What Do You Wish You’d Known Earlier in Your Breast Cancer Journey?
We’ve all had those “I wish someone had told me…” moments — whether it was about treatment, emotional health, relationships, body image, or navigating the healthcare system. What’s something you learned along the way that you wish you’d known earlier?
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I wish I opted for a double mastectomy when I was first diagnosed with Triple Negative at age 40. I probably wouldn't have gotten a new type of bc two more times
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Maybe it's not what I wish I'd known, but what I wish the medical field knew when I was pre cancer. My first dx was stage3 in 2012 at 46yo. For years I was told that family history didn't matter, I was too young to get breast cancer, I just have dense breasts, and my favorite when I told a nurse that I wished they would just remove my breasts before I got cancer and she said, "oh they would never do that." After constantly hearing these things I began to get lax about it and at the time I was too young for routine screenings. When I found the lump it was around Thanksgiving and I needed to track my cycle so I could schedule a pap for the same appointment. I didn't sense any urgency because I had found so many lumps since I was 15yo. I was finally able to get to my pcp the following April. By the end of February I felt that something was different. It didn't get larger and smaller with my cycle, it didn't hurt, and one thing I remembered from my pcp was that most cancerous lumps are above the nipple and between the nipple and the armpit which is where it was located. I didn't even notice the raised marks under my arm that felt like a string of Christmas lights. I knew nothing about lymph node involvement. I remember the day like it was yesterday. I had a cold and my doctor asked if that was my main concern. I said, "no, I think I have breast cancer." I was already prepared for the worst and we immediately checked the lump. He called the surgeon in the building next to his, did my pap and sent me for a biopsy. They had to use an open needle to get a sample. I was then sent to the hospital for a mammogram and I told them that I had an eye exam scheduled that I was in danger of being late for. They called the office to speak to them directly that I was at the hospital getting tests and the eye exam office acted like I was causing them problems on purpose. I think I also had a breast MRI before I left. I was scheduled for the oncologist in the afternoon and came back to meet him and discuss treatment. I was scheduled for the plastic surgeon another day. I'm glad they take things more seriously now and that many women are spared from having their concerns downplayed, but honestly I might have been spared this whole ordeal if elective surgery was an option sooner. I was lucky to have a 10 year remission, but in 2022 it came back with a vengeance throughout my skeleton, in my lungs and couple years later and finally in my liver as well. I'm still hoping for a remission of my mets, but so far it's not happening. I'm almost ready to stop treatment because I've been on 10 different things in 4 years and all I have to show is side effects. Sorry I rattled on so long, guess I had more to say than I thought. Best wishes to everyone ❤️
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A full plan of treatment would have been nice to have. When I started this journey with breast cancer I had no idea of what the treatment would be like. I did not know the different types of cancer providers; surgeon, medical, etc. I also had no knowledge of hormone treatment; like Anastrozole.
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Hi @spokane79 , welcome to the community, and thank you for adding your thoughts here.
And a big thank you to everyone who has shared in this poll so far. We really appreciate you taking the time to participate and help support one another.
Sincerely,
The Mods
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I wish I had known how bad my original oncologist was so I could have found a way to change sooner. By the time I was able to change I was almost through treatment and I believe some of the decisions I made were wrong because of the lack of info I received from him. I guess I just wish in general that I had I known how little support I would receive from the cancer clinic where I went and am still going because I don't have the energy to drive several hours away to another town. Really feel like this entire experience has made me distrust the medical profession. I'd say to anyone, if your gut tells you something isn't right, go with your gut.
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