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lynda65
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Joined: Jan 14 2013
Location: Delray Beach fl
Status: Offline
Points: 3
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Posted: Jul 03 2017 at 2:41pm |
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kirby
Senior Member
Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1088
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Posted: Jul 06 2017 at 8:15pm |
I wish the best for all of you. I rarely come on site anymore and generally use my iPad, which doesn't let me post.
I was dx 17 1/2 years ago at the age of 44. Then, TN wasn't named, they only knew what I didn't have. I read about this site in Oprah magazine and joined shortly afterwards.
I know what you read sounds scary. Sometimes I think I was lucky because it was all unknown then. I was given standard protocol tx, listed at my signature, which is half of what is generally given now. I only tell you this to give you hope and encouragement.
Kirby
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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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denise07
Senior Member
Joined: Jun 26 2010
Location: pa
Status: Offline
Points: 997
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Posted: Jul 08 2017 at 1:07am |
kirby, so nice to hear from you with your kind and wonderful advice! 17 1/2 years amazing! lynda 65 another amazing person two time survivor incredible! Positive people positive thoughts is what we need to hear from kind courageous people like you too! thank you... Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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bgbanks
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Joined: May 24 2016
Location: North Carolina
Status: Offline
Points: 37
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Posted: Jul 17 2017 at 1:59pm |
I am a year cancer free. I live and appreciate every day and try not to dwell on the pain and confusion of 2016. My motto is that I may have had cancer but cancer didn't have me!! My mastectomy scars mean I'm alive!! Looking ahead to health and prosperity.
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59 year old; Dx: 3/4/2016 w/TNBC in right breast 5.3cm tumor; Stage 11B; Grade 3; 4AC treatments complete/ 4 Taxol complete; Bi-lateral mastectomy 8/31/16 then 33 radiation treatments.
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gordon15
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Joined: Jun 22 2015
Location: San Diego CA
Status: Offline
Points: 788
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Posted: Jul 18 2017 at 5:38pm |
Thanks for your post, my wife is about a year also...
Edited by gordon15 - Jul 18 2017 at 5:39pm
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017
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123Donna
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Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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Posted: Jul 18 2017 at 6:40pm |
Hope this post will give others hope. I'm 8 years from my first diagnosis - stage 1. And 6 years from completing treatment for a recurrence - stage 3.
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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gordon15
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Joined: Jun 22 2015
Location: San Diego CA
Status: Offline
Points: 788
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Posted: Jul 18 2017 at 7:46pm |
My wife and I are also trying to forget the pain and confusion of chemo, then mast, then more chemo, we don't think about scars, but we are older, we try and move on from emotional issues...and rely on PET scans
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017
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English Jan
Groupie
Joined: Sep 23 2007
Location: United States
Status: Offline
Points: 97
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Posted: Jul 20 2017 at 6:14pm |
Hi Everyone, Here I am .. a Florida survivor from 2007 ..10 years and healthy. I apologize for not writing ... for not giving hope that we can and do survive/thrive.
No recurrences ... healthy and happy. I was terribly afraid in the beginning and every twinge I thought it was back. Even though I had no pain ..go figure!
The chemo whacked me and wiped me out for what seemed like years. The radiation gave me burns and years later periodic rib tenderness.
My Oncologist told me to stop scaring myself to death reading myths.. I would fax questions to him, so at appt time we could discuss my fears.
Each time I went to my Oncologist I would say "Hi English Jan here, your Triple Negative" .. just to keep it fresh. Instead of the 5 years , my onc. watched me for 7...he liked me..lol.
Now its just me and my GP ... I'm 63 now .. had a colonoscopy (Family history of colon cancer) in 2014 and had polyps removed.
I have no fear of recurrence any more .. I once asked my Onc. "How do I know I've got rid of cancer?" His glib and helpful reply ... "When you die of something else.".
So I'm planning on dying at 96 from a lobster dinner overdose .... LOL
So I guess I became .. oh, I don't know .. alive and living a day at a time, me and my family, friends and posse of docs did great .. I know if it comes back, we will tackle it again.
Get your posse of family, friends, docs, and especially our TNBC friends together and hang on.. Love to you all English Jan
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FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008.
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gordon15
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Joined: Jun 22 2015
Location: San Diego CA
Status: Offline
Points: 788
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Posted: Jul 22 2017 at 7:49pm |
English Jan: thanks for posting your update that you are stable after 10 years, it's great to hear.
By the way, my wife's doctors are not saying NED anymore, the pathologists aren't either, they say "nothing new" or "stable" ... I really don't think they know if there is evidence of disease, thus they are no longer claiming "NED" (No Evidnce of Disease") That's fine by me, I have no problem with this, doctors are not God.
Edited by gordon15 - Jul 22 2017 at 7:50pm
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017
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Cbardar
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Joined: Jul 22 2017
Location: Ohio
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Points: 9
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Posted: Jul 22 2017 at 8:17pm |
Mine has come back it's been a year any advise for me. Since yours came back twice.
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Cbardar
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Joined: Jul 22 2017
Location: Ohio
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Posted: Jul 22 2017 at 8:19pm |
123Donna wrote:
Hope this post will give others hope. I'm 8 years from my first diagnosis - stage 1. And 6 years from completing treatment for a recurrence - stage 3.
Donna | Mine has returned and I meet with the doctors on Monday would love to reach out to you. I am really scared
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gwendolen
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Joined: Aug 12 2017
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Points: 6
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Posted: Aug 14 2017 at 11:02pm |
Love seeing all the long term survivor testimonies. Really gives me hope!
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bearsilu2
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Joined: Dec 31 2010
Location: Milton, NY
Status: Offline
Points: 42
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Posted: Oct 06 2017 at 12:15pm |
My twin Nancy is 7 years cancer free! She has her appointment this week and has made big changes in her life. We moved from New York to North Carolina and the assortment of BC doctors down here is a joke. We have been proactive, I have not yet been diagnosed (go Barb go Barb) and Nancy is feeling way more positive. Being an identical twin is hard enough seeing your sister get TNBC but we are positive now. We go on vacations, we go to the beach at night to see full moons, and we love our kids even more. Nan spends money like it is nothing lately but we are so so happy the preventive chemo and radiontion has done its work!
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Barbara A. Wild
Identical Twin Sister of TNBC diagnosed 12/2010 stage 2 Grade 3 Lump. 1/2011, Chemo 2/2011, Radiation completed July 2011. 33X
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English Jan
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Joined: Sep 23 2007
Location: United States
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Points: 97
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Posted: Oct 06 2017 at 5:21pm |
hi Cbardar, How are you doing? Whats happened since your last post? Jan
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FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008.
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Cbardar
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Joined: Jul 22 2017
Location: Ohio
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Posted: Oct 06 2017 at 9:54pm |
I was diagnosed in July 2017 with recurrence had lumpectomy in August. Pathology report came back 1.1 cm idc no lymph nodes now I am Er-Pr-/Her 2 postive. No one every told me this could happen so I am in shock. Went to get 2 options this time. I live in Columbus Ohio going to the James for treatment ranked 5 for top cancer hospitals in the Us. I am doing 6 rounds of chemo called TCHP it is rough. Had my 2nd one today first one I ended in the hospital with fever and Uti. Hoping this one is better. Then I will do 30 days if radiation and then a year of Herceptin and Perjeta. Then pray that this will not come back. Thank you for asking about me.
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mswow
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Joined: Mar 30 2017
Location: Vancouver
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Posted: Oct 18 2017 at 8:42pm |
Hi Cbardar,
So sorry to hear about your recurrence. I am just reaching the 1 year mark from my diagnosis. Have had chemo, surgery and rads.
I am curious, how did you realize you had a recurrence?
Wishing you all the best.
S
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gordon15
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Joined: Jun 22 2015
Location: San Diego CA
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Points: 788
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Posted: Oct 18 2017 at 9:22pm |
We're sorry to hear about your recurrance and am not familiar with the chemo TCHP but trust that your doctors will alleviate the side affects and you will get better soon.
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017
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Shirl4414
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Joined: Oct 19 2017
Location: Sonoma Co , Cal
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Posted: Oct 19 2017 at 8:00pm |
I am a newly (7 mts) diagnosed TNBC patient. 69 years old. Diagnosed 3/17/17 with TNBC in right breast, 5.6 cm tumor, stage IIB; bilateral mastectomy 9/25/17. 4 A/C 12 Taxol 4 Carboplatin
Chemo completed 8/31/17. Starting radiation next week.
Surgeon said cancer almost always comes back within 2 years. Go enjoy myself!!
Hard to do; scary. I would like to hear about more survivors!
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Kellyless
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Joined: Jun 18 2009
Location: Dallas, Texas
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Points: 1154
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Posted: Oct 20 2017 at 12:41am |
Congratulations on completing chemo! I and many others found radiation much easier than chemo, I hope that's the case for you. May I ask when they add the Carboplatin to your chemo schedule when you did the A,C and Taxol plus Carb? I originally did A.C. Every 2 wks 4x, then Taxol the same. This second time I did Taxol 1x a week for 12, with Carb added every 3 weeks 4 times. I've a friend recently diagnosed with 1 TNBC tumor and 2 Er/PR + tumors in one breast and she'll be doing all 4 like you have. Did they do the Carboplatin/Taxol like I did, together? I'm worried for her, all 4 altogether scares me :-( It's because Carboplatin was a really tough ride for me I'm sure, but ooof all four seems a lot. I'm regards to "go enjoy yourself!" , yes, it's tough to do. I'm finding it much much easier to do this time, much more than the first time. It may be that now the worst DID happen. And I just.... Got thru it. I'm now finally truly letting it go. I'm still working to get back as much physical normalcy as I can, but now it's just a "thing" I do - see Drs, have tests, go to PT - outside of that I'm living life, not dwelling on the what ifs anymore. I think I'd been waiting to exhale all those years between occurrences. If there's anyway you can work on letting it go (therapy and antidepressants help many) do it. My husband and I are happy, enjoying ourselves more now than before my first cancer. I guess I wanted to say out loud that your new normal can be great, you can enjoy yourself. It's a worth, achievable goal
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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gordon15
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Joined: Jun 22 2015
Location: San Diego CA
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Posted: Oct 22 2017 at 8:54pm |
Shirl4414: My wife had much the same statistics, at 65yrs old when she got TNBC (she got IDC/lobular in 2008 in her other breast but was not Triple Neg)
Her TNBC was about 5 cm, Stage IIIA, she had (4) lymph nodes cancerous but the carboplatin-gemzar chemo killed it (so the pathologist downgraded her stage from IIIC to IIIA) single mascetomy, Taxol chemo and radiation... she is fine now, and it's been about one year....
Fyi the radiation often includes the clavicle area, because there are lymph nodes under there, there, was a warning from my wife's medical radiologist, radio-oncologist, I don't know exactly what he is, but he's more an expert, he said the radiation "could affect the upper lobe outer portion of the lung" which it did, the trauma did occur to the top/outer portion of the lung, it shows up plainly on a PET scan, but it did heal itself, in 6 months, I think my wife had a very slight shortness of breath for about 3 months.
I don't know if TNBC comes back within 2 years. We try not to focus on that, because if it doesn't come back within 3 years, the probabilities start to go down
Yea, it's scary, but we try and block it out...
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017
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