new triple neg... worried

Hey calling all node positive survivors.......thats what its called....lol

Try this one too.

http://community.breastcancer.org/forum/72/topic/723716?page=1#post_1107918

Well when I was diagnosed with TriNeg 10 years ago, no one knew much about it and nothing was done one way or the other.  But the good news is after 2 to 3 years TriNegs almost NEVER recur or metastasize while the other types just gradually decrease, our chart just drops.  GOOD NEWS!

So here is one old TriNeg who is fine, and I am not alone.

Gentle hugs, Shirlann

Michele,

I have to agree with guitarGrl--I'm big on reading and researching too, which is a good thing, as long as you don't focus on the percentages.  I know when I do, it becomes way too easy to lose focus and start my mind spinning.  (I've also learned that some of the stuff I read about I'm better off not sharing with my husband, as then HE starts spinning and worrying more).  By all means, keep as informed as possible, but try not to dwell on the down side of this (I know, I know---what's the good side?, but you know what I mean).

This is not good for any of us, but try to find those threads here, or information in general that can make you feel more positive, more in control, more informed, and continue to live YOUR life.  

I know it's easier said than done, but I for one am refusing to think this is the end of MY world.

Take care 

Amy 

Hi Michelle. I just posted this in another thread, so I am copying it and pasting it here, so I don't have to write it again.

One thing about triple negative is the tumor does tend to grow fast. It is an aggressive cancer. That being said, that is why the chemo generally works so well. The chemo is designed to kill fast growing cells. That is also why your hair comes out. They are fast growing cells. I would rather have TN than have positive receptors any day. Once we make it to the 2 year mark, chance for recurrence drops dramatically. Once we make it to the 5 year mark, we are at the same level with the positives who have taken tamoxifen for five years. After the 5 year mark, we are back in the normal population of women who have the 1in 8 chance of having breast cancer. According to the researchers, not one has seen a recurrence in TN women who have made it to the 8 year mark. So, yes, I would rather have TN over positive receptors any day. Women with positive receptors have to worry about recurrence for the rest of their lives, or until the cure finally comes. Some have been cancer free for 20 years and then have a recurrence. Don't be afraid that you got negative receptors instead of positive receptors. If we just HAD to have bc...I truly think WE got the better deal.

-----------------------------------------------------------------------------------

Where is the cure???

www.truefacesofbreastcancer.org

Elaine

Your sucess story gives me encouragment. One question, back then they did not test HER 2 yet, so how did you find out yours were TN? Did you have any family history of BC ? I am the same age as when you were dx. I have a daughter, so still wondering if I need to do gene test.

Thanks and love

Alex

Elaine,

My name is Nancy and I post on the TNBC foundation site. My daughter Lori was dx with TNBC June, 2007. My friend Connie sent me a post that you made on January 28, 2009, explaining the chemo regimen that you had 19 years ago. We are seeing so many of the women have either a recurrence, new primary in the remaining breast, or mets.

We have a member who is 20 years out from dx, and she also had weekly chemo, and I believe the same regimen. There has to be some connection. My grandson was dx at age 3 with leukemia, in 1988, and he is now almost 21. He too had weekly chemo for 3 years. I believe almost the same regimen as you.

We would so appreciate you joining our site also, and perhaps a post stating what chemo you were given, and why,  as you have done here on bc.org. This TN is so aggressive, and recently we have had at times 3 new members a day, just looking for some hope. Is the doctor who treated you still in practice? Are they still treating the TN with the same regimen or are they too now just guessing?

Thank you, Nancy

Alex,

I just got on the site and saw your message. Sorry, I couldn't figure out how to send a pm. Here is the email.

Nancy

 came from breastcancer.org - Jan 27, 2009 02:21 am, edited Jan 28, 2009 01:16 AM by starzhere starzhere wrote:

I have been NED for 19 years.  I was diagnosed at age 38 and had a mastectomy on Halloween.  I was stage I (1 cm IDC).  At the time I was told that I had an 80% chance of making it to the 5 year mark.  At this time standard procedure would have been the mastectomy and nothing else.  However, I was treated at UCLA and they were participating in the landmark study that was in it's 7th year that was showing that early stage ER/PR- cancers benefit from preventative chemo to close the 20% gap. 

I had chemo for 6 months with Cytoxin and two other drugs (CMF).  There was no standard schedule of chemo treatment between doctors, at that time. My particular doctor was the only one I knew that administered the chemo every week for the first month and then every other week for the next five months.  Other women, I knew, got their chemo every three weeks for the whole time, so I actually had more.  I hope that I have been able to help some of you feel more hopeful.

Wishing All of You the Best,

~elaine~

Thanks for the positive remarks as I also have triple negatives!!! My surgery was two weeks ago and still healing from a bilateral mx and recon. I then met with a assigned and well recommended onocologist and almost fainted when she told me I needed chemo and pulled out the stats etc. Thought i did enough with the aggressive surgery!!

BUT, now I understand why i have to do it, and it is a step I need to complete as whatever I can do now is vital for a ten year mark etc.

 I do not know my chemo protocol yet.I will be goin to view a tape at the Medical Center once i am healed. I am very nervous about the chemo process, even though it is different for every one, i have yet seen one that say it was a breeze!!!! will stay with the positive side and all the great ladies here who went before and tell me I can get thru it and I TRUST THAT!!!!

And also.. not having to Tamixifen is ok with me as i am not good with meds long term. Loved what everyone has said here and appreciate your truths and experience and caring!!!!Hope to be there for others when i get thru it all. For now,healing and resting and getting ready for the next part of the journey. Getting items ready for chem too as i learn. Sister in Pink sending hugs.

This is what I found on the internet.  Cytoxin attaches itself to the cancer cell's DNA, which causes it to be unable to replicate itself.  Methotrexate prevents cells from using Folic acid, which is critical to their growth and development.  Without it they die.  I do recall my doctor telling me NOT to take vitamins while I was on chemo.  Flouroruracil is made up of molecules that look like the molecules in normal cells, but they're structured slightly differently.  This small difference keeps the cancer cells from functioning properly and they die.

The article goes on to say that there are various schedules for giving the chemo.  I don't know if this is any help.  I would think there has been a lot of advancement made in chemo, but I do know that CMF is still used for early stage ER/PR positive and negative cancers.

~elaine~

Hi Donna--About the exposure and compromised immune system...check with your oncoligist, but I was told that as long as I took precautions during the first ten days or so after treatment, I could go wherever I liked the rest of the time, I'm a pastor, which involves more touching and hugging than many people realize! But my onc said that those ten days are when my counts are lowest, so during that time i have to be careful. Otherwise, it's life as usual.

Good luck--you make it just fine!

Martha

hi cn56

your post made me feel real good



this is my 2nd time having bc both time i had tripple negative the first one was in 04 stage 2 no nodes involved with a mast 4ac and 4taxotere i was doing very well then in 08 dx with new primary in the other breast still tripple negative but stage 3 with 9nodes involved , your post is what i was feeling cheno love tripple negative knock it right where it belongs ,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,so i do think i have a chance this time around too