2nd primary tumor- chemo choices? |
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kristinT 
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Joined: Jan 07 2012 Location: San Carlos, CA Status: Offline Points: 2 |
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 Topic: 2nd primary tumor- chemo choices?Posted: Jan 07 2012 at 1:18pm |
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I had tnbc stage 11a 12 years ago at age 30. I did great with lumpectomy, rads, ac/t. It's 12 years later and I have a new primary tumor in the opposite breast. I did double mastectomy 3 weeks ago, new tumor is also tnbc, stage 11a. I'm curious whose done chemo again for a second primary and what you choose. I'm weighing the risk of cardio toxicity with additional a's, leukemia with additional c's vs overall reoccurance rate without some of these chemos better suited to tnbc.
Please share experiences! Thanks! Kristin |
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4/1999 @ 30, IDC, 2/13 nodes, stage IIa, TNBC, lumpectomy, AC/T, rads
BRCA-/BART- 10/2011 @ 42, new IDC, 0Nodes, Stage IIa, tnbc, bilateral mastectomy--deciding on treatment |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Jan 07 2012 at 1:32pm |
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Dear Kristin,
welcome to our family... I think you should get a perspective from a Breast Medical Oncologist who is TNBC savvy and also very familiar with clinical trials. You may be seeing one of these oncologists already but if not I would try to get a second opinion from Dr. Hope Rugo, UCSF, San Francisco Dr. Ana Maria Gonzalez-Angulo, MD Anderson Cancer Center, Houston very sorry you are dealing with this again.. all the best, 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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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 07 2012 at 1:42pm |
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KristinT,
So sorry you are dealing with this again. Steve has given you some excellent choices for a second opinion. There are other chemos you can try besides the AC/T since you've had it before. There are the platinums, like Carboplatin or Cisplatin, that do very well for us with TNBC. I'd get a second opinion and ask the onc what chemo alternatives are available to you and their potential side effects. Wishing you the best. Please keep us posted. 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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tinaEM
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Joined: Jan 07 2012 Location: Maryland Status: Offline Points: 1 |
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Posted: Jan 07 2012 at 8:11pm |
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Hi everyone,
I'm new to the site. Age 47 stage 1 TNBC. On chemo, 3 left, then radiation. I was diagnosed in August and am finally able to pay attention to my own diagnosis. Why so long you ask? My husband was diagnosed with bladder cancer about 18 months ago. He was stage IV with a mass in his pelvis. He did radiation and chemo. The mass is gone and his bladder is gone. He will have follow up chemo but his prognosis is great. Now that his major issues are behind him I have time to focus on mine. I've been putting on my happy face for him. Saying things like "I have the easier time of it" knowing what he was going through. Now I'm starting to have my OMG moments as I realize that this is not "an easier cancer". Everything I'm reading seems negative. I haven't found any recurrance stats except your recurrance % drops if you make it past 5 years. Does anyone have any info? I am happy to have found a place to talk with people, Tina
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 07 2012 at 8:33pm |
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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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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Jan 07 2012 at 8:46pm |
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Hi Tina,
welcome to our family.. Yes, TNBC can be difficult and it also can be very sensitive/responsive to chemo. My daughter was diagnosed 7+ years ago and she is NED (No Evidence of Disease)... I think if you can make it through the first 3-5 years without metastasis you actually have a better chance for survival than other types of breast cancer. Please keep visiting, reading, posting...we shall be here for you.. all the best, 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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Annie
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Joined: Dec 19 2008 Location: Canada Status: Offline Points: 887 |
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Posted: Jan 07 2012 at 9:01pm |
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Hi Donna, I am astounded!!! I had no idea that triple negative diagnosis could spread to the other breast? I read that twice in this link...Is this true??????????? I am having a mastectomy on the 24th because of that Chronic Cellulitis I have been battling...My gosh, I did not know this...I was thinking of having the other one removed if my chances were good for reconstruction...meaning no residual tissue infection in the area radiated...but say in a years time...Maybe I should just get the other one off now...Let me know your thoughts on this link...have you read this before anywhere else, I have not? Thanks...Love, Annie ps I thought that there was no chance of a contralateral spread...I will go back and read this, maybe I missed something
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Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Annie
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Joined: Dec 19 2008 Location: Canada Status: Offline Points: 887 |
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Posted: Jan 07 2012 at 9:08pm |
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Hello Tina, Exuse me for my reply below before acknowledging what you are going through. I am very sorry all this is happening to you and your husband as well. You will find this group to be wonderful and helpful to you every step of the way in what you are experiencing...love, Annie
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Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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HappyGoLucky
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Joined: Apr 22 2009 Location: New Jersey Status: Offline Points: 454 |
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Posted: Jan 07 2012 at 9:10pm |
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Oh Kristen
You are being hit a second time. Its weird but you have come a long way and so has medical science. Hoping you will be strong and successful in this fight. I can't even say its not fair, wth. It stinks and thats the way it is, This is a good place to come . All kinds of compassionate experiences here. U wouldn't believe the good things that do happen Have Faith, Karen
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2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 07 2012 at 9:32pm |
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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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Annie
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Joined: Dec 19 2008 Location: Canada Status: Offline Points: 887 |
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Posted: Jan 08 2012 at 10:53am |
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Donna, Thank You very much for the links...I guess I am a bit jumpy to say the least right now...I am planning on removing the other breast and having reconstruction. Fist I want to make sure that any tissue that may have been damaged by the radiation does not pose a problem in regards to cellulitis continuing to occur after the left mastectomy. They would have done it now believe it or not but I do not think it wise.
I remember my oncologist specifically saying there was no danger in a contralateral breast cancer occuring...that is why I was so shocked at what I read. I did know that of course a BRCA+ makes it fairly certain to occur sometime in ones life. It just goes to show you that we have to remember that this cancer business is still wrapped in mystery. There are some things we know yet other things continue to baffle. I am going through so much stress as you know that I guess I wish the other one could come off now but I am getting tearful while I am writing this...I think I can only do one thing at a time...this ridiculous court business is putting such a strain on me, just thinking that it is coming up soon...High pressure tactics are nothing for my husband...he was a VP in a huge company...all because I am sick and its taking too long???anyway I appreciate the info. and I am praying if I am to take the other one off now that I will be given the courage...Thanks again...Love, Annie |
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Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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HappyGoLucky
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Joined: Apr 22 2009 Location: New Jersey Status: Offline Points: 454 |
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Posted: Jan 08 2012 at 11:18am |
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Dear Annie
My heart goes out to you. I am praying that it turns out well. You are in my prays. Tina You are in my prayers. There is so much we don't know. You have been faced with so much ....take it one day at a time. Its an illness but not a death sentence. Many new therapies are showing good results. Peace and Love, Karen
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2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jan 08 2012 at 11:36am |
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Annie,
I hope I didn't add any more stress to what you're already experiencing. You have your plate full right now with the divorce and cellulitis problems, you don't need something else to worry about. I'm so sorry if I added to your anxiety. Talk about your worries and concerns with your surgeon and make the best decision for you. Percentages are just percentages and not necessarily what will happen to us. The higher risk is for BRCA carriers. I found this article: SABCS: BRCA Carries Wider Disease RiskBy Kristina Fiore, Staff Writer, MedPage Today Published: December 09, 2011 Over 10 years, women with the BRCA1 mutation had about a 20% increased risk of contralateral breast cancer over 10 years, and those with BRCA2 had an 11% higher risk, Alexandra van den Broek, a doctoral candidate at the Netherlands Cancer Institute in Amsterdam, reported during a press briefing at the San Antonio Breast Cancer symposium. On the other hand, noncarriers had only a 6% likelihood of developing other tumors, she said. |
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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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kristinT
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Joined: Jan 07 2012 Location: San Carlos, CA Status: Offline Points: 2 |
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Posted: Jan 16 2012 at 1:04am |
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Hi Annie- I was you 12 years ago, pretty similar tumor stage, size, nodes, BRCA status, etc. If I knew what I know now, I would have had a double mastectomy back then. That said, it's been 12 years....that's a long time and it's a new primary not a reoccurance, which is better (hard to believe there is something better here, but there is). My understanding from all the oncologists I've spoken with, this is a rare instance and they suspect something strongly genetic (not BRCA) is at play given my ages at diagnosis (30 then 40) and history (paternal grandmother diagnosed at 40).
You have a lot on your plate and it is completely understandable that you are jumpy. But I think you have some time here. You have a bigger threat from reoccurance than from a new primary over the next few years. Give yourself some time to heal, grieve, cope, cry, laugh and when you are ready, you can make a decision about what would give you best piece of mind. My heart is with you in all this. Know you are not alone! Kristin |
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4/1999 @ 30, IDC, 2/13 nodes, stage IIa, TNBC, lumpectomy, AC/T, rads
BRCA-/BART- 10/2011 @ 42, new IDC, 0Nodes, Stage IIa, tnbc, bilateral mastectomy--deciding on treatment |
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Annie
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Joined: Dec 19 2008 Location: Canada Status: Offline Points: 887 |
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Posted: Jan 16 2012 at 8:36am |
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Hi Happy Go Lucky, Donna and Kirsten T., Sorry I am just receiving this post today. Thank You for your prayers and concern, they mean a lot to me...I believe I am going to have the mastectomy as planned and then hopefully if there is no recurrence of Cellulitis for a year or so I will have the other removed and have reconstruction. I wanted the plastic surgeon to do the reduction but he said I probably would not like the results especially with the other breast gone and so I thought about it and now am really hoping I can do this down the road...
Donna, you did not add to my anxiety at all. Understanding and the more we can get about this disease is to our BENEFIT. The information you gave only further confirmed my decisions, the only thing is that I thought maybe I should have it off now...other people I know have been telling me they would do it now but when it comes down to it you really have to listen to yourself and of course pray. It takes work to research and post the information you give us and we really appreciate it...Take care all...Love, Annie |
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Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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