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Possible mets

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Sheliahm View Drop Down
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    Posted: Apr 17 2017 at 2:49pm
Hello everyone. I'm new to this site and I think I just need a listening ear from people who would understand. I was Diagnosed on 8/2017 with lymph node involvement. Completed neoadjuvant chemo had my bilateral mastectomy with reconstruction on 2/20. I didn't have a complete response to chemo and 15 out of the 26 lymph node removed were still positive. So I'm preparing for radiation. But as im Waiting to start I felt a tiny bump on my breast above the scar. And of course it came back positive. Now I got a lump right above my collarbone. My onc said it's residual cancer and possibly mets. Having a scan done tomorrow but I am paralyzed with fear. I was planning on going back to work and school. But I feel like I can't move on because of this. I have a habit of thinking of the worse case scenario and know this is bad.
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2017 at 4:23pm
Hello, Sheliaham, I assume you meant "diagnosed on 8/2016, my wife had 4-5 lymph nodes involved, and she had a single mastectomy. Her surgeon and her oncologist told her the radiation is necessary, especially with TNBC, because the recurrence often occurs on the suture line. They, with the opinion of the radio-oncologist said she needed radiation after surgery, and after post-surgery chemo, to include the collarbone area, which she did.

My wife also did not have complete response to neo(before)adjuvant chemo/ she had carbo-gem before surgery)

I'm not a doctor, but your doctors have been honest with you, as they said it's residual cancer possibly. The radiation should target these problems, from everything my wife has gone thru, at this point, they would not probably do more chemo or surgery, but radiation could kill this, sometimes the doctors get involved a radio-oncologist, my wife was referred by her surgeon (Dr. Mary Wilde, San Diego) to a radio-oncologist, and he did a physical exam, and felt "not three but four enlarged lymph nodes in her armpit..." he turmed out to be right. He also said the radiation of the clavicle are is necessary because there are lymph nodes under the clavicle area, he maintained that thyroid shields do not work, as the radiation bounces off the bone underneath, he was right about that also, as my wife's latest PET scan says "thyroid unremarkable".
He did say there may be some lung exposure on the top lobe/outer to the radiation, and my wife has some "opacity" in that are, but you could ask about any of these things, and hopefully, radiation will make things better for you, please let us know.
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2017 at 4:45pm
Hi Sheila, it occurs to me that you may not be ready for radiation at this point. Did your onc team do any testing to determine which subset of Tneg your tumor falls into? It may be a moment to determine that and then do a followup chemo that targets your particular Tneg tumor.

There are also clinical trials out there which might be appropriate for your situation. The radiation is generally thought of as a kind of housekeeping tool to sweep up the micro mets, but your situation seems different.

This would be a good time to ask your oncology team for options and then ask for more options (my favorite Steve Jobs' lesson for success). You may even want to take the time and get a 2nd opinion. Times like this, when you're left in limbo and there's no real plan on the table are the very worst. But that's not to say you can't make the most of this time and insist on thorough analysis of what will be your best route. Tell your team you want to be aggressive but you also want to be smart.

Please do come back and share your thoughts, we'll all be here for you.
Best
Mainy
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Sheliahm View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sheliahm Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2017 at 4:49pm
Thankyou for your response gordon15. I'm just a nervous wreck right now. And since my last follow up I'm having all these symptoms. I don't know if it's anxiety or what
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Sheliahm View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sheliahm Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2017 at 4:53pm
Hi mainsailset. I have a scan tomorrow. Hopefully they will put a rush on it. I'm going to ask about trials when I get the results. I actually have an appt with my rads doc this week
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2017 at 7:22pm
Sheilahm,

This is an incredibly anxious time for you.  Have you asked for some help with the anxiety, like Ativan?  Don't be afraid to talk to your onc.  
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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Sheliahm View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sheliahm Quote  Post ReplyReply Direct Link To This Post Posted: Apr 17 2017 at 7:29pm
Thankyou for replyijng 123donna. I'm going to ask tomorrow
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Sceolme5 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sceolme5 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 02 2017 at 3:40am
Feel sorry for your  suffering. Everything is gonna be okay.


Edited by Sceolme5 - Sep 11 2017 at 9:32am
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