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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 5:19pm
My wife is going on about 9 months stable now.


Edited by gordon15 - Apr 01 2017 at 2:54am
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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tapimb View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote tapimb Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 9:20pm
I was diagnosed in 2007 at 37 years of age with TNBC. It has been 10 years without recurrence. I participated in a study for "high risk" cancer patients and was given 12 treatments vs the typical 8 treatments that I would have received.  

Thanks,

Marla 

TNBC 2007
Stage IIA (multifocal) Poorly differentiated tumor. High-grade tumor. Lymphovascular invasion. 
Dose Dense (DD) AC x6 followed by DD Taxol x6
BRCA+
Bilateral Mastectomy
BSO (ovaries/tubes removed)




Edited by tapimb - Mar 29 2017 at 9:47pm
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mswow View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mswow Quote  Post ReplyReply Direct Link To This Post Posted: Mar 30 2017 at 1:51am
Wow, Maria! Congrats! I am 27 years old and just finished chemo, awaiting BMX on April 19th. Your 10 year story gives me hope! Did you do radiation?
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tapimb View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote tapimb Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2017 at 11:27am
I did not have any radiation because my nodes were negative and no skin involvement.

Here are 2 more examples of successful treatment of TNBC: 
1) My cousin was 26 when diagnosed with TNBC in LEFT breast and it never returned in that breast. Treatment consisted of lumpectomy w/ radiation followed by 4 AC and 4 Taxol. 
2) A close friend found out she had TNBC late in the first trimester of pregnancy. She went through 4 rounds AC -> delivered healthy baby girl and followed up with 4 Taxol treatments. It has been 10 years and no recurrences.  
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tapimb View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote tapimb Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2017 at 11:35am
It is an emotional journey, I surrendered to the worry by praying and with the attitude that I was doing everything possible to fight cancer and would say to myself that "It's in Gods hands if it returns, I really don't have any more control."

I also recommend to not read too much on the internet, this was my mistake. Everything I read 10 years ago was very negative and made me more anxious/scared... However, I do think it is a good idea to know about your treatment regime and to get a second opinion if you have any concerns. 
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Natalie View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 31 2017 at 8:02pm
Hi All, it has been a while since I have posted. I am still here and kicking.I will be six years out from diagnosis in a couple of weeks. Rough road with fear of reccurance. Grateful for each additional day, month and year in this life.


TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (2) Thanks(2)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 02 2017 at 12:29am
I am close to 10 years and feeling fine.Hope that helps!
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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mswow View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mswow Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2017 at 1:45am
Thank you Denise, Natalie and Maria for sharing! It's exactly what us "newbies" want to hear! Positive stories. Denise, did you have radiation? The thing that's bothering me is that at my initial CT Scan, they said all clear - no nodes. Then a little late, upon second glance..one image - from one angle showed that there might be a slightly enlarged inner mammary lymph node (7mm). As you probably know, these nodes are inoperable. The good news is that at my last Breast MRI, it showed that all nodes were normal and clear from what they could tell - and they directly compared it to that original CT. My dilemma here is...do I still radiate even if I receive a complete pathological response? (fingers crossed) Again, Im stage 2, grade 3, and getting a BMX on a couple weeks here. My radiation oncologist said that it could potentially do more harm than good.  But everyone else I've talked to tell me that it's a very grey area, but if it was their daughter or if it was themselves, they'd probably do the radiation. By 'everyone' else, I mean my surgeon and my oncologist.  Do you have any thoughts or opinions about this? I don't know why this whole radiation dilemma is getting to me so much. 

Thanks in advance ladies!
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2017 at 7:22am
mswow,

I just wanted to share my story as I had a recurrence to an internal mammary  node(s).  I was dx stage 1, clear sentinel nodes, breast MRI showed only the original tumor, nothing else.  I had a bilateral mastectomy with chemo.  About 13 months after finishing chemo a PET scan showed the mammary nodes lighting up.  The consensus was that the cells escaped the tumor at/before diagnosis but were small enough that they did not show on the MRI so was not detectable at the time.  You are right, it is inoperable, but more chemo and radiation was done to hopefully kill any remaining cells.  Can you get a second opinion if it will help make your decision? 

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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 05 2017 at 8:59pm
I cant tell you because I really don't know your issues and I am not a doctor.  My tumor was less than 1cm.  no lymph node involvement.  I had to have 2 months of daily radiation.It was over my heart.  They wouldn't let me have the red devil chemo because he hurts the heart but they did want me to have nearly 40 radiaton treatments right over my heart.  I have tattoos they put so they wouldn't accidently hit my heart.  The radiation was simple next to the chemo.  But they did say that even years later it can cause you heart problems.  It is a very difficult decision.  Plus radiation can cause its own issues.  My main problem is the nice black tattoos.  One especially shows if I wear even a slightly low top.  Looks like a blackhead of something.  You really cant put makeup over it without it looking like it is makeup.  But the top triple negative doc at Stanford said to get the radiation.
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Kiki67 View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kiki67 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 07 2017 at 9:15pm
Hi everyone! I was diagnosed in February of 2010 with breast cancer. I am a 7 year survivor of TNBC! I had a bilateral mastectomy and also had my ovaries and tubes removed because I tested positive on the BRCA2 test. I went through 6 treatments of chemo and didn't have to do radiation because I opted to have the bilateral mastectomy done ASAP!

Last year (April 3, 2017) I had a fluid cyst in my pancreas. The fluid showed characteristics of cancer but was not cancer yet. So, Doc's recommended that I have part of my pancreas removed before it did turn into full blown cancer due to my history. I don't know why developed but I found out due to my history of x-rays that the cyst had been there for years but was very tiny. It had recently begun to grow. I read stress was one factor. I had lost my 20 year old son in a car accident 3 years before. I think that contributed to the symptoms.

Overall, I am told I am doing well although my body feels 10 years older than my age. I am currently 49, turning 50 in June!

I was extremely happy to make the 5 year mark. But I have to admit the 10 mark makes me nervous! Maybe because my mother in laws cancer metastasized after 10 years. She fought for 2 years but the treatments were not giving her a better life. They made her sick. I lost her one year after I lost my son.

Stay strong Everyone and live each day as if it were your last!
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2017 at 4:47pm
Kiki67: thanks for posting your story. Since my wife and I have only one child, I can'
t imagine the loss of your son, or any child....and the unknown stress that that it causes, I have no idea, if there is  some clinical analysis out there if stress brings cancer. I know hormones change.

It's normal to be nervous. Nervous is always in the back of my mind, wondering about my wife's future exams... It's hard to suppress., G

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 10 2017 at 7:08pm
mswow,
Hello,sorry you are in such a dilemma hope things get better for you very soon. I did have radiation but I did not have a bmx that is why so no other option for me, may be a second opinion on having radiation will help you, my mom had bmx but no radiation either they said she would not benefit from it but she was not tnbc, if it were me I think I would go for the radiation considering how tn may be aggressive,but that is just my opinion.
Best wishes for you!
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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denise07 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 20 2017 at 11:08pm
mswow,
How are you doing? Any changes? I have been thinking of you and wish the best for you!
Hugs
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
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1maJ View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 1maJ Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 2:46pm
Hello survivors!  Haven't posted in a while, (previous username was ImaJ but couldn't retrieve it) but this July it will be 2 years since diagnosis.  I did Xeloda at the end of my treatment and finished that in October.  I have my mammo in July, and I also do MRIs in between mammos, my surgeon wants me to do that for the next three years.  

I agree that it is so important to hear from survivors.  I remember being diagnosed and hearing nothing but bad news about TNBC.  I desperately wanted to hear from survivors, and you guys were all there for me when I so needed it.  Thanks!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: May 24 2017 at 4:45pm
Well I finally reached my 7 year mark.  Once you pass 3 years I believe the chance of recurrence drops dramatically.  So hang on for the next year.  But I still have to have blood work every 6 months but at 5 years the docs stopped the  tumor markers tests.  Never had a MRI.  Just mammos and blood work.  But you know I am still scared when I think about the cancer.  Just after a time especially after the 5 year mark it seems to not be top of my list anymore of stressers .  You kind of forget for hours sometimes even a day or two. 
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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tomigrandma@gmail.co View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tomigrandma@gmail.co Quote  Post ReplyReply Direct Link To This Post Posted: May 26 2017 at 9:32pm
Hello, I am triple negative but not BRCA positive I tested positive for the NBN gene I am Stage 1 size was .8 cm left side 3 lymph nodes tested negative I had a double simple mastectomy in November in January started chemo 4 rounds of every other week AC then 12 weekly rounds of Taxol which my last round will be next week no radiation therapy. My oncologist says they will not do any scans just exams and blood tests I will go to the oncologist every 3 months. Is that common to not do scans?

Edited by tomigrandma@gmail.co - May 26 2017 at 9:33pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cutnqrts Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2017 at 6:58pm
Hi, I'm Ruth. New to the group. Triple negative, braca negative. I had bilateral mastectomy two years ago this month, then four rounds of AC, finishing around Labor Day, 2015. My doc hasn't done much in tests afterwards. He keeps asking me if I have fevers. That's it. I've not had a pet scan. My next follow up is in sept. I'm working almost full time. Tired most of the time. Some anxiety issues. But, keep moving when I have to. My husband thinks I'm lazy. Oh well.... will be interested to hear from you all. Thanks ☮️

Edited by Cutnqrts - Jun 03 2017 at 7:00pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mswow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2017 at 7:45pm
Hi Denise,

Sorry for the late reply!! You messaged the day after my surgery and I completely forgot! Thank you kindly for thinking of me.

Update: I had a full BMX and I got my pathology report back - I HAD A COMPLETE RESPONSE! :) The dilemma of whether to radiate of not ensued shortly thereafter again, and after MANY second (third, forth, fifth..) opinions, I have decided to continue and do radiation. It was a very split decision for many medical professionals but due to my age and it being Triple Negative I decided that it might be best to do it. I have not started yet, nor have a had my initial CT scan and plan for it. I am currently undergoing reconstruction and getting explander fills weekly. My plastic surgeon would like me to be completely filled before we move onto reconstruction. So far the process has been alright apart from my last fill which caused me severe pain and continues to give me discomfort almost a week later. I have my final fill this upcoming Monday and I hope to be relieved from this pain sooner rather than later. Overall, I am very hopeful. And to keep my mind from wandering back to 'C' word, I've gotten myself a little companion named Teddy. And by companion, I mean PUPPY! That has been it's own completely separate and rewarding challenge.  I hope you are doing well also! Wishing you all the best. 

S

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mswow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2017 at 7:47pm
Hi, I am from Vancouver, Canada and it is also common not to do any testing unless symptoms arise. This is a little concerning to me as well. I just finished Neoadjuvant Chemo in March, BMX in April and currently in the process of reconstruction just prior to Radiation which I expect to start this month or early July. 

All the best. 
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