6 year Survivor
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Topic: 6 year Survivor
Posted By: msm082455
Subject: 6 year Survivor
Date Posted: Aug 29 2010 at 7:30pm
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I rarely post on this board, but read daily. Like Lisa before me, I just wanted to let everyone know, I am a 6 year Survivor of TNBC. My "anniversary" date was Aug. 27th. ------------- Michele,PA,55 Dx 8-04,IDC, Gr.3,3 CM Lumpectomy w/SNB,9-04,clear margins,Triple Negative 4A/C,4TA,Rads, BRCA 1 & 2, negative |
Replies:
Posted By: 123Donna
Date Posted: Aug 29 2010 at 7:34pm
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Michelle, Thanks so much for posting. We need all the long term survivors to come back and let us know there is hope, even with tnbc. Congratulations  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 |
Posted By: SagePatientAdvocates
Date Posted: Aug 29 2010 at 8:10pm
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My daughter...6th year anniversary NED, this past week...she was 36 when this started... I love you, sweetheart...another 60 years, at least, in good health... all the best to all, Steve ------------- 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 |
Posted By: abcmom
Date Posted: Aug 29 2010 at 8:14pm
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That is so awesome!! ------------- Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice) Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11 |
Posted By: Shelly Rae
Date Posted: Aug 29 2010 at 8:17pm
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I love hearing good news like this! Congrats to you and Steve's daughter. ------------- 4/09 age 47 Stage 3a, Gr 3,1 node micro ACx4 Tx4 Rads x 33, done Dec.1,2009 NED |
Posted By: janey32960
Date Posted: Aug 29 2010 at 8:19pm
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Michele and Steve,
Thanks for letting us know. It helps us who are going through treatment now, very encouraging.
Congrats Michele !!!
 Congrats to your daughter, Steve !!!
Thank you,
Janey
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Posted By: 123Donna
Date Posted: Aug 29 2010 at 8:47pm
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Steve, Congratulations to your daughter also. Awesome! ------------- 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 |
Posted By: Lorene
Date Posted: Aug 29 2010 at 9:34pm
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I don't know if I reported in on this site during my recent scare;, if so, I apologize for repeating. I recently had a core needle biopsy, then an excisional biopsy because of changes on my mammogram this summer. They both turned out OK, and and I will be a 9-year survivor in October!!!
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: 123Donna
Date Posted: Aug 29 2010 at 9:55pm
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Lorene, Hurray!!! Congratulations. We like hearing these stories over and over! ------------- 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 |
Posted By: TNBC_in_NS
Date Posted: Aug 29 2010 at 10:50pm
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Wow! What AWESOME NEWS!!!
Congratulations to all of you on your Life in Survivalship!!!
Bless you all, Helen in NS ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: LRM216
Date Posted: Aug 29 2010 at 10:57pm
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Michelle, Steve and daughter and Lorene:
You all rock!!!! Two or three line posts like these boost all of us 6 feet high! Gives us all so much hope. God bless you all. ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Terri
Date Posted: Aug 29 2010 at 11:03pm
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WHOOHOO!! Continued NED to Michelle, Steve`s daughter and Lorene!! Thankyou for posting and God Bless. ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: SagePatientAdvocates
Date Posted: Aug 30 2010 at 12:10am
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Dear TNBCF family, Often lost in all the difficult stories of recurrences and new primaries, in our marvelous TNBC family, is the fact that survival rates for women with TNBC are often better, after 5 year survival, than women with other forms of breast cancer.
I think staying positive and finding the beauty in each day are really important...There is no precision to any of this but often stories like Michele's and my daughter's and perhaps many others we never hear from because women go off the board when they feel support is not needed any longer....and certainly I understand that but this thread is very meaningful and I hope more post... In fact, some of your may know longer-term survivors...Please let them know about this thread and have them post.. The angst, worry and surveillance often create a high level of stress...I know my daughter is nervous every time she goes for her surveillance check-up but she has moved from every 3 months to every 6 months and now every year...She has told me "Daddy, I will never be the same. Having cancer, the surgeries and chemo were a life-altering experience." But she is here, helping literally hundreds of adolescents as a public middle school guidance counselor..and also created with a colleague a bereavement counseling group to ten young people who have tragically lost their parents to various cancers or other diseases/disasters over the last couple of years. It is good for the kids to know they are not alone and I am so proud of the work she is doing. She chooses not to post...but is a resource for every school teacher/staff member in her school and she has openly talked about her breast cancer and chemo experience in large staff meetings. My own feeling is that there must also be an environmental component to breast cancer and the amount of breast cancer, especially among young women, is astounding to me. In any event my heart is with all here...What a marvelous family we have and all the open hearts and generous sharing of knowledge/experiences is so very beautiful. Again, please try to stay positive and try to find the beauty in each day...maybe it's a child's touch, a loved one's embrace, a good book/concert/movie/favorite TV show, a special meal, a sunrise/sunset/vista, reading/writing a special post on this board or in your diary...the list is endless and to be honest my daughter would say somedays "Daddy I didn't find it yesterday" but she made it through that day...maybe that was the beauty...just the act of survival. To be honest, I was totally petrified when my daughter was diagnosed and the thought of losing her, after losing my mother, at age 46 when I was 20, shook me to my core...But here she is and she is fit and healthy and trying her best...We feel blessed, truly blessed...and at the same time I hate cancer with a passion that scares me, at times. Complex emotions. my love to all, Steve ------------- 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 |
Posted By: DonnaL
Date Posted: Aug 30 2010 at 5:44am
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This is wonderful to read! ------------- DX IDC 10/23/09, Age 53 Tumor 2.0 cm, Grade, 3, 2 Nodes, BRCA 1 & 2 -; Clinical Trial with Taxol, Avastin and Adriamycin 11/2009-4/2010; Biateral Mastectomy & lymph nodes; Radiation; Reconstruction |
Posted By: scared
Date Posted: Aug 30 2010 at 8:46am
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That is wonderful news, congrats! Tell me though do you feel like you are, "Out of the woods"? Someday, I wish to feel like we are,but being only two years and three months NED, I am as always.... scared. ------------- Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation. |
Posted By: Debris
Date Posted: Aug 30 2010 at 10:01am
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What a great read this morning - all the survivor tales, and Steve's most eloquent (as always) reminder of looking for the beauty in each day.
Thanks for the good news start to my day! ------------- 4/12 Xeloda/Tykerb 2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
Posted By: Terri
Date Posted: Aug 30 2010 at 10:48am
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Steve,
Your daughter sounds like an amazing woman (not surprising
 ). It`s wonderful that she is doing so well and has the strength to be so involved to use her experience to help others, even if it`s not by posting here. I definitely feel like we should pay it forward to others and am like the resident breast cancer supporter to our clients at work when they or their loved ones have been diagnosed. I can`t believe how many are dx! They watched me go through my journey and work part time with a scarf on my head, skin a lovely shade of ash green, to the present, looking more like myself but still coming back physically and emotionally. Your point of long term survival for TN`s being better for after 5 years is true and it would be nice for those in that part of their lives to pop in here sometimes and remind us they are out there living their lives (Kirby comes to mind as one who does this).
Thankyou also for reminding us to find the beauty in everyday. This is not always easy when one is dealing with post tx issues like premature menopause hot flashes, sleep issues, and being constantly reminded by society what you`re missing out on because you can`t have children (due to chemo). These things tend to make me grumpy/bitter. But more and more I am trying to remember how lucky I am to just BE HERE, to truly appreciate the wonderfully simple pleasures like hugging my mom, laughing with/bickering with my dh, driving with my convertible top down during a beautiful sunset, and listening to my 16 year old cat purr as I scratch his chin and smooch on him.
Scared,
I am still scared too but as time goes on I don`t think about it as often as I used to. (Maybe only a few times a day instead of every few minutes!) With every normal mammogram and/or scan I try to visualize getting further away from DX and therefore further out of the woods. I may be fooling myself but I CHOOSE to look at it this way and hope my positive thoughts will guide my body to a long life of NED.
Love to all,
Terri
------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: CiGi
Date Posted: Aug 30 2010 at 11:39am
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Thanks for the encouraging posts from longer term survivors. It really gives us a feeling of hope. Some days I feel so upset about the whole thing and then I read such positive posts and it's really uplifting. I have two more chemo treatments left so right now I'm still lost in the woods but slowly finding my way. Hope to see more posts. ------------- Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010. |
Posted By: gobluegirl90
Date Posted: Aug 31 2010 at 10:04pm
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Congrats to all of you long term NED's....
I love to hear these positive stories of living with NED for many, many years. It is very encouraging to those of us, like myself that are new to this TNBC and are still having many sad days, still in chemo (5 more weeks of Taxol togo) then radiation.
With so much to go still as far as treatments, these wonderful posts are needed for those in the beginning stages of this life long journey. I can not thank you enough.
Steve your words are so amazing, you should really write a book. I would buy it in a heartbeat.
Jennifer ------------- Age 38,Dx 4/8/10 IDC stage I, No Nodes, GradeIII, Brac I&II NEG lumpectomy, 2 nodes removed(neg)finished 4 AC& T on 10/1/10 33 Rads finished 10/2/10. Married 19yrs, 1 son 11yrs & 1 daughter 9yrs |
Posted By: NONI
Date Posted: Sep 01 2010 at 12:13pm
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Okay ladies and gents first timer here but guess you guys need to hear some good news, here goes. I was 39 years old back in 1987 when first diagnosed. Back then if you were node negative you had NO chemo. So just had lumpectomy with 6 weeks radiation and never turned back. Seven years ago this month I did have a new breast cancer in the other breast and had a bi-lateral. My 34 year old daughter was diagnosed 6 months later. She had breast cancer in both breasts, she is now 6 1/2 years out and we are both doing great. So over 24 year survivor here and doing wonderful. The only reason I ever came back to these boards was for my daughter and to try and figure out this desease. What I have found out that being TN is not the worst thing and there are so many good things coming out about our specific diagnosis. I loved the fact I did not have to take Tamox and remember after 3 years ladies we have a much better prognosis, 8 years out and we are DONE. Hey time flys when your having fun, can't believe how 7 years just flew by. Many survivors that don't come here. My daughter is one of them and I know many ladies that are very long survivors. BREAST CANCER IS NOT A DEATH SENTENCE. This triple negative is new, I'll bet that many women that are 30-40 years out were never aware of there homone status. Twenty three years ago tamoxifen was in use and on my pathology report back in 1987 states my hormone status was negative. FYI, first time I was stage 1 second time stage 11. I refused chemo the second time, ya I know.....My daughter was stage 1 in both breasts and just had 4 AC.
GOD BLESS ALL OF YOU. I appologize for not coming on sooner.
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Posted By: abcmom
Date Posted: Sep 01 2010 at 12:42pm
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Thank you for sharing! You give us HOPE!!! ------------- Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice) Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11 |
Posted By: SagePatientAdvocates
Date Posted: Sep 01 2010 at 12:42pm
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Dear NONI, welcome to TNBC Foundation...Very happy you posted and very happy you are a 23 year survivor. I wish you and your daughter continued success.. Just a thought, NONI....due to your young age at your first diagnosis and your daughter's even younger age (by the way that happens a lot...my mother was dx at age 41 and my daughter at age 36) you are classic candidates for the BRCA mutation. Have you ever spoken to a Certified Genetic Counselor or been tested for the mutation? The testing should start with you, according to most cancer centers who now recommend that any woman under 40, with TNBC, should see a Certified Genetic Counselor. If you are negative no need for your daughter to test but if G-d forbid you are positive..your daughter should test, as well and positive results can have important implications for both of you.. you can find a Certified Genetic Counselor on the www.nsgc.org website. If you would like to talk about any of this please send me an PM and I will send you my contact info. all the best, Steve ------------- 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 |
Posted By: overwhelmed
Date Posted: Sep 01 2010 at 12:52pm
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Thanks so much for these posts. This is just what I needed. I just read another thread that made me feel a bit hopeless. I know that being TN brings about it's own set of fears and concerns, sadly with good reason. But, sometimes when I come to this site I begin to think that it recurrs in all or most who have it. I know it isn't true, but it can seem that way. I am usually very positive, but all it takes is reading a story about mets or someone who has died and I begin to imagine it happening to me. My step brother and my adopted brother both died at young ages of cancer. I saw it up close and like everyone here, I never want to confront it.
Again, thanks for lifting my spirits. I don't want to live my life in fear, and I do hope I've made the right decisions regarding my treatment, choice of onc, etc. It can be so easy to doubt everything when I read of an outcome that isn't good despite cancer caught early on before it has spread to the nodes. My tumor was pretty big and it had grown quickly (no sign of it on a mammogram less than a year before), but aside from three microscopic cells (largest .17 mm) there was nothing in the sentinal node. Still, the size of the tumor and being TN worry me. I guess there is no way to get away from that, except to realize that maybe we are more likely to be here if we are newly diagnosed or have had the cancer metatasize. My hope is that most of those who are longterm tn survivors are out living their lives, and that there are many more of them than any of us can imagine. ------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: NONI
Date Posted: Sep 01 2010 at 1:17pm
| Steve, yes actually I did go as far as to get my blood drawn but then my health provider did not accept and wanted $4000 to complete the test. We had a family discussion and all decided against it. I am sure we carry a gene, might not even be related to the 2 genes that were identified. You know Steve, you might be correct but I don't know that I agree 100%. If we prove to not be positive for the Brac gene what would that really prove, would that not give us a false sense of security. It is what it is and being a 23 year survivor is really why I came here, or am I now a 24 year survivor??? Please don't change this into a discussion that is not positive for those who come here looking for some really great news. My daughter is now 40 and to have her ovaries removed and to go into menaupause is just not an option just yet. How about some quality of life issues. I know you mean well and you are a dear person, hope you don't take offense but lets try to be a little possitive and not change what was intented to be a little upbeat. "G-d forbid I am positive", that really sounds pretty scary to those women who are, sounds to me like we are all positive for some gene . |
Posted By: overwhelmed
Date Posted: Sep 01 2010 at 1:37pm
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Noni,
I think Steve would like all of us to be tested just so we know what we are dealing with. I don't think I am BRAC 1 or 2 positive because there is so little history of bc in my family (one cousin). But, I want to get tested if the insurance company will pay for it, because I am TN. I read this a few months ago and do realize that while TN does increase the possiblity of BRAC 1 or 2, most with TNBC don't have the mutations (the percentage of those positive did increase in those who are younger). However, in this study, of those that were positve for the mutation, 1/3 had no family history. That was a number that surprised me.
I think we all take different approaches to this. I would as soon avoid any scan as to have to face the possibilty that the cancer has spread. I would prefer to bury my head in the sand rather than face it. I know that's not rational, but it is how I feel and I will dread any scan that comes my way in the future. Knowing about the mutation, for some reason, doesn't scare me as much. For me it gives me the power to make decisions. At my age I would, without a doubt, get rid of those ovaries and the other breast if I were positive. But, I am 50 and the ovaries are pretty much at the end anyway. I also have a young daughter and a 41 year old sister who might approach life differently if they knew I was positive. But, we are all different.
Here's a link to the study, just in case you or others want to check it out.
http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=49840 - http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=74&abstractID=49840 ------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: overwhelmed
Date Posted: Sep 01 2010 at 1:38pm
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Sorry, I guess the study dealt on with BRAC 1 ant not both. ------------- DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2- |
Posted By: trip2
Date Posted: Sep 01 2010 at 2:59pm
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Omg, love this thread with all of the good news, let's continue to share, I am 3 years and counting.. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: LauraT
Date Posted: Sep 01 2010 at 3:18pm
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Thanks for reminding us that many, many people survive tnbc. It helps a ton to hear your stories! Love, Laura ------------- DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva |
Posted By: kirby
Date Posted: Sep 02 2010 at 1:08am
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I feel like some of you must get tired of me chiming in but for you newbies........This January I will be 10 years out from dx. That is only 4 months away ! I did protocol for the day...they didn't know what TN was...just that it wasn't her2 and it wasn't er or pr +. Noni said it right. A relief to not take those additional drugs with side affects [ but at times I did feel left out that I didn't have additional protection]. I had 4 rounds of AC. This was before dose dense, before SN. It was just starting and my surgeon said better safe than sorry so removed 13 nodes. I was lucky to get zofran, some dr.s wouldn't prescribe it because it was so expensive. No port, no decadron etc. Just a lumpectomy.
I came to this site in 2007 when I realized what my cancer had been. I do still see my onc and surgeon. I've never had a scan, this was also prior to muga tests. I did see the onc and surgeon 2 X a year until year 8. Now I only go 1 X a year to both. I post to let those of you just dx that there is life after cancer and there are "long term" survivors. Weird to think of 10 years as being long term. I used to have the word survivor. I felt it made me sound like a victim. Somewhere I got over that and do consider myself a survivor. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: ozogsmom
Date Posted: Sep 02 2010 at 2:39am
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Thank you all for the hope you have given me. I am 37 yrs old and was diagnosed in 5/10. I was a stage IIB, 2/11 lymph nodes positive. Had a lumpectomy and have 2 more treatments of chemo followed by radiation. I am a very positive, optimistic person but sometimes that reality sets in that this may come back. I am prepared for the worst but hope for the best. I would like to be able to come on this forum yrs from now and say I have been cancer free. I don't know what the future holds for me but you all have taken some of the scare out of it. Congrats to all of you!!
Nicole |
Posted By: 123Donna
Date Posted: Sep 02 2010 at 8:10am
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Kirby, This is one topic we want to hear from you and others over and over. Hugs, 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 |
Posted By: Raine
Date Posted: Sep 02 2010 at 11:05pm
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Will join in here. I Will be 14 years come Xmas from my 1st TNBC and just passed the 4 year mark from my 2nd TNBC. The fear do suside with the year but never fully go. Good wishes to all going thru tx at present.  ------------- Raine Dx Jan 1997 Medullary,6/14 nodes Lumpectomy, Rads & 6xAC Dx July 2006 IDC, 29/34 nodes, Mastectomy, 4xFEC and 6xTaxol, Rads |
Posted By: CTB
Date Posted: Sep 03 2010 at 12:01am
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Noni: Mega thanks for your positive postings. I cannot tell you how thrilled I am that you contributed your messages to this forum. Althugh the information on this site is fabulous there is somewhat of a depressing overtone in regards to the recurrence factor. When I was gong through chemo I could not read the posts, they made me feel sad and hopeless. I totally agree that many long-term survivors of TNBC do not post, they simply move on with their lives. I have spoken to several at different events. Thanks you so much for joining in. Chris ------------- Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10 |
Posted By: NONI
Date Posted: Sep 03 2010 at 9:20am
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Okay, my dear ladies, let me continue to be upbeat. I have been in this breast cancer business now for 24 years and yes I lost a few of my support group back then, but let me add only 2. There was 24 girls and 22 are still alive and thriving. Ladies I can go on and on with survivor stories so, so many more that survive then succumb to this desease. The dear ladies that come here are either new or are the ones that are here because they might be in trouble and are here for support and this certainly is a great place to come for that, however this is not the place for sissys, your going to hear some bad stuff that's going to make you crazy. Well let's keep focus on some good stories. A neighbor of mine back in the early 80's, she was probably in her late 40's when diagnosed, she was stage3, many positive nodes, just like Raine. Well she is in her 80's now. I no longer live in that neighborhood but love to pass and see her still out in the garden. My girlfriends Mom was diagnosed back in the 60's when we were in junior high and she live to be 87 and passed from just old age. Back then they did radical mastectomies and no chemo and just sent you on your way. Have you ever been in a group of women and find out how many survivors are just standing next to you, IT'S AMAZING. I am 64 years young and still work, in my office of 15 women 2 of us have had breast cancer and almost every one has been affected by a sister, mother or friend that has been affected. Lot of women but all still healthy. If you come to these boards you are going to hear the contrary BUT IT IS NOT THE MAJORITY.
Okay another thing. Statistics, statistics, statistics, that is your choice. I prefer to ignore and put myself in a good place. BTW, I don't eat flax and do everything in moderation. I'm Italian, if you haven't guessed, and love to cook. I might be just a little heavy but hubby and I love to share a cocktail at the end of the day while we prepare dinner, mine is preferably red wine. I love God, Family and the gift of each beautiful day. THIS IS THE DAY THE LORD HAS MADE LET US REJOICE AND BE GLAD IN IT. Learn to live those words ladies and not look at tomorrow, tomorrow will take care of itself, AMEN
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Posted By: NONI
Date Posted: Sep 03 2010 at 9:32am
| Opps, forgot to mention this one. About a month ago I was watching the Today Show and they had the segment for Smuckers Jam with Wilard Scott for those haveing bithdays that are celebrating 100 years or older. Well one of the 100 year olds said she had breast cancer in her 30's. Loved that one. |
Posted By: LRM216
Date Posted: Sep 03 2010 at 9:32am
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Noni:
can I come live with you????? You are better than any dang chemo or pill. God bless you, Noni, you have brightened my life!
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: LRM216
Date Posted: Sep 03 2010 at 9:33am
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P.S. You too Raine, wonderful news!
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Ashlyn
Date Posted: Sep 03 2010 at 10:38am
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Wow, love this thread. Many congratulations to all of you. This is truly inspiring! ------------- 32y-o, married, one 5y-o girl. Dx 13/5/10. TNBC, stage 2A, sentinel node biopsy 2 nodes+. Neoadjuvant chemo 5 x EC. Bilat mast & axil dissec on left, Oct 10. 0/13 nodes. No evidence of disease. |
Posted By: zoomommy2
Date Posted: Sep 03 2010 at 10:51am
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I don't pay too much attention to the statistics anymore. They are just numbers. No matter what group you fall into statistically, you are still a person, not a number. Life is good right now and that's all I care about! Praying that this is the case for many of my sisters in this fight. ------------- dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda |
Posted By: bondande
Date Posted: Sep 03 2010 at 12:45pm
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Thank you so much Noni! Your post is music to our newly diagnosed ears. Many of us are still reeling in panic from hearing that we have tnbc. It has consumed most of my thoughts is some way or another. My eating this or that, vitamins or not, plan a trip for next year or wait and see..., son engaged( will I still be here), reconstruct or not, is this pain a recurrance or not, etc. I am so sick of it! I come to these boards daily, sometimes 2-3 times, looking for info, here, there everywhere. I feel like a ticking bomb at times. Don't get me wrong, I have a great life, but it is always tick, tick , ticking in the backround of my mind. Granted, sometimes it's, wow, that feels better today, so ,Ok, cross that thought out. Maybe I will be alright. Wow, that scan was ned, so maybe I will be alright. I will do my best to have more of those' I am going to be alright' thoughts. Nov. 2 is the one year anniversary of finishing my radiation and being done with treatments. I can hardly believe it. Thank you for taking the time to come here and post your positive outlook. It did me a world of good!
------------- age55,Stg2a,Gr3,3.8cm tumor,mod.rad.mast.lft brst3/4/09,4ac,4taxol,33 rads.done11/2/09.BRCA1+oophorectomy1/5/2010,mast.rt brst 2/18/10,NED,bonescan 8/16/10,NED,catscan11/29/10NED catscan 3/17/11 NED |
Posted By: Lorene
Date Posted: Sep 03 2010 at 12:59pm
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Before this "very positive" site "disappears" again (I saw it some time ago & then never could find it again), could someone please tell me where it disappeared to & how to find it if it doesn't show up on the forums?
I'd certainly like to keep posting long-term survivor stories, as well as hear those from others! Thank you.
Let's Enjoy Each Moment,
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: SagePatientAdvocates
Date Posted: Sep 03 2010 at 1:06pm
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Hi Lorene, not quite sure what you mean about disappearing..from time to time there are glitches on the site and there are necessary repairs but not that often.. you should be able to find us at www.tnbcfoundation.org and you will always find a welcome..this is a wonderful resource. good luck to you!!! all the best, Steve
------------- 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 |
Posted By: trip2
Date Posted: Sep 03 2010 at 6:07pm
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Kirby,
We will never ever get tired of seeing you post. I was thinking about you when reading this thread early on and hoped you would post, thank you once again, continue to keep us inspired, we love it.
And.... girl, congratulations on your 10years coming soon, just awesome Kirby!   ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: nmunoz
Date Posted: Sep 03 2010 at 11:58pm
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Thanks for all the wonderful posts!!!
For what it's worth I can also tell you a story of a wonderful woman that meant a lot to me and survived BC for over 20 years. My dad's older sister was diagnosed with BC at 36. It was 1983 and she lived in Colombia, South America. She had several infected lymph nodes and back then the treatment was a radical mastectomy (she wore a prostheses all her life) and she received radiation to her chest and arm. She had trouble with lymphedema all her life; I remember that she slept with her arm above her head and it always puzzled me when I was little. She never got married and didn't have any children so she was dedicated to us her nieces and nephews and was a very important person in our lives. Her bout with cancer impacted her life in such a strong way that she decided to become a nurse (she was a nutritionist before that) and she was head of the neonatal unit at a hospital in Colombia for many years. When she was diagnosed she was not tested for hormone receptors (of HER2 of course) so we don't know for sure if she was TNBC or not. My dad and I speculate that she probably was since she was diagnosed at a young age and she was probably BRCA1+ like my dad and me. Well, her breast cancer never returned. She passed away from a different illness five years ago and I miss her everyday. I've found hope in knowing her story and how she survived BC for many years even without having had chemo and better treatments like the ones I was lucky to have. She was a kind, loving and happy human being. Now I've shared this battle with her and even though she was not here with me I've felt her by my side all the time. Best to all, Natalia ------------- Natalia, 38 years Dx TNBC 10/22/08, BRCA1+ Double Mx 11/20/08 with Recon. 3/37 nodes Rads 7 weeks done 8/09 ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09 |
Posted By: SagePatientAdvocates
Date Posted: Sep 04 2010 at 12:12am
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What a beautiful story, Natalia. Gracias. Your eloquence is matched by your lovely heart. honored to be your friend, siempre, Steve ------------- 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 |
Posted By: trip2
Date Posted: Sep 04 2010 at 10:07am
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Lorene,
One thing that could be happening is that when a topic is started it is at the top of the posts in a certain section. Members reply, time goes on, other topics are posted and the older ones move down the list and onto the next page. So if you have lost a thread try looking at page 2 or 3 in the section you found it in, it should be there.
Also, if it goes to say the 2nd page and someone replies to a post later on it will bring the post back to the top of the list then start back down again.. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: MMGabriel
Date Posted: Sep 04 2010 at 10:46am
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I appreciate you sharing. Going through this treatment is difficult, but knowing that there are survivors out there is heartening! ------------- 5/10 Dx IDC TNBC, age at diagnosis 39, Stage 2, Grade 3, 2.7cm, 0/3 Nodes; ACx4/Tx4 dose dense; 6 Weeks Radiation |
Posted By: SagePatientAdvocates
Date Posted: Sep 04 2010 at 12:41pm
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To follow up on what Pam said above....and to avoid posts going unanswered....please consider starting a new thread under your name if you would like....Very few of those go unanswered, from what i have seen and if that does happen you can 'bump' it up by re-posting....Sometimes the posts that follow though may have nothing to do with the thread you posted and then the thread seems to take on a new life of its own... Makes it confusing, at times, as Pam said, but that is the nature of a message board and I think the thing we all cherish here is the freedom to write what we like as long as it is with respect. We can all learn much from each other and also receive the support we need. Generally the talk section seems to have the most participants but if your thread belongs in the metastases section please post there...we will try our best to respond..and also a special section for Spiritual Support under Support Groups.. all the best, Steve ------------- 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 |
Posted By: Lorene
Date Posted: Sep 04 2010 at 11:29pm
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Thanks, Pam & Steve, for your explanations. I'm still not totally on to it yet, but closer. Can I blame my confusion on chemo brain?
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: Lorene
Date Posted: Sep 04 2010 at 11:41pm
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Natalia,
What a remarkable role model & legacy you have! Your Aunt appeared to be a person with strong character traits, with all her persistence.
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: trip2
Date Posted: Sep 05 2010 at 7:03pm
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Lorene, you can blame your confusion on chemo brain, we all do it. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: msm082455
Date Posted: Sep 05 2010 at 10:08pm
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WOW!
I knew that being a 6 year TNBC was amazing, but I had no idea, it was going to generate this much conversation!
I LOVE being cancer free!
For anyone going through treatment now, please know that it does get better! I am sure you hear it all the time, but please try and believe it!
Hugs to everyone!
------------- Michele,PA,55 Dx 8-04,IDC, Gr.3,3 CM Lumpectomy w/SNB,9-04,clear margins,Triple Negative 4A/C,4TA,Rads, BRCA 1 & 2, negative |
Posted By: Terri
Date Posted: Sep 06 2010 at 10:45pm
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Michele,
Your anniversary is 10 days and 3 years from mine (Aug 17th 2007). You should be proud to have given HOPE to so many of your TN sisters! God bless and MANY years of cancer free!!!
------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: CTB
Date Posted: Sep 07 2010 at 12:43pm
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Terri: I have a question regarding the timing of the scans that are in your stats. You had a PET and Brain Scan two years after diagnosis. My Oncologist does not feel that scans have a value in the absence of a symptom that would require further tesing. Did you present with symptoms or did your Onc just think that the 2 year mark merits scans or did you request them. Just curious. Thanks. Chris ------------- Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10 |
Posted By: swisscheeze
Date Posted: Sep 07 2010 at 6:14pm
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Lorene, thanks for posting. My treatment was the same three drugs as yours. Hoping for the same results !!It is soooooooo good to read about people who have survived this tnbc for many years. ------------- May 07 RB IDC 2.5cm lymphnode neg 5% erp. Sept 09 LB IDC 2.5 & .08 cm lymphnode neg tnbc |
Posted By: Lorene
Date Posted: Sep 08 2010 at 12:02am
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Praying a long and healthy life for you, Swisscheeze!!!!!
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: swisscheeze
Date Posted: Sep 08 2010 at 5:35am
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Thanks Lorene ! ------------- May 07 RB IDC 2.5cm lymphnode neg 5% erp. Sept 09 LB IDC 2.5 & .08 cm lymphnode neg tnbc |
Posted By: jody
Date Posted: Sep 09 2010 at 2:57am
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Hi All! I am a Realtor and I have a client who is 10 years out from TNBC~~ I hug her every time I see her because It is SO exciting to have her in my life!!! She is involved in some sort of study for long term TNBC survivors...she ROCKS!!! Yes survivors are out there. I believe that SO MANY survivors just don't even realize this sight is out here as they are not FRANTICALLY looking for information about this illness like most of us have~! My three year aniversary is creeping up...okay, it's in April....but hey thats only 7 months...right! My 3 year anniversary will coinside with my 50th birthday..can anyone say PARTY!!! Hopefully I will have TWO things to celebrate!!! <3 ------------- diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08 La Verne, California |
Posted By: zoomommy2
Date Posted: Sep 09 2010 at 9:22am
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Jody,
Wow, 10 years for your client! May we all have a 10 yr anniversary to celebrate and more! Seven months will go by in a flash for your anniversary!
Lee in Denver ------------- dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda |
Posted By: staceydooley
Date Posted: Sep 09 2010 at 10:55am
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Wow. I haven't been on the board for awhile and have been feeling real blue. My chemo ends next thurs and I just found 2 new lumps under my armpit....., so.........,reading your post this morning gives me hope. Thank you for taking the time to post your a 6 year survivor. I need to hear that. and I think other ladies do as well. God Bless ------------- http://www.youtube.com/watch?v=0Nvx7vFE2fs Stacey, 43 years, TNBC Double mastectomy 04-01-10 BRCA 1, porto cath put in no nodes chemo to start June 3rd |
Posted By: Terri
Date Posted: Sep 10 2010 at 9:10pm
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Chris,
Sorry I`m just getting back to you. That is a great question, you are very astute! My onc believes that since the "peak" time of mets & recurrence for TN is 2-3 years out of diagnosis, he did the scan a little over 2 years out. The brain scan was only done because I was having headaches & occasional vertigo.
We repeated the body PET/CT scan 6 months later because there was a nodule in my lung that didn`t light up like cancer, but had to be looked at again to make sure it wasn`t growing. I will get one more PET/CT scan a year after this last one and if it is clear it will be my final one unless I have symptoms. My onc doesn`t believe in doing routine scans because it exposes you to additional radiation.
Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Terri
Date Posted: Sep 10 2010 at 9:21pm
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Stacey,
I`m so sorry you found more lumps. The good thing is they can change your chemo and if the lumps shrink they will know that chemo works for you.
Your youtube video brought tears to my eyes. What a beautiful family you have! They look like an amazing support system. And you look equally as beautiful with your "chemo cut".
Stay strong and soak in all the love and support around you
 Love, Terri ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: zoomommy2
Date Posted: Sep 10 2010 at 10:10pm
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Stacey,
Terri is very right. You can go on another chemo. There are several of them that will work. I had surgery before my chemo, so I have to trust that my chemo did the job it was supposed to do. I will only know it failed if it comes back. At the time I didn't know you could have chemo before surgery. Praying that the new lumps are very treatable with a new chemo.
Lee in Denver ------------- dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda |
Posted By: CTB
Date Posted: Sep 20 2010 at 11:36am
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Terri: Many thanks for your reply. I needed to have confirmation from someone else to assure me that scans are not routine. All 3 of my team, Oncologist, Surgeon, and Radiation Oncologist feel the same way about scans and do not believe they should be done w/out symptoms. Each of them has said if I insist they will order them but it is my choice. I do not feel I want the radiation in those doses if it is not warranted. I like the idea of having one 2 years out and hopefully I will not have symptoms that require one prior to that time. I will be vigilant in watching for any symptoms. Take care and thanks again. Chris ------------- Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10 |
Posted By: Autumn10182001
Date Posted: Sep 20 2010 at 12:25pm
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I am still arguing this point with my oncologist, he wants a full body (not head) CT every 6 months , basically knees to neck. He will do it just with and without a contrast injection. no drinking anymore stuffs... as I get sick on anything I drink for the tests.
I had the MRI because of these headaches that I have now had for 11 weeks... almost always 7 x 24... this is ridiculous... i see the neurologist on Oct 22nd... she did call and say she doesn't believe it is cancer... but did not yet have a disk of the MRI that would open... so I have to wait and see what that finally is... as for the other scans.. I have to followup with him in a week or two, and argue. I may try to wait until Jan.. just tell him I can't afford the co-pays.. which is true anyway... my co-pay on the nexk and brain MRI is almost $ 500, i can't afford that either... oh well ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Terri
Date Posted: Sep 21 2010 at 11:07am
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Chris,
You`re very welcome
 Autumn,
Maybe your oncs are keeping more of an eye on you due to your repeat dx and stage & grade? Every 6 months does sound extreme, but others here have had routine scans per their docs. There is no standard of follow up for us. I can`t believe you have to wait until Oct 22 to get the results of your brain MRI!!!  ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Autumn10182001
Date Posted: Sep 21 2010 at 5:50pm
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I got the results... but I need to follow up with the neurologist .. they said no tumor ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: 123Donna
Date Posted: Sep 21 2010 at 8:43pm
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Great news Autumn. Are you still having the headaches?
------------- 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 |
Posted By: Autumn10182001
Date Posted: Sep 21 2010 at 9:25pm
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yes the headaches are still with me.... and i am getting to the point where i am going to put it thru the wall... how do i detach it - to do that ? lol ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: Terri
Date Posted: Sep 21 2010 at 10:43pm
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Autumn,
I guess I misunderstood since you said the dr said they "don`t believe" it`s cancer. So I was thinking that wasn`t a firm result. Very glad you had a good MRI.
Have you ever been diagnosed with migraines? I had these horrible headaches for years that I thought were sinus headaches & ended up that they are migraines.
Also, I had them alot more frequently when I was taking in alot of aspartame in my late 20`s. Forgive me if you`ve already been over all this, just trying to help  ------------- IDC DX 8/17/07 (age 41) Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
Posted By: Autumn10182001
Date Posted: Sep 22 2010 at 9:57am
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Terri, I appreciate the help.. i have never been diagnosed with migraines, although I have had a few long term headaches in my life... maybe 4 different times... no one knows what caused them.. i am not light sensitive, so they don't think it is migraines... who knows.. one time it was for 3 months, and someone suggested i stop drinking the water at the apt i lived in, and i did, 3 days later the headache was gone.. I dont eat or drink anything with aspartame.. I tried stopping my supplements for 5 days, that made no change... I cant think of anything that is causing them... I have tried sleeping differently, although last night the headache was so bad... i hardly slept... ------------- DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09 |
Posted By: NONI
Date Posted: Sep 22 2010 at 10:46am
| I can't help to put in my two cents. When MSM082455 posted that she was a 6 year survivor and then I came in to tell you newbie's, that I am sure when then see 6 year survivor there going to come to this site to hear ONLY POSITIVE INFORMATION, and I posted MYSELF AS A 24 YEAR SURVIVOR . How did this get so lost...can we ever get a little POSITIVE, and keep this what it was intended to be. These boards are intended to help but I think I would totally stay away if there is nothing but doom and gloom. |
Posted By: LRM216
Date Posted: Sep 22 2010 at 11:49am
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Nooooo, Noni - I certainly hope all the survivor stories keep on coming. Perhaps a new thread might be started to continue with the course this thread seems to have taken. I agree - this one should be just of all the happy and inspiring posts - as it started out to be.
Linda ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: 123Donna
Date Posted: Sep 22 2010 at 1:07pm
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Noni, We need all the long term survivors! We have a tendency to hijack threads and they morph into something else. I don't think it's intentional, just how normal conversation turns and change course. We need to have threads dealing with the serious stuff, but also threads that are light hearted and uplifting. The "Today" thread is like that where we just talk about stuff that we've done each day or happening in our lives. ------------- 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 |
Posted By: NONI
Date Posted: Sep 22 2010 at 1:45pm
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I just want to make sure that all those dear ladies who are terrified by this diagnosis can have some HOPE and I can tell you for sure that TN diagnosis is NOT A DEATH SENTENCE...PLEASE... Both my daughter, now 6 1/2years and myself are only a few examples. Ladies make the choice to either dwell on the negatives or choose the positives. So, so many women survive breast cancer WHY NOT YOU. My heart breaks when I feel your fears, I know I was there at 39. I sure would of waisted a lot of years worrying now 64 years old. Think of all the positive features about TN. Let's focus on that. I DON'T BELIEVE IN SCANS, I DON'T TAKE VITAMINS, I DRINK WINE AND EAT A FABULOUS MEDITERANIAN DIET, RESULTS JUST A LITTLE CHUBBY. I DO WALK 2 MILES, BUT ONLY WHEN I FEEL LIKE IT AND I LOVE LIFE. LADIES IF YOU HAVEN'T READ MY PREVIOUS POST GO BACK. WISH I COULD GIVE YOU ALL A BIG HUG... |
Posted By: kirby
Date Posted: Sep 22 2010 at 1:54pm
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Noni,
I agree with you completely but I can see where paranoia comes in. When you and I were dx, although you even earlier, they had no idea what TN was so didn't have enough information to cause such worry. I think just moving on needs to be done regardless. Some of us just have an easier time of it. I too post so people can see some positive results.
How did you realize you were TN ? You were dx even before her2. Do you know your stats to put in the bottom? Another woman that is about same time out as you had chemo for most of a year. As you can see by my stats, I comparitively didn't have that much. It is great to be able to give hope to others. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: dmwolf
Date Posted: Sep 22 2010 at 1:58pm
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Noni, it is great to hear about your good health. I'm glad you are here to be an example for fearful newbies who have misunderstood the TNBC hoopla. But you shouldn't be too surprised that for those of us who tend toward fear and are in the first few years from diagnosis, hearing from long-term survivors is not enough to assuage our fears. Those of us who've been around this for a while know well that there are many long term survivors, and that at around 60%, our odds aren't bad. What we don't know, of course, is where we each land, and, if/when we do land in the unlucky 40%, what the ride down is going to look like. TNBC is survivable for the survivors, and not survivable for the rest. Do you see what I mean? The trick has to be figuring out how to live well in the face of uncertainty. How to live, really live, the life that we have, however long it might be and however it might end. What gives me hope is learning how to do THAT. Best, Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: dmwolf
Date Posted: Sep 22 2010 at 2:05pm
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(A great example of this, btw, is Caryn Rose. She has been faced with incredibly tough circumstances, yet manages to retain her love for life and sense of purpose through it all.)
------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: 123Donna
Date Posted: Sep 22 2010 at 2:27pm
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And humor! ------------- 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 |
Posted By: Cathy Leigh
Date Posted: Sep 22 2010 at 2:32pm
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I am so glad to hear this topic being discussed--my thoughts when I lay down at night always go to the survival statistics, just running through my head. I will take my last Taxol treatment on 9/30 and I told my husband that that scares me a little. In my way of thinking, as long as I am being treated, it won't have a chance to recur. Maybe that is not a reasonable way of looking at this thing, and I know there are many, many more who probably have the same fears. It is just so refreshing to hear from those who have beat this thing and are several years away from it.
Please keep those survivor stories coming.
Cathy ------------- 61 years old at dx 12/1/09 Left Mastectomy 2/4/10, 2 sentinel nodes negative and margins around tumor negative Clean PET/CT scan on 3/2/10 ac/taxol began 4/2011-Finished 9/10. CT Scan 8/11 NED |
Posted By: NONI
Date Posted: Sep 22 2010 at 2:54pm
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AND DENISE, WHERE DID YOU GET THOSE STATISTICS, 60%??? AGAIN DEPENDS ON WHERE YOU LOOK, YOU ARE LOOKING FOR TROUBLE. I HATE STATISTICS AND AT STAGE 2 YOUR TELLING ME YOU HAVE A 40% CHANCE TO RECUR??? YOU CAN BELIEVE WHAT YOU WANT, YOU HAVE THAT CHOICE BUT LOOK SOMEWHERE ELSE BECAUSE THAT IS NOT WHAT I HEARD. WHO DETERMINES WHO LIVES AND WHO DIES. EVERYONE CAN BECOME A STATISTIC. I WOULD DISPUTE THAT, BUT PLEASE, PLEASE LET'S NOT START A NEW DICUSSION REGARDING THAT. HONEY, YOU ARE ALMOST 2 YEARS OUT AND YOUR PROGNOSIS IS EXCELLENT, I'M SURE YOUR DOCTOR TOLD YOU THAT.
I HAD ANOTHER PRIMARY BREAST CANCER 18 YEARS AFTER MY ORIGINAL, NOW I AM 7 YEARS OUT FROM THAT DIAGNOSIS. FIRST TIME STAGE 1 SECOND TIME STAGE 2. I HAD TO OBTAIN MY ORIGINAL PATHOLOGY WHICH DID NOT STATE HER2 STATUS BUT WAS ER-PR-NEGATIVE. SEVEN YEARS AGO I WAS TN SO PRESUME MY HER2 STATUS WAS NEGATIVE. MY 34 YEAR OLD DAUGHTER WAS DIAGNOSED 6 MONTHS AFTER ME WITH BREAST CANCER IN BOTH BREASTS. SHE WAS TN NOW 6 1/2 YEARS OUT. MY DAUGHTER HAD CHEMO. I DID NOT, SHOCKER BUT WAS MY CHOICE. HAD A BI-LATERAL THE SECOND,TIME FIRST TIME LUMPECTOMY WITH 6 WEEKS RADIATION.
AS YOU CAN SEE, I AM A BIT STUBOURN AND MAKE MY OWN DECISIONS. WHEN MY DEAR DAUGHTER WHO I ADORE, CHOSE CHEMO I WAS HAPPY SHE DID. I HAVE ANOTHER DAUGHTER AND 2 GRAND-DAUGHTERS...BELIEVE ME I HAVEN'T BEEN SPARED, I CAN'T TELL YOU THE COMFORT I GET FROM MY FAITH, YOU KNOW WHEN IT ALL COMES DOWN TO IT WE AREN'T GETTING OUT OF HERE ALIVE AND WHAT BETTER TO TRUST THAT IN THE END I STILL WIN.
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Posted By: hhhh
Date Posted: Sep 22 2010 at 4:46pm
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thanks for your steadfast optimism, noni...means a lot. ------------- Daughter of one of the most amazing women in the world... she was diagnosed 8/2010, had lumpectomy, TAC X 6, rads. 52 yrs, stage 2A (3cm, no nodes), triple neg, grade 3 |
Posted By: CTB
Date Posted: Sep 22 2010 at 5:44pm
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I said it in an earlier reply and I will say it again, Noni, your responses are wonderful. I am right there with you on this. Let's emphasize the positive (where does that 60% come from, I have never read it.) and stay well informed but not morose. That is my final word on this subject. Thanks again. Chris ------------- Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10 |
Posted By: denise07
Date Posted: Feb 02 2011 at 3:21pm
| This is wonderful! We need alot of more stories like these. I hope these ladies will come on board. |
Posted By: sue
Date Posted: Feb 02 2011 at 3:41pm
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Inspiring Noni. Thanks for sharing this. So true about the end too. God Bless. Sue ------------- Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11. |
Posted By: CST68
Date Posted: Feb 02 2011 at 4:04pm
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Hi - I'm new here but just wanted to say I am a one year survivor this month. It's not long but I'm happy to have reached this anniversary!
I wish I would've discovered the TNBC site when I was first diagnosed! - Christina ------------- Dx 2/18/10 at age 41, Stage 2A IDC, 3.5cm, Grade 3, 0/5 nodes, TNBC, mastectomy, AC/Taxol treatment ended 7/10 (4 AC, 4 Taxol), BRCA 1 & 2 neg. |
Posted By: denise07
Date Posted: Feb 02 2011 at 4:14pm
| Christina, That is great! I wish nothing buy the best of good health fffffor you.I am 3 years 3 months out this month. |
Posted By: CST68
Date Posted: Feb 02 2011 at 4:51pm
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Thanks Denise! Congrats on your 3 years and 3 months! Great health and happiness to you as well. ------------- Dx 2/18/10 at age 41, Stage 2A IDC, 3.5cm, Grade 3, 0/5 nodes, TNBC, mastectomy, AC/Taxol treatment ended 7/10 (4 AC, 4 Taxol), BRCA 1 & 2 neg. |
Posted By: zacar
Date Posted: Feb 02 2011 at 5:44pm
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Just out of curiosity - how many of you have had several recurrences, are Stage IV and have survived more than 5 years? ------------- DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC |
Posted By: msm082455
Date Posted: Feb 02 2011 at 7:05pm
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I am the 6 year survivor, and have had no recurrances or any type of scare. ------------- Michele,PA,55 Dx 8-04,IDC, Gr.3,3 CM Lumpectomy w/SNB,9-04,clear margins,Triple Negative 4A/C,4TA,Rads, BRCA 1 & 2, negative |
Posted By: denise07
Date Posted: Feb 02 2011 at 7:27pm
| Michele, That is great as my onc. would say you are out of the woods!!!!! |
Posted By: janet c.
Date Posted: Feb 02 2011 at 8:15pm
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Congratulations to all the long term survivors.I think it brings hope to everyone that reads about survivors of this horrible disease.
Michele it also made me personally happy to hear that you were braca negative like me because I knew three long time survivors but they were both braca positive. Thank you for your post it made my day. I wish you a very happy, healthy, long future.
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Posted By: msm082455
Date Posted: Feb 02 2011 at 8:34pm
Awwwwwwww..............Thanks, Janet.  ------------- Michele,PA,55 Dx 8-04,IDC, Gr.3,3 CM Lumpectomy w/SNB,9-04,clear margins,Triple Negative 4A/C,4TA,Rads, BRCA 1 & 2, negative |
Posted By: janet c.
Date Posted: Feb 02 2011 at 9:04pm
| You are very welcome! |
Posted By: jody
Date Posted: Feb 03 2011 at 11:21am
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I will be hitting my 3 year mark in about 8 weeks. I remember when I first found this sight in 2008 and I was going thru chemotherapy at the time, I remember thinking that I would NEVER get here!! The road seemed SOOOO LONG!! For you ladies who are just starting this journey, the time actually goes by quicker then you think...I know u wish you could have a snapshot of a few years down the road, but trust me the time will go by and b4 you know it you will be here too!. My three year anniversary and my 50th birthday happen at about the same time so my family is throwing a HUGE open house to celebrate LIFE! I know that you will get here...3 years seems like an eternity but it's not! My love and prayers to all of you! Jody
------------- diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08 La Verne, California |
Posted By: Julia
Date Posted: Feb 04 2011 at 6:09am
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I'm coming up to two years since diagnosis, and no recurrence yet (touch wood). I don't know if that qualifies me for this thread, but it sure makes me happy! ------------- Diag. 3/09 TNBC, IBC, 55mm. 4 rounds AC, 4 weekly Paclitaxol. Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads. 2 more rounds of A/C, 6 months low-dose CMF. |
Posted By: LRM216
Date Posted: Feb 04 2011 at 8:52am
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I'm right with you, Julia. I was diagnosed 2/23/09. Don't know if I feel good about coming up to the two years mark, or scared poopless! ------------- Linda - diagnosed at age 62 Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
Posted By: Julia
Date Posted: Feb 04 2011 at 2:10pm
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High five, Linda! It's a bit freaky, isn't it? All the best. ------------- Diag. 3/09 TNBC, IBC, 55mm. 4 rounds AC, 4 weekly Paclitaxol. Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads. 2 more rounds of A/C, 6 months low-dose CMF. |
Posted By: denise07
Date Posted: Feb 04 2011 at 3:00pm
My friend is 9 years out from tnbc.
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Posted By: Jwatrlily
Date Posted: Feb 04 2011 at 3:10pm
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I agree with Noni. And, I saw that 60-40% thing myself and it was on the MD Anderson website. That "premier" cancer clinic in Texas? I guess it is a great place and maybe many of you have went there but they do a real disservice by posting that stuff. No one but God knows how long we get to survive TNBC. All you read is statistics. I'm NOT a statistic. My health and outcome is not in the statistics either. When I read the 60-40 thing I plunged to the depths of fear and despair. My Pastor had to pull me out of it. I just knew with those percentages I was a goner. I've not been back to MD Anderson website again and WON'T go there anymore. I had mammograms yesterday even though it is early too because I will be starting radiation mid-Feb and my Dr. wanted mammograms first. They were 100% ok. I have my last of 12 Taxol coming up. I plan, with the help of my Lord, to beat this thing and see all of my small toddler grandkids graduate, get married and make me a great-grandma!
Hugs everybody,
Juanita ------------- Diag. June 4, 2010 IDC Stage 1, Grade 3, Node 0/2 TNBC. Lumpectomy 8/9/2010 Started chemo 9/16/2010 AC x 4 every 2 weeks, Taxol x 12 weekly, 33 rads, finished 4/15/11. NED as of Sept 3, 2013 |