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PLEASE HELP - I AM TERRIFIED NOW.

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Category: TNBC Forums
Forum Name: TNBC Talk
Forum Description: A place to chat
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13363
Printed Date: Jun 25 2018 at 5:49am
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Topic: PLEASE HELP - I AM TERRIFIED NOW.
Posted By: Asovey
Subject: PLEASE HELP - I AM TERRIFIED NOW.
Date Posted: Jun 11 2018 at 4:31pm
On Friday I had surgery to remove the effected tissue in the breast and check out lymph nodes. I ended up with the auxiliary disection, since the dye did not work to locate them. I just got a call from the surgeon. He said the invasive ductal cancer is gone. No active cancer cells. He then told me that there still is active DCIS in my breast. He also said of the 16 lymph nodes removed, 7 showed some active cancer. 5 were minimal, but two he called macro. I am completely devastated and terrified. Is this a death sentence! He did not know what the next step would be. Maybe more chemo. Maybe radiation. Maybe both. He meets with the breast cancer team Thursday afternoon. I meet with him in the morning but he will call me in the afternoon. Have others had positive lymph nodes after chemo an surgery? PLEASE HELP!



Replies:
Posted By: gordon15
Date Posted: Jun 11 2018 at 8:45pm
Asovey: my wife went thru similar situation, but I'm not sure about your post since you are understandibly under stress. First of all, any DCIS remaining is not cancer I think it's Stage Zero, I think Donna clarified... (pre-cancer)

I'm wondering why a surgeon would scare you that "you still have active DCIS..." when DCIS is the least of your problems, from what I know...Is this appropriate? Just asking.


If they removed all the lymph nodes and some were cancerous, you probably need to go over the pathology report, maybe even send to Donna on here, this is NOT a death sentence, you have to heal from all your surgeries, all I can tell you is my wife is doing well because removing the main cancer with surgery gets it out of your body.

Any residual cancer can be dealt with, is from our experience, if you had cancerous lymph nodes, they are GONE, right?

When my wife had her last surgery similar to yours, I was in pre-op and Dr Mary Wilde (she is my wife's breast surgeon in San Diego )showed me the image of positive cancerous lymph nodes and said " This will be gone"   So, I always remember that.





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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


Posted By: 123Donna
Date Posted: Jun 11 2018 at 9:16pm
Asovey,

Gordon is absolutely right - this is not a death sentence.  You're frightened right now receiving unsettling news and it's normal for you to panic.  I understand how you feel and felt the same when I got bad news.  I don't know the percentage of women who actually achieve pcr but we've seen many who don't and survive this disease.  You may need more surgery, chemo and radiation.  Now is the time to consider getting a second opinion.  To me, this would be the best advice, a second opinion from an NCCN facility with someone who's very knowledgeable with TNBC.  You want to move quickly so you can get all your information and make a good decision regarding treatment.  Sometimes it's not easy to get a second opinion quickly - they want all your records and review them before making an appointment.  Somethimes your onc can make a call to help facilitate the second opinion.  (Mine did for me when I was being hassled and put off by the scheduler.  She made a call to the other onc and I had an appointment in a few days.)  Where are you being treated?  Can you PM Steve (SagePatientAdvocates) to see if he can help you get a second opinon?  He helped me and many others in this group.  Definitely seek him out.  Let me know if you need help contacting him.

Deep breaths!  We are here for you friend.  Do you have any ativan or something you can take?

Please read through this thread and look into Xeloda.  Tulips thoroughly researched the study and offered some insightful information.

http://forum.tnbcfoundation.org/xeloda-after-neoadjuvant-chemotherapy-and-surgery_topic13153.html" rel="nofollow - http://forum.tnbcfoundation.org/xeloda-after-neoadjuvant-chemotherapy-and-surgery_topic13153.html

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



Posted By: Asovey
Date Posted: Jun 12 2018 at 8:02am
Thanks Gordon. What you said is really helpful. I was just so sure that things were going to,be OK. I was not prepared to hear anything negative. I will keep rereading your post to keep my spirits up. Thank you again.


Posted By: Asovey
Date Posted: Jun 12 2018 at 8:20am
Thanks Donna. I am in contact with Dr Traina. I had an appointment with her back in December and I have a follow-up with her on the 26th of this month. Last night I messaged her with what my surgeon said so I am waiting to hear back.

She mentioned the Xeloda as part of a plan if I did not achieve pCR when I saw her. I sure was not prepared to hear negative news from my surgeon. Have to work on getting back to positive here.

Thanks again!   Ann



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