There has been conversation on twitter from women with metastatic breast cancer, upset because they believe the Federal Government's "cancer moonshot" ignores women with our disease. This puzzled me. When I read the bullet points of what the Feds hope to do I don't see how metastatic cancer patients cannot benefit. This Moonshot is, of course, meant to be inclusive of all cancers, but in my view, Metastatic cancer is implied all over the place, including breast.
That's the problems with twitter, we couldn't explain each other's position or ideas in 140 charactors. So I will share mine here.
How does the moonshot help metastatic breast cancer patients?
First, you must read the goals as listed by the White House.
They are laudable goals, and if I had any confidence in government, I'd be really excited. However, we have been fighting a "war on cancer" since Nixon's days, and the the truth is, I am not a believer in the government's ability to fix the problem of cancer (or any problem, really.) However, for purposes of explaining that their plans are intended to help metastatic patients, let's take them at face value and examine what they want to do
Let's take the bullet points one by one:
Prevention and Cancer Vaccine Development.
The complaint is about the word "prevention." I don't have a problem with working to prevent cancer but it is true, working on prevention is unlikely to help a metastatic breast cancer patient. However, there is nothing wrong with prevention as a goal, as long as it's not the only goal. Fortunately, it isn't. Remember, bullet point one doesn't only say Prevention, it also says Vaccine Development. which has already proven to be of benefit to metastatic patients.
Vaccines for cancer are in its infancy, but there have already been vaccines that have been developed to help metastatic people and those with the worst, most aggressive cancers. There have been small studies that show vaccines have helped people with deadly brain tumors, two conducted by Duke University. One studied tetanus, one studied a re-engineered polio vaccine in patients with glioblastoma with excellent results. (That one was shown on 60 minutes, and passed around the cancer community). Vaccines are not for prevention only.
There are several types of vaccines being looked at to help the most advanced forms of cancer. Tumor cell vaccines are made from actual cancer cells that have been removed from the patient during surgery (metastatic as well) and are being studied in breast cancer (as well as glioblastoma, prostate cancer and others.) One is in trial now for breast cancer patients who are stage four, called NeuVax, for HER2+ women. GVAX, a therapeutic vaccine made from breast cancer cell lines irradiated and engineered to express the immune molecule GM-CSF, is being tested in a phase II trial in patients with stage 4 breast cancer that does not overexpress HER2. There are more being studied for metastatic people.
Will this help metastatic cancer patients? I say
Early Cancer Detection
I agree that putting money into early cancer detection will not help a metastatic cancer patient. Since we do not yet know what causes mets, early detection doesn't seem to be the answer to stopping it. Most of us with metastatic breast cancer, indeed, were caught early stage. But if, in the early detection science, we learn how cancer metastasizes, that could be of value. If they are only going to focus on finding cancer (mammograms) rather than understanding it, this section will be a waste. But we must remember that the moonshot is not only for breast cancer, and some types of cancer are quite difficult to find at an early stage, such as Ovarian. Finding ovarian cancer early does seem to lead to much easier treatments and a potential cure. Liquid biopsies fit under this umbrella, and they may truly find cancer early enough to lead to a cure.
Will this help metastatic cancer patients? I say:
Cancer Immunotherapy and Combination Therapy:
Immunotherapy is what has kept me alive. I would have been dead two years ago without it. Immunotherapy is Herceptin, Perjeta, TDM-1 (Kadcyla), all of which have helped me as a metastatic cancer patient. CDX-011 is being studied for triple negative cancer. There is immunotherapy for many cancers - Rutuxan for Leukemia and Lymphoma. And breakthroughs move to different cancers: Herceptin has used in stomach and lung cancers, and who knows how more it may help? We must have many more therapies that help a patient's own immune system to fight cancer. More targeted therapies too, like Gleevac.
Most metsters are on combination therapy - herceptin/perjeta, or ibrance and faslodex. Studying which combos can be more effective can only help metsters.
Will this help metastatic cancer patients? I say
Genomic Analysis of Tumor and Surrounding Cells.
This is critical for understanding cancer and especially metastasis. Once we do gene sequencing and can analyze and compare genetic mutations, we can find out which cancers will spread, which may never spread, maybe stop them from spreading, stop them from spreading more. The possibilities are endless. We may learn the deep mysteries of cancer by focusing on genomic analysis which is critical for not only metsters, but every single person with cancer.
Will this help metastatic cancer patients? I say:
Enhanced Data Sharing,
As I shared recently, Big Data, along with genomic sequencing, is going to be the answer to cancer. Every cancer may be like a snowflake, with mine different than others with HER2+. Why have I responded to Perjecta and Kadcyla so well, and others haven't? If we could sequence my genes, and the genes of others like me, and not like me, and find that one difference that helps me respond, we learn something incredibly important. We could unlock the the mechanism of metastasis with a searchable database of cancer mutations. And if genius cancer researcher Dr. X at Duke has an idea, and genius biologist like Dr. Y at Caltech have an idea, and a genius geneticist Dr. Z at MIT have an idea, and they can access this database and see something from their own unique perspective, perhaps they can come up with new and better treatments, or a cure for all stages of cancer.
Will this help metastatic cancer patients? I say
:Oncology Center of Excellence.
Okay, this is just another government agency which will likely come up with a lot of bureaucratic junk that slows everything down. Sorry, but that's what happens. Unless they let doctors and researchers do their thing, which is unlikely.
Will this help metastatic cancer patients? I say:
Pediatric Cancer
They plan to spend more on pediatric cancers, which I am not complaining about. And they will be studying metastatic pediatric patients certainly.
Will this help metastatic cancer patients? I say:
Vice President’s Exceptional Opportunities in Cancer Research Fund:
They say, "To launch the National Cancer Moonshot, scientists, cancer physicians, advocates, philanthropic organizations, and representatives of the biotechnology and pharmaceutical industry will need to work together to focus on major new innovations in the understanding of and treatment for cancer."
Sounds nice but once again, too many cooks in the kitchen, too many people with competing interests. This could be a disaster. My personal opinion is only cancer researchers, scientists, physicians and biotech should work on this. Start adding advocates and philanthropic organizations and it starts to get balkanized and you start to get people worried about their own cancer and their own interests. And, you get people who read this and don't see "metastatic breast cancer" mentioned and because of the lack of three little words start being unable to see the forest for the trees. Give scientists money and let them do their thing.
However, they go on to say: "The work that the Vice President will be undertaking will ensure just that – bringing together all parties, breaking down silos, and sharing data to generate new ideas and new breakthroughs."
They are so right. The silos of each individual cancer/philanthopy organization/research institution has always problematic. When we don't work together, when we don't see commonalities, we can't solve the problem. If we can truly break down silos and share information about CANCER, in general, find out what is similar and what is different in every way it appears - we can make huge progress.
Will this help metastatic cancer patients? I say
In this world of cancer, we advocates also need to break down the silos of our own particular disease state and start realizing a win for one is a win for all. The word "metastatic" doesn't have to be there if the entire design of the program will help benefit metastatic patients, breast as well as others. Let's not miss the big picture. If this works as envisioned, we could solve cancer in my lifetime, the way we have basically solved AIDS.
But we must see the big picture and support scientists and the ultimate goal of this moonshot instead of attacking it for minor things Unfortunately, since the 1960s, our country doesn't have a very good track record of letting things like this unfold the way they were designed, and every advocate is going to get in there and want a piece of it, and special treatment for their own disease. They will tear it down so much it's just another government agency that does nothing.
Not that I'm cynical or anything.
Hi Ann,
ReplyDeleteI appreciate your well-articulated analysis that clearly took some time to put together. I agree, this Cancer Moonshot initiative does have the potential to impact metastatic patients, too, for the reasons you cited. I agree that a win for one is a win (potentially anyway) for all. Would I like to see the word metastatic used in the goal stating? Of course, but not seeing it doesn't mean this is not a worthwhile initiative for all cancers of all stages. I support it. Am I skeptical too? Of course I am. But I am hopeful too. Thanks for the post.
My concer isn't just about the language we use, or that any of the moonshot activities are bad ideas. My concern is that the moonshot doesn't include research into understanding the metastatic process. Since we still don't know how cancer metastasizes, and since 90% of cancer deaths, across organs of origin, are due to metastasis, this research should be added to the priorities.
ReplyDeleteI don't think we can expect metastasis research to be included in the early detection activities, and even if we could, it still deserves its own bullet point, not to be a sub-part to another research aim. Understanding and treating/preventing metastasis is too important to saving lives, across organs of origin, to be a "it might get included in this other goal."
There is exciting research on how cancer metastasizes happening, including at Fred Hutch, but it's not getting the attention it deserves and there aren't enough researchers going into metastatic research. Making it an explicit goal of the moonshot would drive more researches to tackle what is a very challenging problem.
I just explained how it does include research into understanding the metastatic process, so I don't understand your concern. At all.
DeleteThat's what this will do. Under every bullet point, it will drive our understanding of metastases. Cancer IS metastasis. It wouldn't be dangerous or kill anybody if it didn't metastasize and spread, and if it wasn't dangerous, this moonshot wouldn't happen. They are doing this to stop cancer from killing people.
Please don't get hung up on a single word when the whole project is so very obviously about metastatic cancer and cancer that kills. That's what I mean by people tearing it apart and not seeing the forest for the trees. Everybody wants their favorite word added, even though it's all over the thing, and they'll give in and spend millions on rewrites, eventually it becomes a meaningless, do-nothing bureaucracy.
Ann, where is the part about understanding the metastatic process? Under genomic profiling? Under the data sharing? My tumors has been genomically profiled. It didn't explain why my cancer is metastatic. We need bench research into the metastatic process to develop treatments for it. None of these topics address that.
DeleteSo confused...Did you read my post? Those things you mentioned and the rest will be done specifically to find out what causes cancer to grow and metastasize. Your tumor may have been sequenced but one tumor sequenced is not research. Many tumors sequenced and compared (with big data) can give an answer. Maybe a mutation is noticed for yours, maybe not. But when 100,000 people with cancer are added to a database who have that mutation, and we see that they all have a metastatic spread or more dangerous cancer-that gives an answer.
ReplyDeleteEvery researcher who has read my post agrees with me-it seems to be just a couple patients who don't get it. Which is understandable as patients aren't trained in how cancer research works.
But the his will absolutely help metastatic patients.
All of the ones I put green checks address it, and even one of the red x's possibly could.
I'm truly confused why you don't see it. It's all about metastases. If cancer just stayed out and never grew it spread, nobody would even care.
Ann, I did read your post. And the cancer moonshot goals. And I'm down with all of them, they're all great and I hope all will help save lives, including lives of metastatic patients. But why you believe research into the mechanisms and treatment/prevention of metastasis is included in these programs eludes me. Not one of them addresses this important topic, which affects almost all cancer types and causes nearly all cancer deaths. I continue to believe, and I'm not alone in this, that without basic research into the metastatic process, we will continue to make only incremental change in saving lives. Not just prolonging lives by a few months, which continues to be the standard for "exciting" clinical research, but actually saving them. I don't see demanding research into metastasis as a niche issue. I see it as key to turning currently terminal cancers into truly chronic ones. And if the moonshot is actually going to be transformational and not just another version of the war on cancer, it must tackle the big unknowns, like how cancer metasasizes and how to reverse the metastatic process, or prevent it from happening in the first place.
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