Reading about TN online makes me feel hopeless, is this the end?

Titan

I like this thread...good discussions!    I have to admit..there are some women on this thread that I read and do listen..(Luah..you are one of them)..there are some others..well..we won't go there..Am I looking for just good news??  No...do I want to hear just bad news..NO...but seriously, we are NOT doctors here...at the same point..I like this whole board because it is a place to come to hang out with people like ourselves...we just need to learn to take what we read as opinions..with some stats thrown in...I like reading about some alternatives..I liked reading about tips to get through chemo/rads/after cancer...I like talking about basketball, I like looking at the eye candy on the stage 4 thread (Konakats thread)...you just have to pick and choose what you want... I agree with alot of things on here but to tell you the truth sometimes I get annoyed...but..I just stay out of it..it's not worth the fight.

dawn31337

Personally, I won't go NEAR the stage IV threads.  My mother was there, I just don't want to know. I'm here on a need to know basis... I just don't see the point of bumming myself out.    I need to live for tomorrow, and quite honestly, what tomorrow brings for you may not be the same as what tomorrow brings for me.    It's a roll of the dice.  But I win a lot!!!

Luah

Thanks Titan... ditto.

Dawn 31337: no worries, I understand what you're saying. 

yellowdoglady

Luah and all,

Many of us pop in from time to time just to know that we are not alone.  Some make it more of a hobby to stay in touch here, and have made deep and lasting friendships.  Some make it more of a vocation to reach and teach.  All are options, and the spectrum is wide.  Choose what you are comfortable with and you will find acceptance here.

But as many have said, the most important thing is for every woman to get together a medical team she has confidence in.  If you need to know what questions to ask and when and why, this is the place to find out.  If you want to know if your reactions are "normal" in a not so normal time, this is the place to ask.  We've worn those moccasins, and we are still walking.

Walk on, straight and tall, sisters.  

     

tropikube1

The diagnosis makes me feel hopepless..Im on my third round of chemo, tolerating it well. It took me a while to really come to term with my diagnosis still not totally there yet. Found the lump myself and felt it growing very fast. Im to have 12 cycles of chemo then surgery.

Titan

Hi tropikube...yes...to hear that you are tn is scary...at times I freak out..most of the time I'm ok with it.(or accept it)..it is what it is..

I did not have chemo b-4 surgery but I know that there are several women on here that have had surgery before...for the most part the chemo has done a good job...and you are tolerating it well..hang on to that...it is a long period of treatments and surgery and reconstruction (if you so choose).....it is normal to be scared!   The only thing I can say is try to take it day by day and get through it....ok?? And we are here if you need to talk..

josephine_

i suspect that I may not be popular with my comments.  But here goes.  If you are TN and treated, just get on with life and forget internet chat rooms (and horror of horror even decent web sites like this).  But be vigilant.  My TN (suspect ER+ve) was small with no node invovlement but came back........within probably 12 months but took longer to have the thoracic/lung, rib and brain involvement diagonosed,.  Now after 4 x taxol/avastin/zometa/ gamma knofe everything is in regression.  I know it will not be for ever, but at least now I am getting on with it , and not for ever thinking about when it will return.  There is more to life than cancer..............

Titan

Hey Josephine...no problem..you are still popular...you say what you think and sometimes we need to hear it...you are saying two things..(from what I infer)..

1)..TN is a freaking scary cancer and you can never be sure if it will come back or not

2) Try to get on with your life but be vigilant about your health and symptoms

3)  I agree with you on both counts... I think all of us are trying to achieve the living and being vigilant...it does however, take alot of mind control....

 I come on this website to talk with my friends..and yes..they are my friends...about alot of things..not just cancer..plus its great to share the fears and anxiety...and then I sign off and go hang out with my husband/kids/friends/work..etc... 

Am I using this website as a sort of dumping ground..you betcha...do I think of the ladies that I talk to as my friends..you betcha....

poptart

My TN (suspect ER+ve)  What does this mean?

 I think in may ways I was fortunate not to have known the term triple negative when I was first diagnosed.  I knew that I was hormone negative, her2- and that my bc was high grade.  I knew that hormone negative bc had a worse prognosis, but I wasn't as worried or nervous about my diagnosis until I heard the term triple negative and looked it up.  I do think the risks of triple negative are a little overstated on the internet, and that the risks of hormone positive bc are sometimes understated.  Most people with triple negative do not recur.  Some of the things I have read online are just plain wrong, e.g., that 80% of triple negative bc are dead within 2 years.  I don't even know what this statistic was suppose to mean.  There were no qualifications given, just a direct statement: 80% of all diagnoses deceased in 2 years.  This just isn't true, I even know this from personal experience! I also read that only 14% of African American women survive 5 years.  I had actually seen the source for this - it was not at every stage but for stage 3C I believe.  So, this was also inaccurate. 

 Some tnbc has a good short term prognosis (for those who have a complete path. response), and triple negative is typically believed to have a better long term prognosis than hormone positive cancers.  So for those who had a path. complete response, their prognosis must be at least as good as comparable hormone positive cancers, combining the good short term and long term prognosis. 

 I would be very wary of what you read on the internet about triple negative.  Enough is not known about breast cancer to really know how it works out for every individual or what type of bc would be the most favorable for a particular person.  BC of any kind is serious, even the most favorable prognosis can end badly. 

edwards750

loving mother - I think you can make yourself crazy reading some articles on the internet. That is not to say there is a weath of information because there is like this website. I come here to talk over my situation with others with a similar diagnosis. I also think you take what you can from the information and toss the rest. I used to go to webmd.com and end up freaking out about something I thought I had. It is for research purposes only and my dr cautioned me about putting stock in everything I read on that website. What worried me was always if you have one...of the symptoms. Well of course that doesnt mean your medical situation is tailor made for what they are describing so I have backed off. Now with my recent diagnosis this is the go to forum for help. Admittedly, I dont know a lot about TN and in fact one of the nurses at my BS office told you dont want to be TN...I wasnt so I didnt ask. None of this is an exact science but it is a kind of barometer on research from tests and test cases. I had a low oncotype score and was feeling a lot better about my situation until I read a lady who had even a lower score and hers came back. There are so many variables to our individual cancers. We are all doing everything we possibly can to ward off this dreaded disease and at the end of the day thats all we can do and pray. Dont be despondent about something you read because after all they are statistics. If it was a level playing field and one size fits all there would be no point in us having individual doctors. There are heartwarming and gutwrenching stories from women who have advanced cancer. No one has an expiration date stamped on our breasts. They have come a long way since my mom was diagnosed in the late 80s and when she died several years ago it was NOT from breast cancer. So live your life and try not to worry. It is about survival and know our fates are in the hands of the Almighty. Good luck...diane

Beaglesgirl

Wow. I'm glad I stumbled across this thread. My surgery is Tuesday dmx... I too am tn and was just now having a complete come apart.

Titan

Hey Beagle!   Have you been over to the calling all tn's thread yet?  Please go over there and introduce yourself...we will support you!   And if you don't post there until after surgery please let us know how things are going..we really do care.

Nordy

Okay all... I am 6 years out from diagnosis as of tomorrow morning....

Remember that there IS hope...

Angelice

thats such good news  Nordy  congrats on 6 years out , makes me feel bit better im still in radiation  almost done

Luah

Nordy - thanks for posting. I love hearing about such great results!

smerf

Hi,

Just popping in to say I'm 5 years out, but had a 2cm tumor without node involvement. I had a quadrantectomy, 4ac followed by 12 weekly taxols. Seven weeks of rads, and now doing fine. Don't want to barge in on this thread, but thought you might like to hear from someone with a larger tumor who is still doing well. Nordy is so right...there is hope for us. Don't be too discouraged, though at first it is such a shock. Doctors were all surprised because I was 60 years old at dx, and triple neg usually is dx in younger women. Now I will soon be 66, and still going strong!

Hugs to all of you, and hang in there.

mrsnjband

I had IBC & Triple-neg.  I am 3 1/2 years out, so far so good.  Chemo, rads, bi-lateral mastectomy, complete node discetion on the bc side.  Hang in there, it is not a death sentence anymore!!! NJ

Titan

Hey smerf..you can barge into these tn threads any time you like!  Please?

I was diagnosed at age 49..which is still kinda old for tn's..My co-worker was probably about in her late 50's when she was diagnosed with tn..she is doing very well..6-7 years out.

josephine_

Sorry in delay to your query Poptart when you asked what did TN suspect ER+ mean.  My original core biopsy histology in addition to all the grade 3 stuff, was Her negative, PgR - but ER 4/8.  However, the tumour once removed was negative for all three (thrice).  I am a Professor of Science and spent some time looking through papers that indicated reasons for false positive either way, and indeed my collegues have published that ER expression does not equate with function (in otherwords one could still get a response to tamoxifen with putativley less receptor recepor expression by histology, but where the signall8ing proteins are just as efficient within the cell).  So with my results it was a no brainer to take tamoxifen, which I disliked intensely ; horrid night flushes that totally reduced quality of life although acupuncture hepled somewhat.  Howeverm the tamoxifen did nothing to stop the TN BC spreading, and approx 12 months - 14months later had spread to lungs, brain and ribs (and the lung CA was related to the orginal tumour and is tn).  I have been treated by docetaxol, avastin, zometa and gamma knofe, plus EPO and neulasta to keep the red and white blood cells perky.  My disease is not fully in remission, but I have responded for now.  If I had not taken the tamoxifen I may have always regretted it, but the one blessing is that now I have knocked it into touch (a rugby saying) I have better nights sleep

best wishes

Josephine

IDC, 2cm 0/11 nodes, grade III ER +/- PGR- Her2-  June 2009.  Reoccurance September 2010 to thoracic region, ribs and brain.

Jwatrlily

Hi,

I'm new here but Trip Neg also.  Diagnosed June 2010, surgery, partial mast/lumpectomy (I found surgeons termed it both ways) Aug. 9, 2010 and started chemo A-C, 4 txs every 2 weeks and Taxol total of 12, 1 tx weekly.  Then Feb 25 started 33 radiation tx.  Finished April 15th with the last 8 being boosts.  Biggest issue right now is fatigue and it is getting better.

I empathize with loving_mother.  I too read the "chemo effective in only 40% and recurrence is high and if it does, death comes quickly."  I read it on the MD Anderson website.  I've never been back there since.  Nor will I ever access that place again.  I know some of you went there for treatments etc but that is just to scary for me if that is what they are going to publish as the standard for TN BC.

My first appointment with my Oncologist, he told me 80-85% chance survival and recurrence of trip neg is only slightly higher then hormone positive, like 10% higher.  He too said at 5-6 years recurrence free with Trip Neg, you more then likely are "cured." 

I have huge faith for one thing and realize my outcome is not in the statistics I read but in my life book if God so deems it.  Secondly, my Onc told me my last appointment that I have a really good prognosis.  Small tumor (I never did feel it, found on mammo and Surgeon didn't feel it and it had to be wire marked for surgery it was so small), Stage 1, Grade 3 with 0 nodes and even though he says it isn't the "ideal" test, my last CA 27-29 tumor marker test was 19.  He said anything under 35 is normal and NED.

I have book marked this thread and would like to return.  I want to be a part of a TN thread and didn't have such good luck with another one because I professed my faith there and that didn't seem to go over so well.  If there are those sentiments and restrictions here, please someone tell me and I won't return.  I like to sometimes tell one of you ladies that I am praying for you and if that is going to be a problem, I'll move on.

Hugs ladies,

Juanita 

GuyGirl

Juanita, 

Glad you are here.  We were diagnosed one day apart.  My doctors have also give me a good prognosis.  I try not to think about the future and live for now.  None of us come with an expiration date and I could have a heart attack or a stroke that would take me away from my family much faster.  I thank God every day for my family and friends and most of all for my fellow sisters in the fight of our lives.  We gladly welcome you to this thread.  I will gladly accept any prayers you send my way.

Love, Ellen

Jwatrlily

Thank you Ellen for your welcome.  I appreciate it even though this thread does not seem to be active.  Had my first follow up yesterday with my RO since rads ended.  He said I was doing good.  Don't know how much some of you have moved around on the threads at BCO but Lisa (Paulding Mom) from here on BCO passed away on Mother's Day.  So sad.  She too was Triple Negative.  It is so scary having this sub type of this disease.  Have a great day ladies and thanks again Ellen.

Hugs,

Juanita