Local recurrence - understanding terminology

@windyshores Thank you, so post-mastectomy if the cancer recurs on the same side, to be a "local recurrence" it would between the skin and muscle? Its confusing to me because I was told a recurrence in the skin (anywhere on the body, including the post-mastectomy skin) is stage 4, but post mastectomy there really isn't much other than your skin over your muscle left. Perhap the difference then is if it came back IN the post-mastectomy skin (stage 4) vs just Under the post-mastectomy skin (but not in the muscle), which is "local" recurrence?

Thank you @windyshores and @californiazebra . The reason for my asking is trying to truly understand my risk of BC in the other breast. I've been told various numbers by different doctors for risk of new primary and that treatment for the existing BC lowers the risk of a new primary in the other breast. That makes senses to me, but I'm trying to better understand my overall absolute risk of getting any cancer - either recurrence from the initial primary Or a new primary - in the other breast. The docs sometimes skew things for this or that type of recurrence risk but at the end of the day, I just want to understand my remaining risk of Any BC occurrence in the other breast, whether its called new primary or local recurrence from original primary, etc. Perhaps there is no easy way to figure that tho.

Thank you @windyshores and @californiazebra . The reason for my asking is trying to truly understand my risk of BC in the other breast. I've been told various numbers by different doctors for risk of new primary and that treatment for the existing BC lowers the risk of a new primary in the other breast. That makes senses to me, but I'm trying to better understand my overall absolute risk of getting any cancer - either recurrence from the initial primary Or a new primary - in the other breast. The docs sometimes skew things for this or that type of recurrence risk but at the end of the day, I just want to understand my remaining risk of Any BC occurrence in the other breast, whether its called new primary or local recurrence from original primary, etc. Perhaps there is no easy way to figure that tho.

Hi @lilacs777
So I even have BC recurrence and can't answer all your questions because it is confusing and even my oncologist has thrown out different scenarios. I had a double mastectomy in 2013 (I think I accidentally put 2011 in another post). Stage 1, 7 mm found on routine mammogram, ER/PR+ HER2- with BRCA2 and CHEK2 mutations (although we didn't know about CHEK2 at the time). I had the DM and because I would be a slow metabolizer for Tamoxifen, I was advised there was an alternate med, but my oncologist said I had almost no chance of recurrence so skip the hormone therapy due to potential side effects. I didn't have reconstruction, no regrets.

7 years later I found a hard, immobile painless lump on my chest that felt like a marble. It was recurrent BC in the chest wall and muscle. No mention of skin as you asked above. It was 1.2 cm. I am listed on all paperwork as having advanced breast cancer that is incurable but treatable. My cancer is 3x as aggressive as the original with the Ki-67 at 50% this time and even higher hormone scores. My onco told me there is a small possibility it's new cancer, but most likely recurrent. I had the tumor removed including part of the muscle, there was a positive margin in the muscle, had 37 radiation treatments and have now been on Kisqali and Letrozole for 4 years. No sign of BC on my every 6 mo. CT scans, but then again it takes millions of cancer cells together to show up on a scan so who knows. The cancer came back so aggressive, he thinks cancer cells likely got away before the surgery and we also don't know if radiation took care of the positive margin. I can't do chemo because of my rare hereditary neuropathy, but he doesn't think chemo wouldn't work on my current cancer anyway. Bottom line is, I'm still here, doing well, enjoying life. All my challenges are from the medication side effects, not the cancer itself. I never had any cancer symptoms other than the lump both times (first time I didn't feel it).

My original surgeon who saw me 20 times in the 7 years before my recurrence acted surprised I wasn't on hormone therapy and said it would have cut my recurrence risk in half. She knew all along I wasn't taking it per her oncology partner's advice. If I had to do it over again, I would do the hormone therapy. I hope my current BC meds continue to hold any remaining cancer at bay for a long time. The plan is stay on the same meds indefinitely as long as they work. I have a whole collection of medical issues as do many people on Connect including another cancer, but life goes on. Medical stuff takes up a lot of time each month, the new normal, but I use the other time to live and enjoy life!

My best advice to you is take any necessary precautionary steps to avoid and identify recurrence, do your monthly self-exam, and then just live your life and put cancer thoughts on the back burner. Don't let worries about the future steal today's joy. I start every day saying, "Today something good is going to happen to me and through me. Who can I bless today?" It makes me notice the smallest blessings each day and notice opportunities to bless others. It's a great way to stay upbeat and make every day count. I hope my story helps you in some way. Many blessings, Zebra

Hi @lilacs777
So I even have BC recurrence and can't answer all your questions because it is confusing and even my oncologist has thrown out different scenarios. I had a double mastectomy in 2013 (I think I accidentally put 2011 in another post). Stage 1, 7 mm found on routine mammogram, ER/PR+ HER2- with BRCA2 and CHEK2 mutations (although we didn't know about CHEK2 at the time). I had the DM and because I would be a slow metabolizer for Tamoxifen, I was advised there was an alternate med, but my oncologist said I had almost no chance of recurrence so skip the hormone therapy due to potential side effects. I didn't have reconstruction, no regrets.

7 years later I found a hard, immobile painless lump on my chest that felt like a marble. It was recurrent BC in the chest wall and muscle. No mention of skin as you asked above. It was 1.2 cm. I am listed on all paperwork as having advanced breast cancer that is incurable but treatable. My cancer is 3x as aggressive as the original with the Ki-67 at 50% this time and even higher hormone scores. My onco told me there is a small possibility it's new cancer, but most likely recurrent. I had the tumor removed including part of the muscle, there was a positive margin in the muscle, had 37 radiation treatments and have now been on Kisqali and Letrozole for 4 years. No sign of BC on my every 6 mo. CT scans, but then again it takes millions of cancer cells together to show up on a scan so who knows. The cancer came back so aggressive, he thinks cancer cells likely got away before the surgery and we also don't know if radiation took care of the positive margin. I can't do chemo because of my rare hereditary neuropathy, but he doesn't think chemo wouldn't work on my current cancer anyway. Bottom line is, I'm still here, doing well, enjoying life. All my challenges are from the medication side effects, not the cancer itself. I never had any cancer symptoms other than the lump both times (first time I didn't feel it).

My original surgeon who saw me 20 times in the 7 years before my recurrence acted surprised I wasn't on hormone therapy and said it would have cut my recurrence risk in half. She knew all along I wasn't taking it per her oncology partner's advice. If I had to do it over again, I would do the hormone therapy. I hope my current BC meds continue to hold any remaining cancer at bay for a long time. The plan is stay on the same meds indefinitely as long as they work. I have a whole collection of medical issues as do many people on Connect including another cancer, but life goes on. Medical stuff takes up a lot of time each month, the new normal, but I use the other time to live and enjoy life!

My best advice to you is take any necessary precautionary steps to avoid and identify recurrence, do your monthly self-exam, and then just live your life and put cancer thoughts on the back burner. Don't let worries about the future steal today's joy. I start every day saying, "Today something good is going to happen to me and through me. Who can I bless today?" It makes me notice the smallest blessings each day and notice opportunities to bless others. It's a great way to stay upbeat and make every day count. I hope my story helps you in some way. Many blessings, Zebra

Hi @lilacs777
So I even have BC recurrence and can't answer all your questions because it is confusing and even my oncologist has thrown out different scenarios. I had a double mastectomy in 2013 (I think I accidentally put 2011 in another post). Stage 1, 7 mm found on routine mammogram, ER/PR+ HER2- with BRCA2 and CHEK2 mutations (although we didn't know about CHEK2 at the time). I had the DM and because I would be a slow metabolizer for Tamoxifen, I was advised there was an alternate med, but my oncologist said I had almost no chance of recurrence so skip the hormone therapy due to potential side effects. I didn't have reconstruction, no regrets.

7 years later I found a hard, immobile painless lump on my chest that felt like a marble. It was recurrent BC in the chest wall and muscle. No mention of skin as you asked above. It was 1.2 cm. I am listed on all paperwork as having advanced breast cancer that is incurable but treatable. My cancer is 3x as aggressive as the original with the Ki-67 at 50% this time and even higher hormone scores. My onco told me there is a small possibility it's new cancer, but most likely recurrent. I had the tumor removed including part of the muscle, there was a positive margin in the muscle, had 37 radiation treatments and have now been on Kisqali and Letrozole for 4 years. No sign of BC on my every 6 mo. CT scans, but then again it takes millions of cancer cells together to show up on a scan so who knows. The cancer came back so aggressive, he thinks cancer cells likely got away before the surgery and we also don't know if radiation took care of the positive margin. I can't do chemo because of my rare hereditary neuropathy, but he doesn't think chemo wouldn't work on my current cancer anyway. Bottom line is, I'm still here, doing well, enjoying life. All my challenges are from the medication side effects, not the cancer itself. I never had any cancer symptoms other than the lump both times (first time I didn't feel it).

My original surgeon who saw me 20 times in the 7 years before my recurrence acted surprised I wasn't on hormone therapy and said it would have cut my recurrence risk in half. She knew all along I wasn't taking it per her oncology partner's advice. If I had to do it over again, I would do the hormone therapy. I hope my current BC meds continue to hold any remaining cancer at bay for a long time. The plan is stay on the same meds indefinitely as long as they work. I have a whole collection of medical issues as do many people on Connect including another cancer, but life goes on. Medical stuff takes up a lot of time each month, the new normal, but I use the other time to live and enjoy life!

My best advice to you is take any necessary precautionary steps to avoid and identify recurrence, do your monthly self-exam, and then just live your life and put cancer thoughts on the back burner. Don't let worries about the future steal today's joy. I start every day saying, "Today something good is going to happen to me and through me. Who can I bless today?" It makes me notice the smallest blessings each day and notice opportunities to bless others. It's a great way to stay upbeat and make every day count. I hope my story helps you in some way. Many blessings, Zebra