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Triple Negative Breast cancer

Nettie1964
Posts: 1
Joined: Mar 2013

As I was reading through posts, it seems that I find that most, if not all, triple negative breast cancer patients have had a masectomy.  I was wondering why as this is what I have and so far, none of my doctors have suggested this!

ladyg's picture
ladyg
Posts: 1577
Joined: Apr 2010

First I would like to welcome you to the club no one wants to join. I was not triple negative but I know there are a lot here who will be able to give you helpful info. I can tell you that everyone is different and goes through this journey in different ways. I will keep you in my thoughts and please remember we are here for you.

Hugs,

Georgia

Pink Rose
Posts: 495
Joined: Nov 2012

Hey to you Nettie.  This site is awesome and you will find so much support as I did.  I am not triple neg. either, but, wanted to say hey to you and to wish you good luck.

Hugs, Rose

aligrace726
Posts: 5
Joined: Mar 2013

Nettie,

 I had the mastectomy, but a lot of women I've talked to on here, go through treatment first and then have the mastectomy.

I had a stereotactic and then a lumpectomy with clear margins, but when my doctor told me it was aggressive I asked that the whole

breast be removed. After going back for my followup with him after surgery and all my results came in, it was only then I found out that

I was triple negative. So If my diagnosis was found before the mastectomy they may have chose to do treatment for the mastectomy. I'm not sure

Have you seen a Oncologist yet? My first Oncologist appt. is today.

 

joannstar
Posts: 351
Joined: Nov 2010

a lumpectomy--said the chances of survival are the same for lumpectomy & radiation vs mastectomy. I ended up having to have a second procedure to get clean margins. That was 8/2010 and so far so good. I was stage 1--no cancer in the lymph nodes. I had 6 rounds of chemo and 33 radiation treatment. No fun, but doable and I worked a full time job throught out the 7 months of treatment. A lot of folks seem to prefer mastectomy so that they don't have the worry as much about recurrances, however, there is some breast tissue left even after a mastectomy according to my oncologist.

A lot depends on the stage of your cancer.

Hard decision--good luck making it.

Hugs,

JoAnn

 

JoAnn4818's picture
JoAnn4818
Posts: 82
Joined: Jan 2011

I'm sorry about about your cancer diagnosis. I have TNBC and I did have a mastectomy. They tried to do a lumpectomy twice but they couldn't get "clear margins" meaning they thought some cancer was still present in the breast. My doctors didn't suggest the mastectomy until it seemed I really needed it. The mastectomy did have clear margins and I'm doing well. I'm now a 2 year survivor.

I wish you all the best!

JoAnn

survivorbc09
Posts: 4378
Joined: Jun 2009

Welcoming you to the site too Nettie, though sorry for the reason.

Hugs, Jan

treecy1106's picture
treecy1106
Posts: 145
Joined: Apr 2011

Hi Nettie,

I am TN as well and was diagnosed in March of 2011. I had 2 tumors in 2 different quadrants. They were small I was a Stage 2A no lymph node involvement. I opted for a mastectomy. I had dense breasts and my cancer did not show on any mammo or ultrasound. I found my cancer. SO I decided I wanted both breasts done and implants put in. My Doctor tried to talk me out of it but after I had my surgery and they removed all my breast tissue the pathology report came back that I had TNBC in both breasts!

This is a personal decision. I miss not having the sensation in my breasts but I could not live with the fear of reccurence. I do not think about it much at all.

A girl I met at the Cancer Support Community was diagnosed after me with Stage 1 TNBC. She opted for a lumpectomy. SHe also had dense breasts. SHe called me after her treatments were done and told me she felt another lump. SHe went back to the surgeon and was confirmed more TNBC. The surgeon said reccurence ...she said he probably missed it coz her breasts are so dense. So she opted for a mastectomy and I sent her to my oncologist. She called me and told me she loved him and he was going to cure her!!!

I found out later she decided she didnt want to lost her hair again and went somewhere else for a lesser treatment I found out when

I went back to my Doctor on the 18th last week and asked him ...how is Mary doing??? He told me she died. I almost fell off my chair I was so upset!!!! We all have decisions to make and these are really horrible tough decisions but.... 

I am not sorry for my decision especially dealing with TNBC. Dose dense treatment, remove the cancer and keep your body alkaline. Thats what I did to kick BC in the butt!!!

Good luck with your decision I hope this helped!!!!

Patrice

Uk lady
Posts: 1
Joined: Feb 2013

Hi Nettie

I am in the same position, I was diagnosed TNBC stage one 1 grade 2 Lymph node negative last summer and had a lumpectomy in September 2012, I was told as it was early  stages there was no need for a mastectomy or chemo, I had 21 sessions of radio therapy and then told I would be called back in 12 months for a check up. I too have read lots of cases which all seem to have had mastectomy and chemo, I live in the Uk and numbers of those diagnosed with TNBC are low so I am worried sick that the specialists here just dont have the knowledge of this type of cancer. The internet is a mine field of information about TNBC and most of it very scary but from what I have read most woman  have mastectomies and chemo. Getting information from my oncologist was like getting blood out of a stone so have had to resort to the net.

I hope you are coping I know it's really tough so my heart goes out to you.

Uk Lady

 

 

Jessies miracle
Posts: 7
Joined: Apr 2013

From the information that I have read and asked from oncologists, breast surgeons, mayo clinic and research the reason for the mastectomy is that it reduces your risk of breast cancer reoccurance by 95%.  I was diagnosed with TNBC grade 3, stage 1-3, and I was 30 when diagnosed and I have the BRCA 1 gene mutation.  I just finished 4 rounds of adramyacin/cytoxin chemotheraphy and 12 rounds of taxol.  I am going to have a double mastectomy with no reconstruction next tuesday and I am doing it because I want my risks reduced as much as possible! This has been suggeted by all the doctors I have seen, 2 actually I went to have second opinions on everything, one of which was from IU in Indianapolis which is considered top of the nation in cancer and the other from Mayo clinic which is also very advanced and they all agreed that my risks would be significantly decreased with a double mastectomy, even though I only had cancer in one breast, because there is such a high risk of it coming back in the other breast.

It is definitely a personal choice, I think the best way to go about it though is to get as much info as you can so you can make that choice with full knowledge.  Knowledge is power! If you've been through treatment you know that it's not fun and you don't ever want to go through it again, so that's what made my mind up.  I have a 5 year old that I want to see grow up, and I lost my mom to ovarian cancer just 4 years ago, I don't want to go through life worrying about it so I'm having them off! I've found that taking everything one step at a time helps to not get overwhelmed, and I pray a lot!

I hope this helps you!!

Jessie

Brooklynchele
Posts: 123
Joined: Sep 2010

Hi Nettie,

I was Stage IIB TNBC.  I did not have a mastectomy.  I had lumpectomy and a 2nd to get clear margins.  I can't speak for anyone else but I know my breast surgeon and my onc both said mastectomy was a choice and not a necessity.  I made the decision to keep my breasts.  I'm 3 years from diagnosis and still NED.

Hugs,

Michele

midnight10
Posts: 74
Joined: Sep 2010

I'm nearly 3 yrs out from dx and still dancing with NED.  At the time of dx TN Stage 3 with lymph node involvement, it was recommended by my oncologist and surgeon that I have a bilateral done after chemo, before radiation.  I firmly believe that was the right recommendation.

terrilynn2013's picture
terrilynn2013
Posts: 7
Joined: Apr 2013

Hi everyone, I was diagnosed with TNBC on April 10th, my first meeting with my Dr. he suggested a lumpectomy opposed to a mastectomy. I will go with his suggestion for now, I  have been tested for the BRCA gene, and if that shows I am a carrier I will consider other choices.

 

After my CT and bone scan I got the results that the cancer has not spread to other parts of my body, I am scheduled for surgery on the 30th for the lumpectomy, sentinel node biopsy and port for chemo. Ladies, its hard to believe I am sitting here even writhing about all this. This was such a shock and its been such a whirlwind, but thank goodness for sites like this and other brave women facing the same thing!!

 

Bless you all

JoAnn4818's picture
JoAnn4818
Posts: 82
Joined: Jan 2011

Oh Terrilynn, 

Your post really hit me. I remember so clearly the first time I posted. I feel so much for you. Cancer is so unreal. The nurse made me nervous when she said she didn't want me to worry too much about being triple negative. I didn't even know what that was! I remember my knees buckling at one point.

I'm so glad the scans show no other cancer and the sentinel node biopsy will really tell what's going on. You didn't say what stage you were but it's likely you'll have chemo after the surgery. It's really hard but you can do it. I continued working through the whole thing. My doctor wanted me "on my feet and fighting". The hardest thing for me was learning to accept help and having to deal with the appearance issues - but they were very temporary. I'm a two year survivor and am going strong. I was a TNBC stage 2, grade 3. 

So many people on this board gave me encouragement and post surgery and chemo tips. We're with you every step of the way!!

Sending prayers and positive thoughts your way,

JoAnn

 

terrilynn2013's picture
terrilynn2013
Posts: 7
Joined: Apr 2013

i am so happy to hear your a two year surviver, that is great! i appreciats your support. i am stage 2 , 

not sure what grade. i am guessing i will know more after the surgery.  

kdawg
Posts: 7
Joined: Apr 2013

Hi Terrilynn,

I am a triple negative survivor. Diagnosed April 26, 2012. For some reason I always knew if I was ever faced with breast cancer that there would be no question in my mind about getting a double mastectomy. On May 25, 2012 I had surgery with expanders put in. I was stage 2, no lymph node involvement.  On June 23 I started chemo A/C, Cytoxin' 4 rounds every other week. I received my expander fills the morning of chemo. Then Taxol, 12 rounds every week. I healed and expanded very well. Chemo is difficult and everyone is different when it comes to side effects. I was not able to work during this time. I worked full time for 23 years and actually was greatful to have the time I needed to focus on me. When dealing with cancer it is so important you focus on yourself. I know there are responsibilities in everyone's life that still must be met, but women are so good about putting others before themselves. Put yourself first please, rest, drink some hot tea, take a little walk, write in a journal, then everyone else in your life will benefit from the new you. Good luck to you, know that the people on these discussions are with you 100%, we know and understand.

Thinking about you

Kathy

terrilynn2013's picture
terrilynn2013
Posts: 7
Joined: Apr 2013

Thanks for reminding me to put myself first right now, I feel so bad for everyone around me and want to take care of them! I did start a journal the day I was diagnosed I felt it was important to document this journey from the very start. I am nervous about chemo and your right, everyone is different but I do believe I will get through it. I have tons of family and friends supporting me and my husband has been amazing, hes my rock!

 

I am fortunate enough to be a housewife so when chemo starts I will have time to just focus on getting through the treatment, such a crazy roller coaster ride of emotions, decisions and stress. But writing helps along with meditation and I plan on sticking with Yoga if I can.

 

Thank you so much

 

Terri

treecy1106's picture
treecy1106
Posts: 145
Joined: Apr 2011

God Bless You with strength and courage during your trip. I called it a trip cause journey seemed a bit too long for me. :) You too will be another inspiration to someone else who will be diagnosed with this terrible disease.

I am a 2 year survivor as well and never in my life did I ever see myself coming out on the other side of this but here I am!!!!

Sometimes Cancer happens to give us a reason to focus completely on ourselves.

It makes us realize what is truly important in life and what is not.

It also teaches us faith, hope and love.

Faith to push forward, hope that we will definitely be ok and love of life with all the goodness it offers.

This has been an eyed opener for me. I have changed dramatically in ways I never thought I could.

"Patience" ....something I never had,  I learned during BC. That is one endearing quality!!!!

I wish you nothing but the best....we are all here for you!! The "PINK" Bus is one tough machine!

xoxoxox

Patrice

 

 

 

terrilynn2013's picture
terrilynn2013
Posts: 7
Joined: Apr 2013

Thank you for your post, when you mentioned having to be patient hit home with me. If one thing I have already learned is having to be patient! This is a waiting game for sure, I also like your view on the differece between a journey and trip :) As Tuesday fast approaches I am on edge and just want this surgery over with. Then I start chemo, everyone of you are an inspiration and making this "trip" bearable so far!!

 

Take care,

Terri

treecy1106's picture
treecy1106
Posts: 145
Joined: Apr 2011

Praying for the strength and courage to get you through everything. Someone told me when I was going through with it, "You have to LOVE your cancer!". I thought she was crazy...but guess what....after everything is overwith you will see all the positives Breast cancer will bring you.

God knows no one will live forever we just never thought we would have to face it like this but unfortunately we did.

Look around and see all the people in the world that go about their daily activites without thinking of their own mortality...thats what you need to get back to.

Take care of yourself inside and out. This will all be behind you I promise!

(((HUGS)))

Patrice

terrilynn2013's picture
terrilynn2013
Posts: 7
Joined: Apr 2013

I am trying to keep a positive attitude, and when I lose it I come back here and get your message of hope once again! I have compassion for my cancer (sounds strange) but I do believe everything happens for a reason and when its all said and done I will hopefully see why. For now its one day at a time and moment by moment.

 

I will be sure to check back in and let you all know how surgery went, I wont get the biopsy results right away I will be anxious for that. Waiting for results of the BRCA test to!

 

Take care,

Terri

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

How did your surgery go Terrilynn?  Sending hugs and lots of positive thoughts and prayers!

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Checking back on you too Terri.  Praying you are doing well after your surgery.

Hugs, Diane

jazzygirl56
Posts: 1
Joined: Apr 2013

I am a 9 Year TNBC survivor I was 46 years old and was diagnosed with invasive ductal carcinoma.  I opted for a mastectomy on my right breast and though chemo was set up for me I didn't go through with it as I felt it wasn't right for me - it was my personal choice.  I am very blessed to be able to share my story.  Sparkles of hope from a 9 year survivor.

LittleBee
Posts: 18
Joined: Jan 2013

Nettie:  I noticed the same thing and was curious also!  I was diagnosed November, 2012 with TNBC Stage 1 Grade 3, my doctor suggested Lumpectomy and said statistics show same survival rates as mastectomy.  As I am beginning to see everyone is different and it is a personal decision.  It is a very difficult decision, you just hope and pray that you make the right one, and the cancer doesn't come back.  

Wishing you the Best!

LittleBee 

cwshelton
Posts: 1
Joined: May 2013

Hello,

I have been recently diagnosed with TNBC, just had lumpectomy and 5 lymph nodes removed.  Am await pathology reports, but am not sure what is supposed to happen, have appointment with oncology at the end of May 2013.  Should I be worried because I didn't have a mastectomy?  Can anyone give me some more information?

treecy1106's picture
treecy1106
Posts: 145
Joined: Apr 2011

Please don't worry about anything until you know for sure what is going on. 

Did your Doctor tell you what stage and grade your TNBC is?

Do you have dense breasts?

You will find out what type of treatment after the pathology report comes back.

Not all women have mastectomy's.....

I opted for it because my BC never showed on any mammo or untrasound. So I really didn't have a choice.

Keep me updated on what it happening with you.

Ask me any questions....

I am here to help!

((HUGS))

Patrice

 

babs3035
Posts: 1
Joined: Jun 2012

 

Be confident in the decision you make - ultimately it is your body, your choice.

Best of Luck!!

Barbara - coming up on my 3 years in October.

Keep me posted on your progress!

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