED and that 100% of them stayed NED. My gosh! So impressive!
moth, the website your gave the link for, ourmbclife.org, is interesting; I hadn’t ever come across it before. A lot of interesting topics which I plan to explore.
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