Welcoming New Members to Lower Stage Threads
How do you ladies feel about welcoming new members, especially those who've not been diagnosed but are scared out of their minds and just trying to cope? My question stems from wondering if us Stage IV metsters could frighten them out of their minds by saying a quick hello, welcome, stay off google doc etc...
I was about to welcome a 24 year old who's worried about a lump, she's got four kids, scared out of her mind and I was about to say any number of platitudes, sincere but platitude nonetheless.
Thoughts? I hate leaving people in a frantic state of mind and I'm not implying anything I have to say will calm them, but I don't want to scare them into next week with my Stage IV dx.
Thanks
Amy
Comments
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I sometimes post when new members have been diagnosed at a lower stage. Not when they are still waiting and might get happy results back.
I think because I have never had a lower stage diagnosis, that I might not be the best person to respond to these posts. I wouldn't know how to advise them about the next steps in their treatment and recovery. But then, sometimes I see that someone is truly distressed and there hasn't been a response yet after a couple of hours, and I want to say something simple, like "you are not alone."
That's a good question, Amy.
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I post sometimes on the Hormonal Treatments board. Whenever I do, I inevitably get comments or private messages asking what I did/didn't do to "get" a stage IV diagnosis. While that's frustrating to me, I think it's just someone at a lower stage wanting to make sure they do everything "right" with their treatments so they don't progress. So I'm not sure if our comments on the lower stage threads would be helpful or not...
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I don't feel comfortable responding to lower stages because I was dx'd stage IV right out of the gate and have no idea what they will go through in terms of tx having not experienced it. And I don't want to scare them with my own dx.
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I have often responded to those new to these threads what ever their stage or just worried. Of all the posts I've done over the years, there have been very few who have PM'd me regarding my own dx. While their inquiries as to my state of health can feel like silly questions, we must always remember they are driven by fear..........the same fear we have all experienced and it is that fear that needs to be soothed.
The decision to respond or not is entirely a personal one..........for those on the other end, I'm sure, appreciate anything that recognises their fear and tries to alleviate it a little.........it lets them know that they are not alone.
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It never occurred to me to do this. I spend my time on this site exclusively in the Stage IV forum. While I sympathize with those who have been diagnosed with breast cancer at any stage, I don't believe I can reassure/comfort those who are at a lower stage nearly as well as a fellow lower-stage forum member could.
Tina
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I do journey outside of this forum and have adopted a very reassuring persona about living with mets...and also approaching death and being on hospice.
It's sometimes an emotional stretch for me to show strength, but I remember that being with fear, doubt and weakness is part of living with cancer, no matter the stage, seriousness or situation.
And I'm perfectly fine with not responding to anxious requests on this or other forums when I'm emotionally just not up to it.
I figure at this stage of life, it's more about my process than the other person's.
It's just that I have access to an enormous amount of information and experience that I may share with others when relevant.
And I'm very, very grateful for the Ask Questions Here topic at the top of this forum.
Am interested in how others find their way around this.
warmest healing regards, Stephanie
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I was at Stage 0 (DCIS) in 2007. After 5 years was told all was okay. After 5 years then went to yearly check ups and mamo's, then May 2016 was told Stage IV IDC with mets HER2+. What ???? I am still in shock and I wish someone had told me not to goggle because to late I have. I found this site and have been lurking and learning.
Kim
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adc,
Welcome. I am sorry that you have reason to join the stage IV boards, but, as you probably already know, there is a lot you can learn from others on these boards. We all provide support and information to one another, and I am glad you have found us. If you update your profile with more information about your diagnosis and treatment and make the information public it will help others with similar dx and/or tx to connect with and reach out to you. Since I don't yet know the location of your mets, I won't recommend any particular thread, but you have probably already found some that could be helpful to you. In addition to mets-specific threads, there are some dedicated to various treatments. Of course, you can always start a new discussion if you have questions.
Oh, googling? Horrible! So much misleading information. Many of us who are stage IV are leading fairly normal lives and doing lots of living. I know the diagnosis is a shock and it takes time to adjust and move forward. Things will get better.
(((Hugs))) from, Lynne
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I am, in a nutshell, every early stage breast cancer patient's worst nightmare. Never would occur to me to welcome them to these boards. They would take one look at my stats and be full of fear. Even though I rarely venture "over there" anymore, I still get PM's trying to find out what I did "wrong" to allow a Grade 1, ER+ to progress. If this weren't so serious, I would tell them that I ate brussels sprouts, but my dark sense of humor in the face of a terminal disease in NOT what these people can handle.
*susan*
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I was stage IV de novo, so I would have nothing to offer to a lower stage person. I have no experience to share. Susan - I do find it frightening to learn that people with bc are asking what you did wrong. I mean, do they believe they did something wrong to cause their early stage bc? If anyone knew of some way to prevent people from being where we are today, it would be shouted from every mountaintop, headlined in every newscast, posted on every Facebook page, and tweeted to every living person on earth. Of course, I think you might be on the right track since I did eat brussels sprounts before I was diagnosed.
Lynne
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I tend to stay away from those threads, mainly because it's a time issue and I was diagnosed stage IV from the beginning. My treatment is so specific for Stage IV HER2+ BC that I don't feel that any advice I have would be appropriate. There are better resources for them out there.
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There are no rules with stage IV cancer, except for these 2.
Don't google statistics. There is a lot of interesting and positive information about treatments on the web and it is good to be informed. But statistics are useless as far as decision making and living your life. And, on top of that, the available statistics are not accurate or meaningful.
Don't talk about your cancer (beyond platitudes) with anyone who is not also stage IV. They have no context to grasp what you are talking about. I don't say anything, or I just say "I'm doing GREAT!!" to anyone who is not stage IV. Hang out here and get your support here.
>Z<
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Amy, you have brought up a topic that I think about quite a bit. I peruse the active threads in addition to my favorites that are mostly in the stage iv forum. I am always aware that my "stats" could frighten or discourage someone. So as a rule, if the person is needing general support, I leave it alone and sure enough, someone who is not stage iv comes along to help. But there are other cases where I feel the person could benefit from some specialized knowledge that I have, from being further ahead on the learning curve, and I go ahead and post. I have had early stage people tell me I was helpful to them. In some cases I think it may actually encourage someone to learn that I am alive and kicking in spite of the worst fear coming true. So I try to get a sense of the particular person's needs and ask myself whether I am the right one to help.
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I stick strictly to the stage 4 forums. I feel like this is the place to let out all of your fears/ hopes/ questions, and people get it. I occasionally read the other threads but don't feel like I have anything to offer.
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@50sgirl, Lynne, When it comes right down to it, these women are all scared and completely and totally self-absorbed. Their messages show absolutely no compassion for me. It is, all about them. Thank goodness I haven't had one of those in a few years now. These boards have grown so much that I don't think each post is as visible, and I am posting far less than I once did.
Brussels sprouts are the one vegetable that I simply can't stand!
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Thank you for sharing your thoughts, concerns and feelings. I'm conflicted which is the purpose of this thread. I was de novo as well but don't want to scare the life out of early stagers. I sincerely want to help by welcoming, try to calm their fears but how can I when I'm, by outward appearances, in the worst of all situations.
Sometimes I feel my welcome or acknowledgement of my disease is contagious and merely writing to these ladies a threat. Mind you no one has said such a thing but I do worry. Anyway, we are like-minded in our willingness to welcome and attempt to calm, but there is no pat answer.
Thank you!
Amy
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I also tend to stay only in the Stage 4 threads, but more for myself than out of concern from other's fearing a similar diagnosis down the line. As a younger woman, diagnosed Stage 4 out of the gate, as well as a teenager cancer survivor, I feel like it is not good for me to read about other people's fear and dread over their diagnosis, which they are totally entitled to. But I feel like I would lash out too easily to somebody complaining over short term chemotherapy, its side effects, how it will impact their fertility, how are they ever going to get their normal back, etc... I have a lot of anger that I will always be in treatment, never be able to have children of my own, and cancer will ALWAYS be my normal. If I visit a different area, like the one specifically for younger BC patients, I'm scared that my feelings and anomosity would be misdirected towards them.
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Someone who is stage IV denovo would have no concept of what a lower grade feels like! And platitudes do no one any good so why bother? Let them deal with their peers who are going through the same fears. And if they do respond or PM you why the heck should they be compassionate? You put yourself into their situation and you don't belong there. Just as much as they don't belong here. It goes both ways.
This Forum is here for when they need it. Don't go putting yourself in front of them and then being surprised by questions!
I hate to be so blunt but I was stage I once and certainly didn't need to hear platitudes! I have many good stage IV friends here that helped during the early years and now I am in the same boat. They were constructive and receptive with good information. I met them on different threads including some game ones.
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Amy, I don't hold back on posting to someone who I think clearly has misinformation or needs to get a second opinion, etc. If it's just a general "I'm new and scared" post, I tend to bookmark those and only go back when I see the poster hasn't yet been welcomed after several hours by others. In that case, I aim my welcome remarks maybe at helping them navigate BCO -- like directing them to a chemo thread or a TNBC thread, etc. -- mostly as a way to bump the thread back up in actives.
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I almost always stay to the stage IV boards and, like Becs, it's really about my own sanity. I have a hard time reading complaints about Tamoxifen causing wrinkles or feeling like stage 0 doesn't get enough respect for being "real" cancer or the boutique shopping attitude about getting the "right" person to design your new breasts--I know it's petty of me and I also completely understand that these are valid feelings and the appropriate boards are a perfectly appropriate and correct place to share them, it's just that it isn't good for my sanity so I try not to do that to myself.
I was stage III to start with, so I do understand that side of it. And honestly, one of the most powerful posts I read on the stage iii boards was EIEIO from stage iv posting talking about the side effects of AI's vs. what it's really like to not take them and be terminal. It was a good post and well received, too, but maybe that's partly because by the time you're stage iii you aren't really that surprised that there's a stage iv and you probably know your odds of ending up there.
But I've been stage iv for a couple years now and my concerns, my treatments, my life are very different now and reading here fits me better. I don't think it's wrong to post on other boards if you have something to add to the discussion but I guess I'm not up to being that kind of selfless right now.
(another random thought--I get what people are saying about not ruining their mood by showing up all stage iv like a witch at a wedding, but I wonder if there would be more awareness that stage iv exists even while doing all the right things (even Brussels sprouts, which I love and am stage iv anyway, darn it!) and what being stage iv is about if we did make a point show up more in the larger breast cancer world?)
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Roses makes a good point. People should be aware that Stage IV exists and that they can become it themselves. I come from the perspective of having brain mets, which untreated, can cause seizures, strokes and brain bleeds. And I've noticed oncs don't like to talk about it because they're not sure how to treat it. So people remain uninformed and they remain at risk for serious implications.
When I venture off this board, it's often to the posts where people are worrying about symptoms. When it comes to brain mets symptoms I'm often the bearer of bad news. But I've also thought I had mets in places I didn't have mets in so I offer those words of comfort when someone is freaking out about their bones or liver.
As far as the bitterness...yeah I get annoyed by the DCIS my cancer isn't taken seriously people. But 30% of those Stage I-III are future Stage IV. We just don't know who yet.
PS: If I ever get cleared for recon, I am totally boutique shopping for my new breasts. After everything I've been through, I've earned myself s knockout new pair!!
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Trust me. Lower stages lurk on stage IV threads. I did when I met my friends but wouldn't often post unless it was one of my buds. They know we're here.
And Roses, that is not petty of you at all! That's kinda my point. You are self-aware enough that you have nothing to add because you just can't care and that's not a bad thing.
There are a number of threads about the dumbest things people have said to a breast cancer patient. Shallow platitudes are one of them. "Oh just stay positive and exercise and sniff unicorn farts all day and you'll be fine." Who needs that shit?????
I never say "hi, how are you?" to anyone!!! Why not?? I don't care. And that's okay. We all have enough crap to worry about without taking on someone else's story. Do I ever say nice stuff? Of course! I celebrate someone's NED or benign result but only if I can be sincere. This is a serious forum and not for the weak-at-heart.
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"Don't frighten the newbies" has been around for over 20 years. This mentality has not done us any favours, especially those who have gone on before us. For the 20 years I've been around, Stage 4 has been shoved in the closet. Look at research funds, the bulk still go to "awareness". It's only through the hard work of organizations like Living Beyond Breast Cancer and Metavivor and some amazing women that our message is getting out there. We NEED the support of lower stages. Take a look at the Stage 1 tab. There's a long 30% thread. It's time to move out of the dark ages, it's bad enough we have a terminal disease, why should we have to fight and beg for research funding? Instead of the ridiculous pink fun it's time to get serious and that means asking lower stages to help us. ~ 36% - 40% of those lower stages will be us one day.
October is close. Across Canada there are Mets Groups walking. Across the US there are active mets groups, there's an MBC "Stampede" in Washington DC on October 13th. There will be metsters holding and attending events across the US. Why walk or work with organizations who don't contribute enough to research? They are beginning to listen. We need to put more pressure on them. We need more people. We need a presence. If you aren't well enough to participate, ask family and friends. It isn't just about the donations, it's putting a spotlight on MBC. Start posting info in lower stages. If we don't ask for their help, encourage them to fight through their fear of MBC, we will continue to move at a snails pace. Do you think it's okay the next hormonal drug probably won't be out until the end of next year? We've had to overcome our own fears, aren't we selling the lower stages short in thinking they can't?
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Great post She and good timing with Puke-tober just around the corner. Thanks for sharing great points and information.
Amy
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Starting a new thread in the lower stages threads about advocacy for stage IV is a lot different from spewing platitudes!
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So I am a lower stage person and barging in on your conversation here as I want to share input from someone like me. I LOVE being greeted by anyone. It makes me feel welcome. Building connections with people can be built on so much more that what is my stage. It could be a love of horses, reading, exercise, research, math... friendships are built on many things, stage be damned.
I also personally someone who so appreciates input and guidance of someone who has been there. If they feel like they want to share and give that input. It doesn't make me worried or scared, it only provides good knowledge with which I can integrate into my own decision making and hopefully make better and more complete decisions.
When I was diagnosed, a wife of one of my husbands friends (stage 4, mets to bones) called me up- she started lower stage (stage 1). She offered to give me guidance. Wanted to share her input with several doctors here locally and guide me on where the best treatment was (Roswell).. she offered the input, advice and stated she was there if I wanted to chat. We're now good friends. We enjoy each others company and its more than about our different levels of cancer. I am so glad she reached out to me!
So hoping this perspective helps a bit. A welcoming voice /response is to me always good and can lead to much more...
Thanks for letting me chime in.
Bevin
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Bevin, I'm happy you chimed in, and am especially happy to hear you don't feel a Stage IV metser is going to scare you into oblivion. My nature is one of welcoming, reassurance, peace-maker and help if I have something to offer. I'm a typical first-born and of seven children. There's only nine years age difference between me and the youngest so I've been on auto-pilot most of my life.
This is where I come from when welcoming and reaching out to women at any stage of their diagnosis, but especially the very brand new members.
Amy
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Stage 1ers come and lurk on stage 4 boards. I'm coming out of the shadows to prove me point.
That said, There is a big difference between the idea that 30% of stage 1s or 30% of early stage (up to Stage 3A). That huge thread is fighting a misconception that 30% of stage 1s go on to stage 4, which is wrong.That stated, I appreciate knowing that even if I was Stage 4 De Novo, people can live years as a stage 4. That kind of knowledge is comforting to me. But I don't want to think about how 'it's a crapshoot' to who gets stage 4. That's way too heavy for someone coming on this board as a newbie.
I'm one of those who ask questions about what choices people did / didn't do as well as all their details because to me, this is crowdsourcing info... and can provide value. If I notice patterns - such as a lot of women staying stage 1 are taking melatonin, then I weigh that. If someone chose to stop taking tamoxifen or never took it initially, I weigh that as well in this 'crapshoot' idea. if someone did EVERYTHING they were told to do, I weigh that. Having this info to me is data points to plug in to find patterns. Yes, you ladies are data to me... I hope I'm data to someone as well. I don't need platitudes, I need info and data.
I hope I'm not sounding insenstive to anyone.. feelings are not something I'm good with (I probably have aspergers like my kiddos)...
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Awareness of Metastatic breast cancer [which is what we are really talking about, not Stage IV] is an issue for the general public. Yes, there isn't enough research being done. Yes, far too little of the pink money is invested in our population. Yes, mainstream media likes to ignore us and focus on those that believe that they are cured. However, this awareness is not the right introduction for people who have just been diagnosed and/or are on their way to being diagnosed. Anyone who hangs on these boards for any length of time will learn that it can happen to anyone. I just don't believe that it is a kindness to increase the anxiety of the newly diagnosed. These boards are not where awareness campaigns will do the most good.
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I do venture beyond the mets board, now mostly just on the Let's Post our Daily Exercise thread. I don't feel people fear me. But maybe because I am NED I am more like an early stager. We are all just trying to prevent a recurrence. Of course, I don't say in my signature that I am NED and that I've been NED a long time so I hope people don't get the wrong impression that it is easy for all metsers, even other people who are NED, to do what I do, I just enjoy being part of that group. As for the crapshoot, you can say I responded to exercise as well as to the treatments I've had and maybe other complementary things I've done and that is part of the crapshoot. Some people just may not be responders. Or develop resistance / stop responding at some point. And this just gets more likely as we get older, as our genetic landscape changes. We are not immortal datapoints.
I hope I haven't scared any newbies.
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