Catching Mets Early? Docs say it doesnt matter?
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:: putting condemned on the calendar ::
But, on second thought, that might need to wait. Hosting a dinner party tonight after doing 8 hours of business development coding; off to the Cape to hang with good friends; oh, and helping my Mother while she is laid up with a broken leg; hosting friends from Australia; THEN maybe I can work on being condemned.
So offensive.
*susan*
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We all clearly have a lot to learn about this disease, even those of us with it. We are all products of a society that has sold us a very particular image of wellness and female identity. I was also inundated with what could be considered insulting: being 39 at diagnosis made me a pariah and/or virgin queen for the whole universe. The comments were outrageous and shocking beyond belief and if I think about them I go absolutely ballistic.
Thank you all for sharing your stories, because we really have to train the world to understand us all better.
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I am in agreement with you Caryn. I believe that stage IV is very misunderstood. You would never be able to guess that I have liver mets (multiple) by looking at me. I have never had any symptoms so I am glad that they were discovered and treated before they could take over completely. I have some minor SEs, nothing that I can't handle though. My QOL is great despite being "condemned" to life long tx. I am still very independant and can do everything that I used to do prior to dx. I drive, I exercise, I do my own housework (although I would willingly give this up), I enjoy outings with family and friends etc.
I consider myself "lucky", perhaps, that I have responded so well to the first tx given.Yes, I know that this will change at some point, but I try not to dwell on it and just enjoy what life has to offer.
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exbrnxgrl, stormnyte, susan 02143, barsco and all the other ladies with mets who have posted… thank you. I do not have mets nor will I ever understand unless I'm in your shoes. If it's one thing being diagnosed has taught me is you can really never truly understand until it happens to you.
I do believe you all when you say that you are living quality life. I know should this ever happen to me I would want the treatment. I'm glad I did it the first time. My understanding of mets is the MD's are treating you so you can have good QOL. They don't bring out the biggest guns first like they do with early stage. They bring out the least damaging guns that will mange the disease so it doesn't progress and ideally get remission.
As far as finding mets early. I don't believe the MD's that say "it doesn't matter" mean catching when it's so out of control is the same as catching it early. I believe they are saying that catching it when you first feel or notice a symptom has no difference in catching earlier. In most cases this may be correct but not necessarily all.
*Bottom line for us early stages is be in tune with your body. If something isn't right go with your gut and have it checked out.
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Thank you, my stage IV sisters, for speaking up. And thank you to those who are trying to learn more and understand that we are not "dead (wo)men walking". One last thing I wanted to address and this fills me with sadness more than anything:
"Nobody really gains by my living more, least of all me"
I am so sorry you feel this way. My life is filled with love, laughter, family, friends and work that is important to society. I have everything to gain by living more. I hope everyone finds a fulfilling life, stage IV or not. Caryn0 -
I think we are all prone to moments of cynicism, doubt, fear and sadness. Athena is a very smart woman, she may simply be expressing how it felt to her at a particular moment. Goodness knows, I get that way ("maybe I should just give up all this testing and screening and if I die, whatever...") I don't think she meant anything negative towarda anyone. She has been so generous with me on other threads, offering feedback and advice--she's one of our team.
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Oncs are treating those of us, at least some of us, with mets more aggressively. When I was diagnosed with liver mets, I did have "the big guns" right away, in the hope of getting me NED and keeping me there.
Again, treatment varies based on age, health, etc, but I just wanted to add that assumptions we have about stage 4, about how we live and how we are being treated are often incorrect.
Laurie0 -
I agree, Laurie.
I was also given the "big guns" right away and I was Stage IV at initial dx with Liver Mets.
I also get regular scans and labs. I want to know what is going on inside my body. I have never been one to "ostrich" out. Cancer isn't going to change that.0 -
LtotheK,
Although I appreciate your comment about Athena's probable state of mind when she made that comment, I think we all need to re-read our posts before we hit submit. The comments were really insensitive and cruel to many (I don't presume to speak for all) stage IV gals. I can usually let stuff roll off my back but this hurt. It made me feel like someone whose life counted for less although I'm sure that was not the intention.
Caryn0 -
I totally understand, Caryn and I truly feel your hurt.
We don't often enough express how we really need each other (or, at least I need my friends here). I let Athena know that she has been very important to me in my treatment journey. So have you. You all are a very special family of sorts.
I apologize for anything I've ever said that comes across with a tone I don't mean. I'm sure I've done it, because I can tell you cancer has made me one crazy beatch at times!
Love to you all.
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Dear Athena,
Having had hodgkin's lenfoma and treated with the red devil along with rads 20 years ago when I was 16, I made a similar oath to myself as what you expressed in your post. So I can relate with the fact that you had no fun with your first (and hopefully last) cancer treatment. BUT as things do not work out the way we make plans, I HAD TO revise my plans when I was dx'd with my current stage4 cancer (hi stage4 sisters by the way).
I went to hospital due to severe shortness of breath, coughing and fatigue, only to find out that I not only had MBC, but also had severe pneumonia& pleural effusions, which disabled me even to walk to the dr's office. I was carried around for all scans etc in a wheelchair!
I felt so frustrated with the dx that I rejected all treatment at first, sticking firmly to my 20-year-old oath. 2 Onc Professors spent the entire afternoon explaining the process of dying with and without treatment. AND summed up saying I could probably see my 7-year old son's 10th birthday, if I accepted threapy.
QOL is being able to get free from the wheelchair after the second cycle of chemo & being able to go out for long walks by the fifth cycle;) both of which I have achieved, and thankful for that. I know I have written long, but I feel my story sort of sums up this discussion. I am glad to have given up my oath.
Dear Lago, our chemos are not milder, we have the big guns all right:)
Lol0 -
I just wanted to say how much I appreciate all of the discussion that has occurred here. Hearing everyone's different views and experiences just reiterates the fact that BC is a very individual experience no matter what stage.
I especially appreciate those who are living with Stage IV, helping to educate us about the stage that is rarely mentioned and is glossed over in the media and "pink campaigns". I'll sometimes check out a IV thread on here if the title interests me. I'm aware of the good, the bad and the ugly....But it's the many good ones that are often inspiring. One I came across recently is the one about the "bucket list". There are pictures of women skidiving, climbing mountains, floating in the water on a sunny day with the grandkids...and all with the HUGEST smiles on their faces. Happiness just oozes out of those pictures. I didn't post because it's Stage IV, but I put it as one of my favorites because it made me smile.
~ Susan
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BTW I didn't mean that they don't bring out the big guns for mets. But they usually try the smaller guns first. Granted as we know there is no one way to treat this disease because it's not just one disease so everything is up to interpretation. TYhere are plenty of women with mets that start doing hormone therapy only.
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Iago, my oncologist told me that it was his intention to treat me VERY aggressively while I was still healthy (nothing wrong with me in March 2009 but a bit of stage IV cancer
) because they would likely have to be more gentle later on. It was very narsty, but i survived because I was healthy. Still am and still NED since the fall of 2009. 
I am still doing herceptin and hormone therapy (the hormone therapy when I feel like it.) And will do until something changes, me or my cancer.
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I'm not disagreeing with my post. I'm sure you were treated agressively. Congratulations on NED.
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Kay ~ so since you have been NED for almost 3 years now (congrats!) ... just curious, how often do you have scans?...I wonder if there would come a time where they don't scan you unless there are symptoms?
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"but they usually try the smaller guns first"
This statement is just not true. You will find more & more stage 4 who are being treated aggrressively right from the start. This means not only chemo, but targeted procedures.
Laurie0 -
Athena, how dark and sad or angry a place must you be in to write such awful statements about we who live every day with Stage IV. I hope you are in a better frame of mind now.
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I remember RobinWendy said that one of her docs wondered if doing the scan that discovered her mets was opening "Pandora's Box".
Sorry if I remember that wrong.
But I think the idea is that some people with slow growing mets might be better off just walking around without treatment until symptoms present themselves....essentially delaying treatments until they are really needed.
There are women with mets on this board who are NED and feeling great....so for them earlier diagnosis was probably a good thing.
I think the totally confusing thing is we just don't know who is going to respond well to treatment and get years of good QOL and who treatment won't really help.
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I read Athena's post as her talking about HER feelings and positioning in her life at this point. I don't think she was degrading anyone else. She is normally more upbeat, but even the funniest of us get down at times. Usually I won't post if I can't be cheerful, but this thread isn't a cheerful thread, it's serious shit, so any feelings should be allowed. I feel condemned just to have breast cancer! If I don't die of one of my other medical issues, I fully expect to die of bc. I've taken blood pressure meds for over 18 years. If I stopped them, I could deteriorate pretty fast to a stroke or heart attack. Taking meds on a full time basis is a constant reminder that we have health issues. I take 13 prescription meds a day and some are AM AND PM meds!!
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Then she probably should have used the pronoun "I" instead of "you" when speaking of stage IV as being condemned.
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Technically we are all condemned, cancer or no cancer if you want to look at things that way. Life ends in death and we know life eventually ends for all of us.
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LtotheK - that's really sweet of you...Barbe, you got what I meant perfectly. It's horrible to sometimes think no one will care if you die. I know that's not true in my life. I was reacting to an unsupportive family - lots of us here have that, don't we.
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Chickadee - just came back here. I think you take these things too personally. My comment wasn't about you but about me. Exbrngl - I say this to you too. I never meant to be making any commentary about anyone else, stage IV or no. It should go without saying that we are all chiming in on a "what would you do"/"what DO you do" scenario, and that our answers are only our own experience or feelings because we can't speak for anyone else.
People around here have got to stop taking everything so personally. If someone comes here and says "mastectomy is equal to mutilation" or "I'm not treating my DCIS" don't take it so personally. That's them, you are you. Why should I care what someone else thinks about mastectomy, for example. I know what I think, and that's all that matters.
If someone comes here and says "I hate Ferragamo shoes - they are ugly" I will simply shrug my shoulders (the person has bad taste, not my problem
). If I were stage IV but with young children, then I'd define my treatment options under vastly different paradigms. If I doidn't have the comorbidities IK do, I would likely have made very treatment decisions at Stage II and also at stage IVC. Part of not taking things other people say personally is realizing that they have their variables to deal with. Someone came here the other day and said she felt mutilatled at the though of having a BMX. I am sorry for her because it must be a bad feeling and I thought she needed support and comfort. I wasn't going to say "hey, wait, I had a BMX, who are you calling mutilated."
I know it is hard for ALL of us to be here because we are both supporters AND in need of support, but we have to be careful to value others' experiences for what they are to THEM not to US. I have moments too when I take things personally in my head, but I remind myself that whoever wrote what they did doesn't know me from Adam and is likely in need of help. My feelings need to take second place and I have to be the adult - this means, either do not respond/ignore, or respond in a non self-centered way.
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Your comments were insensitive, not just to me. As I said, hope you are enjoying a better day. .
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Just got back from my club still imbued with some words of wisdom from one of the yoga instructors. The club is a very elegant, staid place, but if you just listened to this instructor's Vinyasa yoga classes you'd think there was a timed orgy going on. He pushes us so hard that no matter how socially correct we are, we need every loud breathe to keep up. Those of you familiar with power/vinyasa type yoga know how much body strength it takes.
Then, when we were all done, the instructor said, "be thankful that you are healthy enough to do this." And I took that message in like so much Ambrosia. It made me think of the post on this thread that offended some. I hate pity parties and I apologize for throwing one. I do have much to be thankful. Suffering through one of this instructor's classes is someone many people cannot do --whether it is because of advanced cancer or even something relatively innocuous like a broken ankle.
I have read countless of times on these boards and elsewhere how, when someone behaves badly, it's because they must be mentally ill. I read stage IV people saying "at least they are not mentally ill." And I don't take offense. I wouldn't want illness on anyone. Also, you learn to develop a rather gallows sense of humor when you live with stigma. Or you "dress upo" as your favorite animal and go on aboard to speak your mind while protecting your anonymity.... I also understand, when I read about people ranting over the insane, that it isn't about me but about them, and that if we come to a support board, we should have the liberty to speak our minds within certain limits.
But when thanks are to be said, we should be thankful. And so, crazy or not, I am thankful to have the liberty to use my strength. If I were stage IV with children, I'd be thankful for every breath I can take because of my children.
I'll stop here because I'm not sure I have a thesis or any way to wrap this up. I suppose the message is that we are all so unique that what is perfectly tolerable (though hard) for person A may not be so for person B and vice versa.
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Chickadee, we crossposted. I think we can resolve this by putting each other in "ignore." I reserve my right to express my feelings when they are clearly subjective and not meant at, for or against anyone else. I do wish you the best of luck, and what I say doesn't matter for you - I'm not important in your life, so please don't be offended. Godspeed, ad I will change my settings now. This need not continue.
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Athena,
I appreciate your explanation of your POV and you entitled to your feelings. The wording in your op, with respect to being condemned, doesn't say "I", it says you (As in the third person plural). Stage IV is a slippery slope to comment on if you haven't walked down that path and comments such as yours are sure to hit a nerve. I personally, would never refer to an mx as mutilation, chemo as poison or someone as insane etc., even if I felt that way so as not to hurt others feelings or make inflammatory statements. I always consider how my words effect others especially since we are all dealing with this disease. Regardless of what I think you are certainly entitled to express yourself in any way you feel is best for you.
Caryn0 -
This is ridiculous. Regardless of whether or not something said offended anyone, we are all allowed to have our own feelings and should not be judged or criticized for them. Feelings really are a summation of how you are AT THAT MOMENT. Feelings come and go, and they change depending on mood, etc, sometimes drastically changing from one end of the spectrum to the other. Feelings also often have no reason for being there--being scared can make reality seem so skewed. I know that if I had posted any of my innermost feelings when I was first diagnosed, I would have offended lots of people---I was positive I was going to die within 6 months and leave my husband with a baby to take care of. I no longer feel that way, and I have great respect for anyone who is living with cancer and going on about their life just as people who are cancer-free. BUT, that really is that person's own choice and their feelings about cancer are understandably very different than someone who is not stage IV, and definately different than someone who has not had cancer in their life at all. Life changes in a heartbeat when you are diagnosed with cancer. I'm sure it changes just as quickly when a stage IV diagnosis is given. It is hard to imagine how you might feel IF something were to happen to you, whether it be cancer or a car accident where you lose your legs, or a life-altering stroke. You really don't know what you would do or feel unless you actually lived it. I think cancer, and especially stage IV cancer, is probably the same "you don't know till it happens to you" scenario.
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Weety said:
" I think cancer, and especially stage IV cancer, is probably the same "you don't know till it happens to you" scenario."
EXACTLY!0
