Calling all TNs

Titan

What freaks me out is that the article says that for the 20% of cancers that are tn the outcome is bleak.   That comment scares me.

kelben

ya Titan me too, but it gives me an opportunity to feel guardedly optomistic.

MBJ

Mo0279:  PM me and I will help get you to the picture forum.  I and many other women on these boards have had this with great success!

Babs:  Wow, I immediately forwarded your post to my friend who is Stage 4.  It gives us all so much hope! 

cc4npg

Titan:  I think they are speaking in the same general terms that many of us have heard from oncologists.  TN has a bad name for so-called "worse" outcome.  It takes time for people to start viewing it differently... it's like an old habit.  TN outcome isn't "worse" or "bleak" necessarily.  It is a different type of cancer that begins for very different reasons than hormone positive, and I believe there are a whole host of reasons we get cancer, which is why I don't think there is necessarily one or two things we can change to avoid getting it.  My belief is that, like with some other diseases or illnesses, we need to focus on curing it rather than preventing its occurrence... I think there are too many variables in the prevention and some people just get it irregardless.  I think the writer used the word "bleak" because there is a general lack of understanding of TN.  Since we tend to recur quicker than hormone positives, and since TN is generally grade 3, we've aquired the labels "worse" and "bleak".  But, they often fail to complete the thought behind the above two facts.... that TN actually dips well below the line of hormone positive after a certain number of years, thus making it way less likely to recur and giving TN a better prognosis after that time period.  So... I don't think we are worse or more bleak... just different.

Funny story... when I was guardian over my paternal grandma, she had several health problems.  She had a slow growing tumor on her face (20+ yrs had it), COPD, and an aneurysm behind the tumor on her face. One day, my maternal aunt asked me if she was terminal and I laughed.  We are all terminal but our health problems don't necessarily make us moreso.  My paternal grandma lived 20+ years with that cancer on her face, and she may or may not have been the carrier for BRCA2, but she lived to the ripe old age of 89 in spite of all the problems she had.  Oh,  and the cancer didn't kill her, neither did the aneurysm.  Her lungs just gave out, but she had smoked for YEARS... like since she was probably 16.

Ladies, our outcome is not bleak... our cancer is as individual as we are, and there are thousands of TN survivors out there who are years out that would agree.

MBJ

Angelisa:  Thanks for sharing that, and I agree with you--just because we are TN's doesn't mean our future is bleak.  Too many variables and we are individuals.

Kymn

wow lots to take in this morning. Very interesting posts thank you all for your input and thoughts. i really need to get more educated. I have done a lot of reading but guess i get lazy about it sometimes. Have a good weekend all

gillyone

Could we not think that TN is better than er-/pr-/her2+ ? I mean her2- is preferable to her2+ right? Or is my head in a cloud?

Sugar77

I work with a woman whose aggressive grade 3 tumour was hormone negative...at the time they didn't test it for her2. Anyway, she's just celebrated 10 years a few months ago. It was in her lymph nodes and she had a lumpectemy, chemo and rads.  The other day she pulled out her report and read for the first time and it said "poor prognisis".  She's alive and well and thriving and I would have never known had she not come forward when I was diagnosed.  Keep strong ladies!

Suze35

Titan - Angelisa said it very well, but I understand how you feel. I hate reading those words. But then I ask myself, is it really as bleak as my friend's husband, who was diagnosed with Stage III lung cancer, which has a 5 year survival rate of 15%? I may not like my 65% odds, but I know he would be thrilled with that number. I just remind myself that researchers are saying worse in relation to ER/PR+, and even that is relative as Angelisa pointed out.



It's been a rough week on the boards, and my mood is reflecting this, so my sincere apologies if I come off witchy. Think I need a small break.



Have a great weekend everyone!

MBJ

Suze:  You haven't been witchy at all.  This is a safe place to moan, groan, scream, cry and also share a laugh or two.  Hang in there!  Just know that research shows every age and stage and throws them into one big pile--hoping we are all going to be around a long time--it's just getting past the hard first two years.  Hugs!!

Sugar:  Thank you so much for sharing this--we need to here more from the women who have survived 10+ years out.

kelben

I agreee MBJ , thanks Sugar

Titan

Thanks you guys for your kind words of wisdom...I just get tired of hearing bleak and poor prognosis and deadly and the worse bc you can have.yata, yata, yata..

And I do know the "good" facts about tn...I try to focus on them more than not..but sometimes..it just gets to me... blah..I've been cleaning my house all day and I'm bored..

Teka

Crapshoot!

Lynn18

gillyone:  My onc said Her2+ was the worse type to have, not TN.  Of course I would not want to tell my friends with Her2+ this.  Luckily they have Herceptin, but it does have side effects.

Suze35:  You seem like such a kind soul, apologizing for being witchy.  You haven't been, and even if you had, we would understand.  I hope you have a great weekend also!

Titan:  If I had a nickel or dime for every article I read like that . . . I know now there are lots of positives to TN, but I do hope researchers are focusing in on us, since we have no targeted treatment.  

lrr4993

It seems to be the main downside of TN is its typical aggressiveness and the lack of targeted treatments.  However, the upside I either read or was told (can't remember which) is that there is not something wrong with our bodies that causes it.  In other words, a hormone positive cancer is always at risk for coming back because that person's body is functioning in a way that encourages it.  TN is almost like a fluke cancer - I have also heard it described as environmental - something other than our body chemistry causes it.  As long as you treat it effectively (i.e. get it all with surgery/chemo/rads as proven by getting past 5 years), then it is very unlikely that you will get it again.

Not sure if that is legit, but I like to think it is. 

Lynn18

lrr4993: Interesting post.  TN is so different than the typical ER+  cancer.  I like to think that because TN is so unusual, it may attract more researchers and perhaps we will be the first to receive a real cure?  Maybe I'm being overly optimistic, but that's what I'm hoping for.

lrr4993

Lynn - I think there is great interest in TN.  I think the problem, however, is that it is a random, fluke cancer . . . they have no idea what causes it.  Unlike the others that have certain chemistry based causes.  I hate to say it, but I don't know how anyone prevents the occurrence of something that they don't know what causes it.  I think the angiogenesis area that is so cutting edge right now holds promise.  Maybe they can't stop it from starting, but can stop it from continuing.

Lynn18

lrr4993:  You are right, how can we prevent something if we don't know what causes it. . .I have been posting on another thread "Huffington Post" about a brochure that suggests we can prevent breast cancer.  We just aren't there yet.

I don't know a lot about angiogenesis, but I have heard that term used a lot in relation to TN.  I'll have to read up on that.  

Titan

Ok..I tend to agree with the "fluke" thing...

Maybe we should change the name of this thread to "Calling all Flukes"...   I think I like being called a fluke rather than "Triple Negative."

Suze..you are certainly not witchy but if you want to be that is fine...I think we all need a little attitude to fight this crap...

I do think that tn (fluke) cancer has caused alot of research lately...Dr. Lisa Carey has seemed to take a great interest in us.  When you think of it..why not..they have found out about the positives and the her..now it is our turn.

Anonymous

I've found an easy solution to all the writings about cancer and tnbc. I ignore them. Really. I figure there will *always* be something to read that's new, or different, or scary, or encouraging, etc. so I skim them and then forget them.

I'm tired of filling up my brain with all this ever changing information so I do a daily brain dump. Works for me.

Huskerkkc

Angelisa, very informative. I like your outlook and beliefs. At first I was getting updates on everything and anything TN-related and forwarding to my husband. He is a medical professional and can read that stuff and cull out the important facts where I just glaze over and zoom right in on the bad stuff and ignoring anything remotely positive (not typically my nature but when you first read the TN stuff, bleak is a word that comes to mind!) He would always say "You missed this, that's not the point at all" and tell me all the promising things, including that Her2Nu- is better than + (although of course in my recent chemo fog I can't exactly remember why). And then I unsubcribed to all the studies and reports and articles. I was just getting TMI and it had to stop. It was doing me no good. Once in awhile I will stumble across something interesting and may copy it and think about asking my oncologist, but (surprise) he is way on top of most of the stuff out there. I have yet to show him anything he hasn't already heard/read. So while I want to be an informed patient and I DO ask a lot of questions, I don't need to scare myself silly. I can do that well enough without all the extra gas to fuel the fire!

Titan

Husker and Heidi..agree...I do pay attention to the studies etc, etc...BUT...since I'm not a medical professional..alot of this stuff is totally over my head...Husker..I'm glad that your husband is a medical professional and that he can help you (and us) sort out the information we need.

On another note..I keep telling my onc ''but I'm triple negative"...and he just looks at me like..ok.....he doesn't seem concerned at all...I guess if he isn't..why am I? 

cc4npg

There's a fine line between being very well informed/educated and having too much information.  On the one end of the spectrum, a person won't know enough to ask important questions or know when something more should/could be done.  On the other end of the spectrum is knowing so much that you frantically try to do everything you've read or heard and make yourself as well as probably those around you miserable (if not crazy), and it's constant fear.  I gotta let faith take over when I step over that "do not cross" line, and trust me, I've been there.  I think we've all been there.  And I'm sure I'll be there again someday whether it's cancer related or something completely different. 

dawn31337

Right on Heidi!  I can scare the $h!t out of myself by reading all the downer stuff.  Suggesting is a very powerful thing.  Fat, dumb, and drunk ain't all that bad....although I'm none of those things. 

PS have a wonderful time on your upcoming DC trip!  The timing didn't work out for me. 

Husker, I think you have the right attitude.  We as laymen can read all this stuff and scare the bejesus out of ourselves, but without the right education or background, it is quite likely taken out of context.  These studies are great for starting points for conversations with our medical providers, but I just don't need to fall into the self diagnosis/hypochondriac trap.  I try to ignore the posts of those who do.

Suze35

Thank you guys, I guess I've been feeling so up and down lately, that I can't even tell which side is up. I hate the craziness - I'm just getting over a 5 day bout of vertigo, something I've dealt with for 13 years, and yet, all I can do is worry. I've had what appears to be bug bites or a rash that keep popping up all over my thighs for 3 weeks, so I'm going to the dermatologist next week, and of course, worried. My leg aches, and I worry, even though I've been more active lately. My hand hurts, and yep, I worry. I know it is the new normal, I just have to wrap my brain around it a bit more. Okay, that is my rant and rave. Time to get those gloves back on...



Titan - I agree, this is such a fluke cancer. No rhyme or reason.



Heidi and Husker - I think I need to do a better job of adopting the information dump procedure, lol.



My insurance company wouldn't approve a PET, so it looks like I'm going into my next round of chemo blind, so to speak. I'm not all that upset, as it wouldn't change things much. I'm going to try and enjoy next week as much as possible, as I know I'll be feeling the chemo soon enough.

Anonymous

Here is a link to a Downloadable Cherry Blossom Brochure of Events:

http://www.nationalcherryblossomfestival.org/2011/03/23/download-now-official-guide-in-the-washington-examiner/

I got it off the official site. Looks like Sat & Sun is the Parade and Street Festival.

Sugar77

Heidi, thanks for the link.  A few weeks ago I "liked" the official Cherry Blossom Festival page on Facebook and have been receiving updates almost daily. Looking forward to the weekend away! 

Kymn

Good Morning all you lovely ladies, Its snowing here in beautiful alberta lol what else is new one morning i will wake up to the sunshining in my window and birds chirping out my door, maybe June lol.

I dont really know what to say on the TN thoughts.Yeah it scared me at first but hey just the fact that i had breast cancer scared me and I dont think I would be any less scared if i was positive than I am now. I dont really have a whole lot of control. going to follow my Onc advice. doing what I can, adjusting as much as i can and then i am going to move on . thats it, thats my big plan lol.

Oh and fully enjoy life

Hope you are all having a wonderful sunday full of cancer free thoughts

hugs to you all

moe0279

Got another question...just felt a nasal perforation in my nose...from the research I've done, I know that it is the clinical trial drug avastin... I will no longer be receiving it..I'm opting out....has anyone experienced this and any suggestions..i believe it just happened this week, but I'm not sure...I'm so freaked out by this. Melissa

Teka

moe0279,

 March 17th, I took my last dose of Avastin, and still have high blood pressure.   Wicked side effects.   Definitely your medical oncologist will have you seen by a specialist, and all information reported to Clinical Trial, and if you choose also the FDA.