Hello: trying to decide on another sx.. |
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123amh 
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Joined: Jan 18 2013 Location: Indiana Status: Offline Points: 2 |
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 Topic: Hello: trying to decide on another sx..Posted: Mar 01 2013 at 11:20pm |
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Hello, I'm new at posting... have visited web site... and value the information.
I was diagnosed with stage 2a IDC, Left breast in July 2012 and underwent a mastectomy. I have now completed 4 rounds A/C and 12 rounds of Taxol. I am so happy to be finished with chemo. I am triple negative with a significant family history including my mother who died 23 months after her diagnosis . I now know that I am BRCA 1 and 2 positive... I have been told this is rare. (Anyone else out there positive for both mutations?) I am tired... and really want a break... but my oncologist her partner and the nurse practioners are all pushing hard... that I have my ovaries and tubes removed ASAP and my other breast shortly after that. I am willing and see the logic in the surgeries but... feel like I need a break. I have been on medical leave from work... without pay. I have two young children and a husband... I want to enjoy time with them now... but also know logically that having the surgery may give me more time with them... overall by helping to prevent the cancer from coming back. I hope I'm not making a huge mistake but have decided to wait a couple months. This is just so much to go through... Thanks for reading. AMH Stage 2a, IDC, Triple Negative, BRCA 1&2 +, L mx, A/C, Taxol |
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arabella
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Joined: Jan 28 2013 Location: Alabama Status: Offline Points: 288 |
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Posted: Mar 02 2013 at 8:27am |
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Hi AMH!
It will take someone a lot more knowledgeable than I to give you a proper answer here, but I did want to say how much my heart goes out to you. Dealing with cancer is hard enough and then on top of it to have these life (and what could be death) decisions to make on top of everything else just feels like too much to bear.
Please know that I will keep you in my thoughts and prayers. You will make the right decision for yourself..... know that. Heartfelt hugs to you, Kaye  |
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cheeks
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Joined: Jan 14 2011 Location: North Carolina Status: Offline Points: 676 |
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Posted: Mar 03 2013 at 12:50am |
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Edited by cheeks - Mar 03 2013 at 12:52am |
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Lump found 11/08
DX: 2/09 @52 TNBC L. Mast. 3/26/09, SN-, BRCA-, 4.5 cm (post surgical)T2NOMO Chemo: 4/09-10/09 Taxol x 12, A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018. |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Mar 03 2013 at 5:50am |
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Dear AMH,
Welcome to our TNBC Foundation family. I have a dear friend who is BRCA1+ and BRCA2+. And yes, it it is extremely rare. My understanding is that if both pass along the same BRCA mutation the fetus will not survive but as you can see you can have both mutations. It is my understanding that having both mutations puts you at higher risk. All I can say is that, I suggest, you should seek and follow the advice of BRCA savvy experts. Some I would suggest are- Dr. Susan Domchek, Abramson Cancer Center, Univ. of Pennsylvania, Philadelphia Dr. Banu Arun, MD Anderson Cancer Center, Houston TX Dr. Lisa Newman, University of Michigan, Ann Arbor. I am a volunteer patient advocate and have relationships with all of the physicians above and can help get you an appointment, if you wish. I am not a medical professional and cannot/will not give you medical advice. A BRCA+ woman, I am close to, told me recently.."I know what I should do, I just can't do it." AMH, I think that everyone's situation is a universe of one to that person and the statistics will show you what is recommended but you still need to do what is comfortable for you. If you would like to talk, I am sending you my contact information. Also, if you have not been there, already, I would like to suggest you go to http:// www.facingourrisk.org you may find more dually positive BRCA women there who can give you their perspective. Good luck to you. warmly, Steve
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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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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Jul 20 2013 at 2:56pm |
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Dear AMH,
I just came across your post from March 2nd about your diagnoses of BRCA 1&2 positive. I pray that you found some helpful information and that by now you have made a decision about what to do. Or, maybe you have already had surgery.
I am really sorry you have been faced with so many things, while having a family to love and care for. Maybe you've shared the information of what you've done on another thread. If not, please give us an update about your situation and know that you have many people here to support you. Most of us don't understand the BRCA 1&2 + diagnoses but WE UNDERSTAND TRIPLE NEGATIVE BREAST CANCER.
Love and God Bless,
Lillie
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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