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AmyE
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Joined: Aug 08 2021
Location: PA
Status: Offline
Points: 6
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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
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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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
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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
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Lilia
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Joined: May 12 2021
Location: Miami
Status: Offline
Points: 2
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Posted: Aug 10 2021 at 11:37am |
I am new to the site and thinking I haven’t 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
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Joined: Oct 24 2020
Location: New Jersey
Status: Offline
Points: 78
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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
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8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2- 9/16 BMX,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 Xeloda2/21 Stage IV 6/22 lung mets
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Liz37BA
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Joined: Aug 04 2021
Location: Pennsylvania
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Points: 6
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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
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Joined: Aug 04 2021
Location: Pennsylvania
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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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mwgans
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Joined: Dec 06 2020
Location: Cape Cod
Status: Offline
Points: 10
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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
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Joined: Aug 04 2021
Location: Pennsylvania
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Points: 6
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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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Susan - Ohio
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Joined: Nov 19 2021
Location: ohio
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Points: 3
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Posted: Nov 19 2021 at 9:21am |
HI Everyone - I am a new subscriber to TNBC but I am a 21 year breast cancer survivor. I work in CAM (complimentary alternative medicine) with a specialization in cancer treatment. I am here to help and learn. Thank you -
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wvugirl1968
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Joined: Nov 30 2021
Location: Beckley, WV
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Points: 1
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Posted: Dec 03 2021 at 10:00am |
Hello my name is Lorie, I went for a regular mammogram on September 29, 2021. They called me back the next day to come back for an ultrasound. By the next week i was called back for a biospy. On October 8, 2021 i was told my results for positive for cancer. My first appointment at Edward Cabell Huntington Cancer Center i was told i had Triple Negative Breast Cancer. I never felt a lump and neither could the onocogists. I have now had my port placement and i have had two chemo treatments. Two days ago i started losing my hair. Hand fulls at a time. I went ahead and shaved it off. I feel like i am still in shock. I will be doing 6 months of chemo before they remove and the radation. i am single and trying to hold on to my full time job and not lose my first home i just bought at 52 years old. I am overwhelmed .
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SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009
Status: Offline
Points: 4748
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Posted: Dec 03 2021 at 10:14am |
Hi Lorie, Your post really touched my heart. I am hoping you will find some good support on our wonderful forum. I don't know what the law is in WV but you should have some protection regarding losing your job. There is a non-profit called triagecancer and I suggest you go to their website www.triagecancer.org ; I think the enrollment period is still on for certain policies that may be better than yours or maybe you can check with the HR person at the company you work for to see if you can get the best possible plan you can. I am a patient advocate and helped many hundreds of women with TNBC. I am not a medic al professional and will not give you medical advice but hopefully I can be a resource for you as you enter this battle. You can send me a PM with your contact information or write to me at-
info@sagepatientadvocates.org
There are no charges and maybe I can help you in some way. I would like to.
with my love to all here,
Steve
Edited by SagePatientAdvocates - Dec 03 2021 at 10:15am
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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