Shannon Doherty & The Amount of Misinformation About MBC
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“How we choose to talk about it is one thing, and there probably is little harm in using Stage IV and MBC interchangably. But in how breast cancer is officially recorded and tracked, maintaining the difference is crucial.“ - beesie
I think you made an important distinction. For everyday reference, many of us use the terms interchangeably and there is little harm done as you say. Clearly, when gathering data one has to be more precise so that the data is as accurate as possible
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Mods remove if anyone has objections to me posting here. I just have a question for Beesie that I think is relevant.
Beesie:
I was just curious, do you know if SEER has a way to handle neoadjuvant staging in those who receive neoadjuvant chemotherapy, where lymph node involvement cannot be as conclusively determined due to the potentional of pCR of lymphatic micromets?
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Okay, folks, I just sent an email to ABC News about their coverage of the Shannen Dougherty situation. This was after YET another short blip on Good Morning America showing a tearful Shannen talking about how much time she has left. I get it -- all of us with MBC get it -- but to have Amy Robach, herself a BC survivor, interviewing Dougherty and pressing her on things that can upset others -- this is more than sensationalist TV. I am a long time ABC News and GMA watcher, but seriously -- I just said in the email that if they can't provide more information about MBC rather than just this tearful interview, they need to stop or they will lose viewers. This morning, my husband watched the clip that they had, gathered up his stuff, and then went to the gym. I could see that he was visibly upset by what she was saying and Robach was asking.
I also asked ABC News to instead start investigating Big Pharma to find out how, after all these years, there's not more progress in MBC. (We all know the answer to this for sure -- it's because of $$$$$.) That would be much better than dragging out Dougherty's story.
Also told them all we need is a little hope -- that this constant "we're all going to die" is VERY upsetting to us who are still trying to live. I'd urge others to email them so they get the message. Search ABC News, and in the writeup, after a phone number that's there, it lets you link to an email form directed to each of their shows.
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BevJen ~
That was so great of you to do that! I need to contact ABC also.
I don't have mets but I have had BC 2x. My daughter is scared that I'm going to die from BC. I know we will all die someday but this reporting
did seem sensationalistic and makes BC/mets look like a death sentence.
Wishing all here hope and long lives!
Jaybird ~
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Does anyone know why type of breast cancer Shannon has, for example, if TNB or hormone positive? I have not been able to google that.
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bevjen thank you! I did it too!! :-)
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BevJen, you are so right about GMA continuing to sensationalize Shannen's story for ratings. I feel like ABC/GMA are the worst offenders in this regard about sensationalizing headlines, high on the emotional content and giving us no real information.They are dramatizing Shannen being “young and dying" but will turn around in October and run stories of women with mbc who are beating the odds and living much longer than expected. I hate how they jerk the general public around like that. Imagine women getting an mbc diagnosis now and only knowing Shannen's story and thinking they are just going to die, no treatment available. Because as far as I can tell, they aren't even saying Shannen is in any treatment currently. But like I said, you have the glossy Ibrance ads and other similar drug commercials showing women with mbc strolling through flower fields and picnicking at their lakeside cottage. No wonder when women learn they have mbc they are so confused.
Oh, and I think they stick Amy Robach on the bc stories to make them seem credible, like we're really learning the whole story—since she too was treated for bc, it gives the impression she will know the right questions to ask.
Regarding Shannen's diagnosis, it's not been said what type bc she has, another misleading way to make people think all breast cancer is the same. I did read that her cancer has spread to lymph nodes and bones,
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I think she at one time had at least an estrogen positive profile if she started on hormone therapy first before the surgery etc.
She looks good (just like the rest of us do too!
) so would assume she is on a similar regimen to most of us. A stretch of an assumption but not too far.I think part of the challenge as well is that a lot of people don't know what happens for treatment or assume its the slash and burn (or nothing at all!) of the early stages. I find it amazing that the two small pills I take in the morning have both decreased the breast tumor and will keep the rest of it from growing for a while. But for the gen pop its still that whole hooked up to the chemo pole vision with hair falling out etc. Shannon already did that, and shared the photos widely, so now she is technically sicker but looks healthier is... well that would be confusing for anyone 'just tuning in'.
Are they really showing MBC drug ads on tv in the US? My parents only have a Roku box these days, otherwise we have to actively turn on a tv if we are traveling somewhere else in the US. Ill keep an eye out when we are back in September and October.
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Oh, yeah. They have Ibrance ads galore. Now I see that they are starting Kisqali ads as well. And I've even seen at least one for Piqray (I'm in the DC metro area). It just makes my blood boil. As Divine said, the ads are outrageous. Everyone is so happy -- they are running marathons, they are going to the lake and reading, they are setting up their kids at college -- all while looking so blissfully happy it makes me want to puke -- especially when I pay my exorbitant co-pays each and every month. I'm paying for those damn ads.
They also have a whole host of ads on TV for diabetes drugs (the expensive ones, more than insulin). My husband is a diabetic, so we get a double whammy
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on the topic of staging, after my own experience I wonder how many Stage 1 or 2 women who progress s, might actually have beenStage IV de novo.
I was diagnosed Stage 2. If I hadn't had a breast MRI after the mammo and US and then had a radiologist read the MRI who thought she saw a lung nodule (which actually wasn't there) and then had a PET ordered... my bone Mets would not have been found at the time and I would have been treated as Stage 2 .
My oncologist does not routinely scan Stage 2 women
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Olma61 - Good question! I was stage IIB at original diagnosis in 2010. After being declared cancer free and going through all the surgeries, radiation and all, I would get a yearly mammogram on the one side I still had a breast and then get blood tested before each MO visit and told I was still cancer free. After 9 1/2 years, it is back again and is a recurrence to the original cancer. I just finished chemo a few weeks ago and currently going through radiation and my new radiation oncologist told me that likely what may have happened is that I had one or two small cancer cells that may have been outside of the area that was radiated last time. So, if my RO is right, could it be possible that I was de novo and how many others might be? They don't give us PET scans after earlier stages to make sure they got all of the cancer and yes, I know that a PET scan is not perfect but could it have detected that we still had cancer, instead of allowing it to grow for a length of time?
BevJen - Good for you contacting ABC. I think they and other news outlets need to also know that MBC patients are not being counted correctly (see several posts up talking about SEERS) and may account for the underfunding for MBC.
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I guess I just dont quite get why you would advertise drugs that are more MBC related, or dependent on a specific mutation. Are early stage women supposed to just rock up to their MO's office and say 'hey I saw this ad for something called Piqray...' ? This isn't Viagra we are talking about here, or some new herpes med so you can float down the river with your loved one in a canoe and know everything is gonna be ok.
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Sondra,
I agree. My endocrinologist and I were talking about this the other day, and her point was that this is being marketed to such a small group of people that why are they spending so much $$$ on these ads??? Go figure.
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Sondra,
Advertising for prescription drugs is legal in the US. The ads for Ibrance, Verzenio, Piqray and Kisqali clearly state that they are for MBC patients and then go on to note that MBC is breast cancer that has spread to other parts of the body. So, if lower stage women are asking their doctors about these drugs they were not paying attention to what the commercial clearly stated
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yes, cowgal, tumor marker tests are not accurate for everyone. Mine were and continue to be in normal range and I had zero pain or other symptoms.
I don’t know if routine scans are the answer here but at least one at diagnosis maybe
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WC3, sorry but I don't know.
The following comments relate to the recent questions about early stage diagnoses and the development of mets. As an early-stage patient who has looked into this, I think I can add information to the conversation.
Olma and others, to my understanding, anyone who develops mets without first developing a localized (in the breast area) or regional (nodal) recurrence technically would have been Stage IV de novo. This represents most people who develop mets. But the term Stage IV de novo is specifically used only for patients who are identified to have mets at the time of their initial diagnosis, whereas the others may not develop mets for 5 years or 10 years or longer. And some who initially fit into this category might not develop mets at all.
There is no way for breast cancer cells to move into the body other than from a tumor that originates in the breast. Once the breast cancer is fully removed from the breast and nodes (i.e. there is never a local or regional recurrence), then the only way those breast cancer cells could have ended up elsewhere in the body is if they moved there prior to the original surgery when the cancer was first removed.
The problem is that in a large majority of those cases, particularly for those who start off early stage (or appearing to be early stage), the number of breast cancer cells that are hiding out somewhere else in the body is too small to detect with any screening modality, even a PET. This is why so many people get clear scans and yet later develop mets. This is why it sometimes takes 10 or 15 years before mets are discovered, either through screening or because of the development of a physical symptom. The breast cancer cells were always in the body, but if it's just a small number of cells that are lying there dormant, they are impossible find with current medical technology.
This is also why chemo, a systemic treatment primarily used to target cancer cells outside of the primary breast tumor, is recommended to non-Stage IV patients who have a risk of mets above a certain level (the level at which the benefit of chemo outweighs the risks from chemo). None of these patients have detectable mets, yet chemo is given just in case there are a small number of cancer cells sitting somewhere else in the body. At this point, chemo can successfully kill off the cancer because it's just a small number of cells (and maybe because it's dormant vs. active - I don't know if that makes a difference) and in this way, chemo is able to stop the development of mets before it happens. This is reflected in stats that show, for non-Stage IV patients, the percent of patients who don't have chemo who develop a metastatic recurrence versus the percent of patients who do have chemo who develop a metastatic recurrence. Chemo is far from a sure thing, but it does reduce the percent of early-stage patients who develop mets by about 30% (I may be off in that number).
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Beesie:
No worries. I greatly appreciate you and the knowledge you have shared.
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Bessie,
I had chemo for my early stage almost 13 years ago and was just DX in 2019 with mets. I took the AI for 7 years and Tamoxifen for the 1st 2 years. I still got Mets...go figure, I’m not sure anyone is ever cured once they have cancer. It can lay dormant and strike at anytime, not to scare anyone but I was told with all my chemo, surgery meds and radiation I had less than a 6% chance of distant disease. I have even heard lately that DCIS can develop into metastatic disease however rare.
BevJen
My Hubs has diabetes also we are hit from all sides! I think the pharmaceutical companies do all the ads for tax breaks.
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I think it's important to maintain the difference between Stage IV de Novo (my case) and, say, Stage II recurrent with distant metastasis, apart from the statistical ones. De novo has not been pre-treated so may respond differentially to treatment, something not taken into account in clinical trials. Research here is sorely needed.
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It seems we need multiple types of data and statistics to be collected when it comes to tracking metastatic breast cancer and how stages are recorded. In this era of Big Data, someone or some people need to come up with a computer program capable of keeping track of it all, separating the stages for one form of statistics while also able to track how many women progress to metastases without them having to die before being counted.
This missing information may be a very necessary piece of the research puzzle that we currently don't have. It seems the metastatic community is ripe for a breakthrough on this front. All kinds of computer programs are created in all fields to gather statistical data. Why not for us. Case in point:
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My nephew graduated from medical school last year, the first doctor in our family's history. As a proud family member, I was fascinated to gain some medical school insights.
One such insight was Match Day, which I'd never heard of. Some of you may know about it. Match Day is the day when medical students across the U.S. who applied to residency programs find out who's offered them a position.
Students start applying to residency programs the previous summer before graduation. Those programs decide who they want to interview, then do interviews from October to February, after which students submit a "rank-order list" of hospitals where they wish to train. (Their choices are based on location, working in a community hospital vs. a university one, fit of the program to their specialty and more.). Similarly, hospital residency programs submit a rank-order list of applicants they prefer to train.
This process encompasses 43,000 applicants and 31,000 positions. It is blinded so that neither students or the residency programs see each other's rank-order lists.
>>The two parties' rank-order lists are processed using the National Resident Matching Program's matching algorithm, creating matches between applicants and programs.
The matching algorithm is so important to residency assignments that the researchers who developed it — Dr. Lloyd Shapelyand Dr. Alvin Roth— won the 2012 Nobel Prize in Economics for their work,
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So I'm thinking there are some mathematical scholars out there who could invest their genius minds, time, energy and talent into developing a tracking system for the metastatic breast cancer community. And maybe even win a Nobel prize for doing so.
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Very interesting conversation. Thank you all for the information. I wish Shannon the best. Had I been interviewed the first year or two of my diagnosis , I would have been emotional, tearful, and terrified that my life was ending soon. Now 8 and a half years later I am still here and there were times I could have been on the ibrance commercial, living a joyful life, running (half) marathons, welcoming new grandchildren, travelling. That said, I don't understand all the ads either. Are there stage 4 patients who aren't aware of the new drugs that have input in what treatment to try next and won't Do their own research? Do they watch? Both my husband I still despise all the cancer ads and either change the channel or ignore them. If I am in a good place I don't want to be reminded I have cancer, if I am struggling I don't want to see happy people with a treatment that extends life for a few months in average. It would seem such a small percentage of viewers that pay attention. Also, I am curious as to how seer gets the data. Are all oncologists required to report to them, if so, how often? Is it funeral homes , hospitals , or oncologists that are to report the death and cause? The often cited data seems to have questionable accuracy. That is scary to me as I am at a university research hospital , top 10 in nation for cancer care, and the tumor board that meets monthly to discuss unusual cases (mine included as I developed a 2nd new breast cancer recently) may use that data in decisions for care going forward.
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Divine- what an inspired idea!! How about an inter-medical school challenge? Or maybe this count would properly be is in NIH/NCI's wheelhouse? And rather than a nobel prize, let the winners get free tuition!! We just need some interested billionaire to step up. It would be an excellent real-world problem for state of the art statisticians.
The one thing I take from the CDKinhibitor commercials is to go around reminding everyone in my famiily that I am just one of thousands of women who are " living in the moment" with MBC.
Like we all decided to ditch our boring lives and go hang in Vegas
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What? Did someone say we're going to Vegas?
I wonder how much of an obstacle privacy laws are or are not to gathering mbc statistics.
Could we win enough in Vegas to pay for our drugs? Umm do I consider myself unlucky because of mbc or lucky because of 5 1/2 years?
P.S. She spells her name Shannen.
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The ads drive me crazy. And none of the reporting I've heard about this story tries to educate about MBC. Like how many get it after a decade or more from being "cured" which we all know is really NED. So many people didn't know it could ever show its ugly presence again, and in places other than the breast. Then stupid reporting like quoting State Farm and not calling them out on their "full recovery". Shows how little they researched the story.
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Apologies in advance if I read something incorrectly, but I feel like I saw somewhere that Ibrance may in the future be offered for long term aftercare for lower stages. If this is true then perhaps its getting ahead of that to get the drug name out there in advance in order to encourage those women to 'ask their doctors about Ibrance' even if its not really on the table (now) as an option (would any insurance company pay for that??). Other than that they are either getting a tax break, there is some other strategy regarding patent extension, or they know some data we don't.
Regarding the data - I should think a subset of the population using data provided by a few of the NCI centers for a representative statistical sample with broader data point collection than SEER (in an updated data warehouse environment too where you could apply a lot more, and fancier, analytics on top) it would be a good trial to start. I don't know the finer points of data privacy, but you wouldn't necessarily need to collect names, OR you could collect the data and technically do it on a distributed ledger that would encrypt a lot of privacy data attached with each record that would not be able to be unencrypted without reason (to reveal the actual personal identifiers underneath). Each center could update the database as needed, but no one entity 'owns' the database and limits single point of failure security risks. Each person would have a number/ID assigned to them that they could then provide to a new oncologist if they move to ensure the tracking is kept up to date. (note: not a data scientist, just working on a similar idea at work at the moment). The data collection and storage and privacy management is easy enough (and wouldn't necessarily be that expensive to achieve if the cost is spread across many outlets), its getting the political will to do it and challenge the entrenched approach.
But - comes down to money. Data can solve lots of interesting problems, but only if its worthwhile (financially) or mandated that they be solved. I know we would all like to see more substantial statistics or better collection but until this system breaks down or some other entity is clamoring for better data, think we are stuck with it. Which is a shame because I don't think the figures are necessarily accurate, or possibly presented poorly. Updated stats could change the tone of the whole conversation as well from happy pink! which a lot of companies are invested in or questions about spending on advocacy/research that some orgs would rather not be asked.
The commercials though - man, I would really like to see the strategic justification for those!
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I posit that the pharma commercials are actually aimed at current and potential investors, not patients.
Tina
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Tina,
Yes, that too. It doesn't make them any less annoying or insensitive. And -- well -- big Pharma doesn't really need the stock boost right now. But I guess the interfamily fighting among the Pharma companies inspires more and more stuff on the TV.
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Here is some information from our site on staging that may be helpful: Breast Cancer Stages
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This thread made for interesting reading.
Ads for cancer drugs ?????! Wow.
Being de novo I’m also used to differentiating stage 4 from stage 2 with recurrence . That’s actually how I thought it was done around the world. Treatment is different and everybody from stage 1-3 would disappear out the statistics with 100% survival ? Call me naive. I just call mine “incurable” cancer.
Routine here to get full body scans and ultrasounds straight away so I don’t think they miss all that many stage 4 people that could have been stage 2 and then 4 months later discovering mets that were probably there all along. But technically I was stage X for less than a week 🤦🏻♀️
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Shetland- Did you not get the Ibrance memo?! This is us, the MBC Gang- Hakuna Matata, Baby!!
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