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

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 06:52AM gonegirl wrote:

Is there a like button here? I want to like what you just wrote, divinemrsm

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 02:27PM JFL wrote:

LovefromPhilly,

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 05:18PM 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 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 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 12:28PM 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 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.

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.

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 12:47AM 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 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 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 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.