As we all know this is not where we all wanted to be at our ages. But here we are navigating around MBC and supporting each other.
We lean on each other for input as this disease is a crazy one. I would suppose any hormone base ones are.
I would like you to be bit a bit gentler in discussing your areas of tumors. I so often see.."thankfully the tumors are only in my bones" "thankfully cancer is not in the liver or lungs" like you will die if it does.
Well...mine is. It's in my liver and I have not been told it has stabilized yet.
Maybe this is a trigger to me like "well I just got it in my bones" phew dodged THAT bullet.
Just to let you know and feel free to shout it out, there are people her who had it in their vitals and are now NED. Some large tumors in these areas and now tumors are shrinking.
So please don't kill us yet, or figure your done for if it travels to vitals. Trust the science and mostly..be kind as this isn't fun for any of us. We all struggle with the fear, more than others.
Thanks ❤🙏
Deb
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Debbigbang
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First, thank you for highlighting the fact that folks with soft organ mets can and often do fare very well! I’ve been really encouraged by some of the very positive outcomes on this site!
I’m also glad you brought up your sensitivity around this -- which I'm sure is shared by others…
I have often struggled a bit, in general, with the question of sensitivity in my posts. So your comment got me thinking, which is a slow and often painful process..
I really don’t know where to draw the line between, say, acknowledging something positive for oneself vs. possibly being insensitive to folks who don’t share that particular positive event or factor…
I guess your point is similar to what those of us with bone mets might feel about folks being grateful that they have NEAD? As someone with “bone only”, I’m encouraged by the fact that lots of folks w/ bone-only can do well for a very long time but, all other things being equal, is it better to be NEAD? Yes, for sure…(p.s. all other things are *never* equal… )
We could look at this a hundred different ways….First line vs. 5th? ER+ vs. TN? Recurrent vs. de novo? Even stable vs. not? Etc, etc, etc… Gosh, when we say “It's great there are so many tools in the toolkit!”….this not true for a lot of people…might a grateful/relieved comment re: this be hurtful to them, e.g. folks w/ TN (like my sis, who takes no treatment, none are available to her)? Could be…
We’re each a mix of traits and current (and changing) states, some positive, some not as much…
I realize that none of this is exactly what you described, but is it kind of the same thing?
Again, I truly appreciate your comment and disclosure, and I agree re: the wording you use in the example being insensitive…
But I’m glad every time my scan shows stable! I do feel like I’ve dodged a bullet when that happens. One that will eventually come back to find me, of course! But I know that likely the same day I got good news, someone else probably got not-such-good news… Is it insensitive for me to highlight my good news/state, since others don’t all share that? (Although they likely have other things working in their favor that I don’t? )
I really don’t know what the right answer is…And clearly I’ve over described my thinking. I read your post in the morning and sort of chewed on it throughout the day…I was kind of hoping someone else would reply first (! ), because I’m *still* thinking!
Thank you for bringing up an important and thought-provoking topic..
V well said Lynn. I guess we have the same problem in this site as we do in our lives, hard to express/celebrate/ angst our feelings without upsetting someone else. I keep alone to myself IRL and I guess, her too. Any way, kia kaha wahine toa (have strength strong women) ♡
I think it is more from the person reading it how they decipher someone's comments. I never once was upset if someone was happy that it did not spread to an organ that I have breast cancer in. People should post if they feel relieved that it has not spread somewhere where one of us may have cancer.
We should be able to express whatever one is feeling. It is too constrictive if one has to worry about what someone else may think about their post (without being obviously mean-spirited). That is just my opinion.
I'm pretty new to this group but I've been a member of another breast cancer support message board for years . I appreciate your post and do understand your sharing the need for sensitivity in how we discuss our situations. We all have stage IV breast cancer but there are so many variables within Stage IV . I appreciate all on here that share information , fears, success and also progression, frustration and new treatment options.
You both hit on important truths that echo things I have been thinking about vis a vis this board. It's hard to know what to share and what not to. What is informative and inspiring for one person might be distressing for another... For example, I find tribute posts for members who have died very upsetting so tend to close my eyes and keep scrolling. I know that sounds horrible and selfish, but I'm just not ready to think about death yet.
I am sure for others, positive updates are equally as triggering-- especially if they are not in a good place.
Dealing with a serious--ok, let's shed the euphemism-- terminal disease is tough. A support group in the form of an online, anonymous message board can be simultaneously a lifeline and triggering. There is no body language to read, no eye contact to be made, so it's hard to read the virtual room. I decided early on that it is OK to protect my feelings and set boundaries for what I would and wouldn't read on any given day. Each of us has to take care of ourself first.
At the same time, I learn so much here and feel like I "know" and genuinely care for many of you. Given that I am stupidly private about my situation in my "real" life, it is nice to share experiences with others who understand. So that is why I stay--even though I often think about stepping away.
In the meantime, you're absolutely on to something that we have to be mindful of others when we write, and choose our words with care. Positive news is always welcome, but couching it terms of "I am lucky that..." may not be the most sensitive turn of phrase.
At the risk of being controversial, I find expressions like "I am blessed" or even "I am grateful that..." problematic. Not just here, but in the rest of my life too. To use a hypothetical example, if I say I am "blessed" to be bone only, (which I'm not anymore as it happens) what does that imply about those who are in a different place? Are they "not blessed?" Does that mean they're less worthy or valid?
For me, one of the hardest things is to balance optimism and hope with the less optimistic and hopeful aspects of being a cancer patient. In many ways this board is a place where both aspects do manage to co-exist even if it gets messy sometimes.
But we need to be very mindful of others' feelings... I hope this makes sense...
I found your post most interesting to read. I guess because I empathised with it so much. It is difficult to find the balance - I want both experience and fact-based information and sometimes it's hard to read when this does not give you what you really want to hear.
My bug bear is also the use of language - the "I am blessed" thing that you pointed out (clearly I have not been blessed) but also, more in the outside word, the use of the term "battle" to describe our everyday living with and dealing with cancer. I am not "battling" cancer, I will not lose the "battle" against cancer. That makes it sound as if it's our fault that we do not try hard enough. Well, I'm trying as hard as possible and it still isn"t enough.
Instead I choose to live in accordance with this quote: "When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live."
Your entire post is interesting, but the part about "lucky" caught my attention (and will likely make me late for my flight this morning! :).
I don't disagree with what you're saying, but it leaves me in a quandary...
I had landed on "lucky" to describe myself here...sometimes saying plainly "dumb luck".
I thought I was being sensitive b/c I *do* so many things that others can't or will find difficult....exercising (sometimes...), fasting, etc., etc. So I consciously did not want to "shame" people who don't do these things, perhaps planting a seed that "If only you would do these things, you'd be doing better...". Very likely untrue...so I landed on "luck" to say "At the end of the day, it's likely out of our control...". So don't beat yourself up?
I saw this as different from "blessed", which I wouldn't use anyway (I happen not to believe in blessings..), but "blessed", to me, conveys the belief that some deity has *chosen* someone for a better outcome than others. I really hate this term, especially when it is used for survivors of some catastrophic event. Were the people who, say, perished, de-selected? Awful sentiment...
And concur that "lucky" is probably the best word to use as it embodies the randomness of it all. I firmly believe it is important to do what I can to help my hard working body stay strong. But my control only extends so far--the rest is random. I always think of how you say "can't hurt/might hep" as the litmus test.
And I say the bit about luck vs blessings as a practicing Christian! In fact, I would lose my faith if I thought God blessed some and not others just "because". If only things were that simple!
Sure...I was "bone only" for 2.5 years. Then it spread to little spots in my liver. These are now stable on Xeloda. Bone can spread anywhere really. Liver is common, as are lungs. But there are lots of treatments available. Hope you're doing well.
Thank you. I’ve been 1 1/2 year with Mets to c2- c7. Neck. Been stable last scans. Ibrance/ exemestane/xgevia. So glad your stable. We never know but I live life and trust God. Do you take hormone pill? Am on a chem break to raise my wbc count. I hope I get 2 1/2 years on current but I know they can stop working.
Hi Deb,The timing of your message couldn’t have been better. I’ve got Mets to numerous bones and the liver and my last line of treatment hasn’t worked. My tumour markers are through the roof and I was feeling panicky.
Thank you for this post. I was diagnosed in August 2021 and even after chemo I still have all the tumours I started with... numerous sites in the skeleton and soft tissue also. The only positive thing that happened is one of the tumours in my liver got a bit smaller. Apparently it is good that all the others didn't get bigger -- I am "stable". People around me think I am cured!!! Ha. I am wrestling with the decision as to whether to go back to work or not. I need to find out how much longer I might expect to live *given my particular circumstances*. I dread the scan when I am no longer stable. Who knows, maybe it is the next one in two weeks...
Having said that, I am delighted to read all the positive stories on here, they do give hope. No-one should feel guilty for celebrating their own joy.
Well said. I wish you all the best for your up coming scan.Keeping hopeful and positive is a constant struggle in itself…but they can help us thrive both mentally and physically. I have a distant “Friend” who I occasionally bump into when out and about…who always looks so surprised to see me still alive…and looks at me as if she’s seen a ghost?? I have to laugh at her reaction…but it illustrates how out of touch most people are with how to react…or what we are going through.
Ok so I am going to try to answer this as best I can and truly do not mean to offend anyone. I'm not an eloquent speaker and an even worse speller, and never was an accomplished ( correct English) when speaking or writing. Having admitted the above I find it very hard to reply as what I want to say has to be said in a way that includes my limited vocabulary , words I can spell and hoping that the way I'm writing it is read the way I'm thinking it. I read many posts on here that are so eloquently said and wish I had that gift!!! BUT I don't!!!! People speak and write how they can . I want people on this site to be honest and open about what they are feeling, how they are copping with items,what they are going through, and what treatments have been suggested. I'm afraid that if we start trying to control how people say things that we won't get true feelings . I think people in general need to stop being so sensitive to every word uttered by others!What's the old saying( sticks and stones may break my bones but names will never hurt me) . I think society on a whole needs to go back and teach people this philosophy. Read what you want to read ignore what you don't like . There are many things posted on this site that I think are not correct so I just don't follow that advice! I feel this is a great site for information but still feel any info you receive here should be investigated by yourself before following it and should be cleared by your doctor. My point is I don't feel we should try to control what people say or how they say it as I feel this will limit those who respond and dilute the info that is given . Just remember this goes both ways . If you respond and give your opinion that if someone disagrees they can respond in like. If you don't like there response ignore it .
Great response Justme153.. The purpose of a Forum is to inform.. Whether good or bad. It's impossible to please all and in the end everyone misses out if people dont post and comment. It reminds me of a the quote"The only person who doesnt step on others toes are standing still"..So commenting may offend someone then being on the forum kinda defeats the purpose. I dont see an issue celebrating small victories its good for ones morale. This also reminds me of the Current state of Society.. Things must be sugar coated for people or they run to their safe spaces ect.. This whole MBC scenario for lack of a better word is "Crappy" but everyone on here is trying their best with the cards dealt. Enjoy the weekend and hopefully The Easter Bunny finds it way to you all!🐰🐇
I don't believe I asked for any "sugar coating" . Maybe you didn't read what I put out there. I am asking to be gentle, kind. I think people can leave out the "thank God tumos are not in my vitals" nothing sugar coating about that.
That is just being gentle and kind as we who HAVE this disease navigates the rest our lives. Tumors move around the body and the drugs are like the wack a mole game.
Not asking people to censor their journey. My point was simple..be kind. Know your audience.
Wasnt refering to you with the sugar coating I said Society in general. Its tough to say things in general without someone taking offense. I get where you are coming from and yes be Gentle and Kind and definitely know your audience. Sorry if you felt singled out!❤😊
That is the purpose of this board for women to be able to post how they feel. They (I am assuming) have problems discussing it with friends or family bc they do not understand. So this is a forum board for women to be able to post how they are feeling.
We cannot interpret how someone else will read our posts. I mean we cannot worry about how we post something and worry that one person may read something else into it. I never once read any post that made me feel the person should have commented differently. This is the place where they should be able to say I feel grateful...., etc.
Thanks for bringing this up. I’ve actually gone back and changed my initial profile introduction ….as I had mentioned something along the lines of “luckily being only in my bones”…. And I can fully see how that can make some people with organ mets feel miffed! In my defence this is how my oncologist presented it to me….not that there really is much positivity in having MBC…but at that time having done extensive scans, probes and blood tests to check the extent of mets…she needed to have some way of packaging it for me …and I didn’t mentally edit enough before posting.
I’m sorry if I upset people…that was never my intention and I will be more careful in future….and personally I would not mind if someone actually told me as a comment attached to a specific post…..as I would then change it asap.
Unfortunately/fortunately we can only ever fully understand a situation from our own perspective…..good communication is vital to over come such circumstances….but it is also very hard to draw a line as to what actually is too personal…or unsharable.
For example routinely many post prayers and bible emojis without ever considering the faith, or lack of it, of the receiver. Of course good intentions are meant here….but as an atheist myself I take the sentiment as being well wishing….and continue life as a non believer.
This I’m only mentioning as an illustration of our diversity ….not because I want or expect any changes…so please all feel free to prayer post away 😀
Best wishes to all, regardless of what you believe or not…and where ever you have the misfortune to have MBC !
Please do not take any offence in this post …none was meant.
I certainly appreciate all the thought you put in the post and acknowledge that you are upset. I personally read what I want and ignore things that bother me. I love the uplifting stories and hearing people doing well even if I am not where they are at in their treatment.Conversely, I don’t mind hearing someone struggle because we are here to support each other and lift them up. As people we are all so different and never know what will or will not offend someone. We are connected by a disease that affects all of our lives in different ways and just need to acknowledge that and move forward without looking into things deeper. I have been here a short time but have found this site to be very helpful. I had some issues and many of the ladies had great advice. I appreciate your post because you reached out to honestly share your feelings, which is fine, I think that’s what we all are doing as well.
I don’t believe anyone here has intentionally tried to rub anything in anyones face. We are all just looking for HOPE and Support.
This is an interesting topic to me because I, too have been triggered by the “lucky it’s only in my bones” comments. I try to look at it philosophically, however. This issue we are dealing with regarding how to discuss and share info about our own experiences with MBC is present in all of our relationships with others in all areas of living. Do I find it triggering when folks write they dodged a bullet since they only have mets in bones? Yes, because I have mets in liver. Do I find it triggering when people talk about how much they love having their grandchildren close to them? Yes, because mine have moved across the globe. Do I flinch when people are religious in their responses? Yes, because I see organized religions have wrecked havoc for the “other” for centuries plus I don’t subscribe to the idea of a single all-knowing anthropomorphic god. So I have tried my best to follow my Dad’s advice to take what resonates and helps, leave the rest behind. My choice. We rejoice when our best friend gets married even though we have had our own heart broken. Same thing here.: We rejoice when others have successful treatment, while our disease remains untamed. I agree with the poster who said we best be careful about policing how folks say things (we are all trying our best on most days) and pay more attention to our own inner reactions. At the same time I have been on my own mission to be more sensitive in my word choices. It’s a growth experience the entire world is awakening to these past few years. Should I have used the word “awakening”? LOLLL. See? I make myself crazy sometimes. Anyway, thank you for your post. It is a relevant topic that I am grateful you brought up because it helps me look deeper into my own actions and reactions. I am very grateful to you and all the other sisters on this site who share and ask the hard questions we find it difficult to share with the uninitiated. My best to you all.
Your post is on the spot and so well put! For those that are bone only, or this only, or that only, we are all on this same road.....really...... This is a disease that progresses, and changes, it grows into "other" places than where it first spread. We can go from ER+ PR+ to triple negative, we can do great on a medication and then the cancer suddenly changes and is not responsive to the medication......Eventually we are all in a place that we can be in another person's shoes in an instant. Cheering on those who are doing well and supporting those who are seeing turns, twists and roadblocks in their journey is difficult to manage in posts and in words, but it's so helpful to always be aware of and know there is a universe of things going on with each of us at any one time. I really appreciate your insight and thoughtfulness in your post, thank you!
I just want to add that when I was bone only, and oligometastatic, my oncologist told me that this condition isn’t better than visceral disease, because bone mets can lead to marrow problems, fractures and skeletal collapse. I always think about these words now that my bone met is no more active, but two spots were found in my liver. And again oligometastatic, because one of the spots disappeared with Xeloda. We’re all different, Ribociclib and letrozole worked only for 15 months for me, but the number of organs and spots involved are again minimal. Though, I’m on second line of treatment in two years, because in Italy treatments are paid by public sanitary system, but protocols are strict. You can’t switch from Ribociclib and letrozole to Ribociclib and faslodex for example, so I was turned to Xeloda and when it won’t work anymore I I won’t be probably allowed to go back to target or hormonal therapies since they already failed once. It’s difficult to say what our life expectancy will be, because it depends on many factors, which can be internal (our body) and external (availability of cures). Hugs 🤗
Thank you for your post. If I can avoid "triggering" anxiety in anyone else by perhaps wording my posts a little differently, then I'm all in. I learned something.
When l got diagnosed l was sure l would be dead in 6 months. Besides having it in almost all of my spine and throughout the skeletal system l had a pericardial (heart) and pleural ( lungs) effusion, multiple lung nodules, multiple lymph nodes. Treatment took care of the effusion! And stabilized everything else.
I wish you well.
Hopefully, we will all think about how others hear what we are saying.
This is an association no one wants to belong to at any age, type, or extent of disease!
Thank you, everyone for being here and sharing your support, information and experience (all the feelings are OK here).
I am a bit puzzled by your comment. I had it in my lungs and spine (the spine caused pain, but now I take medication for that) and my last scan three months ago (I am due for another one in May), I was told it was in my liver. I am going on 5+ years with MBC.
I never felt that way when reading other people's comments about where it spread or did not spread. I think for that specific person commenting they may think that having it in another area may be more painful. I was not overly upset (not happy though) that it is now in my liver. For me, as long as I do not feel pain, I am good.
Hey and here is another thought ! That comment was made 17 days ago, maybe at this point you could read and scroll by...just a thought.
I had a thought I made a comment, you could easily slide by as well !!!
It wasn't a comment for real discussion to be honest. It was a feeling I had and wanted to share as we all have different types. At that point, it was when making comments be kind to others who are as "lucky" to have just bone cancer. That was IT, share your treatment, share your joy, share treatments..share it all. Just be gentle and kind..simple really, no need for discussion.
Rebuttals don't have to mean or judgy either. I kinda get why some people leave this group !!!!
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Is it insensitive for me to highlight my good news/state, since others don’t all share that? (Although they likely have other things working in their favor that I don’t? )
Just want to run away sometimes
My thought for today
Just started Piqray - now w/ rash
Just curious
Is it just me?
