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Jan 11, 2022 07:20AM
Jan 12, 2022 10:19AM
So sorry you have joined us here. I'm also a recent member of the Stage IV club, the worst club ever. I was diagnosed in November and I'm still figuring out who and what to tell too! My main piece of advice is to wait for the initial shock to wear off before deciding. Tell only who you need to tell and depending on the person, only what they need to know right now. Later on after you get a treatment plan in place and your brain starts to settle into your new norm, you'll be thinking more clearly and will be able to make better decisions. Like others have said, once you tell people you can't un-tell them. I'll share what I've done so far in case it's helpful for you.
When I first started experiencing suspicious symptoms, I told no one. Once it became clear that the most likely explanation was cancer, I told my closest parental-level relatives, several of whom previously had breast cancer. At first I didn't want to tell them until I knew for sure, but after a few days the strain of not being able to talk to anybody became too much so I told them. After cancer was confirmed, I also told my boss everything. But I have The World's Greatest Boss. She was my boss the first time I had cancer, she helped our team through losing another coworker to cancer, I trust her completely, and like I said, she's the world's greatest boss. She shared the news with the inner ring of coworkers I interact with the most and that's it so far. Nobody else up or down the chain knows. It would have been possible to get away with sharing nothing, but these are also people I trust and some were there for my last cancer treatment.
I waited until after Thanksgiving to tell my closest siblings. I had JUST found out and didn't want a super uncomfortable holiday gathering where everybody was freaking out and I had no answers for them because I didn't have a treatment plan yet. But after treatment was decided I told them and after they knew, they told their respective spouses and families. They also shared it with a few important mutual friends that I wanted to tell. We decided NOT to tell my 90+ grandma for now. Her short-term memory is terrible and the stress would affect her health, and she won't be able to see any changes in me. If changes become obvious later, then we'd probably tell her my cancer was back and not much else. As far as I know the rest of the extended family doesn't know yet. I wouldn't really mind if word spread though.
With my first cancer diagnosis, I shared an update on Facebook with my entire group of friends, family, and acquaintances after I finished chemo and surgery. I told them everything I wanted them to know and what I thought people would have questions about. I haven't decided yet if I will do that this time, partly because metastatic cancer is not well understood and I don't want a bunch of pink fluffy cheerleading, partly because there's nothing they can do right now and nothing I need, and partly because I don't want people to act strange or treat me differently. At a minimum, I plan to wait to see if my treatment is working before deciding to tell more people.
Telling people is exhausting!! Consider telling only a few trusted people and have them share the news for you, like I did with my siblings and boss. I'm trying to restrict me sharing the news myself to only people with no connection to my family or other friends.
This isn't for everyone, but when you have to tell someone yourself, consider sharing it via written word: text, email, dm/message, letter, etc. That way people get the initial shock out of the way without you having to absorb their reaction on the spot. You are also able to share only what you want without fielding a bunch of immediate follow-up questions or having to help them deal with their feelings. I did this but my friends and family are mostly text people not phone people, so it wasn't unusual or weird. (and even if it WAS weird, I don't care. It was the best way for ME to share MY news)
Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good.
3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2-
5/14/2017 AC + T (Taxol)
12/8/2021 Faslodex (fulvestrant)
12/13/2021 Piqray (alpelisib)
IDC, Other, Stage IV, ER+, HER2-
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Lymph node removal (Left); Mastectomy (Left)
Whole breast: Lymph nodes, Chest wall