Topic: Choosing to keep DX private - Am I a weirdo?

Dec 13, 2018 06:26AM 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 10:43AM - edited Dec 13, 2018 10:46AM 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 04:35PM 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 14, 2018 04:43PM 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 10:07PM Sadiesservant wrote:

Interesting discussion.

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 10:57PM 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 15, 2018 12:03AM 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 15, 2018 05:16PM 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 16, 2018 04:56AM - edited Dec 16, 2018 05:57AM 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 17, 2018 03:49AM 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.

Dori

Feb 6, 2019 06:34AM 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