Welcome New Members - New in Orange County,CA

New in Orange County,CA

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Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=11636
Printed Date: Mar 26 2026 at 11:31pm
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com

Topic: New in Orange County,CA

Posted By: littleradish
Subject: New in Orange County,CA
Date Posted: Nov 09 2013 at 4:17pm

Hi I was diagnosed in March 2013. My tumor was 2.1cm grade 3 TN. I did 4 rounds of TC and after 3 they thought it was completely gone but I did a 4th round. I had my double mastectomy in August and when they took it out the tumor was like Swiss cheese so I did not get a complete response like they thought. I was so upset. I did 4 rounds of cisplatin/gemzar after the surgery and now I am just waiting to have my implants placed in Dec. I have been reading posts here for months and just decided to come and say hi.

I don't know what's next my doc said no scans or anything they do blood tests every 3 months.

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Diagnosed March 2013, TC chemo from April-July 4 rounds. Double mastectomy Aug of 2013 clear margins and no lymph nodes involved. 4 rounds of gemzar and cisplatin September to October

Replies:

Posted By: mainsailset
Date Posted: Nov 09 2013 at 6:09pm

Hi there, I was raised in Orange County, 3rd generation and have great memories of all the great things and people who reside there.

I can only tell you what I went through, so please take it with a grain of salt. I'm coming from a place where there are women here whose onc's did not specialize in Tneg and did not understand first hand just how aggressive the tumors can be. It is more proactive not to assume anything.

So in that regard, after hearing your experience with chemo and the results that came out of the surgery I'd be inclined to follow my onc's prescription which was to do a CT a month after I had finished radiation; then a 2nd scan in 6 months. After that he waited a year then I was done with scans. Needless to say he watched me like a hawk and, as an aside, I didn't have any problems getting the insurance company to sign off.

Best of luck to you and since I'm writing this from chilly WA state, I can say I miss the warm Fall in CA. Best, Mainy

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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

Posted By: debB
Date Posted: Nov 11 2013 at 10:17pm

Hi Littleradish,

Welcome to the Forum! I completely understand being upset. They thought I had a complete response also and turned out to be close, but not quite. Everyone was so happy I responded well but I was upset it wasn't complete as predicted. I am impressed that they went on and gave you additional chemo since that is not standard and very difficult to get some docs to even consider!

Standard follow-up does not include bloodwork or scans, but it doesn't include extra chemo either and you already got that! I would ask your oncologist what to expect for labs, etc, frequency of visits and what kind of things they would like to hear about if they pop up.

Good luck with surgery next month,
Deb

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Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial

Posted By: littleradish
Date Posted: Nov 13 2013 at 10:01pm

Thanks Deb
I saw my oncologist Monday and had a blood test they were supposed to call if anything was up by today I didn't hear anything so that is good. I am having a lot of bone pain which he said is normal but if I am still concern he will give me a bone scan when I go see him in three weeks.

Thanks

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Diagnosed March 2013, TC chemo from April-July 4 rounds. Double mastectomy Aug of 2013 clear margins and no lymph nodes involved. 4 rounds of gemzar and cisplatin September to October