Being given the right to choose what we know.

[Timtam56]

This was posted to me on Facebook today. Thought you might all find it interesting too.

I believe we have the right to choose. Whether that be knowing, or not knowing.

nytimes.com/2019/06/22/opin...

[mariootsi]

We do have the right to know or not know.

I personally don't want to know

[Mindysooty]

I feel very strongly about this. Everyone should have a choice. I choose not to know and categorically told my onc under no circumstances do I want anyone talking about time scales at this stage of my illness. No one knows anyway how I'll respond to treatments etc. It may change further down the line but right now, no thankyou.

[Barbteeth in reply to Mindysooty]

Exactly !!

I couldn’t have put it better myself

Nobody knows

Barb xx

[Hidden]

Thanks for sharing this article! I remember asking my oncologist when we first met and she didn't give a time scale. She just said I had "many years" ahead of me. I was relieved and told her I was glad, as I thought she would tell me I only had six months left to live. That was 13 months ago and I have every intention of living for many, many more years until there is a cure for this disease. I'm not giving up! While I hesitate to call this a "fight" (who wants to be in battle formation 24/7?) I view this disease as something I am continually learning from, and persevering with.

Sophie

[kduck in reply to Hidden]

Well said!!

[Hidden in reply to kduck]

Thank you!

[kearnan in reply to Hidden]

In the beginning at another hospital, I asked how long I would have if I choose no treatment at all. The breast surgeon (not an onco) said probably five to seven years without treatment. I was also told I probably had the cancer in my body for five to seven years before I felt the lump.

[Francesca10]

Hell of an article and glad for it. Only God knows my time and I do not want to hear anything about time frames, statistics, etc

Thank you for sharing that

♥️Frances

[Timtam56]

Yep.its good for me to read all your responses too. As I did /do want to know, but I’m now learning, no one knows! They can’t cause this treatment is working! I know it’s probably harsh on our bodies. But it is certainly working. That’s good enough for me right now.

Love to all.

Ps. Glad you all enjoyed the read.

Timtam down under.

[Hidden]

TimTam56, Thank you SO much for sharing this! I'm a NYT subscriber but missed this! The comments section was closed, but i sent a letter to the editor, highly unlikely it will be published, but basically strongly advocated for giving us information based on available data! I, for one, believe that my quality of life has suffered from not having access to good information re: average/+ "tails on the curve" for PFS and life expectancy. I WANT to know, and feel infantilized and condescended to by having this information withheld from me! Thank you, again...

[Timtam56 in reply to Hidden]

That's exactly how I feel. WOULD NEVER HAVE BEEN ABLE TO VERBALISE IT LIKE YOU JUST DID. Thank you.

But do you think it's more that with the amazing treatment we have the options of now, no one really CAN know?

My sister had CUP (Unknown primary, and was told 18 months.... this was ages ago. I think 12 years now. And she went downhill really quickly and guess what? 18 months to the day.

So I believe it has to do also with us, the people we are and how we can handle whatever it is. She didn't want to know anything or prepare for anything. Whereas I am the complete opposite and I actually NEED to know everything. Gotta start doing the selfie movies for my daughter actually.

Cheers to all.

C

[Stage4Gir in reply to Timtam56]

I feel the need to know too. I asked my onc how long without treatment, about a year, and how long with and she said 2-3 years. It helped me decide on doing treatment which originally I was leaning towards not doing. I’ve had bc since 1996. 3 times before finally getting MBC and I’ve had chemo and radiation and hormone pills so I didn’t want to do it again but turning 1 year into a possible 3 or more had me decide to give it a shot. Although some days the Ibrance letrozole combo really steals my fire, it certainly hasn’t been as bad as the IV chemo I’ve had previously so it was the right decision I think. I also want to know so I can plan my life (type A) but funds have prohibited me from realizing a full bucket list of adventures haha. It does make me do more of what I want though so glad for that. No more obligatory engagements and only go to things I enjoy.

Thanks for the article.

xo Debbi

[Timtam56 in reply to Stage4Gir]

That’s wonderful that you get so do some of the things you want Debbi. Yes. I agree. The ibrance Letrozole and are you on bone strengthening injections too? It’s called Denocumab down here. I get so so so tired. I wonder if I’d be able to get the most out of travel. But I think doing whatever we want is very important.

[Stage4Gir in reply to Timtam56]

I’m not on bone strengthening meds yet but my Mets are to the lung pleura and ovaries. I do however have to get my lung drained every 5 weeks or so for fluid build up. Used to be more often so guess the Ibrance is working some?

[kearnan in reply to Stage4Gir]

LOL...same with me. Only thing I am upset with is that I can't travel overseas anymore which I love adventure trips (Africa, Amazon). Financially, now I just can't do it so for now a barbecue with friends, going out to dinner will have to be enough. The way I look at it if I was going to get stage iv, I got it at 57 having traveled to Africa, Amazon, Machu Picchu,all over Europe in my 40s because I can't do it anymore. Unlike some other diseases, we can still see, walk, hear, think and basically still enjoy other things. I am now in process of minimizing all the needless stuff I have just to give myself alot more space in my apt. I am on SSDI so I have learned to live on a fixed income (I am single). I was blessed to have good health all those previous years and to this day (I was diagnosed at stage iv) I have NEVER had to sleep in a hospital overnight. I feel bad for children and teenagers and young women who now cannot have children. So I am grateful for the good health I have had for so long.

[Hidden in reply to Timtam56]

I understand what you're saying about the availability of new treatments posing a challenge to the accuracy of projections, but I'm pretty sure there are ways to incorporate that info (based on pre-market testing, e.g.) to still arrive at a reasonably accurate curve. Or "best available info", which is all I'm looking for.

For example, when Ibrance first came to market, it had already been shown to increase average PFS (progression-free survival, i.e. time before progression) by about a year. So I took what was previously known, and inserted a year into the early stages of treatment, then rounded down a bit. Most of the newer drugs, btw, have PFS data, but not OS (overall survival), meaning, okay, you get an extra "x" months with this new treatment, but can you add that entire number to life expectancy, or does the PFS on subsequent treatments decrease after doing the new treatment...?

I'm so tired of the evasive, fuzzy statements like "Everyone is different", "It's very individual", etc. I know that someone could give me a curve for my cohort. The most meaningful variables are: subtype, "de novo" vs. recurrent, location of mets at dx, and a couple of others that I can't remember because i now have oatmeal where brain matter used to be! :). The docs have numbers and graphs on the impact of each of these factors....I've eyeballed them, myself....

And, yes, regardless of data, no one can really know, on an individual basis. But let's say that the group of women with the variables above that match mine represent 5% of the MBC population...give me a graph for my 5% and i'll look at the big bump in the middle (the average) and the tails on either side to get much more information than a curve based on 20% or 100% of the population...

And I agree, to a degree....or would like to agree that WE, individually, have something to do with outcomes, but mostly I think that's less true than we would hope. I read a study recently that optimism/happiness e.g. does not affect outcome. Which is unfortunate because I'm generally optimistic and happy!

Re: the selfie-movies, do you mean doing those things that you want to be sure to do while you're feeling well? I'm in the same mode. It's time for me to get those things dealt with, especially because some have long timelines (possibly selling a beach house/rental property, e.g.). I'll feel much lighter knowing i's are dotted, t's are crossed, which will help me enjoy my life even more...

Best to you....I love your posts!

[kearnan in reply to Hidden]

Wow....everybody is different. Whether you want to hear that or it. People have other health problems, different types of cancer, other things going on in their lives. If you spend so much time trying to figure out how much time you have left and doing all this research and investigation above, you are not living in the present and enjoying life. It's a fact. Only GOD really knows. Once I was diagnosed, I took care of things like that (will, my wishes for when I die). It could be years but its done and I live in the moment. This is what I seen on other forum boards, women who kept power point graphs and charts and all this and I thought No way....I am not giving cancer any more of my life that it has now. Live in the present.

[Hidden in reply to kearnan]

Kearnan -

I appreciate your point of view and I agree that everyone is different, so in an ideal world (not that there is one... ), degree of transparency is not "one size fits all", but customized, as proposed in the opinion piece.

Even the sound advice re: "live in the present", that's known to be an orientation, an individual preference. Many people live in the past, which might be actually be helpful in our situation. My nature/orientation is to live in the future. Might sound strange to some others, but my plans (realistic and not so much...) and dreams are so important to me. Have always sustained me, e.g. great things are always just around the corner, if only I can make the right moves now. I think this relates to my optimistic nature, I don't know. So if I can't plan well, I feel crippled. And I can't plan well without good information/insight.

Again, different strokes. That's why options are key.

Be well...

[Timtam56 in reply to kearnan]

Hi kearnan. Yes. We are all so different. And that's why I put the article up. I liked t because it does not prescribe one way or the other, but allowing for difference. It sounds like you have your way of being very much in control. That's great for you.

I guess we are all here for different reasons. I am always keen to know how others are coping with such a huge issue.

Regards

Timtam.

[Mindysooty in reply to Hidden]

Hi Lynn, I totally agree if you want the info then you should definitely be given it. Its your life, your choice so nothing should be withheld if you require it. Its like everything else in life, each of us wants different things and that should be respected. I think further down the line I'll know when I'm ready to know - if that makes sense. Im just not ready yet.

Take care. X

[kearnan in reply to Mindysooty]

I don't ask my onco only because I don't believe she knows when I might die. They are doctors and sometimes patients expect way too much of them. I figure I well know when things get progressively worse and then go into hospice but for now I am living in the present. My onco and other cancer doctors have told me the same thing. Patients ask all the time and they don't give answers because they really do not know. One woman said she kept asking every visit and her onco told her he had no idea that women live for many years with stage iv. But every appointment she got angry and demand to know so he told her three months. She then was posting how panicked she was and I thought Geez, you harassed him enough when he told you he had no idea, and now that he gave you a number (probably just to stop her from asking and shut her up) she was flipping out.

[Kimr2081]

Good article. I choose not to know. I want to be involved with my care but no need to tell me that people in my situation have a xxx life span. It's hard enough sometimes dealing with the disease that I don't need that on my mind. Plus I believe that only one person knows when I will go and I will leave it up to him to decide.

Kim

[kearnan in reply to Kimr2081]

Amen to that and I agree.

[Iwngca]

I am one of those people who DO want to know everything. I was told at my diagnosis that actuary information gave me about 26 months to live with treatment but that many women outlive that figure. I started going to a support group and found out that 2 women who have the exact same kind of cancer that I do have been battling it for over a decade. Another woman died within a year. It is all a lottery, really, isn't it? Some of us do well on drugs (the women in my group, for the most part, did well on Ibrance. I did not.) Some of us can't seem to find that right cocktail of drugs. For me, I INSIST on getting a paper printout of ALL of my labs. I WANT to know how my white blood cells and neuts are doing. Knowledge is power. I WANT to know the side effects of the medications that I take. I would rather be prepared and pleasantly surprised than unprepared and gobsmacked. My attitude seems to annoy my oncologist a little, but she hides it well. She always seems surprised when I ask pertinent questions. Example: she wants to put me on Afinitor. I have diabetes and read that it can cause high blood sugar. Many people actually become diabetic on this drug. When I asked about it, she seemed flustered and said that the incidence was rather low and not to cross that bridge until we get to it. I responded that, according to my research, over 67% experienced rising blood sugar and that was not a "low incidence." She honestly looked like she wished that I were illiterate. BUT...even though I have to try this drug (insurance won't pay for better stuff until I jump through this hoop), she knows to keep a sharp eye on my blood sugar because I WILL. I advocate for myself because NO ONE ELSE WILL. And, I want so badly to live. I know that our oncologists are basically good, but they are human and miss things. They have large patient loads. We are just responsible for us. It is my body and I want to take the best possible care of it.

[Mindysooty in reply to Iwngca]

Hi there. No, in respect of treatment, Im exactly the same. I get blood print outs etc. My onc is the same as yours, they dont seem to like it if we delve too much but Im with you, I just want to live and cant just take everything she says at face value. I need to understand the whys and wherefores of it all and they do have so many patients, its not unheard of for mistakes to be made or something inadvertently missed. Theyre only human . I just dont want anyone to talk about life expectancy as I think if they gave me a timespan, as much as Id try not to, I think Id focus on it too much. X

[kearnan in reply to Iwngca]

All these stage iv meds are powerful and have side effects. Verzenio is very hard on the liver. It COULD cause liver damage. That does not mean it will. I am the complete opposite. I said I read on the boards these women that keep graphs and such and get freaked out with their numbers and everything. I said I don't need to hear or want all that. Just tell me its still working,things look good or it stopped working and this is our next drug to try. The patients are not doctors. I can see why an onco would get annoyed when a patient is going to question every single treatment and the side effects. Not everybody has the same side effects. I hated Ibrance and most women swear by it. So now I am on verzenio. I am not going to give cancer more of my life than the monthly trip I go to the cancer center. I am going to live in the present. A doctor told me they hated "google" bc women read all this information and came up with their own diagnosis. I trust my onco but that is me.

[Iwngca]

I know a lot of women like you and totally respect them. We each have to do what is the right path for us. During my first bout with breast cancer, I did not know or care to know unless it was very important. I beat it. Banged that gong in the waiting room. Then, I got leukemia. After that I started paying attention. I survived leukemia, but by the skin of my teeth. Now, I don't make graphs or let cancer take over my life at all. But, I am very informed. I know my wbc counts and neut counts. When my oncologist tried to put me on Neulasta, I reminded her that it could trigger my leukemia to come back. She thanked me for reminding her. I'm not obsessed but I am informed.