STEAM ROOM FOR ANGER
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Heard about Shannon and thought the exact same thing when I heard. Sad she has it again and Stage IV but know she is fighting it too. They should state facts and not fear.
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What Shannen actually said is:
As a person with a deadly illness, Doherty can't help but imagine a future without her in it. She has mentally cataloged her possessions and thought about which items should go to whom. "I haven't sat down to write letters. That's something I need to do," she says. "There are things I need to say to my mom. I want my husband to know what he's meant to me." For the first time in our conversations, Doherty's voice cracks. She says she has also thought about making video messages for them to watch after her death. "But whenever it comes time for me to do it, it feels so final. It feels like you're signing off, and I'm not signing off," she says. "I feel like I'm a very, very healthy human being. It's hard to wrap up your affairs when you feel like you're going to live another 10 or 15 years."
The Elle article is one of the best I've ever read in the mainstream media (i.e. not a medical journal) in it's explanations and descriptions of breast cancer
"A breast cancer patient in remission knows it's never really over. There is the long-lasting damage from the treatment to contend with—the lingering effects of chemotherapy, for example, or the loss of a natural breast that can never be replaced, plastic surgery notwithstanding. The terror of the diagnosis is also hard to forget, especially because after breast cancer treatment ends, there is always the chance the disease might recur."
and metastatic breast cancer
"Would she die of this? Probably. Would she die soon? Probably not. Why did this happen? It was impossible to know. Could this be treated? Yes, to a point.... Treatment for metastatic breast cancer, which was once an automatic death sentence, has advanced in recent years, with patients living longer and having a better quality of life. Some survive for a decade or more."
https://www.elle.com/culture/a34144792/shannen-doherty-breast-cancer-interview/
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While it would be good for articles written for the general public to explain more about the variability of stage iv survival, mets locations, types of treatment, etc. — I fear that may be too much to ask at this point. I have to agree with Beesie. I was surprised at how many accurate statements about mbc were contained in this article. It may not be perfect, but it is the best I have seen. I noticed that at the bottom it said this about the author: “Kate Pickert is the author of Radical: The Science, Culture and History of Breast Cancer in America, which was released in paperback on September 29.“ So she will have done her research.
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I'm still just pissed it didn't say 3 years median survival. And stage IV breast cancer fucking IS still a death sentence, what is this "*once* an automatic death sentence" nonsense. Just because it takes months of gruelling treatment to arrive doesn't make it any less of an automatic death sentence. We have TWO survivors in the world and while I hope and dream someone here is the 3rd and 4th and 500th... reality says otherwise.
I'm sick & tired of the "some live a decade!" when most of us don't.0 -
And this is the thread for being angry! That little hedge word “automatic"... And what's a decade when our age-mates will get their expected two, three, four, or five decades? I mean, I know I’m getting ripped off.
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Another good article. An interview with the author mentioned above. She did have BC. Not MBC. Keep'm coming.
https://www.npr.org/2019/10/08/768166971/kate-pickert-writes-about-her-ordeal-with-cancer-in-radical
I hate the word remission. People are always asking me if I am in remission. The elle article almost made it seem like either/or, all the same. Remission is bad, MBC is bad. Yes and no. MBC is more bad.
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moth, I took "automatic death sentence" to mean that someone would die within the short-term (often within months), which is certainly no longer the assumption for most patients who develop mets. In the next sentence, it's stated that "Some survive for a decade or more", which to me implies that 1) many if not most do not survive that long (i.e. "some") and 2) eventually everyone does die ("a decade or more" being touted as a very positive outcome).
I think the fact that Shannen is talking about the need to write those final letters makes the point that yes, this is terminal. But when? No one knows. That seems to be a pretty realistic description and is similar to much of what I see written here, particularly when support is given to those newly diagnosed with mets.
Question for you (or anyone who can contribute): Do you know if 3 years median survival remains accurate? I've been seeing that same figure since 2005, when I first joined this site and first started reading up on breast cancer. There are quite a few meds available now, for those who have mets, that were not approved in 2005. Has this increased the median survival?
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Thanks for the link to the article. Sounds like she is doing well as can be and hopefully she's enjoying life and will have several more years at it. My sister is metastatic ER+ also in her spine (practically de novo), and just recently had some progression since 2014. Still lots of life and several more treatments to go.
@cm2020-I really don't know what to say. My husband, like Alice was not so emotional around me when I was diagnosed but he told me later that he cried to a friend. I then told him that I wasn't dying and that I should be OK. Then, he didn't ask or seem to care much, and I was OK with it. It should get better for you in time, but we certainly understand how you feel!
Last year when he got sick (lung cancer) we both knew that this was it. I wonder if God gave me cancer first so that I would be more understanding of the zillion thoughts that go on in your head, let alone learning all that you can. I was oblivious to bc and every other type cancer there is. I wish I could unknow, and unsee all of it! So, I think in general anyone you come across that is oblivious, when they ask (or don't ask) how you are, they just don't know any better. They will never 100% get it unless it were to happen to them. My husband would never touch my treated side after radiation. I though that was weird, but oh well. I wasn't going to make him, or even tell him it was OK, I just let him be him.
@Alice I didn't realize your kidney diagnosis was made on post breast. You're like super woman or something.
I wonder that should one of my friends be so unlucky to get diagnosed, will they then be blowing up my phone asking what to do? At all these dinners you can tell they want the short answers when they ask how I am if the subject comes up at all. In the steam room though I can say-WTF. Now you want to know. Just the way it is.
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Is this the start of the Puketober push?
I was just wondering the other day about Shannen, as I saw a cinema in town will be screening Heathers shortly. I'm glad to see she is still speaking up and, while a lot of the language was a bit more on target and more careful than a lot of these ladies mags, I also wasn't keen on the 'used to be automatic death sentence' and 'some live 10 years or longer with the disease'. At the very least its an article talking about MBC and not someone's tough struggle with 2mm of DCIS.
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Beesie, this article discusses longer survival times now compared to the past, but it does so in terms of percentage of stage iv de novo patients who survive at least five years, rather than median survival. (Scroll down to the box that says Epidemiology.)
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yes, it's the puketober & I DO give Elle credit for talking about metastatic disease
isn't part of the issue that many of us are not counted? De Novos get counted, recurrences do not because we technically stay at whatever stage when originally diagnosed. so I'm not stage IV, I'm stage 1A with mets & then I'm not sure how they count survival - from original dx or from mets dx?
I saw a European study comparing de novo with recurrence pts from 2007-2009 from the Netherlands. "The median survival of patients with de novo metastatic breast cancer was 29.4 months (95% CI 19.3–35.0 months) compared with 21.1 months (95% CI 18.7–24.4 months) for patients with recurrent metastatic breast cancer (P=0.14)." https://www.nature.com/articles/bjc2015127In another newer European study they were looking at pts from 2008-2018 & they were concerned about difference in outcome if referred to palliative care versus not but buried in there is this: "The median probability of overall survival (OS) for patients who did not receive SPC services was 3.6 years (95% CI 2.0 to 5.1)" https://esmoopen.bmj.com/content/5/5/e000905
So I think 3'ish is still fair. The HER2+ bone mets only group bump up survival but us TNBC people drag the stats down. My provincial cancer agency has a grimmer view. In their info dated 2017 they give median as 24 mos for everyone and say tnbc is a year or less http://www.bccancer.bc.ca/books/breast/management/...
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Shetland, that's really interesting, thanks. While it doesn't directly answer the specific question I had, there is some very interesting information both in the article you linked and in the footnoted articles. From the footnoted article, it appears that I have my answer. If I'm interpreting correctly, survival from time of metastatic recurrence has not improved (1990 to 2011). However, significantly fewer patients have been developing mets, which might explain the reason for this:
"The observed fifty percent relative decline in distant breast cancer recurrence over time may be related to both improved treatment for initial disease at diagnosis decreasing recurrence risk (hormonal therapy, polychemotherapy, dose-dense chemotherapy, taxanes, and trastuzumab) and stage shift to more early and less late stage disease at diagnosis with improved screening technology and screening program participation. Distant recurrent disease incidence decline over time differed by phenotypic characteristics. We observed a 70% decline in distant disease recurrence among hormone receptor-positive patients and a 50% decline among hormone receptor-negative patients over time. We observed a 60% decline in distant disease recurrence among HER2 positive patients from 1999 to 2006. The differential decline associated with phenotypic subtype creates a new profile of recurrent metastatic breast cancer with fewer HR and HER2-positive cases and relatively more TNBC cases. Ten-year cumulative incidence comparisons to accommodate the longer interval to distant recurrence among HR-positive versus HR-negative disease did not significantly differ from 5-year rates." Source: Examination of a paradox: recurrent metastatic breast cancer incidence decline without improved distant disease survival: 1990–2011 https://link.springer.com/article/10.1007/s10549-018-05090-y
From a different article, here's a graph showing, over 3 time periods, the percent who have developed recurrent MBC, by stage at time of initial diagnosis:Source: Differential presentation and survival of de novo and recurrent metastatic breast cancer over time: 1990–2010 https://link.springer.com/article/10.1007/s10549-017-4529-5#Fig3
And from the article you linked, a couple of very interesting points:
"Although only 3% to 5% of invasive breast cancers are currently diagnosed as stage IV disease, as fewer patients with early breast cancer suffer distant recurrences because of improved adjuvant treatment, those with de novo stage IV disease represent nearly one‐half of the estimated 155,000 patients with MBC living in the United States today."
"We previously observed significant improvement in 5‐year disease‐specific survival of patients with de novo stage IV metastatic breast cancer (MBC) over time from 1990 to 2010 without a concurrent improvement in the survival of patients with recurrent MBC from our study of an institutional cohort of breast cancer registry patients"
Sorry, I know this is a "rant" thread and I don't mean to hijack it. But the fact that metastatic survival rates have not improved for those diagnosed with recurrent metastatic breast cancer is reason to rant. It shows how some subtypes of breast cancer have been left behind while progress has been made on others.0 -
moth,
Estimation of the Number of Women Living with Metastatic Breast Cancer in the United States
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moth I keep forgetting they don't actually change the staging, so I see a very valid point in what are the stats?
How is the Tecentriq treating you? Husband had that as well on top of 2 chemos. He would have just done that immuno if he had stayed stable long enough.
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Moth - I do wonder at age of diagnosis in those stats - its everyone isnt it? If some skew younger or older, etc.
I have seen at least two news reports here of ladies in late 30s/early 40s diagnosed with Stage IV breast cancer (one was recurrence, one de novo) who passed within a year of diagnosis. That seems unbelievable somehow - was it preference to not undertake treatment? One lady was actually a cancer researcher herself. Comorbidities? Other factors? Why do some fall so fast through treatment lines and others don't?
I guess these are the questions researchers are trying to find answers to, but for all the claims of cancer being so unique to an individual, they sure do like to lump people together a lot.
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runor...Thank you so much for the support and additional insight. You have actually described exactly how I feel and I didn't even realize it until I read your post and realized I was crying because not only did you absolutely get perfectly how I feel but also because it is such a relief that someone fully gets it (as does everyone here). Your descriptions are incredibly on point and accurate...you have a real gift with words. It truly feels like you crawled in my head and then just wrote about what you saw while in there.
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ctmbiskia - Tecentriq is so easy peasy for me that it's ridiculous. I hope it's actually doing something (because there's a possibility the chemo is doing all the heavy lifting and Tecentriq is doing nothing). I have no troublesome SEs from it. I'm sorry it didn't help your dh reach stability. Damned cancer.
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Saw my onco on the news pushing Pinkcraptober. Kind of made me sick.
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Oh 💩💩. Starts today.
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Hate puketober!!!!
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My local grocery store knows me (with the exception of a few checkers). So they don't ask if I want to make a donation to breast cancer research. If they do, I just tell them that I've already contributed many thousands of dollars to breast cancer.
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As I said on another thread if someone asks if I want to make a donation I say I already did, and run my hand across my flat chest.
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Great responses!! Thanks for the good ideas!
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I needed stamps so I did purchase the bc ones. They've been around for a while and supposedly over 70% goes to research. (ducks head).
Today would have been our 36th wedding anniversary. Doing better than I was on his birthday. Hard to believe still where we were at this time last year. Our 35th was on a Sunday so my kids had a little celebration for us along with our normal football watching that we used to do. It was a good day. At least I can remember that.
Anyway, will leave a little photo of us from that day. We knew something was going on at this time but we were in wait land for pulmonologist appt. which he didn't make as the pain got so bad we ended up in the ER 2 days before the appt.
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Sending you love
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ctmbsikia
That's a great photo. Sending you a hug.
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Great photo.
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ctmbsikia, I hope you are doing okay today... I'm sure it's a difficult day for you. 'Firsts' are tough. I'm glad you have the good memories from last year. And the great family picture!
Sending hugs!
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