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nonna1642
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Posted: Jun 02 2013 at 2:12am |
Hi! Steve, So glad to hear that your test came back with great news. My brother had prostrate cancer Stage 2 in 2008at age 70 & had radiation & hormonal treatment. Unfortunately he passed away in March 2009 to a massive heart attack. In March 2010 at age 70 I came down with IDC TNBC of the left breast Grade 3. I had a left mastectomy no reconstruction that was Stage IIB 5.1 cm S/N 0/3, M0. They did the IMC & the FISH test. The IMC TEST WAS ER 0, PR 0 HER-2/NEU 2+ The FISH came back negative. I also had a 1st cousin on paternal side who had breast cancer in 2004 or 2005 whose cancer came back to abdominal area in 2011. She passed away in April 2012. I did not have the BRACA1/2 done. But have finally decided to talk with a genetic counselor as I worry about my granddaughter & my son getting cancer & I am the only cancer survivor in my family now. I wish you & your family the best and am excited to hear your good news.   Dx: age 70 3/2010 IDC TNBC Grade 3. 5/2010 left mastectomy no reconstruction Stage IIB 5.1cm, .S/N 0/3, M 0, followed by chemo of Taxotore & Cytoxin, then radiation to chest wall
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SagePatientAdvocates
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Posted: Jun 02 2013 at 5:05am |
Dear all,
I have been struggling with changing the title of this thread so friends who first see it don't get alarmed as Tracy Mac did or going back to the first post and opening with an update that my biopsy was negative. At the moment I am inclined to leave it is as because the thread seems to have taken on a different life where some women share their stories, which is always paramount to me. Nonna did that today and I will respond below.
There were several reasons I first posted this thread-
-I was really concerned I had prostate cancer and was in a really dark place and needed support, personally. I still marvel at that support and thank you all, once again. I am slightly worried about the second opinion and again having your good wishes really helps me. I think losing my Mom when I was 20 has left an indelible ache in my soul, and I guess a fear of cancer. I have always felt like I had a genetic time bomb ticking inside me. And all the cancer that swirls around me every day as a patient advocate colors my thinking, as well. It's funny, I am very positive when I am helping women with breast cancer but when it came to myself, I was not. Also, when my daughter was first diagnosed at 36 with TNBC and the BRCA mutation my initial reaction and fear was that I would lose her. My mental state was so bad that I saw a therapist. Thankfully the chemo and surgeries seem to have worked for her and she is almost 9 years NED and I do not worry about her like I used to.
-I wanted to let our marvelous TNBC women (especially the BRCA+ ones) know that their male loved ones might be at risk for prostate cancer and at times prostate cancer can be aggressive. Also, for men at high-risk, aggressive surveillance is recommended to commence once the guys are 40.
-That there is new technology called a FUSION 3D MRI and biopsy that I wanted to make folks aware of. Even though there are false positives that are stressful I have been told that most of the times a suspicious biopsy, like I had, can be a useful tool.
-the idea of a second opinion for a pathology review is important for prostate cancer as well as breast cancer.
Dear Nonna,
Thank you for posting your story and for your good wishes. I am very sorry for your battle with TNBC. It is good that the FISH test, as a second pathology opinion, brought you some clarity. It is very rare that a BRCA+ woman is first diagnosed with breast cancer at the age of 70. Also, prostate cancer in BRCA+ guys is often early onset. I am very sorry for the loss of your brother. Certainly your first cousin's (on your paternal side) breast cancer is also a possible hallmark of a BRCA family. The only way to know, for sure, is to test. I am glad you saw a Certified Genetic Counselor and are considering it.
If you test negative you do not have to worry about your son inheriting the mutation from you. And if you were to test positive there is a 50-50 chance your son will test negative and in that case your granddaughter could not inherit it from your son. The mutation does not 'skip' generations so if your son is negative your granddaughter will be negative and if he were to test positive she could still test negative as two of my children did. My other sons are untested.
Please send me a PM if you feel I can be helpful to you in some way. The best would be if we can talk.
Good luck to you!!
warmly,
Steve
Edited by steve - Jun 02 2013 at 6:06am
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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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wildabandon
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Joined: May 30 2013
Location: Greenville NC
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Posted: Jun 02 2013 at 8:21am |
Steve, Thank you so much for this information. Chemo starts the day after tomorrow. Would contacting him in mid-September after chemo be the best approach or do you think I should do so prior to that? My doctor here seems quite knowledgeable on the subject and easy to talk to. Do you think I could give her the name of the doctor in Mayo as someone who's knowledgeable about my type? Don't want to come across as saying to here, "Here's someone who knows alot more than you......" and would phrase it with diplomacy. Grace
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IDC/level3/triple negative 4 nodes-negative/ metaplastic sarcomatoid carcinoma 5/15/13 left lumpectomy 06/04/13 begin A/C 6 rnds Taxol 9wks 33 rads NED 02/28/2014 Mets in both lungs & chest June 2014
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nonna1642
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Posted: Jun 02 2013 at 10:33pm |
Hi! Steve, Thank you that is very reassuring. I will not be talking to a genetic counselor until next week. The NCCN Guidelines is somewhat confusing . My cousin's breast cancer I do not think was TNBC but don't know for sure. I think she took Tamoxicin (not sure of spelling). She did the double mastectomy 5 or 6 years when she had her first bout with breast cancer yet it still came back to her abdominal are at the end of 2011 & passed away in April 2012. In my family history there is some Jewish blood on my mother's side. My grandfather was Jewish & I don't understand what they mean by an Ashkenazi Jew. I do not know if it was on his father or mother's side or both. I think it was his father's side going by his last name. As far as I know only my cousin & myself are the only ones who have had breast cancer. Family never talker about stuff like this. There is a history of lung cancer in the family. I am the only cancer survivor left now. I don't fall into the criteria for TNBC either yet I got it. Go figure! back in 1992 when I was 52 they found a stellate are of parenchyma distortion around the 2 o'clock position with a indistinct nodular density about 8 mm in the center. They did a needle localization surgical biopsy (they took 2 specimens).The radiograph specimen written report said it was conceivable that altered spatial architecture secondary to unavoidable deformation of the specimens hs resulted in failure of radiographically. On the other hand, there does exist the possibility that the worrisome breast lesion has not been resected. Two months later they took a biplanar mammogram & there conclusion was that increasing infiltrative mass density at the biopsy site mot likely represents a radial scar subsequent to the biopsy & fat necrosis as opposed to advancing carcinoma. However, at this time, advancing carcinoma could not be excluded. To make a long story short I had several 4 to 6 months or yearly mammograms. All the time my mammograms came back abnormal on the left side ever since that biopsy in 1992. So to this day I will never know if that tiny little cancer had been growing inside of me slowly for 18 years. My cancer in 2010 was at the 6-9 o'clock position. and the ultrasound on that in 2007 when it was less then 1 mm said it was a benign cyst. I missed my mammograms in 2008 & 2009 & a nuclear stress test at my cardiologist office in Feb. my cancer showed up by then it was 5-7 cm. That test saved my life. So I am thankful to say I am still here today  I hope your second opinion comes back with good news also. You are family to all of us here & you are a real star.  Try to always have a positive attitude that helps to get through things. If you want to talk you can reach me at (707) 782-0892. Take care & God Bless and keeping you & everyone in my prayers. Nonna........Barbara
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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SagePatientAdvocates
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Posted: Jun 03 2013 at 12:49am |
Dear Barbara,
Ashkenazi Jews-
http://www.thefreedictionary.com/Ashkenazi+Jews
I am glad you are here, too.. 
This is hard to do on the message board. I will call you tomorrow to continue the discussion. Please understand, I am not a doctor and will not give you medical advice but hopefully I can help you clarify some things.
Thanks for your kind words.
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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puakai
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Posted: Jun 03 2013 at 1:06am |
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WHOOOOO HOOOOOO! You go Steve! So glad for your good news!
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SagePatientAdvocates
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Posted: Jun 03 2013 at 1:46am |
Dear Grace,
here are some thoughts from the American Cancer Society regarding second opinions and some suggested questions for your oncologist. Ideally this should be a cooperative effort not adversarial.
also a utube video I love...The speaker is a cardiovascular surgeon at the Cleveland Clinic but the principle is the same.
The hallmark of a great oncologist, in my opinion, is one that welcomes a second opinion because there is always the possibility that the person giving the second opinion can be helpful and benefit both the patient seeking a second opinions but also, possibly, other existing patients your physician may have.
warmly,
Steve
p.s. I can't advise you as to when you should get a second opinion. One time, for sure, is if things are not going according to plan. Hopefully that will not happen. Having an appt. 3 months in advance is not a bad idea in my view if that coordinates with your next scan.
Edited by steve - Jun 03 2013 at 1:47am
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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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Allison
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Posted: Jun 03 2013 at 11:12am |
Steve,
Congratulations!!! So happy to hear the good news!
Allison
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9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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nonna1642
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Posted: Jun 03 2013 at 4:42pm |
Hi! Steve, Thanks for the information link.
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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mags20487
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Posted: Jun 03 2013 at 7:42pm |
Steve..I am just back from surgery and found this thread. I am so elated for your news!!!!! You are an amazing support and inspiration to so many of us here. I have goosebumps for you! so wonderful. A friend of mine was diagnosed with a 10cm tumor (not TN) on the Friday b4 she gave birth on Monday (MEM DAY) She started chemo and got her pet scan results today and only her breasts and a few lymph nodes lit up--which biopsy had already found...also great news for her so celebrating all the good today has brought to our family  Maggie
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Diag 8/17/2011 2cm metaplastic grade 3 bmx 8/23/2011 3/18 lymphs-Taxol x4 9/22/11 a/c x4 1/16/11.rads and recon 2012 diep 11/1/12 failed left side redone gap flap 3/5/13. lymph node transfer 5/22/13
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mindy555
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Posted: Jun 10 2013 at 8:31pm |
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Wow. I have been on an extended board break.
I can't tell you how happy I am your news turned out to be good. WHEW!
Steve, you mean so much to SO many of us. I'm thrilled you're okay.
Remember, I'm your cuz too - 187delAG... that's if you'll claim me. ;)
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Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012
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nonna1642
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Posted: Jun 11 2013 at 12:38am |
Won't be seeing a genetic counselor until July. Talked over the phone a little bit. We are not sure if I fit in the guidelines yet or not. In the meantime I will try to gather as much information as I can. on family history.
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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SagePatientAdvocates
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Posted: Jun 12 2013 at 2:05pm |
Dear all,
a huge sigh of relief...my second opinion from Johns Hopkins showed everything benign.
Thank you all, again and again,
Steve
Edited by steve - Jun 12 2013 at 2:16pm
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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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Boo
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Posted: Jun 12 2013 at 2:32pm |
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It is good news Steve. May it always stay that way. Some celebrating is in order I think......Cheers and best wishes. Anne
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dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails
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123Donna
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Posted: Jun 12 2013 at 2:46pm |
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Steve,
Doubly Good News!!! So happy for you.
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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kirby
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Posted: Jun 12 2013 at 3:17pm |
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Fabulous
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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michelle525
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Posted: Jun 12 2013 at 9:00pm |
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Woo Hoo!
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DX IDC TNBC 1/96, age 30, Stage 2, Grade 3, 3.5 cm, o nodes, lump, rads, ACx6, finished 7/96. 7/11 recur/new, TNBC, Stage 1, Grade 3, 2 cm, BRCA-, mast w/recon. 9/11, CTx4, finished 1/12
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denise07
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Posted: Jun 12 2013 at 10:13pm |
FANTASTIC!!!!!!
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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Grateful for today
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Posted: Jun 12 2013 at 10:16pm |
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Steve,
So good to read your good news..........adds another beauty to today.
Grateful for today.............Judy
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nonna1642
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Posted: Jun 13 2013 at 3:15am |
Steve, I am so happy to hear the good news for you. You are a valuable inspiration to all of us You have a terrific gift that helps all of here and we hope we can do the same for you. Enjoy your Father's Day coming up on Sunday.  Nonna..........Barbara
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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation
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