negative nodes ending up with Mets - numbers?

Lexi I had 33 rads treatments,  I asked several times about chemo but my onco at the time said not necessary to aggressive for tumor size and grade,  that Tamox for 5 years would be adequate,  anyway back then I TRUSTED DR'd 100% and had not yet found bc.org.  I started tamox about a wk before rads started 2wks into rads I was a complete mess -  unable to do just about anything, could not drive (dizzy headaches) nausea,  could not stand on my own for any length of time,  etc, etc.  Onco stopped Tamox until rads was done,  then we started up again,  same thing, stopped again for a month,  same thing.  I was a zombie, just could not believe what a mess I was, oh yeah forgot to mention the most wicked hot flashes ever.  After about 8/Mo's of this he just said Cathi you have to make a choice between quality of life and life -  I had absolutely no quality at that time,  my DH was having to help me shower, I was going to rads  in a wheel chair. 

He would not put me on anything else because of being premenopause,  yet I have not had a regular period in 3 years.  So here I am now waiting and wondering,  not really worrying (at least yet) it's been a long 3 years and somehow "shock and fear"  doesn't slap me in the face as hard anymore.  (Excuse my language) but it Pisses me off more.

Just wanted to ad,  I agree with you gals on the chemo,  I so wish I had more knowledge and backbone 3 years ago,  but I didn't  - sooooooooooo now I do what I gotta do. 

Don't put too much blame on the doctors.  I think the insurance companies are probably the biggest culprits.  And don't forget, there are a lot of women on this board who are declining some of the conventional txs that their doctors are recommending.  And there is so much conflicting data out there that we really don't know which is best.

That is one of the positive things about being stage III.  They throw everything at you.  Not too many tough decisions when you know that the odds are really bad if you do nothing!

Lexislove - I totally understand what you mean about trusting one test when making the decision on cancer treatment.  Everything I read when I was diagnosed had me all prepared for chemo.  And I wasn't really scared of doing it, either because I thought of it as a safety net.  Then when I got my Oncotype score and 2 oncs said no to chemo it took me weeks to get used to the fact that I wouldn't be doing it.  My family was sure happy I wasn't having chemo, but I had to really talk myself into being okay with skipping it.  I researched, read and even posted a question on these boards asking people how reliable they thought the Oncotype test was.  I go back and forth every day if I'm doing enough just taking tamoxifen.  I feel like I'm walking a tightrope without a net. 

Cathy--good luck!! I can't believe with the tumor markers that insurance would deny you any test you need.  

It IS scary (well the whole thing is scary) to make decisions where nothing is definite. I had a lumpectomy since mine was stage 1, grade 1, etc. I found out there was another tumor during surgery which was not good news. I had rads but with my dx and fairly low oncotype score (18) my onc said she didn't recommend chemo--that tamoxifen would act similarly, more effectively. I wonder also if there is something else brewing in there that didn't get picked up on any of the tests--I found the tumor myself and none of the tests for that showed the 4mm second one.

Ironically, there are other threads where women feel drs are pushing rads and chemo on them unnecessarily...it's just a hard decision to make. I know that chemo breaks down your system so that's why is the relative benefit from it isn't much they recommend you forgo it. The problem is that everyone is unique but we make decisions on group percentages. I truly hope I don't come to regret not getting a mastectomy or doing chemo but you make the best decisions you can at the time...

Cathy--sending good thoughts your way!! 

Cathi, there is no friggin' way you are getting bone mets in 'The Summer of Cathi!'. You are in my prayers. Don't worry, I won't say anything on the other threads we are both on, as I think that's the point of separate threads!

JanMarch - I know what you mean about feeling like you're walking a tightrope.  I had a similar experience.  I was convinced I was going to have to do chemo.  I was upset about it cause my son was graduating high school (just did in June) and you kind of have a vision of how that's going to be and me being bald certainly wasn't how I always pictured it, but I was pretty prepared the answer would be yes.  When the Oncotype came back at 12 and the onc said no chemo I really couldn't believe it.  I checked my insurance just to see what would be covered if I  wanted to do the chemo and realized that by having the Oncotype (which was covered by insurance) and having it come back in the low-rsk category, I was not eligible for chemo coverage.  My family and friends were relieved I didn't have to do chemo, but you always have this worry at the back of your mind that the don't quite understand.

Sue

barbe1958 - I think we're following each other around this website.  I know what you mean about the "poor mom" thing.  I actually expressed this feeling to a few people and was not thrilled by the so called support I received.  It falls in to the dumb things people say catagory.  There was of course the "Well at least you get to see your son graduate."  Of course I was thrilled to see him graduate, but you want to say to these people "How would you feel if you were in this position?"  Or of course there is the, "You can always wear a wig."  You just want to scream at these people and say shut up!  I don't think that's right for them to take so long to do a test just because the sample is from a different country.  They should do them in the order received, don't you think?

Sue

I never had the oncotype (as far as I know anyway) I had a Onco I hated from day 1 back then,  he based all his decisions on grade,  tumor size and my age.  In his opinion I was not at high risk,  well A-Hole based on your perception,  I should never have gotten BC, no family history of BC (Liver (unknown primary - Mom) & Lukemia (maternal G'ma)) but no BC.  I have sense had BRAC (Negative for both) but that really doesn't mean a whole lot to me, I have already been DX with BC, did it more so my DD's would have more info. 

I have come to realize at some point you just gotta come to grips with this crap,  nothing and no DR is 100% ful proof,  I would have done a few things diffrently 3 years ago,  had I known better,  had I listened to MYSELF,  but I didn't and I can't go back.  While I am not a religious fanatic,  I do believe in God and have realized he has some plan for sure,  so I try not to waste a ton of time with regrets and what if's and even worry about whats going  on inside me ,  I do loose it every now and then as Barbe well knows,  but I have to much goodness in my life to let that be over shadowed by bad Dr's,  fighting insurance CO's etc, etc.   So I pop a pain pill when needed,  see the onco when I must,  and wait for a 100% positive answer to someting we are pretty 99% sure of already.  I am not sure knowing 100% right now would change anything I am doing anyway

Yea I am with a lot of stage 1 ladies with no chemo...I am wishing I had gone with my gut feeling and insisted emphatically that I do chemo...Then I would have had ALL bases covered.........SIGH ....It is all just a crap shoot anyway, right?........Many hugs and healing thougths coming your way today, ladies.........

Edited to add......my onc won't even consider Zometa even though i have family history of osteoporosis (sister who is stage 3b)....She insists all I need is calcium and D3 plus a multivitamin.....OK if that's is all I need then why is my D3 low and I have osteoarthritis to boot?.....

Hollyann have you had any scans/MRI x-rays,  My onco is pushing for the MRI over anything as he says that is the most accurate for Bone Mets,  X-rays are good,  but can miss, PET scans apparently have a high rate of false positive, I can't even recall why he likes MRI over the bone scan,  its is all confusing and yes a crap shoot.

Good wishes coming your way Hollyann,  I don't have any neck pain,  actually nothing above my lower back,  mine "symptoms" started in Feb with pretty bad rib pain,  I thought it was MX related (10/08 was MX) BS said not because it was way below the surgery & drain area.  I just dealt with that,  after about 3 weeks or so that did go away,  then I started noticing the lower back ache and hip/thigh ache,  but that would come and go,  so I thought for sure I was just doing something to irritate my ever growing older body - LOL, as the months have gone on the pain (but actually it is more of a horrible deep down in ache) has become constant/non-stop daily,  I had not planned on seeing onco until my SUMMER was over, but I had to get something to help W/pain as I was taking way to many aspirin that was causing nausea, Tylenol does nothing to relieve the ache.  Also kind of weird that back in May out of no where I broke my toe (same side as hip and back pain) just walking and holly crap my toe snapped.  Thats fine now,  but kind of weird.  Over the past 2 weeks in addition to the ache I have noticed a pretty constant burn in my hip where the soreness is, who knows,  I know some of the ladies say they never had a symptom at all.

Again CA has no rule book. But take care of yourself,  do what you need to do ,  theres a great thread somewhere on here with a list of agencies for help,  I actually think I have it saved in my computer I'll look for it for you. XOXOXOXOXO

FOUND IT   http://bb67.wikispaces.com/

I had a bilat and was glad I did as my 'good' side had ATHP. (I think that was it, it was the bad one, anyway.)

I wish I had had the courage to have that bilat back in Dec 08.  I had a lumpectomy, twice.  Two differnet oncs in two different cities said no to chemo.  But a whole body PET/CT scan showed a lesion in my liver which has proven to be BC.  Now, 6 mo later, when I would have been just finishing up chemo, I will be just starting it.  DARN!  If I only knew then what I know now...

By the way I have done this all backwards.  I had 33 rads in Feb/March.  Go figure.

Ruth

syndney--hope it all goes well. How did they find the liver lesion--blood work? Also what prompted them to do the CAT scan? I want to make sure I am having the right tests done...

well it's good they are checking--hopefully it turns out to be nothing.  I had no nodes involved nor vascular involvement so I think that is why they didn't do tests. I did ask and my onc said they are not definitive and can lead to false positives so they don't usually do them unless they have reasonable risk. I am mtg with my onc next week and will ask her again...