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Help! Need something positive!

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Asovey View Drop Down
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    Posted: Dec 29 2017 at 12:21pm
I have decided to quit looking on the internet about TNBC! It is all doom and gloom! I am tired of being poked and prodded! Today I have a lymph node ultrasound and possible biopsy. Yesterday was an echo! Will I ever have a normal life again?? At my last oncologist appointment I said I could not wait to get the port out after treatment. My oncologist says to leave it in in case I need more treatment. Am I supposed to expect more treatment??? What a downer thing for him to say! Does EVERYONE with TNBC have it reoccur??? The last thing I want after treatment is done is the port staring at me reminding me it might come back! Heck No! This puppy is coming out!

I know TNBC Has a higher rate of reoccurrence- especially in the five years after treatment - it can’t be that everyone gets it back. Does anyone know what the rate of reoccurance is?

Somebody - PLEASE - some positive news!

Ann
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Lucky22 View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Lucky22 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2017 at 3:33pm
Asovey - hi! Sorry you’re so anxious, but it is completely normal. I just finished my chemo on 12/21 - rads start 1/8. I got my port out on the last day of chemo. Why would I want to stare at that every day? My MO was the one who suggested it. My diagnosis was 1cm tumor with 1 intramammary node with micromets. After all treatment my chance of a recurrence is like 15%. I still have bone pain from Taxol, but I expect to start feeling better every day. I know it is overwhelming, but once treatment starts you’ll have a “new normal “. Don’t let the fear take away from your daily happiness. Most women never have a recurrence and go on with life. Chemo is hard, but doable. You’ll be amazed at your strength.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2017 at 1:00am
Tell your doctor that it's the General Consensus of the women in the TNBC Foundation groups that he is a giant asshole. That was a terrible thing to flippantly say to you and he should apologize. Seriously, tell him we as a group expect you to get an apology. Post his name and medical center and we'll send him notes on how to treat the women in his care

The majority of women do NOT have recurrences. Have you had a second opinion yet? Perhaps doctor shopping should be on your NY resolutions list!
(It pisses me off when Dr.s Mistreat patients... It's a pet peeve of mine).
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Tamara View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Tamara Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2017 at 2:20am
Dear Ann,
I can assure you that life returns to normal after treatment for TNBC! It takes time to adjust to a life without treatment - thoughts of a reoccurence were on my mind for many months afterward but eventually the thought faded as my strength (and hair) returned!
My last chemo was in October 2014 and am grateful to welcome in another New Year! I return to my oncologist in January for a routine check up.
The women and men on this forum were a blessing and source of strength and encouragement before, during and after treatment. I still check into the forum to offer encouragement, support and hope as I know, firsthand, how hard the battle was to fight this disease both physically and emotionally!
There are still times when I wonder if this disease will return but those thoughts are few and far between! Life is good.
Tamara

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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2017 at 10:49am
Thanks Tamara!  I finally got a start date for chemo, which is next Friday.  Right about now some encouragement is needed because it seems my whole life is revolving around this.  I really have to push myself to keep going as opposed to sitting on the couch and brooding.  I know things will get better, but it is great to have someone else tell me that.

Congratulations on your recovery!  Can't wait to be in your shoes!

Ann
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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2017 at 10:53am
Thanks for the encouragement.  I can't wait to be done with chemo - and I don't even start until Friday!
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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2017 at 11:01am
Thanks Kellyless!  Love your style!

Yes, I did have a second opinion at Slone Kettering with Dr. Traina.  What an amazing women she is!  She made some additions and changes to my treatment plan that was developed here at Herbert Herman Cancer Center.  I brought her recommendations back here and my oncologist agreed to follow them.  Maybe he is ticked that I got a second opinion, but I am sure glad I did!

The things Dr. Traina suggested, like adding Carboplatin to Taxol, are no secret.  it bothers me that my local cancer center never even mentioned it.  I get the feeling they just do standard basic care for cancer.  I want more than that! 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote MikeW Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2017 at 3:54pm
I recently read (and I don't remember where) the reoccurrence rate is 30% until 5 years, then it really drops after 5-year mark. Unlike estrogen positive which really goes up after 5 years.

My wife's estrogen positive BC turned TN. She's been on Xeloda for last 6 months. Mets to spine and most have gone away with TM's down. Though a couple stubborn spots remain. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorsmum Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2017 at 5:26pm
Thanks Tamara
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Warriorsmum Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2017 at 5:27pm
Thanks Lucky 22
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Asovey View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Asovey Quote  Post ReplyReply Direct Link To This Post Posted: Dec 31 2017 at 7:46pm
Thanks Mike. I had read a similar statistic. I hope your wife has complete success with her treatment. Let us all know how she is doing!

Have a happy new year! Ann
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