Are you ever free of breast cancer?

Posted by lesliek808 @lesliek808, Jun 2 4:47pm

I had a single mastecomy (left) in March 2023 after 3 tumors found through mammogram.

3 years later, I'm taking Exemestane and doing all the exams I need to do (self exam, yearly MRI, yearly mastectomy).

Since the cancer was estrogen positive, I need to continue on Exemestane for 7 more years. I've read that estrogen positive breast cancer can return after that.

So are we never in remission?

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Profile picture for pat9892 @pat9892

@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.

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@pat9892 thank you for sharing this. i keep asking and no one has given me a clear answer.

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Profile picture for mistymar @mistymar

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.

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

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Profile picture for ebabor @ebabor

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

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@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.

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Profile picture for mistymar @mistymar

@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.

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@mistymar thank you for sharing. I’m 74 and Onco score of 26. My MO wanted me to do chemo but I declined. I was afraid of serious long term side effects. Did radiation 16 rounds and done. Not much side effects currently but I just finished last Thursday. Will start AI beginning of July. Praying for little side effects. Prayers for your strength and recovery

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