Triple Negative Support

gsilvas

I was diagnosed with triple negative breast cancer on the 10th, I'm only 36 years old! They say the tumor is 1.5 centimeters and don't think that any lymph nodes are involed. I haven't had surgery yet. Are there any survivors out there with this type of cancer.

butterflylvr

Hey sweetie,
You are in very good company. I myself am not part of the triple negative group but many on this board are. I found another thread started a month or so ago and bumped it up for you, hopefully you will find comfort in what some of those girls have said. I am sure they will be along soon to touch base with you personally.

We are here for you, so don't be shy...
Hugs Lorrie

gsilvas

butterflylvr said:

Hey sweetie,
You are in very good company. I myself am not part of the triple negative group but many on this board are. I found another thread started a month or so ago and bumped it up for you, hopefully you will find comfort in what some of those girls have said. I am sure they will be along soon to touch base with you personally.

We are here for you, so don't be shy...
Hugs Lorrie

Thank you
It's bad enough to find out you have breast cancer but it's another blow to find out it's triple negative.I have 4 kids ages 4,6,15 and 19. My mom died at 40 of Lukemia and I am really scared!

MAJW

gsilvas said:

Thank you
It's bad enough to find out you have breast cancer but it's another blow to find out it's triple negative.I have 4 kids ages 4,6,15 and 19. My mom died at 40 of Lukemia and I am really scared!

Many survivors of Triple -
I'm one of them! And you will find many more on this board..I know you're scared...been there...we all have...I can't tell you not to be scared...it's normal...I hate the reason you found this site but so glad you did....many triple negative survivors will chime in and share their experiences with you...PLEASE don't look at this as a death sentence...it's not!

I'll be brief with my experience, but will share more if you'd like....I was diagnosed 2 years ago, April, 2009 with invasive ductal carcinoma...Stage 11a grade 3... The " a" meaning I had no lymph node involvement....my tumor was 2.2 centimeters....Triple negative....I found the lump myself, less then three months after my routine mammo and ultrasound...I had a lumpectomy May 2009....started chemo in June finished the end of August...started 33 radiation treatments in Sept finished the end of Oct. None of this is a day at the beach but I promise you, it's very doable...I tolerated Chemo well...had some side effects, but was never sick one time...not the first wave of nausea....and everyone is different...My chemo drugs were Taxotere and Cytoxan....

I am now 2 years since diagnoses and am doing well, for the most part...having a few non cancer related problems, otherwise well...all my mammos, blood work and scans are all clear and clean!!! Triple negative is one of the more aggressive types but there are some that are far worse, too....Triple negative responds VERY WELL to chemo.....according to all three of my physicians....

For right now, try to breathe...take one day at a time...all of this is much easier for us to say,for those of us who have been in the shoes you are now walking in...you are just starting this journey...it is perfectly normal to be scared witless! Have someone go with you to EVERY appointment! You need an extra set of ears...have them take a notebook and take notes...trust me, you may not hear half of what you're being told...that's normal also...your brain goes on information over load...

Whatever I can do to help you...you only need to ask...If ever you'd want to talk personally, I would be happy to share my phone number...I made a vow to myself that I will help anyone starting this journey....

Please continue to post...you will find dozens of us who can share...this site saved my sanity when I started the bc journey....no question is to small to ask...

Keep us posted...
Hugs, Nancy

sushi22

I was also diagnosed with
I was also diagnosed with triple negative breast cancer last october. Mine was stage 1, no nodes involved, grade 3. It is so scary to be told you have cancer and triple negative makes it even tougher to hear. A friend of mine was diagnosed 3 years ago with triple negative and she is doing great. Robin Roberts on Good Morning America also had triple negative. I've been through 8 rounds of chemo every two weeks, 4 A/C and 4 taxol, and I just finished my last radiation treatment out of 30 today. It's not as bad as I thought it would be. It is doable.
Hang in there! You are not alone in this. The ladies on this board are so wonderful and supportive. You can do this! You can beat this! Keep a positive attitude. If you need to talk, I'm here for you.

Suzi

jessiesmom1

TNBC also
In Dec. 2009 I was diagnosed with TNBC. I found it myself when I noticed the lymph nodes in my right underarm were enlarged. All kinds of diagnostics were done including mammograms, ultrasound, breast MRI, PET/CT scan, EGD,excision biopsy, axillary dissection and a Tissue of Origin test. No cancer was ever found in the breast tissue itself. The only cancer found was in the axillary lymph nodes. 2 of 22 nodes were positive. I was considered Stage IIa, grade 3.

I had a right mastectomy (during which a tissue expander was inserted)which was followed by 4 rounds of A/C (Adriamycin/Cytoxan) and 12 rounds of Taxotere. My last chemo was in August 2010. TNBC is supposed to respond very well to chemotherapy. I did not have any radiation. I am scheduled to have my exchange surgery on June 13th. At the same time the reconstructive surgeon will reduce and lift my left breast. I can't wait for a complete set of good looking foobs (fake boobs). My husband really couldn't seem to care less if I get the reconstruction or not. My 18 year old daughter and 21 year old son are more clinical about it and are more interested in the recovery process

There is a lot to say about side effects such as hair loss, fatigue, watery eyes, etc. but I will save that for another time. You have enough to deal with right now. When you find out what your treatment plan is let us know and we will be glad to chime in with our experiences and advice. There is so much to think about and so much to learn - including what seems like a whole new language.

Good luck and keep us posted.

IRENE

linpsu

Me too
There are a number of us TNBC sisters on here and we are always ready to support any newcomers. I was first diagnosed with DCIS, stage 0, TNBC in Feb.08. Had lumpectomy, then mastectomy, then reconstruction, but no chemo or radiation. Two years later it reappeared under my mastectomy scar - this time it was stage 3c. I had chemo first (dose-dense 4 A/C, then 4 Taxol)to shrink it (went from 8 cm. to .5 cm.), then removal of implant and more tissue, as well as 14 more lymph nodes (4 were taken during lumpectomy); 1 was positive. Then 32 radiation treatments. I had a hard time dealing with it when I was finished with treatment and realized there was nothing more that could be done, but I am doing much better now and trying to live life to the fullest. Feel free to check in here any time with questions and concerns. We are here to help you. Hugs, Linda

DianeBC

butterflylvr said:

Hey sweetie,
You are in very good company. I myself am not part of the triple negative group but many on this board are. I found another thread started a month or so ago and bumped it up for you, hopefully you will find comfort in what some of those girls have said. I am sure they will be along soon to touch base with you personally.

We are here for you, so don't be shy...
Hugs Lorrie

I am not triple negative
I am not triple negative either, but, wanted to welcome you and to let you know that we all will be praying for you. Let us know when you have your surgery and we will get the Pink Bus going to support you!


Hugs, Diane

padee6339

TNBC
I'm another one. Diagnosed with triple negative, stage 1, no lymph node involvement. I had a lumpectomy on October 13, 2008, 6 rounds of chemo and 36 rads. Every test since then has shown that I'm still clean and will celebrate my third Cancerversary at the end of September. Hard to believe it is sliding so far away, almost three years already. It seems like that time was a dream. But every day I'm reminded when I look at my poor sad little deformed boobiegirl. All I was told about being triple negative was that I was unable to use the medications like Femera afterwards. I just have to keep going back to be checked. Methinks me and my Oncologist will grow old together - LOL. She is a great woman who lost her mother to the disease and her sister keeps getting rediagnosed with it. She has spent her entire adult life fighting breast cancer. I wish you the best and will keep you in my heart and prayers.
Pat

laughs_a_lot

TNBC
TNBC is not a death sentence. It is however a LIFE sentence. And by life sentence I do not mean like a prison sentence. You now will want to be vigilant about getting all check ups in a timely manner the rest of your life. Yes it will change your perspective to this, "How can I take good care of myself today?"

I am currently in chemo for TNBC that was discovered in Feb or 01. I had a lumpectomy and had 2 lymph nodes out of 14 involved. The tumor ended up being 6.6 cm at it's largest dimension. However, there was a lot of gritty fiberous tissue along with the cancer. So I take it that though this tumor was larger than normal for a stage 2 breast cancer that there was plenty of hope in the pathology report or they would not have continued to keep me at a stage 2 with that size of a tumor.

I have grandchildren who I do a lot of physical activity with (gardening, landscaping, lifting heavy rocks). I still do almost everything that I did before with them. However, I do the things at a bit of a slower pace. Some of this slowing down would have happened with the aging process anyway. I am 54 years old and have always felt at least 10-15 years younger than my actual age. I was at the doctors office yesterday and the nurse practitioner who has known me for many years remarked how I still had a lot of strong leg muscles. I was telling her that this is the first time in my life that I have actually felt my age.

Yes I do get a bit of nausea with the chemo. It reminds me of morning sickness a bit. However, I do all the reccomended things I am supposed to do. I have one day out of 14 that is not the greatest day then maybe 2 more that are still good but not up to par. I work a 4 1/2 day work week with this diagnosis. This is why I say it is a life sentence. I am using all my time living my life to the fullest and I expect to do that for another 30 years. I had always put myself last before bc, but never again.

dmdudra

triple negative ...
mine was triple negative also back in 2009... they did chemo first since I have small ones and the tumor was kind of big.. well it shrunk it a lot.. then surgery with a lumpectomy which was a sigh of relief since at first my surgeon was talking complete mastectomy of the left breast... I was determined I was not going to lose my breast and I did not... then the radiation... keep strong and never give up... faith and hope will get you through this it did me and it will you... let us know if you need anymore support that is what we are here for...

dmdudra

dmdudra said:

triple negative ...
mine was triple negative also back in 2009... they did chemo first since I have small ones and the tumor was kind of big.. well it shrunk it a lot.. then surgery with a lumpectomy which was a sigh of relief since at first my surgeon was talking complete mastectomy of the left breast... I was determined I was not going to lose my breast and I did not... then the radiation... keep strong and never give up... faith and hope will get you through this it did me and it will you... let us know if you need anymore support that is what we are here for...

p.s.
my tumor ended up only being 1/10 of a centimeter and they took out 19 lymph nodes all clean of cancer... hang in there and never give up...

JoAnn4818

I'm here with you too
Hi,

I'm sorry you've been diagnosed with breast cancer. I remember feeling stunned when I first found out. I'm 53 and diagnosed with Stage 2, Grade 3 triple negative breast cancer. I have an 18 year old and a 22 year old. I'm doing everything I can to beat this thing because I intend to dance at their weddings some day!I went through with the surgeries and finished my chemo. I got a second opinion when I thought I needed it. Remember to be your own advocate.

Please come back and ask any questions as you go through your treatments. We're all here to help each other.

I'll be thinking of you and praying for you.

JoAnn

Cinkal

I was diagnosed at the
I was diagnosed at the beginning of January, age 39, with triple negative, stage 2A, tumor 2.3 centimeters, no nodes involved. A lump the size of an egg seemed to appear out of nowhere. I had a lumpectomy in February and started chemo March 31st. I have done five rounds and have three to go. Then on to radiation.
I know how overwhelming everything is at the beginning. There are so many tests and decisions. The unknown was the worst part for me. I am sure you are concerned about your children as well. I have two young children and they were my biggest concern.
I have managed to keep my life fairly normal during the chemo. I haven't missed any of the kids activities.
My oncologist assured me ,although triple negative is aggressive, it responds very well to chemo. I was fortunate that it had not spread to the lymph nodes.
Good luck on your journey. Try to take it one step and day at a time. Listen to your body and rest when it tells you to. Accept help from friends and family.

Megan M

jessiesmom1 said:

TNBC also
In Dec. 2009 I was diagnosed with TNBC. I found it myself when I noticed the lymph nodes in my right underarm were enlarged. All kinds of diagnostics were done including mammograms, ultrasound, breast MRI, PET/CT scan, EGD,excision biopsy, axillary dissection and a Tissue of Origin test. No cancer was ever found in the breast tissue itself. The only cancer found was in the axillary lymph nodes. 2 of 22 nodes were positive. I was considered Stage IIa, grade 3.

I had a right mastectomy (during which a tissue expander was inserted)which was followed by 4 rounds of A/C (Adriamycin/Cytoxan) and 12 rounds of Taxotere. My last chemo was in August 2010. TNBC is supposed to respond very well to chemotherapy. I did not have any radiation. I am scheduled to have my exchange surgery on June 13th. At the same time the reconstructive surgeon will reduce and lift my left breast. I can't wait for a complete set of good looking foobs (fake boobs). My husband really couldn't seem to care less if I get the reconstruction or not. My 18 year old daughter and 21 year old son are more clinical about it and are more interested in the recovery process

There is a lot to say about side effects such as hair loss, fatigue, watery eyes, etc. but I will save that for another time. You have enough to deal with right now. When you find out what your treatment plan is let us know and we will be glad to chime in with our experiences and advice. There is so much to think about and so much to learn - including what seems like a whole new language.

Good luck and keep us posted.

IRENE

I'm not triple negative,
I'm not triple negative, but, I want to say good luck to you and know that I will be praying for you.

Hugs, Megan

VCJM_56

gsilvas said:

Thank you
It's bad enough to find out you have breast cancer but it's another blow to find out it's triple negative.I have 4 kids ages 4,6,15 and 19. My mom died at 40 of Lukemia and I am really scared!

Triple Negative
Hello to everyone though this reply is for GSilvas.

I don't think I technically qualify as a Survivor yet since I just had my 12th of the first 12 rounds of Chemo Taxol / Carbo. I start he next cocktail on the 24th. I'll be taking Adriamycin & Cytoxan. I'm not looking forward to it.

Though I am now 54 Please know that I went through Breast Cancer 32 years ago at age 22. I wrote out my will, carefully put everything in order so my parents wouldn't have to, then prepared to fight. It was not Triple Negative at the time. If it was no one knew. I had 4 of 5 tumors removed did oral meds for about a month (most of that experience is now just a blur). Both times it was found because I knew something was wrong with my body and insisted on them finding out what was wrong.
This time I KNEW it was cancer even before any tests were done. From about 2000 until 2010 I had a green pea sized lump on the same breast. I diligently did my mammograms so I wasn't worried about it. Then around May of last year I began to realize that it was the size of a Bing Cherry. I was in the middle of trying to help my Best Friend get through her second battle with Cancer (first stomach cancer, then brain cancer). so I procrastinated but still kept tabs on what was growing within me. Finally after she passed I went full throttle into getting a diagnosis for the lump which was now the size of a very large orange. By the time it was removed it was the size of a large mango.

But more than anything I want to say to you that if you are a woman of Faith, these are the times where it will be tested. It's easy to say you have faith when all is going well.

Most people who are faced with their own mortality are afraid. It's normal and even healthy. It means you appreciate living. I have faced my possible demise far more times than most people ever do, even if twice my age. Both of my two previous careers placed my life in jeopardy on a fairly regular basis, yet I am still here.

I'm sure you've heard of soldiers who return from battle then die from a freak accident. More people die from slipping in their bathtub, or choking on a crumb than anything else. My point is prepare (ie make sure all legal paper work(s) are in order for your children and any wishes you have if things don't go well) then after that is done prepare yourself mentally, physically, emotionally and spiritually to fight. That means eat well, do things that keep your spirits up, spend quality time with your children, and surround yourself as much as you can with positive minded and supportive folk. Those that don't lift you up, keep away from.

You are not your mom and you do not have Leukemia. Plus the Science of Cancer has improved in leaps and bounds over the past few decades. My mother's sister was told back in 1962 that she had at the most 3 years to live. My mom's family had been hit repeatedly with an assortment of cancers already. However, my aunt ( a tiny mousey woman) declared that she was not dying until she was good and ready to go. She had cancer pop up in pretty much every part of her body over the next two decades. I started calling her the Bionic Woman. She is still very much alive. she had been completely Cancer free since about 1983. She has traveled to every continent several times over (except Antarctica) and is quite happy and healthy.

Your own state of mind and determination has more bearing on your outcome than you realize. Feel free to contact me and I will gladly be an ear when you need them.

I will keep you in my prayers.
Stay strong

dmdudra

Triple Negative
Triple Negative... yes there are a few of us out here I am one. I was diagnosis in January of 2009... 36yrs is very young at least you have that on your side..I was 46 when I got mine and my tumor shrunk down so much with chemo that instead of a mastectomy I had a lumpectomy instead...I found a lump in my left breast again last month and I am going in on the 7th of this month for test... I thought I was done with test... test test and more test along with needles... I was smart, last time and had a port a cath put in so much easier on the veins... and when done with all the treatment easy to get out...I am going to keep a positive attitude with my lump and hope/pray for the best... that it is only scar tissue this time... Last time my surgeon took out 19 lymph nodes all clean of cancer and my tumor shrunk down to the point that my surgeon was impressed... keep a positive attitude it will get you far... you are strong and you can beat this and be a survivor too..

dmdudra

Triple Negative
Hang in there you will do fine.. I got through it and so can you...

1acme

TNBC at 37
I am also TNBC, grade 3. I found a small lump in Dec/10
Mammo in Jan, Biopsy in Feb and I had Lumpectomy on Valentine's Day
tumour was already 4.5cm, removed 2cm centennial node and 14 Lymph Notes.
in 4 weeks between Mammo & Biopsy Tumour grown about 1/2 inch in size, so my surgeon took me ASAP.

On Easter Monday I start Chemo - 4x rounds AC (every two weeks), Neupogen and NEXT week I am starting another 4 rounds of Taxol.
I was never sick, actually I am eating like a horse and I am always hungry.
Yes I do have lack of energy, pain in joins/bones, developed bad Neuropathy on my feet & hands ..... but side effects of AC are very tolerable.

I lost about 70% of my hair (head/pubic) in about 3rd week and rest of the hair stayed unchanged (eye brow/lashes, legs or arm pit) only noticed that it does not grow (so no more shaving).

After completing my chemo my surgeon would like to do another re-incision as my margins were "too close" and later that I am opting out for Double Mastectomy.

I am 37 y/o without children and I will never have children as Chemo put me in Menopause and shuttled-down my ovary. So I decided to get double mastectomy to lower risk of reoccurrence as much as possible.

Onco told me that TNBC is quite aggressive (fast grow), but response VERY WELL to chemo, so I am hoping for the best.