A place to talk death and dying issues
Comments
-
moth, the reason I would not say anything is for the simple reason everyone knows how to use google to find the information if they want to, they don't need me telling them, nor do they need me telling them its terminal, in general people are not stupid, they also have an oncologist who they have discussed the issue with.
The only time I would feel the need to inform another MBC person of anything is if they were promoting only alternative treatments as the way to go I would have an issue with that.
0 -
I'm finding this thread rich to read. I've been reading and not posting much for about 7 years. I go away; I return. This last year has been miserable for me as I progressed again and used Taxotere (only got through 5 infusions -- couldn't tolerate more), as I'd already gone through other, more tolerable options. That is the last time I'll do chemo, I declared. Then this summer my spine pain went through the roof. By August, I was thinking about moving to a death with dignity state. Why do I keep not dying?
And then I had osteocool and kyphoplasty (I posted about it in Bone Mets board) in September, and, brutal though it was, it changed my life. I still have pain and use a Fentanyl patch and oral opiods, but I can drive and walk and cook and dance and sleep through the night. I laugh and dream and enjoy my family. I feel connected to the divine.
Crazy how I flipped on that desire to hurry up and die in the space of a month or two (after recovery from the procedure). It makes me realize that every time I declare something like, "That is the last time I'll do chemo," something may happen that changes my mind. I'm trying to hold things lightly now and not make ultimatums.
It also makes me appreciate how every MBC woman I read here or talk to may be having extraordinarily different experiences and feelings from mine. Heck, my own feelings are different from mine in the space of weeks.
Thank you for every comment on this thread these last days. I do appreciate you all.
0 -
so only the glass half empty outlook is the real one?
To echo what sunnidays said, I also dont understand why other peoples attitudes matter, its no skin off my nose if people want to be overly optimistic or pessimistic for that matter. Be mad, have your pity party, whatever gets you through the day.
I dont know why having hope to live more than five years, based on actual survival statistics for your subtype, has to be classified as “being in denial “ or taken as some kind of personal insult or accusation against those who’ve died.
I’m not jealous or angry at other BC patients either, having early stage cancer isnt exactly hitting the lottery. I’m glad I didnt have to have a BMX and risk lymphedema or other complications. And of course, MBC is no picnic, even if youre one of the “lucky ones”.
0 -
I hope I didn't upset anyone with my post.
0 -
No one really gets me upset about anything on BCO. If I feel at odds with something, then my gut tells me to question WHY? After reading the last few posts it brought me back to " The Median Isn't the Message" is an essay written by Stephen J. Gould in 1991". This essay helps me to avoid dilemmas with "overall survival" and "statistics".
What does get me upset I'm on a day off from work trapped in my house due to recent Covid numbers.
0 -
not me sunnidays, I quoted you because I agreed, but I hope that did not make you uncomfortable.
I also agree with you that people have their oncologist to get information from.
My MO was great, very supportive, optimistic but still realistic. She didnt encourage me to fixate on being dead within two years, which is what I feared in the beginning. But she left no doubt this illness is terminal and incurable. And she did tell me about exceptional responders and patients with 10+ years of survival in her practice, which helped me a great deal.
Like I said earlier, plan for the worst while hoping for the best
0 -
sunnidays,
I agree that people are not stupid but sometimes they don’t have adequate info. It saddens me when lower stages progress to stage IV and they say that they were told that they had been cured. As for those of us with stage IV, yes everyone can Google and find stats and info but there are still lots of gaps in knowledge. These gaps are interesting and range from not understanding that mets are breast cancer, not liver or lung cancer (unless it’s a new primary) to believing stage IV is curable. Of course as a stage IV patient we soon learn different. I don’t believe in soft soaping or offering false hope but I do believe that everyone needs to understand their reality in their own time so I don’t push the ugly reality too hard.
About two years ago, eight years onto my mbc life, I was pm’ed by a new member asking what I had done to stave off progression. She got a bit upset with me when I replied that I had done nothing beyond what my mo prescribed. She said that I was taking away her hope and being negative because obviously there must be something that kept me progression free. I have always been honest about my situation and that of stage IV in general but I understand that we all need to digest these things in our own time. I feel like I have found a good balance for myself between reality and hopefulness and that has helped me find peace with mbc. I fully accept that I have a terminal disease that will likely be my cause of death. I just carry on as best as I can day to day and don’t think too much beyond that.
0 -
Anotherone - I sincerely hope you are right about a better prognosis with the new medicines and other advancements but I haven't seen any of those statistics yet to know that. I'm not trying to say there are any flaws with your analysis, I just don't personally know yet what the impact will be.
Olma - I'll admit, I'm a little offended by your question "trust the science?" That comes across as very political which I don't think this has anything to do with political beliefs. I was not saying that Anotherone is basing her message on false optimism nor idealism. What I stated is the best description I could come up with for how *I* feel for *myself*. That's why I tried to emphasize I'm not saying anyone else is doing that.
Moth - I personally agree with you that it's better to be informed. That feels right for me. I'd rather know the statistics than be blindsided.
And, Olma, I agree with you too "plan for the worst and hope for the best". I'm not having a pity party.
Look, I don't mean to be "negative" or bring anyone down. I'm not trying to rain on anyone's parade nor criticize them for being optimistic that they'll have 10 or 20 years. I thought with the title of "A place to talk death and dying issues" and the initial post that started it meant that this was a safe space to talk about these things without offending those who don't want to talk about it or hear anything negative.
Pearl-girl - I hope that by this thread being "rich" you mean either it's entertaining or it's useful. Either way, I hope it helps. I'm sorry this last year has been miserable for you. I totally get how it feels to almost want to die one day because it's just so hard and then things change and you have hope again. I wish you a lot more hopeful days.
0 -
You'd think people know how to use google but as exbrnxgrl said we've met mbc'ers with very limited understanding of their disease, or the difference between mets and new primary cancers...and oncologists, well studies show they do not talk about prognosis
"The study showed that oncologists rarely discuss prognosis with their patients, or have only brief discussions about it and then move on to other topics such as treatment logistics. In addition, oncologists often used ambiguous language about prognosis and treatment goals that emphasized optimism and hope, possibly establishing unrealistic expectations among patients." https://www.cancer.gov/news-events/cancer-currents...
I've chatted with lots if people who really don't understand what "treatable but not curable" means, and who have no idea of median OS for their cancer. Now *how* people process what a given median os means, and how it applies (or doesn't) to them, is a different topic. But to not even know is I think a huge problem and failure of the medical system because why are people consenting to treatments if they don't understand what the treatment can and can't do? It's not informed consent.
Tinkerbell, I think Jay Gould did a great job of explaining what medians are and aren't and that prognosticating on the basis of past events has inherent errors.
Nobody knows where in the curve they'll fall. But it's as close to crystal balls as we get... & the fact that insurance companies aren't rushing to insure me based on actuarial tables is meaningful; they're confident my life expectancy has been cut by about 30 yrs by cancer.
& fwiw, I don't think I'm a glass half empty person. I think I'm a realist & this is the death & dying thread. I'd hope it's a place we can talk about our cancers being the cause of our much too early deaths.
0 -
exbrnxgrl I do understand your point.
not sure if this is the correct place for this, my husband's father was in a Russian gulag it's a long story, but it made him genuinely live in the moment for the rest of his life, as had lived in a situation when he didn't know from one day to another if he would live or die, my husband has inherited this, he wakes up each day and says what have I to do today and does what he has to do that day, he makes very few future plans bar ones like where to go on holiday or buying a new car and became of that he is genuinely a very contented person.
That's my long-winded way of saying living in the moment is the only answer.
0 -
moth,
I appreciate your realism and I don’t think it’s negative. Until there is a true cure or at least a standard way to make this disease chronic a la diabetes, it is terminal. However none of us knowwhen we will reach the terminal point. I have had a relatively easy go of it for an extended period of time but I never lose sight of the fact that the situation can change in an instant. Does it take away my hope? Not at all but my hope is that better treatments will allow all of us to survive. I made peace with the idea of dying years ago. It has a permanent place in my mind but doesn’t effect my everyday life. I have lived for a decade with mbc. Do I expect another decade? Realistically no, but if it happens, it happens. I’ve made my peace with life and death.
0 -
I'm not offended by “negative talk" and I didn't mean to offend you kris or anyone with the Trust the Science comment. I am not aware of your political beliefs and science should not be politicized but unfortunately it has been. I apologize for the tone I took.
Here is an article about the updated HER2CLIMB results for HER2 MBC -https://www.onclive.com/view/updates-to-her2climb-in-her2-mbc
Moth, I think oncologists might try to provide optimism and hope because as MDs they may feel it's helpful as part of treatment to try to allay the patients anxiety and fear.
I don't think giving encouragement is wrong if it's fact based,that's the reason I chimed in.
And I know it’s easy to be more hopeful when you’re having an easy time of it, which I have, as far as having this shit disease goes. I am aware that everyone is not in my shoes in that respect, soI will try to be more mindful.
0 -
Another realist piping up here. I too hope to squeeze as many days as possible out of my remaining time on this earth but also feel the weight of the knowledge that time is increasingly not on my side. Estrogen therapy is no longer working and my list of chemotherapy agents is getting mighty short. I'm not giving up but know what I am facing.
Moth, you made me smile with your comment about oncologists and prognosis. I've stated in other threads how much I appreciate my MO. I think he's awesome but I know he loathes any conversation about prognosis. When I was first diagnosed with MBC he stated that I should do well for a good long time. What does that mean? I'm a numbers person. Is that five years? Ten years? A good long time to one person might mean something quite different to someone else. For me that's living the life expectancy I was meant to have. I settled on ten years… feeling less optimistic I will get there but…
I tried to raise the question another time and I could see him physically shut down. I get it - they don't have crystal balls but folks do need to be able to plan. There are so many things to consider, particularly if you are on your own as I am. Work has been the biggest issue to plague me since day one. I like my job (less so now), like the freedom of a good paycheque but will be seriously pissed if I pop my clogs after putting in a full day at the office! But… don't want to be eating cat food in my 80s either. 😏
I finally had to broach the subject from a different angle more recently, starting by noting I know he doesn't like to discuss this but… nested in a number of questions I had for him. He responded that it was hard to say as my cancer is slow growing but he thought a few years. Good enough - subject closed but to Moth's point, it was painfully difficult to get this out of an MO I truly admire who typically communicates really well. I can't imagine what it must be like for patients with oncologists that are too busy, etc.
0 -
Thank you, Olma.
I looked at the article but many articles bring up more questions for me.
"The median overall survival was 24 months in the tucatinib arm vs 19 months in the placebo combination group."
- Does this mean that this new medicine appears to give patients an extra 5 months?
"In the updated analysis, the median progression-free survival was 7.6 months in the tucatinib arm vs 4.9 months in the placebo arm; the data had been confirmed."
- In this sentence it seems to be saying it appears to give patients an additional 2 1/2 months progression free.
0 -
As far as I can tell, the women on the mbc forum don't kid themselves about the realities of having this disease. I got 11 years under my belt now but never have I ever claimed it was due to some kind of positive thinking. For some reason, I'm responding to treatment. I don't apologize for it. I am very, very humbled that I've been an exceptional responder.
Just a refresher on this thread topic, here's the original post by ma111 that started it all. The all caps sentence is her doing:
****This post is for those of us with concerns and issues about death and dying to talk about them.
IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial. ***
0 -
I was watching ER this morning and Dr. Romano - who I've come to love in a way because of how tender his moments are when he lets his guard down - surprised me with this unforgettable line while operating on a little girl with cancer invading the chest wall. He said:
"Amazing how the human body can turn on itself, the very process we need to grow in the womb, to regenerate ourselves systematically eating us alive - and no one is sacred, little girls, father's with little girls -
Cancer; brain cancer, liver cancer, breast cancer, its the same traitor- the same merciless unrelenting predator, like time itself"Felt like he hit outta the ballpark with that commentary, felt like a good way to describe cancer and how awful it is to me.
Caryn - you gave an excellent answer to Sunnidays - I really thought it was a good balance and honest.
I always appreciate Moth's directness, kinda reminds me of Jaycee and a couple others around these parts - straight and to the point. Moth is correct on oncologists - they don't talk about prognosis. Mine still hasn't. Just said "We will treat this aggressively" after my Stage 2 become Stage 4.
Everyone's contributing great things (Sadie, Pearl, Tink, Olma, Divine, etc) so nothing further to add really.
Kris you can be as frank as you want to be, doesn't bother me at all - where else can we talk about this crap which unfortunately all of us have a date with and need to deal with at some unknown time. I like directness and honesty and realism. Show me a glass, I'll just tell you there is water in it. Post away.
I really wish things could be like in the green mile. When the warden's wife was healed of her brain tumor by John Coffey and she wakes up and asks what happened, what did the tests say. And Tom Hank's character Paul Edgecomb say's to her "There was no tumor"....causing the warden to break down. I'd like to wake up as it were, I wish I didn't need to post here. I was hoping to be eating from the Senior menu before things started brewing...sigh. Ah well, I did make 40 so far so - in this instance I will say the glass is half full.
0 -
I'm one of those people who knows the overall stats but not anything specific to my situation. I don't want to know. Never have. My oncologist made it clear over the last five years that she was worried my cancer would come back and she was right to be worried because it did. But she's never offered a specific prognosis and I never asked. I know she would tell me if I wanted to know though, because she always answers anything I ask her. I'm not one of those people who sees 10 and 20 year survivors and thinks "oh that will definitely be me!" but I know it would not help me to know more detailed information. The general idea is plenty! I'm actually more worried that my family doesn't understand. My siblings both consulted Dr. Google so they are aware, but I don't know if the older family members truly understand or not.
I've come across people in my Facebook groups who don't seem to have a clear understanding of what chemo and radiation are for and I feel afraid for them. One lady today was saying she'd skipped those in order to remain healthy, and that if it came back, well, she'd be healthy and ready to fight it again! Like it was a periodic flare up easily dealt with if you just stay healthy.
I feel like I'm in a weird limbo at the moment. I'm only two weeks into my first line treatment and I don't know if it's working yet. If it works I feel like I can plan ahead a little, even if it's only a few months at a time. But right now I don't want to do anything except sit and wait and obsessively check these forums for updates on my Favorites list.
0 -
RhosgobelRabbit - That's an excellent quote from ER. It's so true. And I too appreciate moth's directness.
ParakeetsRule - I understand you not wanting to know more details and don't blame you at all. We're all different. Hell, maybe it's not the same reason, but for a while I couldn't even watch TV because any little thing that mentioned death or disease made me think and cry about the very things that I was trying to distract myself from.
I've also heard people say similar things as those in your FB group about avoiding using chemo because it's 'basically poison'. I too really worry about them. I feel like I wouldn't still be here today if it wasn't for chemo.
And, BTW for anyone still catching up on the thread, the questions in my previous post were really more rhetorical than anything. No response needed.
0 -
parakeets- I am like you and don’t ask my MO specifics about how long I have, but I’m sure she would tell me her best guess if asked. I’m not in denial, but I also don’t feel hopeless. I’ve done enough rough googling to know the stark reality of the situation, and for me, it won’t do any good right now for me mentally for the MO to give me a timeline. I already have something to dread every three months and that is scans and what may show up.
I watched Don’t Look Up on Netflix today, kind of a dark humor about the end of the world, yet scarily accurate about the times we are living in. It was good, but I had a long, weird cry to myself in the shower afterwards, because I likely won’t be around for any world shitshows like that. That should be good right? Somehow it made me sad.
0 -
I think it is hard for MOs to talk about prognosis since it is so variable. I did hear Hope Rugo say several years ago that HR+ MBC had about a 5 year prognosis- I don't know if she would say that today- but, the number stuck in my mind.
When I was diagnosed with ILC 3C with tons of + nodes- the plan was chemo, then radiation and then Arimidex- I had a few CTs which showed no MBC- and my MO didn't say how long I would live only that he had a patient in my situation that lived 20 years. He said there was no question that I needed chemo and radiation- so I went ahead. The first RO I saw months before radiation was to start said - you need the radiation, don't even think of not doing it-, but, when I was ready for radiation, she was on maternity leave and I saw someone else who basically said- have staging again- I bet you are MBC and you should not bother with radiation, the side effects aren't worth it- you won't live long enough, also quit your job and live your best life. He said your + nodes trump any scans you have had. I was shocked and blindsided and my MO said I don't think you are MBC, but, I'll do more scans if you want- with your not clear surgical borders and so many + nodes- you should have radiation. I did the radiation- that was almost 10 years ago- 5 years later I got MBC.
My point is- who knows, why steal my sense that I may have many years to live- the RO basically ruined any future joy- and he was wrong.He spoiled my chance to have those 5 years and think I had a chance - later I learned that 3C has a 60% chance of progressing to MBC- he has since retired, I am still alive and fairly sure that the radiation has extended my life.
I try to remind myself that all sorts of people die suddenly, are chronically ill and aren't asked to stop their lives and just wait for death etc. to justify purchases and drop out of life- no one knows-
I think that hope is good in a situation that we really don't know- false hope is when it is quite certain that you are too ill to survive, yet you are told otherwise. Positivity feels better- but, doesn't change cancer prognosis- I prefer to be positive it I can just cause it is more pleasant, .
0 -
You are all brilliant people, I am reasonable alright about dying once I got over the shock, remember man thou are dust and unto dust, you shall return apologies to anyone who is not religious.
I wonder is it because we live in a death-denying culture.
0 -
Kikomoon, I watched just look up too and the part where the Kate got meme'd had me cracking up! But you mentioned possibly not seeing the worst stuff and I agree, although it doesn't make me sad. Friends have asked before how I'm not constantly freaking out about early death and when I tell them that the cancer may actually be taking me out before a worse fate does (disaster, war, etc), they get a worried look, like they're suddenly realizing things could be worse, oops 😬
0 -
NKb, interesting experience you had with your drs. I'd argue that they both failed and that what you needed to hear was the "60% progress to MBC" - assuming that's correct, that's a piece of info that conveys the danger but also keeps open the possibilities of no recurrence. What do you think?
I knew my recurrence risk was high but it didn't rob me of anything. I got back into life and plans.... but I've heard from some women who felt that they were waiting for the other shoe to drop and say they would have in some way preferred to not know. While I understand the emotion, I think it's not a reason for the medical system to not tell pts the data as they know it ( with all the caveats about it possibly not applying etc)
And the thing about is not being applicable blah blah is really not how MOs use that data
When you listen to oncologists at conferences they are deeply aware of pfs and OS and they *use* that info when prescribing treatment. Some just then suddenly omit it from the pt communication...
so they assume it will probably apply, use the info to guide their treatment plans, but suddenly get cagey when it comes to telling the patient the deets. That just bugs me...it's an old style patriarchal medicine model and it needs to be kicked to the curb
Tell pts everything and then refer to appropriate mental health services so they can process and learn to live with the info.
0 -
I was essentially stage IV de novo so never dealt with an mo at an earlier stage. As far as prognosis, I am glad I wasn’t given one because my mo said that although we have historical stats, they have no individual predictive value. I appreciate that she provided the stats to me but did not use them as a prognostic tool. By the same token, she has never tried to soft soap my situation. We have just dealt with things as they came along and, for now, am comfortable with that.
How much we want to know about our medical condition is very individual. I’m very interested in facts but less interested in speculation or unfounded predictions. Neither denial nor unwarranted optimism work for me but that still leaves a wide open space for what lies in between.
0 -
As stated, I find that forum members with mbc understand the realities they live with. The ones who come across to me as delusional are lesser stage women going for the alternative treatments, turning their backs on conventional medicine. I don't lose any sleep over their choices since they are adults and are free to handle bc as they wish. But I've seen more than a few take that path only to have bc rear its ugly head with devastating results. I could never, would never gamble on my life in that way.
Complimentary treatment that works in conjunction with traditional treatment makes me feel that I am making better choices. Eliminating diet coke, check; increasing daily water consumption, check; eating more fruits, vegetable and nuts, check; drinking almost no alcohol, check; taking a vitamin d supplement, check; identifying and reducing causes of stress, check. Do these help? Have they any affect on response to treatment? I cannot say but I feel these choices add to my quality of life.
No where on my list of complimentary treatments is “maintain positive attitude" or “eliminate negative thoughts." Some days I feel more hopeful than others but never deride myself when I feel down. If you follow the feminism thread I started this year, you'll know I find that there is constant societal pressure for women to be happy, perky, upbeat despite anything they're going through. We do not have to conform to this kind of conditioning. I believe women should be permitted to feel the gamut of emotions without apology.
0 -
Sunnidays - I agree with what you wrote re the gulag. I try to live my life to the fullest everyday, all day long (when I'm not sidetracked by side effects, etc.), Sometimes that means doing nothing special or just looking out the window at beautiful tree and sky.
A friend of mineillimae - You are so right about how do we know that we won't miss the big one - war, disaster, plague (we already have that). A friend of mine, who lived in Manhattan, died the week before 9/11 and missed that one.
As I've said before, I was told I was going to die over 13 years ago, with a very aggressive, mutating cancer. As exbrnxgl said, I didn't do anything special to stay around this long.
0 -
If I wasn’t facing the reality of MBC being fatal, I would be one of those depending on supplements and veggies to “cure” me. The fact that I am so compulsive about showing up for treatment every three weeks is proof that I know what I am up against.
In fact, going back to the “trust the science” comment, that is actually a comment I made to my MO at one of our first appointments. I told her all the supplements I had been taking and she was very disapproving. I think she had had recent experience with people not following through with treatment in favor of “natural cures” - woo-woo she calls it. Because, she said to me at the end of the appt - I don’t know if you are “holistic”. But you seem to be, but you cant take all that stuff if you’re going to be on chemo - and I told her dont’ worry about me, I am kind of “holistic” but I’m going to trust the science on this one. That was before “trust the science” became the meme that it is today, it had none of those connotations.
0 -
I wish that phrase wasn't politically charged these days. I also trust it but really wish we didn't have to deal with a pandemic on top of mbc.
0 -
Moth- I think you are right that both failed me in their own way- but the RO writing me off was worse.
I think we all have different takes on this and wildly different responses to various treatments which can muddy the discussions. interestingly my consults with my UCSF second opinion MO are a less emotional discussion of the facts as they are known for my situation. Im not sure if it is because she doesn’t have the day to day care of me or if she just trusts me more with the information.
Grandchild is calling.
0 -
KBL Kris -
You flatter me!. At least you didn't say "You look great! Are you sure you have cancer?"
Hugs to you and your grandson.
Anna
0
