TNBC survivor rate
Thanks
Thomas
Comments
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Being triple negative is only one part of the equation
Having TNBC is not by itself an indicator of low survival rate. There is stage, node status, grade, type of cancer, BRCA status, chest wall invasion status, age of the patient, and on and on. There are also factors that we can't quite quantify yet, such as lifestyle and environmental factors. Generally, yes, the survivor rate for TNBC is lower than for a similar BC that has positive hormone receptors. Still, the majority of TNBC early stage patients will live to a ripe old age. There are even some positives to being TN: once we survive 3-5 years, our recurrence rate plummets, whereas hormone postive ladies have a pretty much constant (though lower) rate of recurrence their whole lives. I know many triple negative survivors who are many years away from diagnosis and have not recurred.
Here is a site where you can put in your individual factors to come up with some statistics. Of course remember that your wife is not a statistic, but I understand her need to see these: http://www.lifemath.net/cancer/
My best to both you.
Mimi0 -
Mimi is 100% right
Your wife is a person, not a number. Whatever statistics she may come across while Googling are likely to be outdated, misleading, or just plain wrong. When the Moopster and I first came here in January 2009, Mimi had already been out there sifting through the pile of "information" out there, and she was very good about steering us to accurate sources. Please encourage your wife *not* to Google!
All I would add is that there are indeed all sorts of TNBC survivors out there living happy, fulfilled and recurrence-free lives. You don't hear from them, or about them, all that much because, well, they're busy living their lives. But they are out there. A year and a half ago Moopy and Mimi were practically going through chemo together (I think Mimi was one three-week cycle ahead), with all the fun that includes. Now they are out and about and having their lives back. There is a life after TNBC, and as your wife will find out, it is a joyous one. So please ask her to keep at it, okay?
Best,
Joe0 -
More informationmimivac said:Being triple negative is only one part of the equation
Having TNBC is not by itself an indicator of low survival rate. There is stage, node status, grade, type of cancer, BRCA status, chest wall invasion status, age of the patient, and on and on. There are also factors that we can't quite quantify yet, such as lifestyle and environmental factors. Generally, yes, the survivor rate for TNBC is lower than for a similar BC that has positive hormone receptors. Still, the majority of TNBC early stage patients will live to a ripe old age. There are even some positives to being TN: once we survive 3-5 years, our recurrence rate plummets, whereas hormone postive ladies have a pretty much constant (though lower) rate of recurrence their whole lives. I know many triple negative survivors who are many years away from diagnosis and have not recurred.
Here is a site where you can put in your individual factors to come up with some statistics. Of course remember that your wife is not a statistic, but I understand her need to see these: http://www.lifemath.net/cancer/
My best to both you.
Mimi
She is 40 and stage 4, cancer came back in the spine (T9 and L1-3), liver, lung, chest wall, and spleen. The 20 or so nodes that were removed during the masectomy were negative, and BRCA status I believe was negative. She tells me that with the continued failed treatments that her chances diminish and the fact that she never went into remission and has been battling non-stop for nearly 2 years is not a good sign. The saving grace is the new oncologist that told her that the she does not treat based on scans alone and that she (my wife) is not what she expected to see after looking at her scans on our first visit. With the tumor marker going down, we have a bit of hope and tomorrow when we see the oncologist hopefully we will have some more good news.
Thanks
Thomas0 -
Preaching to the ChoirAortus said:Mimi is 100% right
Your wife is a person, not a number. Whatever statistics she may come across while Googling are likely to be outdated, misleading, or just plain wrong. When the Moopster and I first came here in January 2009, Mimi had already been out there sifting through the pile of "information" out there, and she was very good about steering us to accurate sources. Please encourage your wife *not* to Google!
All I would add is that there are indeed all sorts of TNBC survivors out there living happy, fulfilled and recurrence-free lives. You don't hear from them, or about them, all that much because, well, they're busy living their lives. But they are out there. A year and a half ago Moopy and Mimi were practically going through chemo together (I think Mimi was one three-week cycle ahead), with all the fun that includes. Now they are out and about and having their lives back. There is a life after TNBC, and as your wife will find out, it is a joyous one. So please ask her to keep at it, okay?
Best,
Joe
Trust me, I tell her all the time that she can be one of the few that makes it. I remind her all the time of what God is capable of and how I know that this trial will be a great testimony to God's grace and love. Our kids is the reason she is fighting so hard. I let her know that she has come this far and I know that she will give it her all every step of the way and the oncolgist told her as long as she fights, she will treat. I leave her notes on the mirror telling her that I love her and not keep fighting. We look forward to that life after TNBC.
Thanks,
Thomas0 -
HI
I can completely relate with your wife. I was diagnosed with tnbc about 18 months ago. I'm done with treatment now and starting to get some of my old stuff back. TNBC is a scary dx because of the limited options but there is so much room for hope! I am cancer free now, and praying that I stay that way. God bless you and your wife!
Will keep you in my prayers.
Alison0 -
Great to hearwebbwife50 said:HI
I can completely relate with your wife. I was diagnosed with tnbc about 18 months ago. I'm done with treatment now and starting to get some of my old stuff back. TNBC is a scary dx because of the limited options but there is so much room for hope! I am cancer free now, and praying that I stay that way. God bless you and your wife!
Will keep you in my prayers.
Alison
that someone else is cancer free and that the possibility is there. I will continue to feed my wife the success stories to counteract the ones she reads and hears about. Hopefully tomorrow will have some more good news.
Thank you,
Thomas0 -
whoopsmarines911 said:Great to hear
that someone else is cancer free and that the possibility is there. I will continue to feed my wife the success stories to counteract the ones she reads and hears about. Hopefully tomorrow will have some more good news.
Thank you,
Thomas
sorry, double post0 -
Fightingmimivac said:whoops
sorry, double post
This has become my tag line. I use this word all day, every day. It's just those low days that get the best of us.0 -
I came to CSN...Aortus said:Mimi is 100% right
Your wife is a person, not a number. Whatever statistics she may come across while Googling are likely to be outdated, misleading, or just plain wrong. When the Moopster and I first came here in January 2009, Mimi had already been out there sifting through the pile of "information" out there, and she was very good about steering us to accurate sources. Please encourage your wife *not* to Google!
All I would add is that there are indeed all sorts of TNBC survivors out there living happy, fulfilled and recurrence-free lives. You don't hear from them, or about them, all that much because, well, they're busy living their lives. But they are out there. A year and a half ago Moopy and Mimi were practically going through chemo together (I think Mimi was one three-week cycle ahead), with all the fun that includes. Now they are out and about and having their lives back. There is a life after TNBC, and as your wife will find out, it is a joyous one. So please ask her to keep at it, okay?
Best,
Joe
following completion of my chemotherapy in June. I too, am triple negative and was very confused about markers, etc. Aortus and the Moopster, damned if we don't get familiar fast here, were gracious enough to encourage me after one of my first posts.
I recommend the internet for shoe and book shopping, investigating the lives of celebrities, updating your NetFlix queue, chatting and emailing with friends on the other side of the planet, and the occasional icanhazcheeseburger. As suggested previously, there is a lot of outdated information and even this site can get anecdotal. Trust your physicians and ask questions.
My grandmother use to remind us that worrying would never add a minute to our lives and that we would never get those minutes back.
It's hard to give up control, I know, but I am learning to think of this journey as an inconvenience and trying to keep my focus on a life after cancer.0 -
Hit the nailI came to CSN...
following completion of my chemotherapy in June. I too, am triple negative and was very confused about markers, etc. Aortus and the Moopster, damned if we don't get familiar fast here, were gracious enough to encourage me after one of my first posts.
I recommend the internet for shoe and book shopping, investigating the lives of celebrities, updating your NetFlix queue, chatting and emailing with friends on the other side of the planet, and the occasional icanhazcheeseburger. As suggested previously, there is a lot of outdated information and even this site can get anecdotal. Trust your physicians and ask questions.
My grandmother use to remind us that worrying would never add a minute to our lives and that we would never get those minutes back.
It's hard to give up control, I know, but I am learning to think of this journey as an inconvenience and trying to keep my focus on a life after cancer.
right on the head. I have been told that and have told my wife that. Of course one of the hardest thing is to let go and trust in God and leave it at his feet. I really appreciate all the information and will use this advice and look forward to every moment with my wife. What I noticed that tends to cheer her up is remembering our wedding renewal and looking at the pictures and video.
Thanks again.0 -
Low days are a given ---marines911 said:Fighting
This has become my tag line. I use this word all day, every day. It's just those low days that get the best of us.
when dealing with this dis-ease! You're allowed. I'm not a triple neg, but do have something to offer. Remember years ago, before we know what we know now, (or we think we know ;-)) there was not such thing as staging....no such thing as triple neg, triple positive, or any combination of the mentioned, alot of the chemos just weren't around....and yet...AND YET...there are survivors. My aunt is one. They don't know what stage hers was (found lump under the arm, early 40's.); didn't know the type (idc, ilc, dcis...whatever); didn't know the properties (triple pos., triple neg, or comination). She had a radical mastectomy (only treatment then), and was told to go and live. Which, incidently she still is.
My point is.......................we don't know what the future is for any one of us. I do know that there are many, many ladies living with Stage IV. My pcp tells me of her friend who has bone mets, and has survived 12 years. Even rides horses!
Your wife doesn't have an expiration date on her foot, does she? No, didn't think so. None of us do. Once your wife gets her feet beneath her, and can wrap her mind about what she's fighting, she will be surprised at how well she will live.
Fists up, Marine!! The battles are on, and we are right behind your wife, giving you both all the support we can. And, by the way, sir...............thank YOU for the service that you give to your country!! That can't be said enough!0 -
We are all so unique!
I'm not TN - I'm IBC. I choose not to look at the so called "survival rates" (which aren't good for IBC) - Sat will be my 1 year since DX - YES! Those 'rates' are based on mega-people - I am "me, myself and I" AND nobody else. So for me, it is either 0% or 100% - either I keep 'riding' NED or I don't - there is no in-between.
Do your own checking 'on line' with a positive mind set. 2 people can read the exact same words and get/read 2 different 'things'.
(OH - Thank you for serving - Hubby of 34 years is retired USN)
Susan0 -
I am not TNBC either, but IRague said:We are all so unique!
I'm not TN - I'm IBC. I choose not to look at the so called "survival rates" (which aren't good for IBC) - Sat will be my 1 year since DX - YES! Those 'rates' are based on mega-people - I am "me, myself and I" AND nobody else. So for me, it is either 0% or 100% - either I keep 'riding' NED or I don't - there is no in-between.
Do your own checking 'on line' with a positive mind set. 2 people can read the exact same words and get/read 2 different 'things'.
(OH - Thank you for serving - Hubby of 34 years is retired USN)
Susan
I am not TNBC either, but I never asked my prognosis or wanted to know. this is not my first time, I had BC in 1994, and got it in the other breast 2009.As far as I am concerned statistics are for determining what kind of treatment you need, not when or if it will recurr or if you will die. I did not need that number to focus on, because it may or may not pertain to you. with cancer there is just no way to really know. I try to focus on the day, but I think its harder when you are in active treatment a constant reminder. hugs to you both!0 -
Oh yes my thanks to you forcarkris said:I am not TNBC either, but I
I am not TNBC either, but I never asked my prognosis or wanted to know. this is not my first time, I had BC in 1994, and got it in the other breast 2009.As far as I am concerned statistics are for determining what kind of treatment you need, not when or if it will recurr or if you will die. I did not need that number to focus on, because it may or may not pertain to you. with cancer there is just no way to really know. I try to focus on the day, but I think its harder when you are in active treatment a constant reminder. hugs to you both!
Oh yes my thanks to you for serving my father was a career "USAF I am therefore an Air Force brat0 -
The Statistics Are Old and Skewed
In order to calculate a ten year survival rate, they need to be using results that are at least ten years old. They don't separate out by race, brca status, quality of medical care...
It sounds like your wife is seeing a good doctor. Remember that triple negative responds well to chemo!!
Keep the faith
Bob0 -
If I have understood yourHubby said:The Statistics Are Old and Skewed
In order to calculate a ten year survival rate, they need to be using results that are at least ten years old. They don't separate out by race, brca status, quality of medical care...
It sounds like your wife is seeing a good doctor. Remember that triple negative responds well to chemo!!
Keep the faith
Bob
If I have understood your wife's condition correctly, I think it would be useful to focus on the statistics pertaining to lung cancer, or wherever her most serious recurrence appeared, rather than focusing on triple negative breast cancer statistics. The TNBC stats are helpful to know in terms getting through those first 3-5 years without a recurrence, but your wife has already had a recurrence and is now Stage 4. My wife didn't make it through that 3-5 year window unscathed either (she was diagnosed early 2009 with TNBC and seemed to be doing well until she began having seizures this past April, resulting in a diagnosis of brain metastasis. So I don't look at the breast cancer stats anymore--we are way beyond that now--I look at the brain cancer stats, and believe me they are grim. I did enough research to figure out what the general consensus was, so the Internet can be useful if you actually invest enough time to make sure you are not just getting one or two fringe opinions or articles. We have not even made it to our second wedding anniversary yet, and I am very concerned that we possibly never will. Sorry you and your wife are going through this but there are many here going through this as well.
John0 -
Your wife has primary tripleJohn_32 said:If I have understood your
If I have understood your wife's condition correctly, I think it would be useful to focus on the statistics pertaining to lung cancer, or wherever her most serious recurrence appeared, rather than focusing on triple negative breast cancer statistics. The TNBC stats are helpful to know in terms getting through those first 3-5 years without a recurrence, but your wife has already had a recurrence and is now Stage 4. My wife didn't make it through that 3-5 year window unscathed either (she was diagnosed early 2009 with TNBC and seemed to be doing well until she began having seizures this past April, resulting in a diagnosis of brain metastasis. So I don't look at the breast cancer stats anymore--we are way beyond that now--I look at the brain cancer stats, and believe me they are grim. I did enough research to figure out what the general consensus was, so the Internet can be useful if you actually invest enough time to make sure you are not just getting one or two fringe opinions or articles. We have not even made it to our second wedding anniversary yet, and I am very concerned that we possibly never will. Sorry you and your wife are going through this but there are many here going through this as well.
John
Your wife has primary triple neg breast cancer that metatasized to her brain and the treatments are geared for the primary cancer of TNBC even as it resides in brain now. the stats are grouped by brain cancer (about 120 types of brain tumors) and their associated dx and treatment. Then there is brain metastasis from another location in the body which is primary source as identified in pathology report. The cancers, when advanced, which have higher rates of met to brain are breast, colon, lung, testicular, and kidney. Treatments are different for brain cancer and brain metastasis from primary breast. I wish your wife the very best in her recovery.0 -
Obviously I am looking atHeartofSoul said:Your wife has primary triple
Your wife has primary triple neg breast cancer that metatasized to her brain and the treatments are geared for the primary cancer of TNBC even as it resides in brain now. the stats are grouped by brain cancer (about 120 types of brain tumors) and their associated dx and treatment. Then there is brain metastasis from another location in the body which is primary source as identified in pathology report. The cancers, when advanced, which have higher rates of met to brain are breast, colon, lung, testicular, and kidney. Treatments are different for brain cancer and brain metastasis from primary breast. I wish your wife the very best in her recovery.
Obviously I am looking at brain metastasis from breast cancer statistics (and there doesn't appear to be much of a difference in the survival rate, i.e., 4-6 months on average, between brain metastasis from TNBC as opposed to other breast cancers, which is horrifying). I am just saying that, likewise, he may find it more useful to focus on statistics/studies of lung metastasis from breast cancer, for example, instead of just reading up on breast cancer. Once it has migrated out of the breast, it isn't just breast cancer anymore.0 -
John,John_32 said:Obviously I am looking at
Obviously I am looking at brain metastasis from breast cancer statistics (and there doesn't appear to be much of a difference in the survival rate, i.e., 4-6 months on average, between brain metastasis from TNBC as opposed to other breast cancers, which is horrifying). I am just saying that, likewise, he may find it more useful to focus on statistics/studies of lung metastasis from breast cancer, for example, instead of just reading up on breast cancer. Once it has migrated out of the breast, it isn't just breast cancer anymore.
I know a few women with TN brain mets who have made it well past the 4-6 month mark. Have you or your wife been on www.youngsurvival.org? There are some young women on there in the same situation as your wife. One woman I can think of has had TN brain mets for over a year and is doing well. My best to both of you.
Mimi0 -
John, Strength and Courage for both you and yourmimivac said:John,
I know a few women with TN brain mets who have made it well past the 4-6 month mark. Have you or your wife been on www.youngsurvival.org? There are some young women on there in the same situation as your wife. One woman I can think of has had TN brain mets for over a year and is doing well. My best to both of you.
Mimi
lovely wife. I am so very sorry at the health situation your young wife is in. All I can offer is prayer and support.
Vicki Sam0
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