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AmyE View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote AmyE Quote  Post ReplyReply Direct Link To This Post Posted: Aug 08 2021 at 10:46am
Hi Ellie, Thanks for sharing and I can share my decision and some advice. First, I suggest asking for a referral to a PT person specializing in lymphedemia. They can help with your range of motion and help prevent future issues. 

I decided to get a full mastectomy. I had very dense breasts and it makes finding cancer challenging. Since I was 35, every mammogram has resulted in extra scans and ultrasounds. I also hated the presugrical MRI that found a second spot. This resulted in a failed ultrasound biopsy that became the MRI biopsy. The whole process was long, stressful and ultimately painful. I foresaw every scan being the same. I was also told I am BRCA 2+. The second biopsy process really changed your mind. I had really wanted a lumpectomy. I also looked at the potential of the cancer coming back combined with my BRCA2+ diagnosis. My decision changed right before surgery. 

Good luck with your decision,
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 09 2021 at 8:35am
Hi Ellie,

Welcome and thank you for sharing this study from MDA.  It will be interesting to see if this becomes an option following treatment.

Have you had genetic testing done?  Most women now get a panel of genetic tests to see if there are any inherited mutations.  If you test positive for a gene mutation, your surgery choices are narrowed to a mastectomy in most cases. 

The chemo you are receiving is the standard of care most receive after a diagnosis.  Some get Taxol weekly, every 2 weeks or every 3 weeks. 

Donna
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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Lilia View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lilia Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2021 at 11:37am
I am new to the site and thinking I havenít figured Out how to post correctly. I have a question Regarding taxol. I was Diagnosed March 2021 stage 2 B, Negative on genetic testing.2.8cm LB, Lump in lymph node, biopsy,it was negative.Just finished first 8 weeks of load dose Red devil chemo,3 week pause do to  Atypical pneumonia. Now on to Taxol four treatment over eight weeks. My Four kids are going back to school in two weeks. just trying to safely navigate around them.  I heard cold therapy for hands and feet would help prevent Nerve damage. One taxol chemo down.struggled with pain of cryotherapy. Any advice on how to make it less painful?? 
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 10 2021 at 5:34pm
Ugh I agree the cold therapy was very uncomfortable! I used the art of distraction , that was the only thing that helped me. I would listen to a podcast or music to help deal with the pain. I iced for gemzar and so far no neuropathy! So it's definitely worth short term pain than long term neuropathy. Hang in there , be well.
Andrea


Edited by cookie54 - Aug 10 2021 at 5:35pm
8/2016,IDC,StageIA, Gr3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX implants,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca, surg
Xeloda2/21,8rnds


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Liz37BA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2021 at 10:23am
Hello ,Amy. Thanks for your advice I saw the NP on Monday and she suggested to wait after surgery for PT person and treatment for lymphedemia she said I will more likely to need then that now.because the insurance may fight and not give me the treatment later if I get it now .she suggested exercises which I been doing and helps big time .  

I understand your decision of getting a full mastectomy,appears to me you made the right decision. I am BRCA2 - but PLD1 positive ,my genetic testing was  negative. I guess will take one day at the time I address that later with my surgeon. Thanks again 🙏




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Liz37BA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2021 at 10:33am
Hello Dona. Yes,today I have send an email to my surgeon asking her opinion about this new study,maybe it will become an option following  treatment. Regardless to the genetic testing Mine was negative. Thanks for taking the time Dona🙏
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mwgans Quote  Post ReplyReply Direct Link To This Post Posted: Aug 13 2021 at 10:09am
Hi Ellie -- I was diagnosed with Stage 2b TNBC with lymph node involvement (lukcily just 1 lymph node).  I was treated through a clinical trial at Dana Farber in Boston by a TNBC expert oncologist, Dr. Eric Winer, and have a wonderful surgeon there, as well, Dr. Tari King.  Upon conclusion of the clinical trial, it was recommended that I have a lumpectomy (and lymph node excision), as opposed to a mastectomy.  Dana Farber definitley has a mindset of breast preservation if at all possible, and Dr. King explained to me that not only was a mastectomy not necessary, but because I would need radiation at the end, radiation is safer when breast tissue remains.  I could have insisted on a mastectomy just to get rid of it all, but opted for the lumpectomy.  After the lumpectomy, I underwent another chemo regimen (this is because the clinical trial was research based and although I had a PCR after the clinical trial, to be safe, Dr. Winer wanted to have me go through another round of standard chemo (Cytoxan and Taxotere)).  I then had 4.5 weeks of hypofractionated/cardio protective (deep breath inhalation) radiation which I just finished on 8/4.  All in all, I am very happy I opted for a lumpectomy.  But every story is different and relying on your medical team is crucial to making an informed decision that best suits your story.  Best of luck to you!
Mary
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Liz37BA View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liz37BA Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2021 at 6:50pm
Hello ,Mary . I am half way my Chemo ,at some point I will have to make a decision.I will keep in mind the information you are sharing.And I really appreciate your good wishes.again appreciate you sharing your experience! 

Have a great weekend. And love and peace to all! 🙏🤗

Ellie
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