need to talk to somebody about tripple negative

Yes, chemo is said to be more effective with triple negative breast cancer. Have you read the info on the Triple Negative Foundation website? www.trbcfoundation.org  If you need someone to talk to, I am always available at deborah.lattimore@gmail.com  I am also triple negative. I was terrified also when I heard that I was triple negative, but really there are pros and cons. You are a good daughter to be doing this research!

Sorry to hear about your mum. I have three kids ages 19, 17 and 11. I was diagnosed in Aug 09 with TNBC.  I had a lumpectomy in Sep 09.  At first I did not understand what triple negative was but I did a lot of research and spoke to quite a few people.  I am with a team at the John Hopkins Breast Cancer Center.  Their recommendation was chemo and radiation.  I had the dr's run stats on survival rates based on treatment.  I was very worried about what would happen to my family after reading information on the web.  I have come to realize that I am not a statistic and the triple negative status is not a death sentence.  I am working on changing my lifestyle particularly eating.  I am trying to move to a low fat diet and I am also more exercise.  I hope that you will have good news soon and your mum will start to feel better.

Jodie, I just noticed that you are from the UK.  I am from Birmingham... or should I say Brum.  My understanding so far is that a low fat diet and exercise helps TNBC patients.  I will send you websites as I find them.  I hope your mum is feeling a bit better now.  Keeping you and your mum in my prayers.

A Birmingham sister with TNBC

Jodie I had my first chemo today and I don't feel bad. I could have drove myself home, no problem. I guess it gets bad usually during the first 3 to 4  days after chemo, but they should give you meds to help cover that time which is usually the worst.

When I had it today... it didn't bother me at all. I felt fine, no vomiting, nausea or heacache.

I realize this may wear off and I'll be feeling sick later but I wanted you to know when I had chemo, it was not as bad as I thought it would be.

Far as triple negative diagnosis, I have that too. It is very disturbing to read the info online, as the rates for reoccurance, even if cured are quite high ( to brain and organs).. and I ahare you fears as it seems quite bad to me too.

People tell me to "think postive" but I find it hard to do with all the info I read online about it. I want to think I can beat this but I can't really control what the cancer will do and it also may turn out the chemo does not shrink the tumor, which will mean even less options, so all I can do is say "I HOPE" the chemo will shrink this tumor and the radiation will further kill any sign of it so I can get well again and regain some sight of my future, one without constant testing, chemo and all this....

I may be mistaken but from what I can tell, not only is this a long process to get "cured" you don't actually get "cured", what you do is learn to manage as life never goes back to how it was because of the high possibility of mets with TNBC.

I would sure like to see the numbers and have been looking online as to what the 10- 15 or 20 year survival rates are for TNBC, but I'm not able to find much, most likely because TNBC diagnosis has only been around since I think 2003 or 2004?

To me, I feel I've been given a death sentence, even worse, a long, slow painful death over many eyars,  got some tough things to overcome and many not even within my control. I have changed my diet DRASTICALLY, going organic, went to all natural products, change deoderant to one of those salt rocks, cut out all fast food/ soda/ anything artifical, diet down to 5-10% fat each day and loading up on rice and more so VEGGIES ! Lots of veggies !!!

I'm going to work on the attitude as extreme hope-fullness doesn't come naturally to me, I'm a realist !!!

so I share you fears... what you can do is the diet changes ( something in your control) and think too about shaving your head before chemo and getting your wig/ hat/ scarf thing going as I did that and it was a good thing ( gives you some sense of control).

I think the fear you have is the same as I have and everyone else who has been diagnosed with breast cancer or any cancer, is that it will come back and make us not be in control of ourselves

brain cancer scares me the most, to lose your cognoitive abilities and become a huge burden on others....

and that is a scary thing, maybe the scariest !

Jodie,

I'm also Triple Negative. You are a good daughter to be researching this for your mom. Some doctors prefer to do chemo first and some do surgery first. Historically, surgery is the first line of attack. Mostly chemo is done first when the tumor is too large and they want to shrink it down before surgery OR they are not sure that the tumor is operable OR the doctor/patient wants to see the effect of chemo on their tumor OR clinical trial OR doctor preference, etc.

FEC-->T chemo is very effective. I believe it is UK's most aggressive chemo regimen. Here in the US they usually give AC-->T. And yea, triple negative tumors are usually grade 3 which respond very well to chemo.

Some web resources to look at:

1. www.tnbcfoundation.org
2. the triple negative forum on www.breastcancer.org

Good luck and keep us posted.

I was diagnosed with TNBC in April 2009, Stage 2, 0/nodes, have 2 more chemo treatments.  This has been the scariest experience of my life, but I try to think positive and keep busy.  Some days are more challenging than others, but I keep telling myself that I will beat this cancer and get my life back.  I think the most difficult challenge is not knowing, not having a road map of what's to come, as BC is a mystery.  My onc tells me that everything is going great, I am cancer free, and trust me, I am grateful and Thank God, but sometimes the mystery takes over, I start to think about what if it comes back.  Fear has it's way!!  But I refuse to let it win. 

Stay positive and do whatever is necessary to live, follow your treatment teams recommendations.  God Bless!!!