Dec 13, 2018 01:26AM JFL wrote:
I am 4 years out and am in the same position with the same perspective as you. Common = perhaps not the majority way to handle it. Odd = no.
A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Dec 12, 2018 11:10PM
Wondering how may on this board are keeping their DX under wraps and what are your reasons? I am three years in with MBC and made the decision to only tell my siblings who all live overseas and just a few close friends in my city. My reason was after my first DX, in 2001 I found it more difficult dealing with the gamut of reactions from supportive, to telling horror stories and those that simply vanished out of my life for the duration of my treatments. It seemed like I couldn't go anywhere without talking about treatments and being asked about prognosis and checkups and endless phone calls when I should have been spending time with my then small child. Most meant well but was the most stressful part of the process.
Second DX 2005, I kept it to my boss and close friends and it worked well for me. Round 3 now I made the same decision. What's upsetting is that some of those that I have shared with often judge my decision. One of my closer friends even betrayed my trust and shared with others. I shared with one acquaintance who has another stage iv cancer who gets plain irritated with me because I don't want to "take advantage of the perks" and attend events for cancer patients such as look good feel better etc. where you get free goodies. I totally honor everyone's personal decision and we all have unique circumstances. For me I have been able to spend the last free years leading a relatively normal life that is not consumed by cancer except for managing the fatigue and some other SE's. Am I an odd ball?
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Dec 13, 2018 01:26AM JFL wrote:
I am 4 years out and am in the same position with the same perspective as you. Common = perhaps not the majority way to handle it. Odd = no.
Dec 13, 2018 03:44AM gonegirl wrote:
I also keep my dx to myself. Don't want to deal with pity, horror stories or assumptions. I do tell some and with those folks will clarify when they step over the line. Have had others with chronic illness/pain send pity my way and I'll nicely clarify that we are both in same boat, just got different flavors of bad luck. I get you on staying private.
Dec 13, 2018 05:43AM - edited Dec 13, 2018 05:46AM by DivineMrsM
dorimak,you honor yourself by choosing what you want to disclose about your health and to whom you want to disclose it. There is nothing weird about that.
As I was diagnosed stage iv from the start, I let people know that I was dealing with bc, but the fact that it was metastatic is something I shared only with family. My reasoning was similar to yours: who wants to deal with others' reactions, even tho they mean well, when we are coming to grips with it ourselves? Plus, like you, I didn't want all conversations geared towards bc.
After about five years, I was a bit more open about being metastatic. Because I “looked" healthy, it was confusing to people. Some were aghast that my only current form of treatment was “a pill". Since cancer is often depicted so dramatically in the media, they thought I should still be bald and eyebrow-less, wearing a hospital gown with my butt hanging out the back and pushing an IV drip on a pole around with me. I'm actually appreciative of the more recent commercials for metastatic breast cancer medicines that show women with mbc leading rather low key, normal lives while taking a daily pill. It gives the general public some insight.
It is unfortunate that one of your friends had loose lips regarding your diagnosis. And screw the perks. We are all allowed to deal with bc/mbc how we want and not be pressured or judged by others. So you have to assert yourself. Your choices deserve respect. Too often, people feel women can't make the right choices on their own. But we are tough. We are intelligent. We are capable of deciding what are the right choices for ourselves.
Dec 13, 2018 06:52AM gonegirl wrote:
Is there a like button here? I want to like what you just wrote, divinemrsm
Dec 13, 2018 11:35AM jobur wrote:
I am a private person and like you, have chosen to share my dx with only close family and friends. I also had a couple people I trusted share my dx with others (who of course, had to share with others too). I have run into people who I did not tell who obviously have heard, and their reactions solidify my reasons for keeping quiet.
As for your friend who thinks you are missing out on "perks", are you kidding? Free make-up or t shirts or whatever don't come close to the perk of leading a nearly normal life.
When I was dx'd 4 years ago, my MO (to whom English is a 2nd language) told me she had one patient who was an "odd ball" because she lived with mbc for 15 years.
So let's be odd balls!
Dec 13, 2018 01:33PM LoveFromPhilly wrote:
Hi - very good topic!
I am an incredibly social person (some would say an extrovert - with serious introvert needs which I nurture). When I received my de novo MBC diagnosis last year in April I ended up deciding it was important to let EVERY one of my closest 40 friends know about my diagnosis. I was/am both glad and not glad I did that. One friend told another, and then another, and then next thing I knew, people were writing sympathetic and "fight fight fight" messages on my facebook page. I was super duper annoyed and had talks with multiple friends asking them to be more considerate that I shared this with them, albeit a lot of friends, but did not mean that I wanted it to be fully public. A tricky line! I run my own medical practice and have a very "in the spotlight" family.
So I ended up deleting my facebook page and stopped telling people. I ended up being interviewed for a LBBC article on nutrition and MBC and so my picture and name were on the front page of that recently. I have had a couple random women in my apartment building stop me and tell me they saw the article and were quite surprised to find out I was living with MBC.
I am fully torn between being an advocate (and being public about this disease) and just being me and living my life.
Another tricky area is I am single. I have a date on Sunday with a new person. They are actually one of my fitness teachers! I can't even begin to consider how and when I will disclose my health information to him...always so weird!
Dec 14, 2018 11:43AM kandyhunt wrote:
I am so glad to read all of this. I told my family and very close friends. I did have one person say something on Facebook but it was obscure and only one person asked about it. i answered her in a PM and told her I was not announcing it to the world and would like her to keep it to herself. If she has told any of our mutual friends I have not heard about it. I am glad I have not announced it to the world. But I am sure that now I will be wearing a compassion sleeve people will be asking. I don't think it is odd. But if it is then I am glad I want to be odd.
Dec 14, 2018 02:27PM JFL wrote:
Your statement - “I am fully torn between being an advocate (and being public about this disease) and just being me and living my life.“
That is 100% me as well
Dec 14, 2018 05:07PM Sadiesservant wrote:
I've been very open about my situation with my colleagues at work, family and friends. I reasoned that I did not want to have to worry about explaining treatment effects and absences as situations arose. I hate wigs and so it was going to be pretty obvious that something was up when I was on Taxol, lost my hair, my eyebrows, etc. And in our small work unit people would quickly notice that I have a lot of medical appointments not to mention the days when I come to work with a portable IV bag with my pamidronate infusion! All have been very supportive and I haven't regretted the decision.
As time has passed and I continue to do well, I have been less inclined to reveal my MBC diagnosis to folks outside of my immediate circle. We have a few new staff members who I believe are in the dark about my illness. (Thankfully my coworkers appear to have been discreet.) While there are some people I absolutely did not want to know, for the most part I wasn't concerned one way or another. I suspect the change has come about because MBC became less "top of mind" once there was a pattern to my treatment.
However, I also understand being torn between advocacy and a desire to maintain some level of privacy. While I have been open, I realized that this could leave me vulnerable to unscrupulous individuals. The issue came up recently when I was asked to participate in a media campaign regarding planned giving. I'm single, with no dependents and decided to set up a legacy in my will to support cancer research. This request made me think about the potential for unwanted attention if suddenly my face was plastered all over a magazine talking about the reasons why, at a young age, I had decided to create this legacy. I may have been worrying for nothing but imagined, at the very least, that I might be inundated with donation requests! As a result, I have backed off of the idea of telling the complete story. I'll still support the media drive but will dance around the issue of "why".
Dec 14, 2018 05:18PM finallyoverit wrote:
Nope, not odd. I can count on 1 hand the number of people who know about my stage iv diagnosis. Only 1 is not immediate family. The people that know are well aware of my desire to keep it private. They all also know that if I find out they’ve shared the info, that’s it.. I’m done with them. Harsh? Maybe.. but it’s not their info to share.
I want to live as normal of a life for as long as I possibly can. I do not want every single conversation I have to be about cancer. I don’t want the pity look. I don’t want people doing things for me or involving me simply because of my diagnosis. My MO tells me all the time that if he saw me on the street, he would have no idea I’m a cancer patient, let alone a stage iv patient. My response always is, that’s what I’m going for. I’m not in denial and have completely accepted the diagnosis, but I’ll be damned if it is going to dictate my life. I know one day it will, but today is not that day and I don’t think it will be tomorrow either
Odd? No, I’m right there with you.
Dec 14, 2018 05:57PM pajim wrote:
You are not an odd ball. Some women shout it to the skies, others don't say anything to anyone. Most of us are somewhere in the middle.
I term my diagnosis something that "is not a secret but not a lot of people know". It's been that way for almost six years now. I've told a few people over the years but with that caveat they tend not to spread it around. In fact, a few people who knew have long since forgotten.
But I start 'lose your hair' chemo next month. So everyone is going to know. [I hate wigs] Them's the breaks. There are going to be some friends who are VERY unhappy that I didn't tell them six years ago.
Dec 14, 2018 06:20PM Novagirl wrote:
I’m exactky 1 week into finding out I’m metastic. I had a fractured spine and was waiting to see if it was MBC or osteoporosis. I was emotionally unstable during the waiting time, so who ever called me heard what I was going through. Now, colleagues are calling me and asking for test results. I’ve told some and I’m putting some off. At this point I can barely walk so those who see me figure it out. I wanted to keep it from family so they wouldn’t be crying at Christmas in front of my young son. At this point there is no hiding it
Dec 14, 2018 07:03PM Beatmon wrote:
Whatever works for you is what should happen. I’m an open book with my friends and former employees. I’ve been able to educate them concerning breast cancer and MBC.
If you are more comfortable keeping to yourself then that is the right approach
Dec 14, 2018 09:32PM Cure-ious wrote:
Pajim- Regarding the wig, can you not just say its for breast cancer treatment without disclosing the metastatic part? Or do your co-workers already know about the first time? And, if it is newly-discovered, you could have just found out about the mets, they wouldn't have to know its already six years (six years!!!)
Novagirl- it is inexcusable that there is not an occasional scan or blood test that could periodically test all cancer patients for mets, rather than waiting for our spines or femurs to collapse! And although it is awkward to field phone calls from friends who are hoping to hear its not metastatic, you aren;t obliged to tell anyone, if it was me I would just say its unclear, could be sevral things, and they are going to be waiting and watching, and hope they forget about it once they see that you look and feel much better. (abut your history, why were you treated with Herceptin for a Her2-negative primary, or probably it was Her2-positive ?
Anyway, I mostly wanted to say the treatments for MBC and quality of life possible with the cancer have and continue to change rapidly and you should have every expectation for a good long life- plus, the longer out into the future that you go, the longer you will get to keep going, as new stuff keeps coming out every year and these drugs are really potent. The general public does not understand any of this, of course (our doctors can barely keep up!) so its going to be hard on your if you have a lot of people around prematurely mourning for you, just as you are getting started on this path. You will find so much hope and stories of long-term survivors on these threads that once you catch your breath you may well find that you really can fully enjoy Christmas with your son!!!
Dec 15, 2018 12:16PM pajim wrote:
Yes I know I should be grateful for the six years but I'm greedy. I've pretty much lived my life as if it were unchanged. And therefore it was unchanged, if you know what I mean. But now I'm going to be a cancer patient.
I really like your idea of not specifying when the cancer returned. That'll work. I don't lie to people but if they don't ask they don't have to know.
Dec 15, 2018 12:28PM KatyK wrote:
There is no right or wrong way in how to handle your diagnosis and who you tell. Do what works for YOU! This is an individual journey. I have shared my stage IV diagnosis with many people and I post occasionally on caringbridge.org but I don’t talk about my cancer on FB. Even though my friends and family know we talk about all sorts of topics not just my cancer. And I appreciate the support from them.But honestly most people do not understand what stage IV or MBCmeans, unless they have personal or professional knowledge. I’ve been shocked about some of the questions - not being unkind just the ignorance. We still have a long ways to go for awareness in MBC.
Dec 15, 2018 11:56PM - edited Dec 16, 2018 12:57AM by Cure-ious
Pajim- No kidding, I'm greedy too!!! After six years, I'd like to be cured and done with treatments, thanks very much to all my docs, and see ya! The time is flying by. Are you considering clinical trials?
Here is a woman with metastatic TNBC who had to pay to get the chemo combo she wanted to try: https://www.dailymail.co.uk/home/you/article-64684...
Dec 16, 2018 02:33PM Lucia42 wrote:
I told my kids, their schools and some close friends although my children don't know about the metastatic bit. I did tell my kids that they can tell their friends and that it's not a secret, but so far none of the mums have asked me about it. No-one at work knows - I work with medical-legal assessments and have sadly seen a lot of employer bias when it comes to disease or perceived disability. Once I lose my hair I can't see how I'd hide it so will deal with that then. And yes the ignorance is amazing. I've had GPs ask me in amazement why I'm not having chemo or a mastectomy.
Dec 16, 2018 10:49PM dorimak wrote:
Thank you all for your insights. I truly honor every individual's choices but am glad to hear that I'm not the only one that decided to keep it to a small circle. As I reflect back to 2005, I'm remembering too that another motivation at the time was worry about work and health insurance. My then husband had a small business and I carried the benefits and I was only on contract that was renewed every six months. I wondered if they'd fail to renew my contract in case I got sicker. My take home from the responses are to honor myself and my choices and not be so worried about what others think.
DivineMrsM you nailed it with your visual. You have a way with words that made it kind of funny but you're so right about that image of the cancer patient walking their IV pole in hospital gown butt displayed. The reality is that more of us are leading normal lives.
The metastatic part is definitely not well understood. Also, if you look it up you read the average survival rate is only 26 months and less than 20% live past five years, and yet I see many many on these boards that are still going strong.
Sending healing love and blessings to all of you.
Feb 2, 2019 06:04PM hopeinchrist wrote:
I definitely don't think it's odd to want to keep your diagnosis, particularly the specifics of it, private. I feel the same way. I have a very small group of friends/family that know the details of what is going on with my health and I like it that way. Initially there were a couple friends who said they didn't understand why I wanted to be so private, etc... That was a pretty good indication to me of who I needed in my inner circle and who I didn't. I think everyone has the right to handle things in the way that makes the most sense for them.
Less people knowing specifics also helps when I have scans, appointments, procedures, etc. I don't have to answer a million questions from 50 different people on what is going on. I also don't have a social media account and I've asked those close to me to not post anything about my health in their social media either.
Feb 6, 2019 01:34AM Sue2009 wrote:
We all have reasons for not sharing our Dx. I decided to limit who I told what a couple of years ago. My dad has Alzheimer’s & Mom is his full time care giver. I have had liver mets for 9 months, but w/mom’s plate so full I do not discuss myself any more. I have 6 kids & a great husband, but we no longer discuss matters cause I get too emotional & they accept that. Sue
Mar 14, 2019 11:52PM LoveFromPhilly wrote:
Hmm 🤔 just home from a date that turned completely wrong once I disclosed my health situation. It was date number 5. I kept trying to figure out when and where would make sense to share...and was worried we were starting to get closer so only fair if I shared. It was weird and horrifically awkward and he ended up telling me he didn’t want to continue dating. 😢 I am okay, just annoyed with the whole situation. And kinda pissed off honestly.
I have dated other men that know and don’t seem to find it problematic at all. Such is life!!
Mar 15, 2019 12:16AM dorimak wrote:
LovefromPhilly, it's incidents like this that are just a difficult reminder of what this disease has taken from us. The reality is that there are so many women on in our situation who are going strong for years and are living fairly normal lives.. I envy those who have a supportive partner.
Mar 15, 2019 12:47AM LoveFromPhilly wrote:
yes dorimak! In my fantasy world I find an amazingly incredible partner who doesn’t mind that I go to the doctor so much and that sometimes I am tired due to the meds and who knows what else.
It really - from a grand perspective- itsnt hugely different than any other life, except the treatments and doctors appointments. I did tell him I felt discriminated against for having this health issue, and that it was very disappointing for me. But what can ya do???
I really respect Elizabeth Gilbert, who fell in love with her best friend who happened to be in her last months with cancer. And Elizabeth wrapped this love of hers up in her arms and loved her passionately and respectfully until she passed.
What a beautiful thing!!
Apr 25, 2019 05:51PM Charlotte46 wrote:
There is no weird way to deal with cancer. What is right for you IS right. Telling few people was my choice, but then I became aware that some of those closest to me need support of others. So, though I do not allow conversation to go to ‘cancer issues’ I briefly respond to what I deem appropriate questions and then end conversation. Assertively when necessary. Sharing my story is too precious and meaningful to do so with anyone I don’t love and/or trust. I am in no position to offer advice as I have a shit load of issues I struggle with...most of them are of my own making. I’m finding this path really challenging. Do what works for you with determination. My intentions are with you and all of us
Apr 26, 2019 01:48AM - edited Apr 26, 2019 01:48AM by Mycellsmutated
Recent de novo DX and just dealing with this issue - who to tell. At first I assumed I would tell everyone, especially everyone at my work, because it's a very supportive and close workplace and two guys who had pancreatic cancer recently have kept updating the entire (then 300+ now 400+) workplace of every treatment and progress in public intranet posts. However, after telling just my team and facing alternately their well-intentioned but pitiful responses and the blithe ignorance of other friendly people in my work who didn't know, I realised I liked going to after-work drinks where most people didn't know and happily talking about mundane things. Similarly, I went to a couple of social meet-ups recently and pretty quickly told some randoms because it just tumbled out that I wasn't drinking due to chemo (I hate to lie), and then had to deal for the rest of the evening with their pitiful reactions. I quickly realised that every time you tell someone new you have to console them and it's almost like 'going through the whole thing' again. Even just having to tell the ER doc when I went in with a fever that I was stage IV was a depressing ordeal of sympathy! People mean well, but every time you tell someone new it's the "omg I'm so sorry" and you have to spent half an hour explaining the magnitude of it and consoling THEM... why should I be consoling someone and bringing myself down when it's me who has to deal with this!
On a way smaller scale I went through something similar two years ago when I learned at age 30 I have androgenetic alopecia (gradual, irreversible hair loss) and initially told a lot of people because I'm an open person, then regretted it because people would keep asking about it as if it was a major health concern long after I'd moved on. I quickly appreciated it when people didn't know I was wearing a wig because it meant that the wig was doing its job. Similarly to being torn between wanting to advocate for MBC and wanting to live a normal life, I half-wanted to advocate to other young women how normal life is with alopecia once you get used to wearing wigs (because women with alopecia are comically devastated about it - you want to get angry after a cancer diagnosis? Go on a women's alopecia discussion board!) e.g. by going public on my travel blog and Instagram about the fact that I'm 'wearing hair' in all my recent photos and travels. But I knew once I did that and let the cat out of the bag it would forever take away the opportunity to meet new people (especially guys - I'm also single) who didn't know about my hair loss and have them be unable to guess due to my realistic hairpieces. Anyway my point is that although alopecia is nothing compared with cancer (what a funny joke that I was so stressed about it two years ago - I can't even tell you how stressed I was), going through that experience of telling some people and then not telling others helped inform my current attitude of tell some but not most.
May 9, 2019 09:37PM gonegirl wrote:
8 years in I'm finally realizing don't tell people. I go to AA and told folks in one meeting and now several tend to respond to me through the cancer lens. One woman I've told to stop it, but not sure she'll hear me and really stop. Now I just say I'm dealing with a serious illness. The word cancer scares the crap out of people and the reactions tend to be based on seeing someone die quickly of cancer or what they see in movies. I'm no different than anyone else dealing with an illness. I am not that illness. So frustrated.
May 9, 2019 10:33PM Nkb wrote:
I didn’t tell many people about the first cancer diagnosis and many fewer about the Mets or the progression with Mets. The trick is to tell enough people to get enough support and or get a therapist too.
On another note- I went to a friend’s bday party - a hike with a bunch of women most of whom I did not know. They had so much heartache ( children or partners with cancer, or other serious illnesses, husbands died suddenly, etc I didn’t reveal my cancer- I didn’t think it would support me in any way- listening to other people’s troubles was good for my perspective and I enjoyed being the one who just listened supportively. Do what works for you- remember many other people are suffering too.
Jun 7, 2019 09:33PM dorimak wrote:
Nkb, so true. We forget so many are suffering too. My lawyer comes from a family of 18 siblings! He's about my age 60sh. He told me ever one of them are dealing with their own heartaches and pain.
To your suggestion of keeping a handful of people up to date that is wise. Today I got some bad news where it appears that stereotactic radiation to one of my brain m ets appears to have failed and it will be June 16th. before I see my RO. I texted my handful of people in my support circle. Immediately my phone blew up. There were only five people. But long story short the best part of my day was spent either on the phone getting logistics for appointments and answering questions and rehashing results etc. It reminded me of when I was originally diagnosed in 2001. I spent my day and night on the phone. I had a five year old who got lost in all the shuffle. People mean well but there was no value in spending hours and hours on the phone rehashing and answering questions to friends and acquaintances. Some helpful. Some satisfying their curiosity. when I was on the phone to one the others kept calling and calling and texting and asking me to call them. I was on the phone with my now adult son and we couldn't have a quality conversation. I'm totally exhausted and emotionally drained. I am just going to keep a lid on things and need to maintain boundaries even with those close to me because it's not helpful to spend my day answering texts and calls to where my entire time is consumed with cancer.
Jun 8, 2019 01:17AM Nkb wrote:
Dorimak-I am so sorry to hear about your brain met rebelling against the Radiation!!
I have also noticed that when I hear bad news I immediately want to tell some people who know about my cancer ( i even feel like I am being dishonest not to tell) but as time goes by I feel less urgent to update them and then realize it’s probably better that I didn’t. It’s like all you get is a moment of concerned drama- then you are all alone with it again. As my DH says when someone says how are you- it’s ok to say “fine” in this moment you are fine.
Decide if it will help you to tell who you tell- ie you feel better afterwards and supported. I have a friend who is a psychiatrist who told me that when she tells people bad news about herself she tells them what kind of response she wants. For example- I don’t want pity or advice, I just need you to make dinner tonight, or take me to the hospital etc. Then they know what to do and you are not disappointed in them.
Hoping the news is after all good- I’ve had two friends that they thought brain Mets recurred after radiation and it was just “mush” of dead cells left over.