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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13509
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Topic: Terrified and trying to be strong Posted: Apr 15 2021 at 8:08am |
Hi Merry89,
Your words so perfectly describe what most of us have experienced. To me the anticipation was always the worst part of the journey. Whether it was waiting on a plan, an appointment, a scan or test, chemo, radiation, follow up scans, the anticipation was the most terrifying part. Hope your mom continues to do well with her treatment.
Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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merry89
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Joined: Aug 25 2020
Location: USA
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Points: 8
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Posted: Apr 14 2021 at 1:20pm |
Hi all -
I found these pages to be so very comforting and educational at the start of my mom's journey that I wanted to come back with an update in case it's helpful to someone else that finds themselves with similar anxiety.
Those of you that advised we were at the worst part of the journey - with a diagnosis but without a complete picture or a plan -- were 100% right. I found those weeks of waiting horrific, but once we got a plan and were executing it, for me it was much easier to keep things in check.
Surgery found that my mom had a 1.7cm tumor, no nodes affected, no sign of spread from testing. She was BRCA negative. So, after her lumpectomy, she completed 4 rounds of AC. She made it through 2 rounds of DD T before having an allergic reaction and switching to another Taxene-based for 6 rounds weekly (which she found MUCH more tolerable). Chemo was certainly no walk in the park and some days were truly brutal for her, but she was able to keep living life (well, the COVID kind anyway) and had an amazing attitude.
She's now started radiation -- tattoos and all. Other than significant fatigue, she looks great, feels healthy and we've all decided she was meant to have a buzz haircut when it starts growing back as it's a good look for her.
I appreciate the support I've found here. To those on the starting point of their journey feeling as lost and overwhelmed as I did, hang in there.
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Penny
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Joined: Dec 28 2016
Location: Sacramento
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Points: 197
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Posted: Aug 25 2020 at 9:02pm |
Your feelings are totally normal. Also great news that the doctor didn't seem overly concerned. Take these wins! ~Penny
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DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.
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merry89
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Joined: Aug 25 2020
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Posted: Aug 25 2020 at 8:02pm |
This is all very helpful and I know it's good advice. I am grateful that the tumor is so small, but of course also aware that isn't the only thing that determines the outcome or what we're dealing with. I still feel like it's more questions then answers and at every turn, the news just keeps getting worse (doesn't help that with COVID I could not go with her and I feel like there are so many questions I would have asked the doctor!). I made the mistake of trying to Google and that was not at all helpful. So I'll do some work on this board to learn more and I appreciate having a community to help me sort out some things. I believe the plan is lumpectomy and lymph node, then radiation and chemo (versus mastectomy) but I am guessing part of that is determined by the lymph node tests. My father said the doctor didn't seem overly concerned with spread -- he's out of town next week which is why the surgery is two weeks away. I just want it OUT of her body!
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Penny
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Joined: Dec 28 2016
Location: Sacramento
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Points: 197
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Posted: Aug 25 2020 at 5:16pm |
Hi Merry 89,
You are at the worst part of the journey. Please know that. Great news that the tumor is small. Please try not to read all the details on TNBC and stay on this site as the members have been through it personally and have many, many wonderful survival stories to share with you. The waiting is the hardest. The pace picks up after surgery when you know thing for sure (size, path report, lymph involvement, grade). Then you get to plan for the attack. I didn't think I would get through all the worry and anxiety and learned through my own journey that step by step planning is the best. Don't "pre-worry" about something that may not come true. Worry and anxiety is the minds attempt to control things. Let that go. I will let others chime in on this but just know that there is absolutely a path through this storm. We are all here to support you.
Penny
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DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.
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merry89
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Posted: Aug 25 2020 at 2:50pm |
Hi all -- 5 weeks after an abnormal mammogram, my mother (who is in her mid-60s) was diagnosed today with triple negative bc. All we know is her tumor is less than 2cm and she'll have surgery on Sept 11 to remove the tumor and test her lymph nodes. I am TERRIFIED after what I have read about TNBC and not at all handling the fact that we have to wait so long to understand if its spread, grade of her tumor, etc. My mom is my best friend and in the middle of the already terrible year that is 2020, I'm not handling this diagnosis well. I'm trying to be strong and supportive for her, but on the inside I am really worried about what this means for her and the likelihood that she'll be here to watch my toddlers grow up. I guess I am looking for encouragement and insight from this community......
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