Are you ever free of breast cancer?

@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.

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.

@mistymar what was your Onco score and lingering side effects if you don’t mind?

@ebabor oncotype was 28. Not high but the figures I got from 2 doctors was chemo would reduce chance of distant metastasis by 17-20%. Less than double digits I wouldn’t have done it but this was in that rock/hard place area. I still have low lymph count over 2 1/2 years later so may be permanent damage. Messed up my mouth big time - still get sores and have had 4 crowns since then. I have no appetite and lost a lot of sense of taste still. Still feel less strong than before - can’t do what I used to. Did get hair back (good) but thinner and of course ai worsens that. Overall, I’m not doing bad, it’s just all this low level stuff that could be residual chemo, could be ai, could be age.

I am almost 71, diagnosed in 2021. Two lumps in left breast, once scores zero and ten. No chemo recommended. But surgeon said left breast “needs to go.” I chose a bilateral mastectomy. Told I needed radiation because of some cells in lymph nodes but I declined. Was estrogen positive, also declined letrozole. By 2024, stage 4, netastatic breast cancer in lymph system and bones. Been on Letrozole since November of 2024. Lots of unpleasant side effects from Letrozole. I don’t have much choice of discontinuing an AI ever. Had surgery in left thumb and right thumb, middle finger and little finger for trigger finger due to Letrozole side effects. Ugh.

@penny21 Sorry to hear about your worsening symptoms and the cancer becoming stage 4. I agree that a lot of us don't have a much choice but to stay on AI meds.

Please stay strong!

@ebabor oncotype was 28. Not high but the figures I got from 2 doctors was chemo would reduce chance of distant metastasis by 17-20%. Less than double digits I wouldn’t have done it but this was in that rock/hard place area. I still have low lymph count over 2 1/2 years later so may be permanent damage. Messed up my mouth big time - still get sores and have had 4 crowns since then. I have no appetite and lost a lot of sense of taste still. Still feel less strong than before - can’t do what I used to. Did get hair back (good) but thinner and of course ai worsens that. Overall, I’m not doing bad, it’s just all this low level stuff that could be residual chemo, could be ai, could be age.