Life does not end with a stage IV diagnosis (really!)
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If BCO had the “❤️“ feature like texting does, I would love each of your posts, Ex, Olma & SeeQ. Again, healthy perspectives & attitudes are going to be key as we go through this process & you ladies are crushing it
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I don’t think it makes you an oddball. I think it’s just a testament to the fact that we all deal with this differently and in a way that is true to us.
I mean , I cried .. a lot. Sometimes it still comes in waves for me. In the first two years I reached a sense of stability and okayness despite the stage 4 diagnosis. I was oligometastatic and I was doing super well. Then the shoe dropped and it was worse than ever. I’ve been angry. Angry that I was brushed off for years prior due to my age , angry that despite my persistence I ended up stage 4 at 30, angry at knowing something was up last summer and not pushing further for imaging that is more accurate for me (mri is always more specific and sensitive for me) and then having extensive Mets as a result .
I do think if I were older , I might be able to deal with this a lot differently .
I have six year old who I desperately want to stay alive for. He’s quite anxious and has been focusing on death lately. I just feel awful that the trajectory of this disease affects him and his life going forward.
It’s not fair to him to lose his mother as a child. I know the realities , but I hold on the the hope that I can make it long enough that he A) understands somewhat (that I didn’t leave him and that I tried really hard and
that he remembers me . I do get jealous of older women, especially with grandchildren, at times. It feels as though I’m being robbed of all these experiences I should get to have. I know that time and life is promised to no one , not even if you’re a good person, but sometimes being so young.. it stings. I ahead a rough childhood and fought very hard for my future, and sometimes it feels like a waste. I am grateful for so much and want to try to spend my time being present and open. I let myself feel how I’m feeling and usually try to move on.
Anyway I feel like I’m articulating this poorly but I think I’m getting my point across lol0 -
and for what it’s worth , sometimes I wish I had your attitude. I know that there’s so much I can’t change about this and crying and worrying doesn’t really serve a purpose. Being present and in an acceptance of what is, is actually how I wish I could be. I do try , but it takes a lot more work :
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B-A-P,
I think you articulated everything quite well! You make a good point, and one I’ve thought of often; ones age and or stage in life clearly effects how we deal with bc. I do know that had my children been young or even if I had been younger, I may have had a very different emotional reaction. When I was dx’ed at age 55, I was already in menopause, my dd’s were both adults and I had kicked my lying, cheating, narcissistic, alcoholic husband out (this made life much, much easier!). My older dd found out she was pregnant three days after my dx so that was a wonderful thing to look forward to.
Yes, where you are in life definitely is a major factor in how one might react so thank you for pointing that out. BTW, I just retired from a long teaching career, the last 10 years in first grade. I love that age and understand that having a child who is that young is something I did not have worry about. I hope your son is in a support group or some kind of therapy. Children that age have no past experience or framework to process a serious family illness and very active imaginations that fill in the blanks with things that are sometimes worse than reality. Take good care and thanks for your perspective.
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B-A-P let me just quickly say, having your concerns brushed off is definitely a valid and concrete thing to be angry about! I have read of this happening often enough to younger women (and even a few older ones) so it seems to be an issue that medical professionals need to address.
Even when I first found my lump..which was two centimeters...the gyno did not hesitate to write the mammo script but during the exam was all, “oh it's soft not too bad". Yeah yeah a cancer lump is “supposed to be" hard and painless but sometimes, for some of us, they are the opposite.
I hope tending to the concerns of younger women is an item on the agenda of advocacy orgs, it does needs attention.
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BAP, You make very valid points. My children are grown, and just recently reached a point where the are self-sufficient and in a position that they're likely to stay that way. So, I don't feel 'robbed' in that way. Also, I've already faced the death of my parents, which I think contributes. Then, there are differences in personalities - to be clear, I am not including you, or anyone specific, in the following description. Some people are just wired to be more emotional. I remember a childhood friend who cried "at the drop of a hat" - one time it was because the family had to change their phone number. She even acknowledged that it was a small thing, but it hit her emotional chords. We are just different in how we react to things. None of it is wrong; it's just different.
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Olma,
Thank you
I’m glad you had a dr that didn’t hesitate. My presentation was slightly atypical with pain on palpation to start without a discernible lump. In Canada , well atleast in my province , in order to avail of more accurate testing for younger women such as an MRI, a specialist has to order it. My Gp referred me to two and both made me feel crazy and gave absolutely ludarcris reasons as to my symptoms.
First was pain, then I had pathological discharge. Like every sinister sign that something was up, was there yet , I was told if I tried hard enough, I’d be able to squeeze the same stuff out of my other breast (I couldn’t) . Then I started to bleed out of that breast , and the specialist made me “swear to god I wasn’t picking at it “I knew it was bad but had no one to help me quick enough. My hands were tied by the medical system. So at times when I feel my lowest, the frustration of “I might have been able to stop this from spreading if only they’d have listened” creeps up.
Exbrnxgrl, my son has a lot of support at school to deal with his emotional regulation issues and anxiety. He’s a really amazing , smart kid , that feels a lot. they’ve been amazing at teaching him how to articulate his feelings and manage them when they get too big. It had been a great help but at the end of the day , I know that if something were to happen now , that it would affect him in big ways. Hopefully it won’t be that way <
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SeeQ- no offence taken at all. We truly are wired differently and we just deal with situations in our own way. I have a friend that frets over everything seemingly Non important (atleast to me ), and another that worried about nothing. It’s just who we are
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Exbrnxgrl, a few things. First, your experience living with mbc is very valid and we need your insights. We need all stories from women with mbc. There's no script to follow. We are writing it ourselves as we live,
Another thing, some women are going about with mbc and don't join a forum, some prefer in person support groups and some prefer to carry on without talking to others going through the same thing. So I don't think you can only go by the several hundred women on the boards with mbc. Plus, with so many kinds of cancer, others with stage iv dx may have similar outlooks as you. I've personally known a handful people like that who were accepting of how things unfolded for them when given a terminal diagnosis.
And a very casual and not at all researched observation I've made is how the advent of Ibrance changed the stage iv forum somewhat. Many women diagnosed w/mbc these days go straight to taking Ibrance. It seems like many of those women on the forum mostly stay with the Ibrance thread without needing to venture further on the site. Many of them are experiencing wonderfully long stretches of stability, years, only popping in to the Ibrance thread occasionally to touch base with the women there.
I'm not a cryer, never cried for hours. Didn't get mad for myself. I am very, very angry that young women like BAP and others must deal with mbc. That is so not right. I never felt like I was immune to bad things happening. I take antianxiety meds, but as SeeQ mentioned, I was one of those wired to be anxious before mbc which imo stems from a rocky childhood. Btw, SeeQ, I had to laugh about your friend's tears over a phone number change. But! I've known people like that, too.
Lastly, refer to the first thing I mentioned!
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Camille,
Yes, thank you for saying that all mbc experiences are valid. Like bc itself, mbc is not a monolith. While there are some, even on bco, who regard folks like me as mbc “lite" , the reality is I will most likely move up to more serious disease and die at some point in time. Maybe I am lucky right now but I have no more control over the course of this disease than people with more extensive disease have. I used to post on the bone mets thread but a few members deemed me not metastatic enough and made me feel unwelcome. Two even took the time to send me ugly pm's. If their aim was to hurt my feelings, they were very successful but I survived. When I have progression, one of these members will be the first to know since she told me she would have a good laugh when it happens. Heck, even this thread had a rocky start. In another pm, someone suggested I not be so open about how well I was doing lest “everyone “ think that mbc was no big deal. And that was one of the few times I got angry. Imagine instituting a class system for stage IV! Fortunately, I realize that she had an issue, not me.
I am sad and frustrated that younger woman have to deal with this but still no anger (possibly because my ex had the monopoly on that). I really would like to find some anger in myself because I think expressing it would be a good emotional purge.
I would usually start gearing up for school about now.Since I no longer have to do that, I've been thinking far too much. Maybe I'll just go back to watching the Olympics. And what the heck is women's 3X3 basketball?
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Exbrnxgrl, wow. I am shocked that someone would actually send you a pm and say they will have a good laugh should you progress. How dare they! That is beyond mean. I'm flabbergasted. The downside of the internet is people hide behind screen names and spew garbage like that. Big cowards. I've gotten into a few tense disagreements on the forum but always speak my mind publicly here, and have never/would never use a pm to get ugly with someone. You said it best, those people are the ones with issues, but still, I'm dismayed by their actions.
I've had my feelings hurt and was basically shunned after one big mess by someone who claimed to just love everyone. Over time, I realized it was truly for the best that I moved on.
Retirement is a big transition for you. In time you will adjust. Also, the 10 year thing and thinking your time may be running out—I felt like that, too, at the beginning of the year when I hit that point. But I've moved past that and you will, too. I have a feeling you still have many more years, you're experiencing some milestones and changes and your sifting through many thoughts at this time is normal.
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Thank you divine 😘. There is so much meanness in the world and having a terminal illness doesn’t make mean people nicer. One nasty gram was sent by someone who has passed away but the other was sent by a member who, I think, is still active. You are absolutely right about how people hide behind the anonymity of the Internet
I still feel like I don’t have enough to do. I’ve been helping out with drop offs/pick ups for camp, and other ways to help my dd’s and hang out with grandchildren. When school starts, I’ll be helping out with that and plan on volunteering in my grandson’s kindergarten class. I will also start subbing in January. I wouldn’t want to go back full time, but I can’t quite remove myself from the world of education yet 🤷🏻♀️.
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Divine - yes, the phone number thing was funny, even at the time - as I said, my friend acknowledged that it was not truly that serious, but hormones were involved, but she always was a crier.
Exbrnxgirl, It's amazing that someone had the balls...er... nerve... to say that to you. Too bad they didn't have the nerve to say it to the full audience for full response...that's just chicken excrement. Lol. I try to just keep my mouth shut if I don't like what someone has to say. I wish more people would practice that.
Re: MBC 'lite' - I struggle, sometimes, with hearing of others who seem to have an easier path than I perceive mine to be - I think that's natural - but when I start to feel that, I remind myself that no one has any guarantees, good, bad or otherwise, and we all face the same worries and fears. There are plenty of women here who have a tougher row to hoe than I.
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This is more about the way people expect you to react more than anything else, in the cancer daycare I have to say to two different nurses I do understand what my diagnosis means. I was being my normal self and just getting on with life and the treatments. I have got upset because I do not want to leave my husband and children but other than that I do think why not me, it could happy to anyone I truly believe it's all random anyway.
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exbrnxgrl, mbc lite??? Oh, then I'm SO glad you got the GOOD kind of MBC! Seriously??? Some people... Wow, I don't even know what to say.
And, just for the record, although my husband laugh and make jokes about me dying some day, it's our way of coping with this. Anyone with MBC is allowed to laugh and make your own sick (no pun intended) jokes, but if you do NOT have cancer, then just shut the whatever up!
End of my rant (for now).
Carol
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SeeQ,
I understand what you’re saying. My younger sister, who led a very clean lifestyle before the term even existed, was diagnosed with a uterine sarcoma and passed away within 6 months. She would sometimes be a bit bitter/envious when she saw people who had not treated their bodies well living their lives while she was dying. It really does feel like roll of the dice at times. Yes, someone really did have the chutzpah to send me a nasty gram, two people actually. One has passed away but the other member is still around. I feel bad for the ugliness in their souls but they are hurt people and often, hurt people hurt other people 🤷🏻♀️.
Sunshine,
I use humor a lot. For me it’s a good release valve and my family shares that trait with me. I fully realize that my experience with mbc has been easier, but not easy, than many but the reality is that I will almost certainly progress at some point. I can’t apologize nor hide my mbc experience simply because some feel I haven’t suffered enough. This is my reality with mbc, full stop.
Retirement certainly has put me into a very self reflective space. It is a major lifestyle change and I am very happy with my decision but I can’t wait to volunteer in my grandson’s kindergarten class and then start subbing in January. While teaching is one of the most traditional jobs for women, I went into it because it was always a calling for me and something I remain passionate about.
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exbrnxgrl- I appreciate your posts and this thread more than you could know ! Bullying others within stage IV is unreal . I'm so sorry. None of us know our timeline . Sunnidays, you wrote it well - the reaction people have has to do with their expectations. This was unnerving to me at stage 1 and the biggest reason I only share my dx with very very close friends and family. So far, my dx is not obvious . I have continued to work while I feel good - would like to work less after this summer
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Exbrnxgirl,
I'm sorry others have made you feel unwelcome. I appreciate your insights and perspective. I am glad that your struggles are not greater, and I hope you have many more years of good health.
I'm a teacher too, and tho many think I should take a break, I am not ready to give it up yet. I had only just returned to full time after taking time off when my kids were young and then due to my initial diagnosis (stage 3).
I shed tears and had some anger when I was initially diagnosed four years ago. I was pregnant with my third and scared. But the kids were what kept me focused on the present and future, making a life and plans and hoping for better things. It's a little harder now that the cancer is back, but I am hoping to learn from all of you and make the most of whatever time I have. The greatest stress is imagining the loss for children. I don't want to leave them when they are so young, but some things are not in my hands. I hope to make the most of our time on this earth together.
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exbrnxgrl- ugh how can anybody with the disease wish or laugh at the idea of one of us progressing. Toxic positivity exists but so does toxic negativity. What sort of person even thinks those thoughts, never mind verbalizing that at someone. You just keep being you, not that you needed me to say that but yeah.
I choose not to be morose and I work toward peaceful acceptance.
I am a few days away from completing four years alive since finding the lump. I think to myself what a waste it would have been if I donned sackcloth and ashes from day one or rolled up in a ball and withdrew from life because I found out the disease was terminal. Would have wasted four years of good time that instead I decided to enjoy and embrace, one day at a time.
I appreciate this discussion and all the thoughts that were shared. Love to all of you.
( wow I just posted this in the wrong thread...not sure how that happened but I'm glad I included exbrnxgrl 's handle so hopefully whoever might've read it, realized it didn't apply there).
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"Toxic positivity exists but so does toxic negativity." Thank you for stating this Olma. It bothered me so much when people were putting Nightbirde down because she said she said "You can't wait until life isn't hard anymore to decide to be happy."
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Thanks olma. I was floored to receive those pm's. Even worse someone actually posted that I needed to take my grade 1 tumor and shove it up my a** (she actually used that word!). It took the mods 10 hours to remove that post but I believe the member is still active. While I understand that not everyone will like me just as I might not like everyone, I have never understood why people go out of their way to purposely be unkind, even cruel, to others.
I have chosen to be happy even when things are difficult. I can't help the fact that my stage IV life has been easier than most. This is my reality and I can't change it nor will I hide my light as some have suggested. I am one face of mbc though not the only face. Why should any of us put down or diminish others because they haven't “suffered" enough? None of us asked for this disease, none of us have any real control over its progression . It's as simple as that.
Chicagoan,
I am not familiar with nightbirdie but it's discouraging to hear that. You can disagree with someone respectfully but I’m afraid that keyboard courage causes some to behave like mean girls.
On kind of a weird but almost funny note there is a member who for very long time would challenge almost everything I wrote. If I said it was night, she would say it was day. It was really perplexing. I blocked her and asked her to block me. This worked for a while. One day I could see that she had posted a reply to one of my posts (temporarily unblocked her to read it). More of the same nonsense. I finally had to send her a pm to say that I didn't know what kind of cruel game she was playing but to just block me once an for all. Haven't heard from her since but it was bizarre to be targeted in such a manner (she made several unsolicited suggestions on how to “improve" my personality). In the end though it was extremely annoying, I just felt very sad for her though it was oddly funny because it wasso absurd. What an empty life she must have.
You know that I love bco but I sometimes wonder if stage IV members who are doing well really have a place here. I am one of the longest stage IV survivors here and years ago there were even fewer of us. I never hid my status, never tried to hide my light. I was and am happy to represent a minority side of stage IV. Stage IV stinks for all of us, but all of us experience it differently. Why oh why should any of us put another down?
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friends, some of us are bitter because we're bitter. It's as simple as that.
I'm angry and bitter and all the toxic negativity rolled in a tight furious ball. I'm one of the people who didn't like NIghtbirde's quote because I was feeling sick and depressed and it just felt hurtful *to me*, like someone telling me to be happy. Oh f off is my immediate habitual reply.
I pop in here infrequently. I don't belong on this thread because while yeah, I'm alive, so many important parts of my life did end, literally the day my dr called me. It's a weird fluke I'm doing well 17 mos post diagnosis- like really well, but not well enough to go back to some parts of my life. I'm waiting for the other shoe to drop.
I love how much peace and calm and serenity and fun so many have. I'm glad to see people with long term stability, thrilled that someone is studying it, & hoping that someone gives everyone some good treatments soon! I admire how some of you balance the toxic positivity & toxic negativity. I just can't seem to find the sweet spot.
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Thank you for that last paragraph moth. For as much as I am generally happy and positive please know that I get upset and mourn for those who are not. Like anger, bitterness just doesn’t seem to be part of my make up, yet. Who knows? I may arrive on those shores one day.
I would just hope we can stop being unkind or cruel to each other regardless of where we are on the stage IV spectrum. Again, none of us chose to have mbc, none of us have much if any control over its course. Why turn on each other
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Moth,
What I've noticed on BCO, is that being bitter, angry or self-pitying works for some women. I don't begrudge them their way of coping-even if they have been stable or NEAD for several years. It may be generating a fighting spirit inside that helps them. I don't know but to me it is a valid way of coping.
Others of us prefer to be positive when we can. We cope better when we are trying to live our lives as fully as we can, despite the disease. BCO would be a better place if we could allow each other to cope with cancer in the way that works for us. I don't often see the positive people telling someone else that it is not valid to be bitter but I do observe the more negative people feeling free to lash out at those who are taking a positive approach. Maybe I am biased and you have noticed people criticizing you for how you are dealing with things but I hear "toxic positivity" thrown around much more than "toxic negativity."
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Yes! Wise words Chicagoan. For me, the “toxic" aspect in either case is being expected to react the way others want us to.
I can only talk about what works for me...not how others should feel.
Except for those wh tell other members here that they hope their cancer progresses. I make exceptions for that behavior.
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Chicagoan,
I love your post! Here’s a take on positivity that I found, um, interesting.
Several years ago there was a physician in San Francisco who was dx’ed with breast cancer (name escapes me). She posted a video that went viral of herself and the staff in the operating room dancing, in the OR, right before her mastectomy. Most bco members liked her style but a few were appalled. One member commented that she should have been solemn, weeping, mourning etc., not dancing! This doctor was not telling others how to react to an imminent mx, this is just what she chose to do. Now, I’m not a dancer but I was joking with my dd, my ps and a ps resident. No solemnity or tears just a bit of irreverent humor. It’s what was right for me and had no effect upon others. I give complete freedom to others to act/react any way they want without judgement. Just don’t hurt others physically or emotionally. If you disagree with what someone posts it’s just not necessary to respond unkindly.
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I think I've said this before, exbrnxgrl, but this thread was the first one I read on this site. I forget how I ended up here on BCO, but when I started looking through the Stage IV posts and read the title of yours, I knew that's where I wanted to start. I totally agree that every voice, every experience of anyone with MBC needs to be heard, not everyone is "living their moment" with backyard barbecues and dancing (like how some of the ads on TV show it) but it gives me hope to see it as a possibility. You gave me hope then and you still do.
I joked around with my surgical team right before my mastectomy, one of the nurses told me he drinks a pot of coffee every morning and I was telling him how concerned I was about that behavior (I work in addiction medicine and they all knew that). The laughter helped me to feel less scared, and I had also accepted that I needed the surgery. My mantra then was "I choose life" and while it's definitely a lot harder than it used to be, I love life. I want as much of it as possible!
And while I'm trying to curse less overall these days, fuck that person who said they hope your cancer progresses. I hope it doesn't.
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What a wonderful conversation this has been. It's okay to be who you are, and respond the way you want to, as long as you leave room for others to respond in they're own way. How hard is that?
And, I feel compelled to clarify, in case I didn't express myself well. My frustrations that I mentioned are my problem, and I try to address that and keep myself in a good frame of mind. I don't expect anyone to dim their light to spare me. I use your light to maintain balance...if that makes any sense.
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Can you live 20 years with metastatic breast cancer?
David Chan, MD from UCLA, Stanford Oncology FellowshipUpdated December 25, 2020 · Upvoted by Liang-Hai Sie, Retired general internist, former intensive care physician.
Yes, but you have to have a certain kind of breast cancer and the metastasis have to not be in the brain while also responding very well to the very first treatment regimen.
The cancer types are ER positive and or HER2 positive. Triple negative breast cancers, absent a target found on next generation sequencing (Foundation1 or equivalent), typically have short term benefit from current available chemotherapy and immunotherapy. The new Trodelvy is helpful but we need more.
ER positive bone only metastasis can have exceptional responses and long cancer control with a combination of endocrine treatment and a CDK4/6 inhibitor. We have patients out 7 years in remission on the initial Pfizer clinical trial.
Even prior to CDK inhibitors I have patients surviving 20 plus years with biopsy proven bone only metastasis using anastrozole or letrozole.
HER2 positive without brain metastasis can have very dramatic and durable responses to Herceptin based treatment. There are 25 and 30 year survivors that are off treatment now but had extended treatment on UCLA's initial Herceptin clinical trial. Patients on that trial had a lot of chemotherapy before having the opportunity to enroll in the phase 1 and 2 Herceptin studies.
I have a number of patients in continued remission on Herceptin going on 10 and 15 years. Some patients may be cured but I can't get patients to stop Herceptin to find out, it's so well tolerated.
The above is from Quora to me it is a little bit too optimistic, but why a little bit of optimism never did any harm.
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On optimism in general, I dont congratulate myself for being optimistic the same way as I wouldn't berate someone for negativity they are just personality traits people are born with.
I am off to get my eyebrows done we have a family wedding next Saturday and i have 3 very glamours sisters, so have to make an effort.
Have a good day eveyone.
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