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Triple Negative Breast Cancer

beachlovernh
Posts: 1
Joined: Jun 2011

I was diagnosed with a more rare form of breast cancer called "triple negative" which means my cancer is not fed by hormones therefore the only treatment recommended is chemo. I have already had a bilateral mastectomy and all my scans came back clear and my genetic test was negative. I thought with surgery and scans clear I was good to go but the docs are saying that "triple negative" is more aggressive and I was Grade 3 mean that it is fast growing. The stage was 1.
The docs are wanting chemo as a precaution in case there are some cells floating around in my body that are undetected.
I am wanting to find any women who have this type as well and see what treatment method they used and how they are doing. I was considering doing alternative treatment rather than chemo.
Please let me hear from anyone with this "triple negative" breast cancer ( only 15% have this type) as I am going to my 3rd opinion at MD Anderson next week.
Thanks so much!

emamei's picture
emamei
Posts: 144
Joined: Feb 2011

I was diagnosed last September with Triple Negative, Invasive Ductal Carcinoma, Stage 2, Grade 3, with two out of eighteen nodes positive.

I had a lumpectomy in October last year. Then 8 rounds of chemo, 4 AC and 4 TAXOL. I had re-excision surgery to further clear the margins in April this year but the pathology came back positive for residual cancer that survived the chemo. I had a mastectomy to remove the breast on June 1st. The pathology came back to show that there was some additional residual cancer cells in the breast 3mm worth, but all my margins are now clear. I will be beginning radiation therapy in a few weeks.

With Triple Negative breast cancer the chances of recurrence is greater in other parts of our body than it is in the breast area where it originated, thus the need for aggressive treatment - chemo, surgery, radiation therapy. Where I live, the cancer doctors encourage patients to look into integrative medical services offered that look at treating the whole patient, body, mind and spirit, through supportive treatments, such as nutrition, meditation, acupuncture, exercise, yoga, meditation, etc.

You and I and the other ladies on the forum with the Triple Negative status are a rarer breed for sure.

Keep in mind the chemo your doctors are recommended are in your best interest. The chemo will treat the whole body and will better your chances for survival and lessen the chances of recurrence. I know it sucks, chemo can be hell, but I highly recommend that you do it as it is the best medical intervention that can be offered at this time.

Hope this helps...

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

I'm not sure triple negative is so rare anymore. There are quite a few of us on this board as you will probably discover. I wasn't thrilled about getting chemo either, but it's my understanding that we have no other option for preventing the spread of our cancer. My cancer was Grade 3 Stage 3A triple negative. I had a mastectomy in Dec '09 followed by 8 rounds of chemo (4 AC / 4 Taxol) and 33 radiation treatments. I understand your desire to seek alternative treatments but if you don't do chemo and your cancer returns, can you handle the "what if's"? Only you can decide what is best for you and I'm sure the bilateral mastectomy was a difficult decision to make. Unfortunately no matter what you do, you will probably always worry about recurrence. That is a permanent side effect of cancer. I'm glad you found this site and I'm sure you will hear from other members. I wish you luck sorting through your thoughts to reach whatever decision is best for you. We are here for you, whatever you decide to do.

HUGS!!!
Jamie

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

In Dec. 2009 I was diagnosed with TNBC - Stage IIa, Grade 3. 2 of 22 lymph nodes removed were positive for cancer. I had a right mastectomy followed by 4 rounds of A/C (Adriamycin/Cytoxan) and 12 rounds of Taxotere. My last infusion was in 8/2010. I had my reconstruction surgery done on June 13, 2011.

TNBC responds very well to chemotherapy from everything I have read. I would suggest that you go to the website for the TNBC Foundation for more information. Since chemo is a systemic treatment I was all for it. My theory was that the drugs would seek out and kill off any cancer cells that remained after my surgery. There is no way I would not throw everything in the arsenal at this disease in order to eradicate it. I could not live with the "what ifs" if the cancer recurred and I had not given it my best shot.

Good luck with your decision.

IRENE

midnight10
Posts: 74
Joined: Sep 2010

Diagnosed 7/10 Stage 2b Grade 3. I had 4 A/C and 4 Taxol, bilateral mastectomy with lymph nodes removed on right side--7 of 15 were positive and then radiation. I am cancer free and will finish reconstruction with exchange surgery 9/20/11. LISTEN to what your oncologist tells you! TN does respond well to chemo and killing any stray cells may help prevent recurrance. Listen...listen...listen, but remember you do play an important part in your recovery--yes, treatments seem scary, but really aren't as bad as we (I) imagined. I believe a "I can beat this" attitude helps! I missed 2 days of work during chemo other than 'chemo days' but that was becaue I picked up a bug.
Good luck, prayers headed your way.
Cindy

Cinkal's picture
Cinkal
Posts: 161
Joined: Jan 2011

I am triple negative as well. Stage 2A no node involvement. I had a lumpectomy in February. My treatment plan is 4 A/C and 4 Taxol every two weeks. I have completed the A/C and have two more Taxol. I will get 6 weeks of radiation after chemo.
I have tolerated the chemo fairly well. The A/C was rougher than the Taxol has been. With A/C I had light nausea but the anti nausea drug took care of it. I never threw up. With the taxol I do not need to take anti nausea meds and I am less tired.
I have been able to continue mostly all of my daily activities. I have two children and have not missed any of their activities. I usually have one "bad" day where I have to rest more.
It has not been as bad as I anticipated. It is not a walk in the park, but it is doable.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I was dx in Aug last year...triple neg inflammatory bc...automatically stage III. This is even more rare and more aggressive so my treatment was chemo first (six rounds TAC all together), bilateral mastectomy with 14 nodes removed (12 positive), and 44 rounds of rads (22 days 2 times per day).

Here was my thinking when I had a choice in treatment options...this cancer is nasty and aggressive. So if I want a chance to beat this thing, I have to be more nasty and more aggressive. In every case, in every choice, I chose the more aggressive route. (I even asked about more chemo post surgery since the pathology report was pretty mixed.) I never want to look back and think to myself 'I should have done more.' I am also changing my diet, exercising more, and using some stress management techniques because I want to use every tool available to live a long life and see my children grow.

Was it hard? Absolutely. But what you should know is that now that you are here, if you choose to do the chemo so you can kill every one of those damned nasty aggressive cancer cells, you automatically have a great support system. We can't be by your side, but we will give you advice, encouragement, emotional support, answer questions, and more. If you choose not to do the chemo, you get the same support.

I hope this helps in making your decision, and I wish you peace with whatever you decide.

Hugs,

Linda

linpsu's picture
linpsu
Posts: 725
Joined: Mar 2010

AS you can see, there are a number of us TNBC sisters on this board. I had it first as DCIS, with a lumpectomy, then mastectomy b/c margins weren't clear, sentinel nodes all clear - followed by reconstruction - no chemo or radiation the first time b/c it was considered Stage 0-1. Then it recurred 2 years later at Stage 3 - first I had 4 A/C, then 4 Taxol, dose-dense (every 2 weeks), tehn had implant removed along with more tissue, 14 lymph nodes (1 was positive), followed by 32 radiation treatments. This seems to be the typical treatment for TNBC as far as I can tell. I think that if I had chemo or radiation the first time, that maybe it wouldn't have recurred. I would do everything the Dr. recommends; you don't want to fool around with TNBC because of its aggressiveness and propensity for recurrence. Just my thoughts. Take care, Linda

angelnicole81
Posts: 4
Joined: Sep 2013

How can DCIS, stage 0 breast cancer turn to stage 3?  I thought stage0 cancer could not spread?

1acme
Posts: 77
Joined: Mar 2011

Hi Beachlovernh

I was diagnosed This January at age 37 with Triple Negative, Invasive Ductal Carcinoma, Grade 3.

I had a Lumpectomy on February with tumour 4.5cm (size of tennis ball), 2cm Centennial Node and 14 Lymph notes removed.

Then scheduled 8 rounds of chemo (16 weeks total) 4 AC and 4 TAXOL. I am in the middle of treatment, today had my first Taxol treatment. With A/C I had mild discomfort , never ill to my tummy. But with today Taxol I ended up with allergic reaction - rash/redness in my face and pain in my arm during infusion. They gave me more Benadryl (antihistamine), so I slept during whole infusion. But I managed.

I am also getting NEUPOGEN injection 7 days/daily after chemo to increase White Blood cells (increase your imunity). Neupogen give me on day 3/4 huge bone/joines pain BUT somebody on this side recomended to take REACTIN (or Clariti) on daily basis and this seems to help.

I have scheduled also a re-excision surgery to further clear the margins in early fall.
After that I am opting for Double mastectomy even my surgent set that it is not necessary, but I desided that I will do anything in my power to lower chances of reoccurence.

Look I did lots of research on Natural Cure, but I have not found anything convincing, so I decided to go medical (Chemo) way. My Onco told me that Triple Negative is very AGRESSIVE fast growing (my tumour was growing 1cm /0.5inch/ per MONTH).

They also told me that if I will leave it as it is chances of reoccurrence are 45% which is a lot (at least to me).

If you want I would be gladly to share pages which I would in regards of Natural cure, interesting Books and special Diets/Protocol, that you can educate your self.

Information is knowledge and you need to find as much info as you can to make educated decision. This is your life and your decision.

Take care & good luck

Helen

kookaa
Posts: 27
Joined: Mar 2011

I too have the dreaded triple neg. I was dx Dec. 28th 2010 and started chemo 3 weeks later. Yes it is a very aggressive cancer. I was very shocked when my Drs said chemo first! I had 4 A/C and 4Taxol dense dose. It was not easy, yes it sucked but...... I also saw the tumor go from 6cm to ( get ready) NOTHING! I just had surgery on june 8th. Instead of a dbl. mas. as originaly planned, I had a section around where the tumor was and 9 lymph nodes removed. The Pathology report reads... no residual carcinoma ----significant chemotherapy effect! Not only did it reduce the size ( to nothing) I feel We can be pretty sure that it is not hiding anywhere else waiting to come back. I guess I was lucky that I got to actually see the chemo working. I am now on a 6 week rest , then on to rads just to be sure I have done everything possible to fight this. I also had the genetic testing and that was neg. It is a long road and I just took it 1 treatment at a time. My prayers are with you. P.S. Remember these ladies are here 24/7, I have found so many answers just by reading. I hope I helped even a little.
Tami

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

Another of the triple negative clan. Chemo is the best chance of beating tripple negative bc. I wouldn't give it a second thought as I know I have a lot more living to do. The nausea from chemo is a lot like morning sickness to me. If I have to have morning sickness as a side effect of chemo but I get to live for years to come I'll do it.

MAJW
Posts: 2515
Joined: May 2009

That's what my oncologist calls triple negative....all I can add is based on my personal experience with TNBC...I would highly suggest you take the chemo and even radiation if that's what your oncologist says you need to try and beat this...I was diagnosed in April,2009....went through chemo which is no day at the beach but doable and then 33 radiation treatments...
Fast forward to the present....was diagnosed with a recurrence 2 weeks ago....now in a clinical trial and started an oral chemo this week...
Please follow your oncologist's advice....after all they,re the ones with MD after their names....

Wishing you the best....

poplolly's picture
poplolly
Posts: 346
Joined: Apr 2011

I have metaplastic (which is rare) and triple-negative cancer. I had a mastectomy and then I had 33 rounds of chemo and 33 rounds of radiation. All in all, none of it was too bad and if it works to keep the cancer at bay, it was well worth it.

Judy

Deezzzbeads
Posts: 1
Joined: May 2013

Hi I was DX two days after Christmas 2012 with this.

Mine is stage 1 grade 2 and they are only doing radiation.

Deezzz

YDESHAZO
Posts: 1
Joined: Sep 2013

On Aug 28, 2013 I was diagnosed with Triple Negative Breast Cancer Stage II.  At that very moment when I heard the word CANCER, I was in shock.  I felt like I couldn't breath.  I had no idea what this thing was that invaded my body.  I was scared and a bit angry.  I decided to do surgery right away and had a lumpectomy.  The surgery was Sept 5th, last week and the results were good.  My mass was 2.15 inches and the surgeon was pretty sure that he got most of the cancer.  However...I'm still not out of the woods...there is a journey ahead of me with radiation and chemo on the horizon.  I'm not sure what to expect with chemo...other than I will probably be sick and lose my hair...which by the way has grown all the way to my hips.  I'm also planning to keep working...not sure how that's going to work out, but I can't imagine sitting at home on the sofa or being 'sick' all the time.  I appreciate this website and any info/support you offer.

ComfortablyNumb
Posts: 39
Joined: May 2013

You will find a lot of advice from people who have taken on and kicked chemo's butt on this site..listen to them, they really do know what they're talking about lol I was so scared of getting chemo when I was first dx, to the point where I genuinely thought of ending my life to avoid it, but being on this board helped me that its not as scary as I was making it out to be in my head. I got through 9 taxol's pretty easily, and even now on FEC when I spend a day throwing up after, my doctors, nurses and the pharmacist at the hospital are working together to find a combination of drugs to keep me from being sick..in the words on my nurse "chemo isn't what it was 20 years ago, there are drugs that should keep you from getting that ill"

The hair is definitely a bummer, but remember that it WILL grow back once you've kicked this cancer monsters tushy.

its not an easy thing to go through, but you are strong and you can do it! Just remember you're not alone, we all understand what you're going through in one way or another :) 

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

ANother TNBC sister here as well. STage 2A diagnosed in March of 2011. DOse dense AC/T 8 treatments total. BMX

You are not alone...we are all here for you!!!!

 ((HUGS))

Patrice

bledford's picture
bledford
Posts: 2
Joined: Sep 2013

I was ex in October 2011. Stage 2A grade 3 highly invasive. I also tested + for BRCA1 mutation.  I had a double mastecomy and 16 rounds of chemo. 4 AC and 12 Taxol. Because of the gene I also had a complete hysterectomy. I did not have radiation because my lymphnodes were negativalley theory is you know what you can handle. I was 32 with two kids and a life so I was willing to do whatever I had to so that I knew I had done everything I could. If its something you are not comfortable with I wouldn'recommend it because I think deep down we know what we are capable of. It seems that younger women are in the TNBC pool vs older patients. It's scary but I thank God for everyday and would do it all over again if I had to. Prayers and hugs to you. 

Morkies's picture
Morkies
Posts: 9
Joined: Sep 2013

In September 1996 at the age of 41, I was diagnosed with triple negative stage 2 invasive 2cm breast cancer, so  I am a 17 year survivor .  I had a lumpectomy and was going to have sentinel node surgery (cutting-edge back then) but didn't because there was miscommunication and I received my first round of chemo so the surgery couldn't happen.  From what I've read on this discussion board, chemo has changed because I had six rounds of CMF and 35 radiation treatments.  I worked through chemo (had chemo on Friday and back to work on Monday) and radiation.  Whether to work or not is a very personal decision but I found it helped me get a different perspective and think of something other than cancer.  I taught high school so there were some holidays sprinkled throughout the treatments.  Also, I had wonderful support from my students and colleagues.  I just wanted to share that this can be beaten and wish all of you the best of luck as you move forward in your treatment.

 

24242
Posts: 1417
Joined: Mar 2001

I am a me too girl, stage 3 with 11 our of 21 positive nodes and I had two lumps before diagnosed.  I was very ill and in allot of pain unlike most.  I didn't find out I was triple negative till years later the test wasn't up here in Canada at that time.  But because I was part of study found out later when part of testing process I guess.

Though a mother of a teenage son my first instinct was not to have any treatments except surgery but that soon changed with the advice of my mother.  The Nurse came out and reality was put in perspective something I needed for my son.  So I decided if I was prepared to have surgery then I must resign myself to anything that might increase my life expectency and that is what I did.  Even thoug radiation didn't add that much on to my survival rate I did it too because I was up for a couple more percentage points even after everything I had been through.

I have always known there are no gaurantees and have found gratitude like it has never been for me.  I too went on to become a professional Drywall Taper and Painter something I never dreamed of.  It hasn't come without a price a few diseases to learn to live with but it is doable and as you see we can survive.  That is why I still come here is so others know what it can take.  I hope that you do what you need to do and can live with because we have to be able to look at ourselves in the mirror at the end of the day and be happy with it all.

Tara

childofthestars's picture
childofthestars
Posts: 246
Joined: Jan 2011

Your story is inspirational.  I am 13 yrs post bc stage 2 grade 3 triple negative treated with lumpectomy chemo & rads.  I only found out around 2 mnths ago that I had triple negative bc - It never occured to me to ask or find out!! anyway 3 weeks ago i was dx with DCIS in same breast following routine yearly MRI so having double mastectomy with DIEP flap recon this coming Sat 12 Oct (i am also BRCA1 - had stage 2 ovca in 2010). 

i do feel so sad and a little bit angry about this - I mean I am just not an ILL person but 3rd time round does somehow take the wind out of your sails!!! but I am STRONG and I will survive (i'm sure those a words from a song lol!)

Hugs to all.

Michelle xxx

FCNYC
Posts: 1
Joined: Nov 2013

Hi - I am writing on behalf ogf my mother who was diagnoed this past may with TNBC Stage III Grade III with several limphnodes affected.

Since then she has gone through several chemotherapy protocols (6 cycles of PEC first, 4 cycles of Cisplating later) and nothing so far as worked (i.e. the tumor has not stopped growing.) We've consultyed several oncologist and she is now following another chemo protocol (eribulin, once per week) and will soon start tomotherapy (in conjunction with Chemo.)

Needless to say that all these drgus have debilitated my mother substantially and, more important, we have very little hope that the current therapy will work. In the past few weeks, we've also been proposed to do a mastectomy. Some doctors have agreed with this therapy, some other do not. We are very confused as we do not have sufficient information to make a educated decision.

I guess that my question is if any of you has had a mastectomy with a tumor in excess of 7cm and spread to the lymphondes. What are the dangers? 

Thanks for your help.

 

 

24242
Posts: 1417
Joined: Mar 2001

I believe I have a question FCNYC or maybe two lol...  How old is your mother and did she have lump ectomy before??

Understandably this is all too confusing and know that things have changed allot in the 17 of my survival but I am also involved right now with an 87 year old woman who is just gone through treatments for her breast cancer and opted not to have mastectomy and when you realize the risks versus the actual percentage of increase in life expectancy then one can make a choice. 

When I had my cancer I already knew what I would do due to a grandmother who had had breast cancer and went through horrid surgery compared to what they do now and cobalt something they don't do.  I did not get what a wanted and that was double mastectomy off the bat.  My mother was a Palliative care Nurse and the Surgeon both talked me into having a single mastectomy with the choice of second one later.  They both agreed that the cancer should be delt with first since stage 3 and many lymphnodes involved and for once I actually listened to my mother and believe one reason still here.

Every cancer is different and everyone is too as it turns out.  At older ages it seems mastectomies do not increase longevity of life so one reason stopped doing them.  At 87 I can see why they don't suggest it for unhealthier people cause it is trauma to the body we can do without or should do without.  Side affects are there every step of the way and they can have the worst affects.

Keep asking the questions until you understand what you need to know before making a decision.  Knowledge is Power and necessary in this fight for LIFE.  You found a great place to be why I still come here and let your mother know I will keep her close at heart.

Sincerely

Tara

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