Are you ever free of breast cancer?

I've been wondering about that, too. I hate taking an AI (I'm on Anastrozole), but I'm paranoid about stopping it when it's time. I'm curious to hear what the rest of the group thinks.

Right now, I don't think I'll ever be cancer free, but as long as I take care of myself and stay on top of my rechecks and having my lab work done and my CA numbers stay good, I'll stay in remission. Because I'm BRCA+ I have a gene lurking inside me I can't control that can start to regenerate and restart the journey. But I'll do what I can, not to focus on it too much.

I’ve often thought the same. I guess that’s why they talk PTSD on so many of us. My doctor is only doing 5 years of ai - said research show no difference between 5 and 10 years (and this was on first visit, before staging etc). But then what happens after that. While I have no desire to stay on this stuff forever, I do question if stopping will allow new tumors to develop and then will really have QOL issues because of age. Don’t want to go through this all again. I was oncotype positive so did go through surgery, chemo and radiation and damage from that is still lingering. Now all the side effects of ai and how many of these will become permanent. While I know it’s controversial, my tumor markers have never gone normal and continue to increase periodically to pre-surgery levels (but tests still negative - just hate having to go through them every 6 months). I’m just rambling now so will stop but will monitor this closely.

There are no easy answers & everyone's story is so different. Really big factors are type of breast cancer (ILC, my type, tends to lie dormant & recur many years later), age at diagnosis, size of tumor/tumors, lymph node involvement, etc. Also important are overall health, weight, diet, activity levels, etc. I'm considering meeting with a new oncologist, just to get a different take on my situation. But yes, it's definitely a puzzle & we each have to seek the best guidance & advice that we can.

The moral of the story? Each of us is an individual body; we respond to what are identical diagnosis in unique ways. It's life. Statistics can tell us what the average, the median, the typical outcomes MIGHT be.

Life is a crapshoot and each of us is doing the best we can.
Which is why Connect is SO beneficial! You tead about someone who has a worse reaction, a better reaction, the same reaction.
Just live the best life you can manage, the best way you know how, with the best information you can gather. Look forward without regret knowing you made the best decision you possibly could with the information at hand.
Because we ALL KNOW advances that are standard 10 years from now, are a tiny spark of an idea in the brain of a today,s budding researcher.

Hugs to everyone as each of us learns to accept what life deals us at our own individual pace. ❤️

These are all great questions. I think it’s unfortunate that our oncologists can’t offer clear and conclusive answers. In my experience doctors are vague and avoid answering questions in a direct manner. They will make positive remarks without specific details. The oncologists I have seen don’t use common terms like remission or no evidence of cancer. I think there’s a reason for the difference between how oncologists speak about cancer now. Possibly they understand that cancer doesn’t behave in predictable ways. My surgeon said they don’t have any way to know if stray cancer cells are in our bodies or not. So I never say my cancer is gone. Remission seems like the best way to describe my condition.

@mistymar My survivorship doc said I may want to consider Raloxifene after stopping tamoxifen. She suggested my endocrinologist may consider it a good med for my bones (osteopenia) but it also has breast cancer reducing action just not as strong as AIs and tam. Raloxifene does not increase uterine cancer risk and has been shown to be better for brain function. I know I’ll feel safer taking something when I stop tam.

@dmr4ever your oncologist may be misinformed. There are numerous ctDNA tests that can pick up whether there are stray cancer tests in the body.
Do you go to an academic center? If yes, your doctor may be misleading you for reasons known only to
him.
If not, google ctDNA tests for whatever type of cancer you have.
Good luck!

@dmr4ever you are correct. I don’t like the comment but I know it is true.

I asked a substitute radiologist during my second week of treatment, while the regular rad. onco. was on vacation, when “this (radiation)” was all over would I be cancer-free? He just shook his head “no” and said I would never be completely free. It was devastating to hear but true.

At that point in time there was no way to know if any rampant cells were in my body.
I have great hope that someday there will be a test or technology that will determine that. I just take a deep breath, gather my inner self, and resolve to fight onward.

@bpknitter53 Im 6 years post treatment for breast cancer, considering it was scans that found the first cancer I couldnt feel it I worry if it comes back the same way.