Is our prognosis really poor?

cheryl you go girl and you are right to demand anything you feel that will help your treatment/prognosis.

too many patients  sit there because they are so traumatised and go along with whatever the onc says because when we are just diagnosed we are so vulnerable and its like landing on another planet, shock and horror despair.

when i was first diagnosed i was one of those and went along with what i was told until i started learning about my cancer  and realised i was pushing shite up hill and in a bit of srife so then i started questioning and didnt get the answers i wanted nor the treatment that i deserved so i sacked that onc and spoke to 2 other oncs and got a referral to my current one and since then i have had so much more confidence in myself and him. he basically listens to me when i talk about trip neg ibc and is always open to any new treatments or trials that ive heard about. 

yep you have to be aggressive because cancer the mother is no princess.

you go girl - yell scream until your satisfied with what your hearing and that doesnt include STATS!!!! ms cheryl.

xx

I was on my daughters school fund raising group. There were seven woman including me. I got breast cancer, another got brain tumour and my other friend got colon cancer. We all live within one mile of each other and guess what the rest left and no one wanted to join.

Wanted to weigh in here.  I think the MD Anderson stats tell the story of progress, and the increasing benefit of treatment, decade over decade.

http://www.mdanderson.org/newsroom/news-releases/2010/md-anderson-study-finds-increases-in-five-10-year-survival-at-every-stage-of-breast-cancer-over-six-decades.html

More than one in five women with Stage IV are now living beyond 10 years.  Seattle Cancer Care Alliance statistics now show that 91% Stage III women treated there live 5 years or longer.  This is all great news.  They represent the forefront of treatment (as do a lot of other places).

I also believe we are just on the cusp of breakthrough treatments targeting cancer as specific diseases.  So Her2+ disease of the breast or ovary as opposed to breast cancer or ovarian cancer.  Not unlike the change inwhat was once called "the pox"....now known as syphilis, smallpox, chickenpox, eczema, psoriasis, etc. 

The MD Anderson stats indicate how lucky I was to have "regional disease" now vs 50 years ago.  At that time, I would have had a 1 in 6 chance of living 10 years.  Now, these stats are almost the inverse.  Very, very good news.

Cheryl......give those four-footed exercisers a hug for me.  They will keep you sane and healthy through this.  They don't call it "horse sense" for nothing. - Claire

If anyone is interested in where I am purchasing my metformin, just pm me.  I've been using it for over a year with no major side effects.

I use a company that was recommended by bc.org when this topic came up on another board. 

CherylinOhio, I posted on the thread in the research part, but that thread looks dead.  

When I hear something like that "poor prognosis" bit, I do get a gut reaction that they're cursing me.  But it's just words.  I go back to that - any number I read is not going to change what happens to me.  Amazing how words can make a difference.  My first onc (retired, not fired) said a few things that just gave me sort of a hand over some really hard times in chemo, and he wasn't even a warm/fuzzy guy.  Then reading "locally advanced" on an ultrasound request sent me back the other direction.  But they're all just words.  They can't change what's going to happen to me, and all I can do is do all I can do.

In thinking about the original source of this quote, the major thing they were saying is that PET improves the accuracy of staging.  PET is relatively new.  What this means for us and those damn numbers is that back in the day, when Cancermath et. al were gathering their data, there were some women who had been staged as III who were really IV out of the gate but didn't know it.  Of course their prognoses would not have been as good, and would drag down the numbers for the whole group. What percentage were they?  I don't know.  It might be inferrable from the results of this recent study, but I don't know how much CT and bone scan accuracy may  have changed during that time period.

Sucks to be even thinking about these women as a "percentage" - they were people.  Another reason I hate numbers.

Momine, I think we are about even with the potpourri of pathologies in our breasts.  I had IDC, DCIS, LCIS,  and at least one fibroid.  I can't even read my path report, it's too depressing.  

This has been depressing for me, although it's not the first time that I've read the words "poor prognosis" in material on the Internet.  I can't seem to get my onc (or should I say onc's plural since I had one leave in the middle of chemo) to give me any sort of prognosis.  The first onc led me to believe that I'd be Stage II.  I also was not PET scanned.  I don't know whether I want to ask for that now or not.  I probably can't get it without symptoms.  I'm also depressed about the Zometa studies for use in women before Stage IV because I saw something about that last spring, asked my onc, and he would not pursue it.  Maybe I should have pressed him on it.  I have a feeling that I'll get nothing but standard of care because he's at a major research hospital.  I did get on Metformin through my primary.  I like your posting, Outfield, that they are all just words, and no one knows what's going to happen to us.  I'm glad I logged into the forum this morning.  Have a nice day, everyone.

weesa- thx what an interesting post, 10 years and you dont take any supplements at all.  you have just reinstated my thoughts, we can do this or that and listen to everything like i do and it may not mean jack shite, and for those with recurrences and for those that dont, we wont ever really know why we did or didnt get etc.. congratulations you have done fantastic.

outfield - so true numbers dont make any difference to whats up for us next...a lot of luck,  its a numbers game & so much is not known why or how to the outcome.

momine - i think exactly the same - you have to go on gut. the more i listen to the professionals, with respect for a lot of them, i realise they dont really know whats going on and basically we are all guinea pigs because they havent found a cure for cancer.

i believe i would have mets to many organs by now if i just sat back and went along with what the pros recommended as standard treatment.

mary - if you are depressed and stressing to the max over it i suggest you search until you find a gp or onc that listens to you.  the anxiety of this sounds like it is really doing you harm so you are in your right to seek what you believe you deserve, dont stop keep asking.

cheryl - hope you are doing ok gorgeous.

anyone doing it tough - try and keep strong,

xx

I've only had one bone density scan when I started Femara, which will be a year in March. Everything was hunky-dorey at that point. We'll see in March of this year.

good one diana - ill go with that!

xx

Just want to say I'm finding this thread very inspirational and comforting, too, in that I'm not the only one who feels part victorious and part afraid.

Crazy thought today--not sure I should really share this because it's kind of dark, but what the heck.  I was driving home from appointments this morning past a place on the interstate where an 18 year old was hit and killed a few weeks ago--went past the crime scene investigation on my way to rads that day so it's kind of stuck with me--the poor kid was killed instantly and obviously there was nothing he could do to fight it.  For today I feel fortunate because I am alive and I have a chance to fight this thing with all I've got.  Some jerk in a lab can call my prognosis "poor" as much as he likes, but he can go right to hell because I'm still breathing and I'm still alive.

I know, just call me Mary Sunshine today, but somehow that put it into a perspective that I think I badly needed.

Thank-you. 

I have put in my dx, but it hasn't come up for some reason. I think I must have done something wrong! will try again.

sbelizabeth - The same thing crossed my mind about recon (if they thought things too bad - surely it wouldn't be done?

I have had my 1st NED - but no celebrating    and like you in April will be discussing recon - Diep is what I want too.

I know what you are saying that this surgery will be different. I just want my boob back,