Poll: What surprised you most after being diagnosed with breast cancer?

moderators

After a breast cancer diagnosis and the whirlwind of treatment calms to a breeze, there can be pressure to move forward. To feel grateful. To seem okay again.

But many people in our community describe something more complicated: learning how to carry a diagnosis while still trying to stay connected. To themselves, to the people they love, to the ordinary life around them. Someone trying to feel comfortable in their body during or after treatment. Someone whose relationships have shifted and haven’t quite shifted back. Someone surprised to find the hardest part wasn’t the part everyone warned them about.

Not everything resolves neatly. Not everything has to. But you’re not carrying it alone.

So, tell us: What surprised you most after being diagnosed with breast cancer? Take the poll below and elaborate your answer in the thread.

sculdermul

How isolated and disconnected I’ve felt, even around people I love

The severity of aromatase inhibitors therapy side effects shocked me. 18 months of significant health problems, specialist, tests, PT/OT and huge medical expenses all related to the AI side effects until oncologist & I decided it wasn’t worth the collateral damage it was doing to my body. I thought I’d have hot flashes, weight gain & joint stiffness that I could persevere through. Not endless visits to specialists & an ER visit.

argon

Feeling pressure to act “back to normal”

still carrying some fears in my day to day Things like doubting my energy levels to do even exiting things like travel.

owlengager

The impact of aromatase inhibitors! .…both while taking them and then whether the day to day damage will be permanent. I had my first lumpectomy 20 years ago and, aside from Lymphedema, I sailed through my five years of arimidex. Not this time. My oncologist prescribed 2 different AIs, and the second's side effects were reven worse than first. I decided, along with my oncologist, that I would discontinue AI's. Now, after several months the unpredictable extreme pains substantially have diminished, brain fog has lifted and I'm again responding positively to exercise... But too many side effects still pop up & are still lurking unresolved. I lack confidence they won't get worse.

planbattheedge

How often I think about recurrence or progression

I was diagnosed late March, and just had surgery yesterday. I think the thing that surprised me the most about my diagnosis is the shock that I was Actually diagnosed with Breast Cancer! I’m the healthiest person I know…. Every single thing that they say that we are supposed to do after surgery/treatment - I already do - With respect to lifestyle. So. In order to prevent recurrence? What should one do if I’m already living the healthy life and ticking every box?! Any suggestions? (Optimal weight, Fit, power walk 5-15km/day, don’t smoke, drink, do drugs, eat healthy, take supplements, enjoy morning sun, eat all that’s on the list of what we are supposed to eat in order to be healthy, don’t use chemical in my body, or in my home). Anyone else in this situation and is trying to get their head around what to do about preventing recurrence?!

sofasurfer45

The impact of long-term side effects, like fatigue and chemo brain

I am six months post radiotherapy (45 yo) ending and my fatigue is worsening. I've had blood tests to see what's what, nothing yet. I have to plan my days/weeks around naps and working out how much will tire me out and do less with my partner for example. I've quit my p/t job as they couldn't accommodate a reduction in hours (small organisation) so I felt I had no option but to quit. I feel like it's one more thing cancer has affected/taken from me. Concentration and information retention has really suffered. I lose track of convos, what I'm saying, I can't find the word I want to use and this is the brain fog I guess. Rant over.

moderators

Thank you to everyone who has shared responses here. Keep them coming 💛

And a special welcome to our newer members who’ve joined in. We’re here with you, and we appreciate you being part of this space.

Sincerely,

The Mods

missymoo

All of the above - plus how naive and uninformed I was. From believing when I was told I was low risk, to understanding what "treatment" really meant, to thinking that the medical community "had my back". It's a whole new world on the other side.

livinglifenow

What surprised me the most, both times I was diagnosed with BC, was how much treatment they wanted to give me, but were in no hurry to get any of it done. If I really needed something that badly, why was it taking months to get it scheduled? Didn’t seem quite right to me.

amh7838

How isolated and disconnected I’ve felt, even around people I love

I'm back here after a long break. The loneliness and isolation, especially with those closest to me (husband, daughter, mom, sisters) is heartbreaking. Coupled with the lack of support from the medical community in general. I'm in this no-woman's land and it's just really awful.