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newalex
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Topic: long term TN survivor story please Posted: Jul 31 2009 at 3:20am |
We are all scared as newbies and your long term suvivors please come to post and offer encouragment. Your story mean so much to the newbies and please come and help !
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sharon rereg
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Location: Ann Arbor MI
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Posted: Jul 31 2009 at 5:24am |
Hi Newalex--I think I replied to you just a little while ago, so am "old news", but I have a recent piece of positive news. I saw my onc for the 6 month check up this week and she "graduated" me to yearly check-ups. She says I'm cured. Her experience is that if TN is going to morph into distant mets, it always does it within 4 years, and usually much sooner, being as aggressive as it is. It still can pop up as a new breast primary or recurrence in breast tissue. As you'll see from my signature I did the full "slash, burn, poison" routine, so I don't have much breast tissue left to worry about. That's a very personal decision, though.
I hope this helps.
Sharon
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dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED
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newalex
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Posted: Jul 31 2009 at 6:14am |
Sharon
So good for you. You must be really happy. I hope I will be like you too. What was your dx and how many nodes were you positive?
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sharon rereg
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Posted: Jul 31 2009 at 8:50am |
Dear Alex--I never knew exactly how many nodes, because I did neo-adjuvant chemo. But there was one palpable and positive at the time of biopsy.
Sharon
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dx 03/05 multi focal TN, lymph involvement.BRCA- 4 dd AC, 4 biweekely taxol, bil mast 08/05, 38 rads. NED
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newalex
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Posted: Jul 31 2009 at 8:55am |
hi Sharon
Did you have any family history? How old were you at dx? Was the tumor grade 3?
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Jessie
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Posted: Jul 31 2009 at 11:10am |
Well Sharon,
I'm catching up with you !! My year from hell was in the spring of 2006. Couldn't take the chemo due to complications, but my bil mastectomy seems to have done the trick. I've had scans every 6 months and been NED every time !! Working toward my 4 yr anniversary now..................
Having no treatment other than the mastectomy was scary and really concerned my doctors, and I can't say I lead a charmed life. It must be that all my cancer cells were localized in the breast --- or maybe all the vancomycin I took for the MRSA killed them -- almost killed me !
I feel sooooo fortunate to have gotten this far. Just this week I compared my pathology findings to those of someone else with ER+,PR+ BC and my prognosis was much, much worse. It's amazing I'm NED. Thank you Lord!
So NewAlex, I wish you all the very best. Please post your signature to let us know your TNBC details and experience so far --- we love to know what's going on. I'm proof that one CAN survive even when the treatment is compromised.
Hugs,
Jessie
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IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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rena
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Posted: Jul 31 2009 at 4:55pm |
Hi Alex! The ladies are probably tired of hearing my story by now, but you were looking for encouragement, and I've got some to give. I was diagnosed in 1986 with ER/PR-negative breast cancer. There was no HER test back then, so I was not labeled "triple negative." But my oncologist is certain that I was since I fit the profile: 37 years old and BRCA2-positive. I had 22 positive lymph nodes and am coming up on 23 years cancer-free. I suspect that there are many long-term survivors like me, who don't know that they were triple negative because that label didn't exist way back when. There is lots of hope out there and a lot of good, healthy life to look forward to. Take care, Rena
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Diagnosed 9/86. 1 cm tumor, 22 positive lymph nodes. CMFVP chemo, weekly for one year. 7 weeks radiation. BRCA2-positive. Multiple attempts at reconstruction (three's a charm)
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kmartin
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Posted: Jul 31 2009 at 5:27pm |
Hi NewAlex,
My encouragement comes from knowing 2 five year survivors...my boss chose to have lumpectomy, CT and RT, and my aunt had bilat mastectomy and then AC, T, and RT...both are 5 years out and no recurrance at all.
Kathy
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Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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newalex
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Posted: Jul 31 2009 at 10:49pm |
I tried to put my dx at signature but I dont know where and how to do it.
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newalex
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Posted: Jul 31 2009 at 10:53pm |
Hi Kathy
Was your boss and aunt also TN? It must be good to know them personally to chat and get encouragment.
My dx was 1 cm tumor TN and 1mm micromet in one sentinal node. I had mast. and dd EC and 12 weekly taxol and carboplantin and then radiation.
I often hear ER positive women with early stage live 20 yrs or longer but for TN I do not hear so many long term survivor stories. TN dx scares me.
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CarynRose
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Location: Robbinsville, NJ, USA
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Posted: Aug 01 2009 at 9:24am |
I don't know if Icount as a long term survivor. I keep asking my doc from when should I start counting.
I was first dx'd in June 2003, so I guess I'm a 6 year survivor. Of course, I am Stage 4 and I live with cancer everyday. At the moment, I'm dancing with NED and the stable boy (thank G-d).
Is 6 years good for TNBC, Stage 4? I don't know. But I have no intention of leaving here anytime soon (please G-d).
Caryn
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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newalex
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Posted: Aug 01 2009 at 11:26am |
hi Carynrose
May I ask what kind of tx did you get for your orginal dx in 03?
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CarynRose
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Posted: Aug 01 2009 at 2:50pm |
I got CMF. Cytoxan, Methotrexate, and 5Fu. It was 'gentler' and my oncologist felt that I'd be cured after the lumpectomy, chemo and a breast irradiation.
Turns out, that was probably a good thing in that I didn't get Adriamycin as my heart is still relatively healthy.
Of course, after 4 years in remission, I had a recurrence, but I believe that is because instead of a full lymph node removal, they just did a sentinal node biopsy and evidently there was more than one node.
That's why I believe you have to be aggressive with TNBC, especially if you are BRCA+ like me.
Cheers,
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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jody
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Posted: Aug 01 2009 at 6:29pm |
I am aware of two women both nurses in Southern California that had tnbc. One was diagnosed 12 years ago (and since verified that hers was in fact TN), the other 7 years ago. Both women are cancer free, Unfortunately I do not know what their stages were at diagnosis, they are actually co-workers of my cousins who is also a nurse.
As for myself, I am no where near long term, however it has been 1 yr and 3 months and so far so good....
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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
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kmartin
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Posted: Aug 14 2009 at 5:35am |
Yes, both were dx with TNBC...and neither has had any recurrence.
Sorry for the delay in response time,
Kathy
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Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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wrsmith
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Posted: Aug 14 2009 at 11:02am |
I, too, want to know about long term survivors. When I was diagnosed and even all thru treatment I was OK. Didn't worry about anything - just dealt with it. Now, it seems, I am obsessed with the beast recurring. I have a cough and back ache and am sure it is now in my chest. Seems like I want to have every test known to man now. If it is back I want to know! But there is no real reason to expect that it is back. I think I am working it all up in my mind! What is wrong with me?!
Diagnosed in November 2007 and I had a lumpectomy, completed chemo and rads by May 2008. 1.2cm, IDC, Stage 1b, TriNeg, Grade 3, node neg
Absolutely no reason to worry! I know......this too shall pass.
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Lillie
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Posted: Aug 14 2009 at 1:07pm |
Hello wrsmith & newalex,
Newalex, I am into my 4th year in remission. I was dx 6/9/06 with TN breast cancer. 2 cm tumor, stage 2b, grade 3, had left mastectomy 6/15/06 with sentinel + 2 nodes removed. Cancer cells were found in sentinel node so I had 9 more nodes removed on 6/22/09. Those 9 nodes were cancer free. On August 8, 2006 I started chemo. 4 dose dense bi-weekly treatments of cytoxin and adromician (sp), followed by 4 dose dense bi-weekly treatments of taxol and gymzar. The gymzar was because of a clinical trial I participated in. I have been through all of the stress both of you are describing, but if we are to have any quality of life, we have to let go of most of the stress.
wrsmith, my back also hurts, "bad at times". But I have scoleosis so my back hurt, bad at times, before I knew about the cancer in 2006. Same thing with a cough. I smoked for many years and have beginning lung issues (not cancer)(go figure). Sometimes my mastectomy scar feels strange and painful. I'm sure the "Big C" is back, but it is just a tightening of the tissue along the scar. A warm shower and massaging the tissue relieves the pain. All of my symptoms get worse when I am stressed about them. I can go to bed at night, get comfortable and sleep all night. I really feel if the back, scar, lung problems were an indication of trouble, I would not be able to rest at night.
My doctors assure me that I am in remission, based on touch (no lumps), sight (clean scans), hearing (good breathing capabilities and strong heart). I have been checked every three months since my treatments ended on November 15, 2006. I will now start on a every 6 month schedule of follow-up exams.
I hope this has helped a little to ease your fears. I know it helps me when I am stressing and read the up-beat posts of so many women and men on this site.
Love in Christ,
Lillie
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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kirby
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Posted: Aug 14 2009 at 4:34pm |
wrsmith I post on occasion. My stats are listed below my name. I was dx before they named TN. I had 1/2 the chemo most are now getting. I thought things seemed simpler, no port, no emend, decadron etc. But also no dose dense [after my time] and snb was quite new.
Good luck to you. I am almost 9 years out ! dx @ age 44.
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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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Sunday22
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Posted: Aug 14 2009 at 8:44pm |
Hi, I was four years away from my original dx when my cancer showed up again in the same breast. The first one was tnbc. This one (still in my breast) from the biopsy, seems to be "weakly er positive", but my onc calls it a recurrence.
So four years until recurrence or new cancer. If it is a new cancer, does this mean I'm still in remission from the first one? I am going nuts.
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MaryTwinA
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Posted: Aug 15 2009 at 6:40am |
Hello everyone, I am new to this site.....just signed up today. I was diagnosed with TNBC back in february...and had a single mastectomy the same month. I have been undergoing chemotherapy since March and have 4 more treatments left. I was on adriamycin and cytoxin for 3 month and now i am on Taxol. Lately, i have been concerned about a recurrence when i finish my treatments, however, i do not dwell on it, nor do i tend to get to negative.....God's Will, not mine.......what will be , will be....
That said .....i was wondering.......what percent of TNBC patinents have a recurrence.....is there a percent for the first year, 2nd year etc.... Just wondering.
This seems like a great information site as well as an opportunity for making friends.
Thanks ahead of time!
Mary in Montana
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