Addicted to looking up breast cancer related info, feeling anxious

Are you saying you had breast cancer and now in remission, completed treatment?

Yes, NED, I guess. Lumpectomy in May 2025, Radiation in July 2025, first scans after treatment in February of this year were clear. I need both a mammogram and an MRI because my cancer was occult on a mammogram. I did have some issues about what kind of surgery that I needed and the 2nd opinion that I sought from Johns Hopkins resulted in an upgrade from DCIS to IDC. But that’s behind me now, I guess. At first I only joined this group, but in the last several months, I joined several Facebook groups for breast cancer patients and can’t stop reading all the posts, staying up late, and spending loads of time. I just want to know if anyone else ever had this issue.

@ruffianfan55 Yes, I’ve had a similar response. You are not that far from completing treatment and staying engaged with “everything breast cancer” is probably pretty normal.

I was diagnosed in 2022. I spent immense amount of time reading about bc treatment and outcomes and this forum. As time has passed I’ve spent less time. Although I had a second surgery in 2024, purely reconstruction, which got me back to spending more time, and then another pre-cancer concern, not bc, that spiked more intense reading.

Hormone therapy can reduce energy and cause low moods - which I think was part of the reason I got so caught up in reading the forum and research. Getting up and engaging in life was more difficult to do. So it might be a side affect of the AI causing you to choose an activity like reading forums vs activity.

I can relate because I was diagnosed with an aggressive breast cancer four years ago (the tumor pathology has never been definitively determined) and here I am on Connect every morning thinking and reading about breast cancer! I don't know if this will help, but I've tried to put my interest (at times overly intense) to good use in several ways--being on Connect, writing about breast cancer, and informally talking to others if they ask for support. You might consider how you can bring what you know out into the world. There are lots of breast cancer volunteer opportunities and fundraisers, and some folks knit hats for patients in chemo etc. Since research speaks to you, you might consider reading some books on breast cancer and creating a list of what you found most helpful to share with others. Of course in the past four years I've also focused a lot on building up other interests so I'm not living in obsession. But maybe there is a positive outlet for you? A therapist helped me a lot and I hope yours will you. I think this is a balancing act--some put breast cancer firmly behind, some need to integrate it more. Keep in touch if you feel like it about how your process is going.

I read Mayo Connect almost every day and I'm learning a lot. I'm 77, had IDC surgery and radiation March 2025. Put on Anastrozole for 5 years. Having a hard time on this drug. I've had osteoarthritis for years (knee replacement), spinal stenosis and esophagitis. Dexa scan shows osteopenia. Apparently the long term use of Protonix causes bone loss, but my Oncologist didn't mention that. Also learned about the benefits of calcium hydroxyapatite for bone density. The joint pain is so unbearable that I just stopped Anastrozole. Also switched from Protonix to Pepcid. I get more good information from this than my doctors who don't seem to look at me as a whole patient or bother to check my medical history. Keep reading and sharing.

I think it’s normal- I was there too- this is the only site I use and just look at topics I can help someone or something that is pertinent to me. I unfollowed and deleted the rest - it helped me mentally - my brain not “ harping “ on the subject of breast cancer

Oh God yes!
I spent so much time reading about treatments, reoccurrence, survival rates. It took up so much of my life.
Then I realized that maybe I wouldn’t make it to the magical five year survival target and I was missing so much, worrying I was going to die!

So I stopped doing that and you know what? I eventually stopped worrying.

My sister was a 20 year breast cancer survivor, diagnosed in 2002. I had asked her how she got through the anxiety. She said, she just lived her life.

She also wished a wish for me. She said she wished for me the day when I realized I hadn’t thought about my cancer all day, all week or all month.

Even before I was done with my Anastrozole, I had several days and weeks when I never thought of it.

Yesterday, my phone highlighted my photos from years past. Guess what photo popped up? The photo of me as they wheeled me into surgery for my lumpectomy six years ago! I hadn’t even remembered that”anniversary”.

So for you, my sister in this journey that no one wants, I wish you the day you don’t even think about your cancer anymore!

Go live and enjoy your life!

I don’t think it’s an obsession. You will eventually get tired from doing that. Then one day you just put it on the back burner and move on. It’s bc, not just an illness that once you’re done with treatment you’re free of it. I hope that you will stay with this Mayo Clinic to share your experience and your knowledge. Wish you all the best.

I am in the same boat. I wake up in the middle of the night and doom scroll. Put my stats in all the calculators on line for recurrence odds and do the same things over and over again. My therapist has not really been helpful in this regard. I can’t quit the FB groups either. I’m 3.5 months out from lumpectomy and finished radiation about a month ago. I’ve decided against AI’s so my new obsession is now on THOSE FB groups. Also scared to death of recurrence or new primary cancer in other parts of the body (“if my body made cancer once it can do it again…’) I’m a mess. Sorry you’re struggling!!! I feel like I didn’t help at all and just dumped all my sh$&!

I keep telling g myself… you cannot “know” your way out of this. Sometimes it just helps me to breathe a bit. It’s not good or bad it’s ever present. I’m an oncology data specialist and abstract data on reportable cancer so the ability to focus on my work has been bananas as is my down time and my treatment time. A piece of the research/data obsession comes from a deep knowledge about cancer and the other part is the betrayal of my medical providers who missed this for five years. I beat myself up sometimes(until I realize that’s what I’m doing) and I lack trust in medical providers so my constant researching is trying to protect me from a bad provider or a busy provider who doesn’t see me as a person. I also have a zero blaming tolerance and too many people say I thinking things or blaming things so knowledge is a better slap back for me than a literal slap back. My heart goes out to every woman who is trying to understand and manage this tsunami of a disease. Learn things, write them down- think about what you read check new info and “suggestions” in pubmed and real studies and keep pushing your providers to explain and help- this is your life it’s ok to fight for it. keep going. Cope comes in lots of forms and knowledge is also better than some of the other options. Be kind to yourself .