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Anyone here dealing with Triple Negative?

aligrace726
Posts: 5
Joined: Mar 2013

Hi, Is there anyone on here dealing with triple negative?

Rague
Posts: 3257
Joined: Aug 2009

but there are several here who are.  I'm sure some will be replying in a bit.

Winyan - The Power Within

Susan

survivorbc09
Posts: 4378
Joined: Jun 2009

I'm not triple negative but wanted to say hi to you and to wish you good luck.

Hugs, Jan

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

I was diagnosed with TNBC in Dec. 2009. There are a number of us with that diagnosis who regularly post on this board. What sort of information are you looking for aligrace726?

IRENE

aligrace726
Posts: 5
Joined: Mar 2013

Just general information about your experience, treatment and how you are doing now. After my stereotactic I was diagnosed with DCIS and. I've had a lumpectomy and got clear margins and was told all I needed was radiation, but because my doctor said it was aggressive and could come  back I chose to have a mastectomy. After all my results came back it turned out to be Triple Negative. I was diagnosed March 22nd.

I go to my first Oncologist appt. tomorrow and I'm scared to death.  When I found out my diagnosis I came home and googled it and after reading the first few things I got really scared and quit.

So I would rather hear from real people that experienced it and what their thoughts are.

Thanks I appreciate the reply.

Did you have the BRCA test done?

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

When I was diagnosed with TNBC it was Stage IIa, grade 3. I discovered it when I felt a lump in my right underarm. No lumps/masses/tumors were ever found in the breast tissue itself. It took a Tissue of Origin test to determine that the cells were breast cancer as opposed to some other type of cancer that had migrated to the lymph nodes. In order to get to this diagnosis I  had an excision biopsy as well as a complete axillary dissection. I did not have any genetic testing done.

After the diagnosis I had a right mastectomy and had a tissue expander put in at the time of the surgery. A few weeks later I had a port put in. Chemo then began. I had 4 rounds of A/C and 12 rounds of Taxotere. I did not have any radiation. A small book could be written on my chemo side effects but we won't go there until it is determined if you are even going to have chemo. As you probably know from your reading, TNBC typically responds well to chemo but there is no hormonal treatment for it.

My last chemo infusion was in August 2010. I have had 2 reconstruction surgeries since then. My oncologist says I am in complete remission. On this Board we like to say that I am dancing with NED (No Evidence of Disease). I saw my daughter graduate from high school 4 months after my mastectomy. I missed the college orientation (too sick from chemo; daddy went) but I was there in September for Freshman Move-In Day and in October for Parents' Weekend. I even climbed the steps (really slowly) in the football stadium for the game.

If possible, take someone with you to your oncologist appointment. They might remember to ask something you have forgotten. Keep a small notebook with you to write down any questions that you think of. Ask LOTS of questions. There are no dumb questions. There is a lot to digest mentally after a cancer diagnosis. Come here for information and support.

Good luck. You can do this.

IRENE

aligrace726
Posts: 5
Joined: Mar 2013

Congratulations I'm so happy for you.

I'm just worry if I have a good oncologist and if she knows how to deal with it, and wonder if I show also get a second opinion. 

Did you?

I'll ask her tomorrow if she has had any of these cases. Is TNBC common? I don't know a lot about this. I always thought breast cancer

was breast cancer. I didn't know there were so many different factors and kinds.

I'm 47, had the left mastectomy, but put reconstruction on the back burner for now. I just pray to get through this first.

Did you ever consider have both breast removed? Did your doctor recommend it at all?

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

To answer one of your questions: 10-20% of all breast cancer patients have triple negative breast cancer. I found www.tnbcfoundation.org to be a good source of information.

I did not get a second opinion from a medical oncologist because my husband had previously been diagnosed with colon cancer (yes, he is fine now) and I had a great deal of faith in his surgeon and his oncologist. If you have the least doubt about the competency of your oncologist you should absolutely get a second opinion. Ask your primary care physician who he/she would recommend. We got our oncologist referral from the general surgeon. You can even ask your oncologist. They shouldn't take offense. Getting a second opinion is common. By the way, I was 51 at the time of my diagnosis.

There are indeed a lot of types of breast cancer - intraductal, intralobular, inflammatory, triple negative, triple positive, and every variation in between. You will get quite an education when you begin to read about it.

Neither my oncologist nor my surgeon suggested that I have both breasts removed and it never occurred to me to do so. I now realize that depending on your medical history, stage, cancer location, tumor size and other factors that there my indeed be reasons to have the non-cancerous breast removed. That is one more item to be discussed with your doctors.

Don't forget your notebook!

IRENE

mangobbxx
Posts: 2
Joined: Apr 2013

Hi alice grace,

 

I have the BRCA1 gene and i was tested thanks to my mother.  my mother has triple negative breast cancer and has had it for the past 13 years with some lymph node involvement.  she decided to have a double masectomy with reconstructive surgery which worked out great for her for a number of years because it gave her a chance to feel like a woman again.  i know that the removal of one's of breasts can feel humiliating and defeminizing but there are options out there like reconstructive surgery.  triple negative breast cancer is agressive which is why its good to catch it early, but the thing that most people dont realize is that people who have triple negative breast cancer usually have better prognosises if they are able to catch it at a relatively early stage. this is why it is important to be vigilant about every thing that goes on on your body, even if you are cancer free, several years from now.   the difference between triple negantive and other types of cancer is the type of receptors that are on the tumors.  receptors are markers that signal to different hormones to attach to it.  usually there are three types of receptors that are on breast cancer tumors:  herceptin, progesterone and estrogen.  a triple negative tumor doesnt have any of these. chemo therapies are targeted towards these receptors. the difference in treatments is in targeting these receptors.  i know it sounds like a scary thing because the doctors say its aggressive but there is so much research being done on this type of cancer now compared to 10/15 years ago and there are new drugs coming out every so often.  try looking at the triple negative breast cancer foundation website http://www.tnbcfoundation.org/index.html

there is a ton of information on this website.  

my best wishes to you during your experience with this.  you will get through this!  i know that it can be scary not knowing about all of this but knowledge is power and there are a lot of knowledagable doctors out there on this topic and a lot of good resources! 

Brooklynchele
Posts: 123
Joined: Sep 2010

Hi Aligrace,

I was diagnosed in June 2010 with Stage IIB TNBC.  I am 46 now.  I had a lumpectomy and then a second for clear margins.  I had 2 rounds of chemo.  No radiation.  For me, and everyone is different, I found it best to completely ignore the numbers and percentages.  I listened to my doctors but made the decisions I felt were right for me. 

I did interview oncs though.  I think you had asked that question. You are going to be dealing with your onc for a long time.  Be sure it's someone you feel comfortable with and trust. 

I also had the BRCA test done because I have a daughter.  I have no history of breast cancer in my family.  The test was negative.  I guess that means I was just lucky, huh?

Don't let the names (TNBC) or numbers freak you out.  Just do what you feel you need to and take care of you!

Hugs,

Michele

 

 

JoAnn4818's picture
JoAnn4818
Posts: 81
Joined: Jan 2011

I was  just stopping by the site and saw your message. I was diagnosed with TNBC stage 2 A. One lympy node was involved. I had 2 failed lumpectomies then a single mastectomy. This was followed by 4 months of chemotherapy which I finished 2 years ago. Chemo was really hard but I'm doing fine now. I've read that after 3 years TNBC has the same survivor rates as Estrogen positve breast cancer and after 5 years the survivor rates may be even better. 

I wish you all the best. I'll be thinking of you!

JoAnn

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I am dealing with Triple Negative.  I was originally diagnosed in Nov. 2009.  I had my right breast removed, did chemo and radiation but for whatever reason it came back two years after I finished treatments.  I am back on chemo and doing well (I think).  In 2009 I was stage 3a and now I am stage 4.  I don't usually answer when someone such as yourself post questions about TNBC because I don't want to discourage you when you are just starting your battle but I decided to reply to your post because I want to encourage you to fight with everything you have and to beat this ugly thing called cancer!  Please keep us posted because we really do care.

HUGS!!!

Jamie

joyboy63's picture
joyboy63
Posts: 8
Joined: Oct 2011

I was diagnosed with TNBC in February 2011.  I can completely relate to how scary it is to research this type of breast cancer.  I believe that fear is your biggest enemy.  It can lead you to do things that you wouldn't do normally.  I have been told that keeping stress to as minimal as possible is crucial for recovery.  I worked in a very high stress environment for several years and am convinced that this contributed to my immune system becoming compromised.  A few months ago I heard on the news that doctors are coming close to discovering what causes the mutations that lead to TBNC and that it looks to be linked to the same gene that causes ovarian cancer. This means there could possibly be a better treatment in the future.  That is alot of discovery especially since I was told two years ago that they had no idea what caused this type of cancer.  I had bilateral mastectomy and did AC/Taxol plus radiation.  Chemo is very individualized and affects everyone different.  My advice is to know what to do with whatever symptom you have and to always go to the ER if you have a fever. 

My thoughts are with you on this journey you are embarking on.  Please rest in knowing that you are not alone.

Joy

WJAleeman02's picture
WJAleeman02
Posts: 2
Joined: Mar 2013

Hi, I just join today, need to talk to anyone that is wearing a pair of the same shoes... I was diagnosed with TNBC a year ago.. How do you get rid of the stress in your life?

That is what I am really struggling with, I hold my stress inside, and yes I think that is very unhealthy, but I don't know what to do? I did call and make an appointment to see the cancer psychologist, I see her next next week, but is ther anything else I can do?

 

WJAleeman02's picture
WJAleeman02
Posts: 2
Joined: Mar 2013

Hi, I just join today, need to talk to anyone that is wearing a pair of the same shoes... I was diagnosed with TNBC a year ago.. How do you get rid of the stress in your life?

That is what I am really struggling with, I hold my stress inside, and yes I think that is very unhealthy, but I don't know what to do? I did call and make an appointment to see the cancer psychologist, I see her next next week, but is ther anything else I can do?

 

jessiesmom1's picture
jessiesmom1
Posts: 708
Joined: Jun 2010

Hi aligrace726. I know how nervous you were about your first oncologist appt. yesterday. Who could blame you? Please let us know how it went for you. Hope you got a lot of your questions answered.

IRENE

Patti1967
Posts: 186
Joined: Mar 2013

Good luck to you, always know ur not alone and please get a notebook.  I never went to an appt without mine:)  It is easier to remember questions while at home then when ur at one of your appointments, especially in the beginning.

Patti:)

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

Wishing you good luck too and do take a notebook and someone with you as you probably won't remember everything.  Some on here even took a tape recorder.  It's hard to hear and focus on all that our doctor's say sometimes.

Hugs, Debby

cejota
Posts: 24
Joined: Jun 2010

Hi Aligrace,

I was diagnosed in October 09 with Stage 1 Grade 3 TNBC.  I had AC/T and a double mastectomy.  I'm the only one of my grandma, aunt, mother, sister (survivors) who is triple negative.  How do I deal with it?  I pray that I make 5 years......there's really not much I can "do" about it.  I'm very thankful in a way that I don't have to take 5 years of oral therapy!  That can make one feel pretty crappy, too! 

I have to say that I freaked out a little looking at on-line info.....we just have to remember....we are all different, and after 3 1/2 years, I don't want to dwell on it and I don't know if I'll have a recurrance or another kind of cancer.  I think with time comes a sense of peace.  Others may feel very differently.  

I trust my Onc. 150%.....She takes very good care of me!

Take good care!

cj

DEBBIE COFIELD
Posts: 1
Joined: Mar 2013

I AM . DON' T REALY KNOW ANY THING OTHER THAN LIMITED ON CHEMO THAT WORKS I WISH SOME ONE COULD LET ME KNOW WHAT MY CHANCES ARE TO LIVE PAST A YEAR

I DO 5th CHEMO FRI CANT REALY TELL ANY DIFFERENTS IN THE MASS IN MY LEFT BREAST.

treecy1106's picture
treecy1106
Posts: 142
Joined: Apr 2011

Another TNBC pink sister here! Stage 2A disgnosed in March of 2011. I am happy to say I am 2 years cancner free!! Triple Negative is a paradox. I was told that the most aggressive time for recurrence is 9months to 3 years after diagnosis. After that your chance of getting it is almost nothing. A lot different than our estrogen positive pink sisters.

Since I had so much fear....I started studying nutrition. I went back to school during my treatment and became certified as a health coach. I even wrote a book which you can download for free on google.

Get your body where it needs to be to help the chemo do its job! Ask your Doctor if you can take pribiotics while going through treatment. You need to protect your good cells!!!

Let me know if I can be of any help to you!

If I could get through this you can too and you will be fine!!! We are all here for you!

(((HUGS)))

Patrice

loyama
Posts: 1
Joined: Mar 2013

THanks for you post Patrice.  I am curious to read your book.  What is it called?  How can I access it?  Thanks for your help.

Leslie

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

How did your oncologist appointment go?  Hoping you can update us soon.

 

Hugs, Debby

treecy1106's picture
treecy1106
Posts: 142
Joined: Apr 2011

Leslie...

Just google.."WHat to do when you are diagnosed?" by Patrice Sarnatora

I probably made some grammatical errors but I wrote it one night after chemo.

 

Hope you enjoy it and get some great info from it!!!!

Let me know if you have any questions...I am certified now as a Health Counselor.

 

(((HUGS)))

Patrice

treecy1106's picture
treecy1106
Posts: 142
Joined: Apr 2011

Hope you are doing well!!!! Just go to google and thpe in "WHat To DO WHen You Are DIagnosed? by Patrice Sarnatora.

You can download it from there for free.

If you want a hard copy let me know I will send it to you.

(((HUGS)))

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