Triple Negative- anything positive?

Hi, I have a friend who had TNBC in 2001 and she ws 29 at the time. Her's was stage 2b and she's doing well. She's gotten married and has had two children since then. I also work with a woman who was diagnosed 11 years ago with hormone negative BC (with either Her2+ or Her2-...she doesn't know). Anyway, she's also doing very well. They were both such an inspiration to me. Hang in there and congratulations on being done with chemo.  I finished two years ago on Feb. 8th!!!

Kelley..oh yeah TN is scary..but so is any kind of BC...it is easy to feel hopeless sometimes..very easy..I dunno...the best thing to do is go out and live as much as you can while you can...if you are feeling good now..chances are you will still continue to be that way.

I'm almost 3 years out and feeling fine..my co-worker is 8 years out and is great...you just don't know...I have also had a young girl in my community die of TN 1 year ago and know of another who isn't doing very well...plus we have people on this thread doing well and some that are not...

I think that we have to have our fears...to be realistic.....and we can never say..everything is going to be fine and we will live forever...but there's got to be a middle ground somewhere...we still have to function, work, laugh, and just live....I guess we have to be prepared..but not let us stop us from what we want to do with our lives...

Sorry to be so...weird maybe..but it needs to be said

Positive: saw my onc on Monday and I am ned for 4 years. It is possible. And after five years, our chance of recurrence drops way down!

Kelley,

I will be 4 years out in April.  When I was diagnosed, I spoke with a woman who was 10 years out (would be 14 years out by now) and found out that I work with a woman who is 24 years out.  I think that you will find that there are a lot of long term survivors out there.  Remember, TN was not terminology used until recently.  The women I had spoken to never thought of their cancers that way. There are lots of charts floating around out there.  I have read that the highest risk of recurrence in in the first 2 - 3 years and then it drops dramatically until after 5 years when recurrence is less that 1%.  

You'll be ok.  I went through the same thing.  It's so stressful.  

Take care,

Lorrie 

You should check out the blog "Positives about Negative."  I found it comforting...

http://hormonenegative.blogspot.com/

Kelley:  Please keep in mind that the majority of TNS out there don't frequent this board because, well, they are living their life fully.  The vast majority of us are fine.  However, the scary part is when we hear someone recuring on one of these threads, and that makes it pretty darn scary.  My half sister told me to get rid of the negativity in my life when I was dx.  I, like her, am a firm believer that severe stress definitely aides in the creation of cancer.  Strangly, her name is Kelly too, but her cancer was not triple neg.  I am brca2+ as well, which is a whole other story in terms of likelihood for cancer.  Do what the doctors are suggesting, but make sure to read up on things.  You are your best advocate.  If ever in doubt, get another opinion.  And, oh, btw..... LIVE.

You have been encouraging!  I started treatment in 3/11 and now it has already returned.  Not sure about what treatment to do.  Physician has recommended a trial study.  The side effects sound really scary.  Am looking into a second opinion.  Any advice?

Thank you all for these encouraging words. I'm half way through my chemo and am already thinking/worrying about recurrance. I'm a natural worrier!

What kinds of tests do you have done to know that you're NED?

CharB22:  In terms of tests, each oncologist is different.  Many of us have cancer marker tests done via bloodwork.  My onc does this test every so often, but she is quick to tell me that the marker test alone does not necessarily mean cancer has returned if the markers are higher.  They like the number to be below 40, or at least that is what my onc told me.  I finished chemo the end of January, for instance, and my first marker test was in July.  My number was something like 32.  In September she ran the test again and it had actually dropped to like 24.  I just had another marker test but don't know the result.  Again, she stated to me that even if the number goes up, it doesn't mean cancer has returned.  She likes to have two things happen before hitting a "concerned" button.  If there is anything different - pain, headache, anything out of the ordinary PLUS higher marker numbers - then she would look further into it.  With this type of cancer, we tend to be hyper sensitive to anything out of the ordinary.  Honestly, most of us get concerned when we get a fever or have a backache.  It's normal after dx.  But the majority of the time, it's not related to cancer.  It's just hard for us to remember that normal aches and pains (prior to cancer dx) just simply meant we had over exerted ourselves or whatever.  I personally go on faith that my cancer is gone.  The mind is a powerful thing.  You can make yourself sick, and I firmly believe you can also prevent illness by positive thinking.

I don't know that we are monitored differently or more frequently than other types of cancer.  Most guidelines are set already, so onc's just follow those sets of criteria.  I started off seeing my onc every 2 months.  She said I would then go to every 3 months, and then 4, and so on.  If something strange happens, then I'm sure the onc determines if you need to be seen more often to watch things.

Exercising, eating low fat diets, eating whole foods/organic, staying away from sugar/milk chocolate - these are just a few things that aide in keeping TN away.  However, you must also use common sense and realize that there have been people who do everything right who have still been dx TN.  There honestly doesn't seem to be any rhyme or reason to most of it. 

Thank you ccnpg. I've never heard of cancer markers. After all of my treatment is done, I'm joining Weight Watchers (there are meetings at my work) and hitting the gym a lot more. I've already been gradually switching to organic and I know I need to stay away from sugar. I read that Stevia is ok... is it?

Hi All, what great inspiration! I am TN and am getting close to end of treatment. I have surgery and chemo complete and am in the middle of radiation. I cried when my ONC told me he didn't need to see me for 6 weeks... crazy I was taking comfort in regular appointments and have to cut the cord slowly...