Is our prognosis really poor?

CherylinOhio

Ok so I was lurking on the trials and news thread and saw a link to an article on CT/PET imaging and while the article was not that interesting one sentence said "Locally advanced bc has poor prognosis".  WTF?!  GRRR.... back to the dark side.  Should I just go back to drinking and smoking and just live the life I have now before it's too late. Quit my job?  What's the point of any of it if we're just going to have a "poor prognosis".

Momine

I could go for some smoking and drinking at this point, lol. I am freakin' sick of being all virtuous, but slowly getting the hang of it

When I put my numbers into cancer math, it tells me that I still have about an 80% chance of being around in 15 years. That seems like a pretty good prognosis to me. So I guess it is back to water and veggies

CherylinOhio

Well that is a good number! My onc said 63% for me when I first met with him.  That sucks!!  I dont want to do that math site, too depressing.  I bet it doesnt take into account the different things we do though. Like ovaries coming out, eating good, exercising....  I dont mind water or veggies but I really like soda and candy. I used to go to bed at night and read and eat hot tamales and bottle caps!! Ha nothing but sugar.  I have developed a taste for carrot juice and eat a lot of kale. Hoping it works!!

Momine

Cherylin, well, I am not sure the number is really that good, but it is over 70, so I choose to remember 80 and call it even

The calculators are all out of date to some extent, as far as I can tell, and there are many things that do not get factored in. In the end, the statistics are pretty useless. Overall, the number may be 20, 50 or 95, but if you happen to be in the wrong part of the statistic it sucks equally regardless.

I hope to hang in there as long as possible. The longer I hang on, the better the chance of some magic bullet or at least some better treatments of some kind. Boring as the virtuous stuff can be, it does help us live better and hopefully also longer. I realize that a major reason I made it through all that nasty treatment in reasonably good shape was that I was in reasonably good shape to begin with. So if I have to do it again one day (GAHHHH!), I will have a far better chance if my overall health is decent. 

My 75yo auntie just knocked back extensive mets in liver and abdominal cavity to NED. She has a good chance of dying of something else and unrelated if she keeps this up. I keep her good example in mind and then I go to the gym.

cheryl1946

I don't look at statistics because the ones I've seen are so outdated. Plus there are new treatments developed all the time.

What "expert" said locally advanced breast cancer has a poor prognosis? WTF is right.

CherylinOhio

That is a great example!! Good for your auntie!!  I see my onc this Friday and will ask him if I have changed my numbers by ovary removal, tami or arimidex, whichever he will put me on, double mx, anything I can do to change my %%. 

CherylinOhio

cheryl1946, I read a link to an article someone posted about CT/PET scanning here on this site. Can't recall which thread it was, will have to look around.

CherylinOhio

It was on the thread "clinical trials, research, news" under CT/PET Scanning....

ali68

Well I was told 63% for next ten years and 90% chance of recurrence. Also I had Lumpectomy so I've no bloody hope. You have to laugh or you'd be a mad woman.

Momine

Yes, auntie cracks me up. Mind you , she would ride her bike to and from chemo. She has balls.

CherylinOhio

Yes I was told 52% chance of RO.  I have to think that removing ovaries and such will bring that number down. WTH?! am trying everything from hemp leaf juice to baking soda and molasses. I have not started teh baking soda, want to ask the onc first.  What I need is to lay my hands on some cannabis oil. 

CherylinOhio

Ha that's awesome!!  Sounds like she's in good shape.  I was too before this crap.  I smoked and drank but was in pretty decent shape.  Gave up my vices and joined a gym.  But then bought 2 horses and no time for gym, get plenty of exercise at the barn.  All we can do is stay positive and strong.  This just sucks, why is there no cure yet!!!???

ali68

I have given up wine but not chocolate, can't live without it. Am 9 & half stone and walk an hour a day. Eat well and never smoked and still got late stage cancer, my SIL is very fat eats, drinks and smokes- its not right.

sbelizabeth

I've done all the calculators...lifemath, MD Anderson, that British one, you name it.  They all come up with different numbers.  I'm just going to make the assumption that everything I'm doing to fight this battle will put me in the percentage that survives, and the percentage that doesn't survive is made up of 95-year-old ladies who smoke, drink, eat nothing but red meat and Twinkies, and think exercise is using the TV clicker.

It's all in God's hands anyway.

CherylinOhio

This disease is a sneaky bastard and I wish it did not exist.  Well I am off to my therapists (who live in a barn and neigh when they see me).  I look around at the women in my office and think why me?  1 our of 8 or 9 women will get bc in their lives.  Why did it pick me??  We all say that don't we?  Stupid bc... I hate you!!!!!!  

Love ya all though!!

Momine

Ali, I refuse to give up wine. I stay with 2 glasses a week usually, but I have to live. Chocolate is a health food lately

Pure

When I first got married my husband was diagnosed at age 32 with stage 3 colon cancer. 13 years later he is cured. His chance of surival was 50/50. Cherly I heard the same 60% number..Cancer Math is higher... I take that 40 percent number and come down another 20 since I work out close to 2 hours  a day... So now I am at 80..Then I cut it another 10 percent since I eat mostly vegetables and alkaline water.... so now I am at 90% chance of being ok...Then put zometa in there and I have only  6% percent chance of it coming back...lol So take that stupid cancer.

MiniMacsMom

So the statistics are hard. My RO at MDA said the ones we are reading now don't apply for a few reasons.  Even though the chemo chemicals are the same, the techniques, dosing and regimes are different.  The most recent one I read was published in 2005.  That means those women were using regimes almost 20 years old if they were following a 10 year survival.  Plus staging has changed since then.  ALSO,   the technology used to locate the extensiveness of our illness.  So its really hard to say but I think overall I try to ignore the statistics.  If I have 2 mo or 20 years I don't want to live them in fear of re-occurance. I have a higher re-occurance statistic being BRCA pos, but oh well, can't do anything about it.   Do I know it exists, YUP, do I spend all my time thinking about it, NOPE.  I am trying to be as pre-cancer normal as possible.   Big hugs ladies.  Try to "blow off" the statistics if you can. 

The one thing I have done is tell several family members that IF this comes back that I want someone to tell me to calm down and make sure I get chemo sensitivity testing this time.  I didn't know about it the first time and I was totally unprepared for the shock of BC at 27.  Did the other best thing you can do and went to MDA. 

luckypenny

As I sit in bed eating potato chips , I am half pissed that any stupid article could suggest that I have a poor prognosis after I was getting closer and closer tto believing that I might make it 10 years. Idiots must have written that.



I use a combo of my oncs recurrence rate - he says 20% chance of recurr in 10 years then I reduce that number because I got full hysterectomy and now take ai. I reduce that by 5% and I take zometa and Metformin so I tell myself I am at about 10%. Makes me feel better



My onc used adjuvent online. I wonder why all of the stae 3a posters rates are so different? I hate living like I am running from something

fredntan

I old MO said I had 30% chance of reaccurance, then when I was done with tx, he changed that number to 40%.

But he isn't taking into account every thing I am doing to keep this bastard away. FUBC

RosesToeses

Just finished my rads and was wondering when I could expect to stop feeling like I was always looking over my shoulder to see if Cancer was trying to sneak back into my life. Looks like my answer may be "never" (kind of thought that already, though!).



I don't remember my exact number, but my MO told me (when I asked) that my odd were around 66% to make it 10 more years with chemo and tamoxifen--stuck with me because it's just like a shell game--one in 3 chance, yikes!



I wonder if our different odds have to do with grade and hormone/HER2 status, or something else?



But, I keep reminding myself that this is binary stuff, either it is or it isn't, it's not like I'll be 33% dead or 66% cancer free (well, I could be, but that's still not good), and chances are if it does come back I'm not going to wish I'd spent more time stressing about it, right? But some days I do have to remind myself of that an awful lot....

ETA I love the Auntie biking to chemo, and agree that clearly BC should be very afraid to come back and visit badasses like us!

Momine

To those of you on zometa, are you on it to prevent bone mets? What have you been told about that? I am trying to decide what to do, thus the question.

CherylinOhio

Thanks for the posts ladies! I feel better today!!  I agree with MiniMac, I have also heard that anything we read now is from ladies that were followed 10 years ago with different treatment.  I dont think a computer program can give us a % of life. A computer program doesnt take into account our exercising and our will and positive attitude.  I try to laugh often!! I do have my dark days and yesterday was one of them. But I feel like bc will always be a part of my life, like a small elephant in the room that will continue to shrink until it's in a little tiny corner of my life.  My onc says 52% chance of RO, well he never told me that, his PA told me because I asked her.  He kinda waves his hand around and says that doesn't matter now because you have had treatments.  He is the best, and he is a straight shooter, never once has he been negative about my prognosis.

FrednTan, I agree FU BC!!!!

luckypenny

Momine-  I am taking zometa off trial.  I am getting the trial dose and my onc is following one of trials guidelines.  I think there are 3 zometa trials right now, I am not sure.  I get an infusion every 6 months for 3 years with the intended purpose to prevent bone mets.   I have confidence in this and at first my onc wasn't confident but then at last years san antonio conference some better data came about and he feels like this has more potential.

The side effects after the infusion are rough for me though.  Nausea, fever, fatigue.  Knocks me out for a couple of days.  But if it gives me an edge I can deal.  I also take metformin- the trial dose off trial.  My onc has high hopes with metformin.  We'll see.  

Momine

Cherylin, my onc is similar. When I said I had 50/50 odds (don't remember where I had come across that one), he told me I was out to lunch and that he saw my odds as way better, in the 70-80% survival range, given the aggressive treatment I had received.

But in the end, I don't think they really know at this point, since the TX has improved faster than reliable, long-term stats can be compiled. Besides, I have a feeling that the oncs hope, along with many of their patients, that TX will continue to improve and thus render the stats moot.

Meanwhile, one big advantage is that I have worked through my fear of dying, and live better as a result.

new_direction

I was not told anything about the prognosis in the beginning and didn't ask. However when I responded well they told me my chances were "good" and a radiologist also told me the better the treatment response the better the prognosis (maybe that is a given but I had not thought so much about it).

I didn't know about removing the ovaries as a possibility. Does it lower the risk of reoccurrence?

CherylinOhio

New_  I did the ovary removal to get as much estrogen out of me as possible. My mom and older sister both hit menopause when they turned 40 so I figure I would have "turned" anyway but it was induced by the chemo.  My er/pr+ was like 90% and 87% so with the tamoxifen and the ovary removal I am hoping that my body is being starved of cancer food.  My onc will probably switch me to an AI, I will find out this week.  There was concern from my GYN who did my ovaries of bone loss and heart issues but when I asked my BS she said there only be heart issues if you have pre-existing heart issues, so I guess IDK if it helps but I sure hope it does!!

CherylinOhio

Luckypenny,  I am going to ask my onc about metaformin, he seems to poo poo any trials for me, in fact I think at one time he may have said no trials for lymph node pos and no tumor markers.  I have to ask him again about the trials and about 10 years of tamoxifen.

sbelizabeth

I asked my onc about metformin and she said no.  Is it promising enough that I should push for it?

CherylinOhio

I am not sure about how promising it is.  There is conflicting data about most everything.  I am going to ask Friday and see what my onc says.  I will try anything as long as it is not harmful. 

sbelizabeth

Based on the San Antonio presentation of the latest Gerpartrio study, I did convince my onc to put me on four rounds of Xeloda and Navelbine immediatly following my rads.  I can't believe I was pushing so hard for MORE chemo, but the SEs weren't bad.  It felt like just one more stab at the dying beast.