To tell or not to tell...that is the question

Larkin

I searched to see if this topic already exists, but couldn't find it. On my introduction, a couple of you sweet ladies recommended not telling too many people about our stage 4 diagnosis. I am fully on that page, barely want anyone to know for now. Obviously, if I'm bald or something they will all find out, but for now? I look normal, feel semi normal and just don't want everyone bringing me meals and pity gifts and looking at me all sad....I'm sure you know what I mean! Plus, if I get a nice long run, I don't want people getting weary of my cancer journey...aka, "I thought she had terminal cancer 5 years ago."

So, I'd love to hear your opinions and stories. What did you tell people or not tell, whom did you trust with your whole story. Is it stressful keeping it hidden or more stressful having everyone know you are stage 4? Were your friends and family hurt when they found out later that you didn't tell them right away? Thanks for your input!

Larkin, newly stage 4

Goodie16

I only discuss the specifics of my disease with my very small circle of friends and family. To everyone else, I just have breast cancer. If pressed by someone, I often will say that I will continue with treatments and/or surgeries for the foreseeable future and that my case is a complicated one. I'm simply not comfortable discussing the ins and outs of my stage 4 diagnosis with every well-meaning person I speak to.

LindaE54

It told family and friends right away. I don't have children and my parents are no longer alive so I guess that makes it a bit simpler for me. Granted it was quite a learning curve for them to grasp the specifics of MBC. I sometimes have to walk with a cane and some curious people asked me what for and I told them. It's my own little way of creating MCB "awareness". I'm a widow and live alone and take comfort in the fact that my family which is very small btw and close friends know about my situation.

JFL

I have told very few people since Stage 4 dx. Immediate family, a few in extended family and a few friends. I did have to tell my boss and boss's boss in beginning beginning because I had to leave a company Board meeting suddenly to become hospitalized for nearly a week/receive diagnosis. However, my boss left and I am not sure whether my new boss knows. I think my boss's boss might have forgotten about it because I work a full schedule at a demanding job with no requested accommodations, continue to engage in various professional activities, workout, eat normally, am busy raising a toddler and look normal. I was diagnosed nearly 2 years ago. The biggest issue for me is I am somewhat young still and don't want people writing me off and excluding me from opportunities because they consider me "on the way out". I want to live a full life for as long as possible and carry on with my life goals. I don't want to check out until I am checked out. I know there will come a day when I need to scale back but that day is not today. I have a toddler to live for and have been Stage 4 since before he was born. Also, I don't want anyone to feel sorry for me and like to be treated like a "normal" person. I do feel bad that people may be hurt down the road when they find out but think with a good explanation, they will get over it and be sympathetic. Also, it is traumatic to repeat the story to everyone, retelling it, comforting people who are upset about my diagnosis, etc. (Partially my own fault - I am one to be more concerned about other people's feelings/grief than my own.) I am still tired from doing that 10 years ago when I was early stage. It is an exhausting task I am not looking forward to and am preserving my energy now for my little baby boy!


It is really a personal decision and there is no right or wrong answer. You will hopefully receive a spectrum of responses here to give you some good insight on what resonates the most with you. Good luck sorting it out.

DivineMrsM

Larkin, I kind of chuckle about your comment "I thought she had terminal cancer five years ago." Because that's sort of where I'm at! But those first few years, I chose to only tell my family, husband, son, sisters, brothers, a few in laws. After almost five years, I began letting other know of the stage iv dx. Everyone knew I'd had bc, but the stage iv thing confused them. Why wasn't I having chemo? Why didn't I look sick? I realized there was some futility in trying to explain.

It's a personal decision, but I was glad not to tell everyone at first. Our medical issues are allowed to be private. It was also helpful not to have to comfort others about a devastating illness That was affecting me! It gave me a long time to process the life change and deal with it on my own terms and not have to give constant updates on how I was doing.

Tina2

I didn't want people to treat me differently, so I (and my spouse) decided to tell only a handful of close friends and some family members. Very few people outside our forum understand what it's like to live with metastatic breast cancer these days (for instance, its chronic course) and I did not care to be their instructor.

Moreover, I cringed at the thought of people asking "How are you" in that certain sympathetic, let's-get-this-over-with-and-talk-about something-else way. Since I look and act fine, this has worked out very well for me. However, as others have said, everyone is different. There is a real risk of being defined by the disease when one has cancer. Remember, once you tell, there's no going back. My advice to you would be to think carefully about the specific people you tell, considering what you expect of them and what you hope to achieve. I will probably tell more people if I become obviously ill or if I and my partner need help.

sueopp

I told my family and good friends from the get-go (5 1/2years ago) and that was the right thing for me. I talked, we talked, and thankfully there was no pitying or sad looks. But there was and is support and love, even humor. I am better having it out there - different for everyone. SUE

Becs511

I am very open about being Stage 4. When I was first diagnosed, I told people that it was an advanced stage. But now, over 2 years post diagnosis, I live my life as an MBC patient very much out-loud. How do we expect people to understand what it is like, and the need to further understand and research MBC, if we continue to live in the shadows? My personal feeling is that unless we share our medical, physical, and emotional experiences with MBC, nobody else will ever understand the truth and reality behind it and the looks and questions will continue. I feel this way, especially as a young(er) woman, because my generation grew up among the pink ribbon, October party atmosphere, and the general portrayal of breast cancer being an "easy disease". I make it my business to share and advocate the truth and reality, especially among my peer group. I even have my own social media hashtag #BecsBreastEfforts and as a result, I have not only thearpautically shared my story, educated many, but have raised over $23K for breast cancer research in 2 years.

However, I am in a very different situation than most. I am 35 and single, with no relationship or children to protect. As a teenage leukemia survivor, cancer has played an impact on my life since I was 14, so when I was diagnosed stage 4 de novo, I had already experienced every emotion that comes along with a shocking cancer diagnosis. I also have an extensive (and ever growing) system of support in place who are more than willing to stand up right next to me (or for me if I need to sit and rest for a bit) and help spread the message. I also continue to work full time for an amazing company that has allowed me to work nontraditional hours, and has gone above and beyond to help me accommodate all of my professional, medical, and emotional needs. I also live and work in Manhattan, so I have been able to participate in various media and advocacy projects in order to share my story.

Since I understand that the majority of MBC patients either are unable or unwilling to share their own experiences, when I speak, I try and speak not just for me, but for all of us.

exbrnxgrl

I am very open as well. I was thought to be stage IIB at the time of surgery. I am a teacher in a very close knit, supportive school community. Yes, a meal schedule was set up and we loved it. My adult daughters and spouses were helping me out as I recovered from surgery and this took grocery shopping and cooking off of their plates. There was no pity, just care and concern. By the time I returned to work, we knew I was stage IV. I was always honest with my family ,because that's how we are,and they continue to be supportive, even if they don't always understand the complexity of the disease. At work, over the course of several years, most people became aware of the fact that I was stage IV. However, I set the tone and they responded in kind. I also made it clear that if they had questions, they needed to ask me directly, not resort to speculation or rumor. It has left me totally in control, helped educate some and actually provided support for a few parents who were dx'ed. For me, by being so open, I feel like I've let the bogey man out of the dark and neutralized him. One thing, is that I knew my "audience" well and would have been surprised if I had gotten negative or unwelcome responses in return. I realize that I'm very lucky to be surrounded by such a supportive family and community. I also feel good about removing any shame or mystery from a cancer dx. That I'm still alive and doing well after 5 years? Everyone is thrilled!

So, my only advice is to know your audience. If telling people will cause you more stress, don't. For me, it's been liberating.

sueopp

Well said Caryn. My feelings exactly. Love to all, SUE.

TrustMary

I have been stage IV for a year and a half. I don't tell everyone I meet about my diagnosis but have shared it with spiritual people whom I know will pray for me. I am awed at the amount of people praying for me -- some whom I don't even know!! I do believe in the power of prayer so I am grateful for the many prayers said on my behalf. Wishing you all God's blessings and peace and will keep you in my prayers.

Larkin

Thanks to all of you for sharing your choices with me. I can see both points of view. Still thinking on what I want to do. Maybe I like the sense of control over who knows and who doesn't - heck, can't control much else right now! My biggest thing is that I want my 14 year old daughter to have as much as a normal life for as long as possible and I don't want her world to be overshadowed by my cancer. I mean, I know it will be at home, but I want her outside world to be as unchained as it can be. I also don't want to deal with old friends of my own who haven't been involved in my life on a daily basis who will suddenly want my medical updates like a bunch of lookie loos. I blogged my first journey and I know they will wish for that again. Not feeling it yet, not at all. I could be a fierce advocate, and maybe I'll do that in the future, but right now, I think I want my privacy most of all. On the other hand, if I did just put it out there, it would be once and done and I could go from there. Anyway, just rambling. Thanks for a safe place to process.

pajim

I'm in the "everyone has forgotten" camp. In the beginning some people at work knew because they realized that 45 yo cancer survivors don't 'just' break their back. I told my family. My husband told some of his family. We told our friends nothing.

3.5 years later some of the people at work have forgotten (and a few check in every few months to ask how it's going). The rest never knew. I informed my boss this year that if he wanted to know what was going on he'd have to ask me. Else we won't discuss it. I have too much work to do. This year at my review he asked. So I told him I'd started a new drug. His sister-in-law has mets so he understands. FYI I work in a medical workplace. (Boss is an MD) They're the world's greatest about accommodations and the like.

The family who knows still knows, but word hasn't spread. Friends still don't know anything. My current policy is "I'm not going to lie to you if you ask me stuff, but I'm not going to be 'out there' with anything".

Eventually everyone will know. But I'm not ready for the looks and the questions from the not-medically-educated public.

exbrnxgrl

Larkin,

I think your concerns about your daughter play into what you do in a major way. My daughters were adults at the time of my dx. My parents had just lost my younger sister to uterine cancer 6 months before my dx. During her illness, her husband and his family hadbeen very secretive and less than forthcoming with my parents. As you can imagine, this was very upsetting to them. When I told them about my dx, I promised to be 100% honest with them. I have been a member of my school community, as both a parent and a teacher for well over twenty years, so I knew they would be a positive and supportive group. That's what I mean about knowing your audience. If my kids had been younger, or my work circumstances different, I might have not been as forthcoming. Whatever you choose to do, it has to be what is best for your circumstances.

JFL

Larkin, I am chuckling over the term "lookie loo"! Very appropriate for what you described. Also, it is just a funny term. I love it.

zarovka

I am completely open with my family including daughters 10 and 12 and my brother. I have told a few other people outside my family and I mostly regret it. For me it is mostly a burden to talk to people who don't have the disease. I get everything I need from support groups like this. Not their fault, people who are not stage IV are just not going to get it. My oncologists don't get it and that can be tedious as well, but I have to tell to them...

>Z<

Larkin

Zarovka, when you say you are very open with your girls, how did you approach the truth that our disease is terminal? I kind of don't want to emphasize that until it's more eminent, you know? I'm so desperately trying to cling to...I don't know...my life before August 1st I guess.

ABeautifulSunset

Larkin, my children were 10 and 14 when I was diagnosed. Obviously I couldn't hide that I had cancer, but they didn't need to know the extent. I needed to keep them feeling safe and secure as long as possible. And I did a good job because now they are 15 and 19, well adjusted secure and happy, as they should be, and they still don't know I'm stage 4. When will I tell them? Maybe if I ever have to go back on a more severe course of treatment where it would be obvious, then I would tell them it came back. So, if they dont know, then it was important that most people did not know. But we all need confidantes and people to lean on. In the beginning, about 5 people knew... Now it may be more like 10. I don't tell people, but I wouldn't lie if asked. It's a blessing and a curse. People treat me normal and treat me as though I haven't had cancer in years and everything is fine. Which it is not and will never be. So that's good that I'm treated that way, but sometimes it's bad because sometimes I want people to understand, and sometimes I want pity..... But mostly I don't.

Stefanie

Longtermsurvivor

I have a rare genetic disorder that begins affecting us at a young age and greatly increases our cancer risk. Mine first showed up when an infant, but wasn't diagnosed until I was a teen, cancer came at 34.

For 16 years, I've run an online support group for people with this condition. Many of our members are parents of affected children who struggle with when and how much to tell their children. Also, with telling others outside the family. Heck, some even struggle with telling blood relatives who may have the mutation, but exhibit no symptoms yet.

re. telling - I've seen and heard everything from complete openness to complete secrecy.

My opinion now (and I'm not a parent nor do I have affected family members) is that each person and situation is different and it's up to the most adult-acting informed persons in the bunch to evaluate and share as appropriate.

Tell too early and kids go into overwhelm/fear.

Tell too late and they feel they've been excluded and lied to.

Don't tell at all and you infantilize them and don't give them necessary tools and power for self-care.

Kids pick up the family vibe and know there are secrets that involve them (mom's sick and might die of it is a heavy emotional secret).

I'm always sorry that parents are put in the position of being ill and controlling the information flow, but that's our unfortunate situation.

I think it's analogous with aging elders, who maybe really can't handle devastating news like "my precious child is suffering and I might outlive her, but I'm no longer the strong protective parent I once knew myself to be."

There are no firm and clear guidelines on what works for everyone and every family, but it's worth reflecting on regularly.

You can't take it back once it's out there. Nor can you do damage control when you're dying, though forgiveness is always possible, even after death.

As my mother aged, I gradually fed her less and less information about my genetic and cancer situation as it only stressed her which stressed me. By the time she got dementia and died, I just focused on the growing love between us and felt grateful for our relatively peaceful bond.

Don't know is an answer!

best, Stephanie

goldie0827

I am very open about my condition as well, but I found the more people I told, the more cures I was given! If ya know what I mean!!

Longtermsurvivor

This isn't about telling parents, but about a parent involving her daughter in her metastatic breast cancer experiences...it seems to have deepened and strengthened their mother/daughter bonds, even as the mother's life was/is threatened.

https://barbigwire.com/2016/09/08/kelsey-and-me/

goldie0827

My children do know, but they are in their 30's. I struggled with whether or not to tell them at the time. So I actually asked my UPS driver, I see him every day, he is same age as my children. He said he would def. want to know if his mom had cancer. So I used that to make my decision. My children know, and I'm glad I told them. My mother on the other hand, does not know. I suppose the answer would be same, no matter who you asked, "would you want to know if I had cancer". Of course! I would want to know if my child had cancer or one of my parents, a sibling, a friend.

LTS, I think you are absolutely right, too soon, too late, not at all.

Give it some time Larkin, as said, you can't take it back. If you did tell her, how do YOU think she would handle it? My daughter is very sensitive, but she is strong. Good luck on your decision.

ChelleG

Larkin, I am a bit apprehensive to tell all of my relations about my dx. However, my husband ,mother and children (14,21,26) have been involved from the beginning. We are all very close and share all of our feelings with one another. But when it comes to every Tom Dick and Harry, my husband and Mother blurt it out! I used to get upset, then realized that that was their own way of seeking support. They may not have the disease, but they live with it everyday too.

DivineMrsM

Both of my parents had passed long before I received the stage iv diagnosis. I guess in a way I am grateful I did not face that kind of decision on how much to tell them. My son was a senior in high school. Our relationship has always been built on trust, so I told him; it was the right thing to do. Him knowing the truth allowed us to get rid of non-essential drama and make better choices as to what we would give our time to.

Not to say it was all smooth sailing. We laugh about it now, but during the first months after learning of the disease, ds was graduating high school and we had this super huge blow out in the car, with dh present as well, about of all things, whether I should cancel a fried chicken order for his graduation party from one establishment and order boneless chicken wings from another place. Ha, ha, hindsight reveals the stress we were really experiencing to explode on such a matter, but that's how we dealt with it. Btw, boneless wings won out and the graduation party in our back yard was the very nicest celebration ever.

DGHoff

Larkin, I told pretty much everybody, but maybe it was because I had a recurrence. Of course, I knew I was going to be in chemotherapy for awhile so my hair loss was going to make things pretty obvious, but I also found that I needed to know I wasn't alone in this. I had originally been diagnosed in 2007 and had a Caring Bridge page at that time. I received so much great support through it that I decided to blog about my journey and share it openly. I have had so many people tell me how grateful they are that I am sharing the journey.

My son is 13 years old and he knew pretty much right away, mostly because we all had to take me to the ER when I was having trouble breathing one night (chest x ray is how we found out about the mets to my lungs). He knew something was wrong, and yes, it was super hard on him at first as he worried about me, but now that he sees that treatment is proving to be successful and I'm just the same I've always been, he seems to be handling it well.

It's a tough call but you will find the answer for you.

zarovka

Larkin -

I can't really imagine not telling my children. It's not an option since hiding the emotions would not be possible in my case but I feel it gives them a sense of control and empowerment if we actively planning together to setup the family to work if I get very sick or die.

This spring, we assessed our situation together decided to move to a much smaller house and a rental. We wanted a landlord who can take care of everything and we wanted to be able to afford a regular housekeeper which will be very important even if I get sick. My husband currently works long hours and the girls will need to pick up all the house management stuff if I can't. They are of course young and in school so it needs to be very simple.

We went through this huge move this spring and they had to do a lot of work. They knew why were moving and why it was so important to downsize and simplify things. They actively engaged in this process and, again, it gave them something to do, some way to really help and I think this is critical.

To add to the intensity, my husband has a heart condition that is as likely to take him as the cancer is likely to take me. The kids know that my brother and SIL will adopt them if my husband and I both die. I want them to understand that we are thinking about how this is going to work ... I don't want them to see the death of their parents as a cliff. Certainly if my husband and I both die it will be a massive change and terrifying, but they will know how it is all going to work and we had a good plan in place that they participated in making. This is something that is very very important for me to know that they know. We spent a couple weeks with my brother and sister in law and my nephews this summer and they knew there was a very specific reason for this.

My next step is to walk through the finances with them so they understand where the money comes from and where it goes and how to manage it. I want to given them increasing levels of responsibility over the next few years for managing the accounting and budgets and all the house stuff. I am trying to empower them and give them some control through this process. And if I do make it long past their graduation as I intend, I'll look at this project as one of those weird blessings of cancer. I think it will be good for them.

Of course my approach means that they have to go through a lot of fear and loss up front, but now I can be there for them. I can talk to them about the loss and feelings and terror and transitions that are, frankly part of life. I won't be able to do that when I am dead. It's the all time parenting opportunity in my view. I feel I need to tell them in order to fully prepare and protect them.

So how is it working? We've done some crying together. We've talked about cancer treatments, how they work for a while but often fail and how there are more and more treatments but no real cure. This is a conversation that has take place over months in small bits as they could absorb it.

They know everything they want to know, and I have told them the truth, but they don't truly believe cancer will kill me. The are inherently positive and optimistic. At this point, when I freak out they comfort me and tell me everything will be okay because that is what they believe. I don't mess with that belief because what do I know? They may be right. And in fact it helps me tremendously that they believe I will be fine.

I do think telling them you are going to die without answering truthfully their questions about how cancer works and how treatments work and engaging them in the planning is not a good idea. That's just terrifying. Cliff ahead!!!

I generally think kids are way smarter and stronger that most people believe, but I've been really astonished by my own children. This whole thing has brought us closer and given us the opportunity to discuss very important things.

And the very best thing about telling your kids, of course, is that they don't start telling you their secret amazing cancer cure ...

>Z<

artistatheart

I swing both ways on this subject. When I was first diagnosed, I freaked out and thought I would immediately be getting chemo, losing a breast and my hair ect. So I did a mass Email to my coworkers to let them know. At first I hated all the pity and attention. I could tell some felt very awkward. As time has gone on most of my coworkers are more relaxed and comfortable around me. I made it clear that I don't mind talking about how I am doing, but briefly and privately please. Otherwise, like Pam, I have work to do! Since I live in a smaller town, I hate how the news spread like wildfire. It felt very intrusive and violating. I could tell when I ran into someone that they "knew". Some people have been wonderful and supportive and normal. Others avoid me and a few have outright abandoned me. I have been left out of things I would normally be invited to. That hurts a lot and leaves me feeling lonely sometimes. If I had it to do over I would probably try to keep it more private for now, but again in a small town, nothing stays secret for long. I agree with Caryn however that it is important to bring this disease into the light. We are all better off when more people understand what this disease brings and what we go through.

Jacque1102

Indeed, that is a most excellent question. I had to tell many people at work as I was in a more high profile medical job at a hospital and frankly, wearing a wig indicated something was going on. Even if I looked similiar in appearance there was a change. My colleagues were very supportive. I am now 5 years out and I do not tell new people. My boss and old colleagues know. New colleagues do not know and they do not need to know. My family and very, very few close friends know. I'm an introvert so being open about Stage IV was just too much for me emotionally. Being an observer of people, I just notice the comments people say behind the person's back and how people interact with someone diagnosed with a terminal illness. I found all too often that the cancer patient ends up being the one to take care of everyone else when they are the one's in great physical pain and they even reassure everyone else as they lay dying. I see this first hand on a weekly basis. To confess, I feel like a hypocrite being in the medical field. We should be able to be transparent but that is not the case. At least not for me. Everyone is different though. I advice to use your discernment skills as to who will hold your news with respect and love. If there is any doubt then keep your diagnosis private. Gentle hugs to you.

ShetlandPony

This is a very personal decision. Larkin, much of what you say in your second (September 7) post expresses how I feel about things, too -- including how your child is your priority, your desire for more privacy this time, and your conflicting desire to be an MBC advocate.

In my case, everyone assumed that a local recurrence was what necessitated more treatment three years after the first round of treatment. (I had given regular updates and received welcome support the first time around.) So I did not hide being on chemo for the recurrence and I did have support during that time; I just did not tell the metastatic/stage iv part. Now that I am off chemo they assume I am fine. Ironically I've been helped out here by the misleading pink bc narrative. Recently I have started sharing with more friends how tired my pills make me, in order to explain why I don't participate in as much stuff as I'd like to. In some cases this has meant revealing my history of bc for the first time to new friends, and I hope it doesn't change how they see me. But I decided it was worse to have them possibly think I was lazy, didn't care, etc. So I have told some of my story, but not all of it. Not the incurable part.

I have chosen to keep the metastatic/stage iv part a secret in order to allow my (older) kid to have a more normal life and enjoy our time together without dealing with devastating news. I am certain that this is not the right time to lay something so heavy on this kid. If I become ill, then I will tell. But really, nobody knows my future, and right now I am ok, so there is nothing to tell. Another advantage of not telling is I avoid possible cancer discrimination, and stupid comments and advice.

Because protecting my kid is my priority, I chose to tell only my three closest adult family members (who need to know for planning purposes). It would be terrible for my kid to find out from someone else. If I were to tell more people, my kid would likely pick up on it. And people tend to think they can tell just a couple of others something they have actually agreed to keep secret, so it gets passed along to more and more people. Yes, it is stressful keeping it hidden. Because of my choice I miss out on some support from friends, and I feel somewhat inauthentic with them. So many times I have wanted to share! It is a sacrifice I make for my kid. I will write a note of explanation in case I never get to explain in person, and I think my friends will understand that my duty as a mother was the most important thing. Also I regret that I can't be much of an MBC activist, as that would blow my cover. I would like to be a "fierce advocate", as you put it, but can't do that right now.

Pretty much I feel the same as Stefajoy above, but she expressed it more succinctly!

zarovka

But really, nobody knows my future, and right now I am ok, so there is nothing to tell.

Thanks Shetland. That sums it up for me as far as the outside world is concerned.

In some ways am a fraction of my previous self. I built an organization from the ground up over the last 7 years, left it a year ago with 100 employees. People who know me a year ago look at me or ask questions as if they are trying to figure out why I have no plans in place for total world domination. I don't have hair loss, but people do wonder what is going on.

But through this whole diagnosis and treatment process I have been able to move/downsize, take care of my home, pick my kids up at school and take them to activities, get exercise in, study this disease and make my Dr appointments. I'm feeling pretty good about myself. I project that vibe and otherwise I am silent.

>Z<