Community Member
9 days agoI’m 43 years old I have had ER+HR+ DCIS with Lumpectomy followed by 20 rounds of radiation therapy, finished in September of 2025, I now have made the decision to get a full hysterectomy next Tuesday February 17th as a preventative measure along with taking the 5 year preventative pill for post menopausal women called Anastrozole which I am now experiencing side effects that are awful..My bones, joints, and breast are in constant pain. I am an only child and my mother passed away from stage 4 breast cancer which she beat but another cancer spread to her lungs and she passed away at 49 years old, I was her caregiver and seen what cancer can do so I took the genetic testing which came back that I didn’t carry her genetic gene yet I continued to stay on top of my 3D mammograms and that’s when I got the dreadful call that something was found in my milk duct of my left breast. DCIS in situ contained stage 0-1 Very grateful that I caught this early Dr’s saying “it’s the best cancer you could have”, What does that mean!? I prayed and prayed “God I don’t care how I die, I am a believer, but Please don’t let me get cancer”, I hit the floor hearing that “C” word, first thought that I am going to die. PTSD from watching my mother die from this disease but now I am a survivor and very great full but no one tells you what goes along with survivorship. You ring that final radiation bell the doctors leaving you to believe that your finished, it’s over, you’re cancer free! Why do they have you do this? Why don’t they tell you what follows after treatment? They tell you what to expect during treatment but why don’t they tell you that your journey is far from over? I believe it’s more for your support team to see you ring that bell because I am still in the journey of follow up appointments, more surgery, more medication, more scans…This part of “treatment” for some reason the doctors don’t tell you about and that frustrates me to the core! Then the questions from family, friends, co workers…Uuggg Yes I’m am out of active treatment but my body, mind, and nervous system has been shaken and just getting out of bed in the morning is a struggle when your body hurts and I can’t seem to shake this fatigue! Yet people see that I’m “fine” on the outside, scars are healed and I am slowly getting back to where I once was but navigating this survivorship is everyday! I’ve exhausted myself trying to get back the “old me” and am now realizing that the “old me” is no longer there this “new me” I’m still trying to find. Anyone else feel this way? I’m in active support therapy but I don’t think anyone will truly understand what I am going through unless they’ve went through this or are going through this. So I’m reaching out on this platform to see if I can get some kind of support someone please give me feed back so I know that what I’m going through I’m not alone or crazy or over exaggerating my symptoms. Can anyone relate? Brain fog, fatigue that doesn’t go away with sleep, ache joints and bones etc.
Community Member
9 days agoCancer survivorship often brings unexpected challenges that many people don't talk about openly - the physical side effects, emotional adjustment, and the reality that recovery is a gradual process rather than an instant return to "normal." The feelings described here - brain fog, persistent fatigue, joint pain, and the struggle to find a new sense of self - are experiences shared by many survivors in this community. It's completely understandable to feel frustrated when the complexity of survivorship isn't fully explained upfront, and reaching out for support from others who truly understand this journey is such an important step.
Community Member
9 days agoI think we are all feeling the wsy you feel. I also had hormone + DCIS, surgery, radiation and am on anastrozole. Due for my second post surgery mammogram. It’s a new normal. I don’t feel immortal anymore.
Community Member
9 days agoYou're absolutely right - the survivorship phase brings so many challenges that nobody prepared us for, and I found it really helpful to ask my care team specifically about what to expect in the months ahead so I could plan better for things like managing fatigue and side effects.
Community Member
4 days agoI had similar cancer as you, but I opted for tamoxifen over the other hormone blockers. Tamoxifen has way less side effects. Too many people are on which you’re on and quit before the five years are up because of the side effects. Possibly talk to your doctor about switching to tamoxifen.
Community Member
2 days agoAs someone who lost her mom similarly, mine lived 20 years after the first diagnosis; but ultimately passed from cancer spreading everywhere, I’m in the beginning stages. I have LCIS and Atypical ductal hyperplasia. Had a lumpectomy 2 years ago and now it’s back. I’m considering my options and meeting with surgeons at 2 different places starting next week. Going through perimenopause at the same time doesn’t help!
Community Member
2 days agoI also had DCIS stage 1. I had a lumpectomy in December. I start radiation next month, I think for 3 weeks. I'm going on tamoxifen and if I don't like the side effects I'll quit it. I would suggest asking about tamoxifen instead of what you're on. I won't go on that because of the side effects. I'm 64, raised my kids, I'm a Christian and I'm not afraid to die. I'm picking and choosing my battles based on my quality of life. If nothing else I can tell you, you're far from alone in this. I don't know if it's possible to DM through this app, but I'm open to that.
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