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Anyone here over 10 years without recurrence

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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=12082
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Topic: Anyone here over 10 years without recurrence
Posted By: New insight
Subject: Anyone here over 10 years without recurrence
Date Posted: Jun 21 2014 at 10:24pm
I just want to hear some encouraging examples and some tips from them.



Replies:
Posted By: kirby
Date Posted: Jul 01 2014 at 2:39pm
New Insight,

I haven't been on this forum in ages. Weird glitches with the system and my computer. Sorry no one else has responded. In the archives are several topics along this line with many stating how many years out they are. I am probably about one of the longest. TN wasn't named until around 2006. I was dx in 2001. Even prior to that it was sketchy in always knowing what your exact dx was because science/research/technology just wasn't there yet. In 2001, I only knew what I didn't have. I wasn't er + nor was I her2 +. it kind of left us in no mans land. If you look at the dates of when some have joined, that will also give indication of timing. I can only give encouragement. I have no tips. For me, I just had to figure it was luck of the draw to have been dx. Good luck to you.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: New insight
Date Posted: Jul 02 2014 at 8:42am
Dear Kirby

Thanks for your reply.
You said no tips and does it mean you did not change anything like diet or exercise after recovery ? No supplement ? Still full time job ? etc...

Best wishes
New insight


Posted By: Lillie
Date Posted: Jul 02 2014 at 9:42am
Dear New Insight,

Kirby has been an inspiration to so many of us. I was diagnosed in 2006, the year that triple negative got it's name. I joined this site in 2009 after retiring from my job. I finally had time to surf the internet and found this site. I Thank God everyday for this site because so many people have gotten direction and information they wouldn't have otherwise gotten.
As for me... I am an 8 year survivor. I initially had a mastectomy and very aggressive chemotherapy.
I did work for over 2 years after treatment ended before I retired. I have taken vitamin D3 for several years now, also an 81mg. aspirin daily. I have taken Evista for many years. There has been a lot of publicity about this drug recently. I stay busy with volunteer work which offers me a chance to be very mobile and use my mind a lot. I do require more sleep than before but, some of that could be age related. I do stay away from fatty foods as much as possible. I even season my veggies without the 'seasoning grease' I once used. These are some of the changes in my life (since cancer).
I know I'm not 10 years out, but 8 years is a good start.

Love and God Bless,
Lillie
Lillie

-------------
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


Posted By: kirby
Date Posted: Jul 17 2014 at 11:35pm
New Insight,

I felt I lived a fairly healthy lifestyle [other than stress, which I tried to control, I am pretty low key] before I was dx. I exercised, tried to eat right etc. I was so tired of taking pills that after tx I just had a hard time swallowing them! I try to stay more on top of it now, taking my calcium and yes, I eventually had the vit. D test and was low, so try to take that and I do take a low dose aspirin. But that is it. I still exercise and work full time. I just don't have the energy I used to but just age at this point, chemo was over 13 years ago.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: susanb
Date Posted: Jul 18 2014 at 10:31am
I am 8 years out. Yes, my life changed some after chemo. Chemo put me in early menopause so that might explain some of the changes. There certainly is a "new normal" as much as I hate that terminology. I tire more easily, my sex drive is much lower. I try to exercise more and I eat fairly healthy- vegan except for fish and eggs. Chemo was rough for me (it's easier for some I am told). The biggest tips I can give you is drink a lot of water, and remember that you will finish chemo and get your life back and it's all worth it. I like to say that "Chemo sure beats the alternative."


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Dx June 06 stage 1 at age 46, no nodes, clean margins, Ki-67 at 54, Bilateral Mastectomy, 4 rounds AC, complete hysterectomy Aug O7. Mother and Grandmother both died of breast cancer dx in their 30's.


Posted By: JackiWalkr
Date Posted: Jul 18 2014 at 12:39pm
I am on the fence for lumpectomy vs mastectomy. They had the same percentage for survival. I have heard some say do radiation if it's offered but it's only offered with lumpectomy. I am seeing more long term with mastectomies. Now I see lumpectomy too. Only I can make this decision, sometimes it sucks to be an adult.    

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DX IDC TNBC 3/31/14 Age 46 Stage 2a, Grade 3, 2.1cm, 0 nodes, (4)Carbo(5)Taxol. AC DD 4 of 4. Lumpectomy 10/30/2014 NED. 33 Rads 2/12/15. BRCA 1/2 normal=negative


Posted By: WEBTASTIC
Date Posted: Jul 18 2014 at 7:16pm
I was stage 2 , grade 3 , trip neg, BRcAa-, 2 nodes explored and 1 with micro removed. I had a bilateral mastopexi, with reduction. Lumpectomy, 8 rounds chemo- half through! , 33 rads are next.....I got lumpectomy but I think everyone has to do what's best for them....I'm not looking forward to rads but it will kill out anything left over so you have to do what you have to do. ....I'm 43 so either way would have been fine, my surgeon just was adamant about the lumpectomy. I go to cancer treatment centers of America in Tulsa ok......they are awesome! Hope this helps.


Posted By: SagePatientAdvocates
Date Posted: Jul 19 2014 at 10:01pm
Dear New Insight,

Next month my daughter will be ten years out, NED.

She was diagnosed at the age of 36...first had a quadrantectomy and then during her four months of AC+T found out she inherited the BRCA1+ mutation from me. She then had bilateral mastectomies and at the time of her exchange surgery she had gynecologic surgery. 

She eats a very healthy diet and does yoga four times a week. She is very fit. 

I really can't point to a particular reason for the fact that she is NED. We are just delighted that she is.

good luck to you!!!!

warmly,

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: Lillie
Date Posted: Jul 20 2014 at 4:14pm
Dear Steve,
What a wonderful post about your daughter. I am happy for her and your whole family. She is a testimony of inspiration for so many of us.

God Bless,
Lillie


-------------
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


Posted By: sue
Date Posted: Jul 20 2014 at 6:47pm
Dear Steve,

Thank you for posting this beautiful, encouraging news. So happy for you all and that you are able to share this anniversary with us.

Love and Peace,
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: surfmom
Date Posted: Aug 03 2014 at 10:45am
Hi....  I just found this site and have just been rediagnosed with breast cancer after 18 years.  This time it is triple negative.  My oncologist said my last breast cancer was not triple negative.  I had a lumpectomy, radiation, chemo and five years of tamoxifen the first time.  Just some thought for all of you out there with the decision of lumpectomy vs. mastectomy....at this point in my life, I wish I would have had the mastectomy 18 years ago.  Now, I have to have the mastectomy and chemo again.  The plastic surgeon has told me that because I had radiation 18 years ago, there will only be a 50% chance success rate with the reconstruction after mastectomy.  I have also been told that there is only a 20% chance of getting breast cancer again after 20 years.....I guess I am one of the lucky 20%.  I hope this info is somewhat helpful to those of you trying to make the decision of lumpectomy vs. mastectomy.


Posted By: andyr
Date Posted: Nov 18 2014 at 1:18am
I am new bie here you have to take help from the senior member of this forum/.//


Posted By: Gma Sue
Date Posted: Jan 16 2015 at 5:52pm
HI
I just signed up as a member today.   Thirteen years ago I had breast cancer.  My cancer was not found on the mammogram taken in Feb.  I found a lump myself in April. Went to the Dr. in May and found that I had a golf ball size lump on my left breast. At first they thought it was a water cyst, but after a needle biopsy, it was proven to be an agressive breast cancer.  At that time, there was no mention of Triple Neg type. I had a lumpechotmy, chemo and radiation.  I was doing great.  On Dec. 12 of 2014, I was supposed to have my last check up and be cancer free. Yeah, the Dr. as he walked into my room he said you have breast cancer again.  We will talk to the surgeon and he was out of the room in 15 minutes. I had always felt a thickness in the same breast, but oncologist ( the same Dr.) said it was just a callous from my bra.  Years ago, when I was afraid that cancer would come back, the Dr said I had surgery, chemo and radiation, it won't come back.

 So I went to a different clinic this last time for my mammogram. They alerted the thickness and as a result I was told I had breast cancer again, in the same breast.  The Dr.s here are scratching their heads. Normally, Triple Neg comes back in two to three years in a different part of your body. My cancer  waited thirteen years and came back to the same breast. They do not know why.  I went to a different clinic this time for treatment, as I never cared for the Dr that I had previously, I just tolerated him. 
I am sort of in a zone, I started chemo on Jan 5th, and of course there are always side effects but I am very thankful that there has been no nausea this time. 
Everyone around me seems to be in a panic, but maybe I am numb, I don't know.. I am just here.




Posted By: SagePatientAdvocates
Date Posted: Jan 17 2015 at 2:23pm
Dear Gma Sue,

Welcome to TNBC Foundation. I think you will find our 'family' to be a wonderful resource. 

I am sorry to read of your recurrence after all these years. 

Did they determine that your new tumor is TNBC? Most likely it is, especially in the same place, but sometimes cancers mutate and it is important to know if yours has.

good luck to you..

warmly,

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



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