Triple Negative Breast Cancer

Tough decisions to be made.
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

Triple negative also
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

Another one...
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

me too TNBC ... my story
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

yuppers
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.

I have metaplastic (which is
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

Yes...Just recently diagnosed with TNBC

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.

YDESHAZO said:

Yes...Just recently diagnosed with TNBC

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.

Chemo..

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  

TNBC

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. 

I am 17 yr survivor

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