What is our prognosis, anyway?

Kathec, was your p167 # on your path report?

My DX and treatment info may be a little misleading.  The tumor size and number of nodes was AFTER chemo.  I made a decision to go with those numbers, since I don't really know exactly what I had before chemo, having had my chemo first.  I was told that my tumor started at 7 to 10 cm.  No one ever counted my nodes at that point, but I knew I had one that was already 2 cm.  The MRI of the node area was lit up and looked like spaghetti thrown against a wall.  I had extracapsular extension--again, after chemo.  But I've been told since then by one onc that chemo doesn't enter the nodes well.  They have their own lymph system and fewer blood vessels (if any).

As far as an MRI goes, I had the time period during chemo to make up my mind about surgery and was told at that time that even with the ILC that I had that was completely missed by a mammo 8 months before, that I would not qualify for an MRI on my other breast.  I knew the cancerous breast was going--tumor too large to try for a lumpectomy.  I had 3 places light up on the non-cancerous side, and it took until 2 weeks before surgery to prove that they were all benign.  With no MRI for screening, I went for the BMX.

I agree with someone above who said that it's the chance of distant recurrence that I worry about the most.  Also known as mets.  

kathlyn26,

I agree with you when you say that some stage III are actually stage IV but didn't show. I was dxd stage IIIb ILC , because of extensive lymph nodes involvement they scanned every part of my body in search for metastases and found nothing. On my third year anniversary it showed in my liver. So 2 years are a median but not a certainty. I hope all of you ladies will never see it reappear again.  

I was diagnosed with a leasion in my; upper spinal column...two mri later...Dr.'s are saying non cancerous...will have another mri in June for follow up....Dr.'s did not elaborate on the subject, but I will be asking for more info at my April visit...

you might be able to get longer term disability, i couldnt, cause i hadnt worked enough... i was on unemployment when it happened, so none for me! but it did let me qualify for a low income breast cancer screening program, that has paid for everything xcept pain meds, lymphedma supplies, supplements or gym! It's paid for by the tax on ciggies, which i myself paid! if i was you, no matter what, i would just try to live and create the kind of life, where you will have the fewest regrets. trying to balance work, children and family, friends, and your own ambitions, is a balancing act, even without this diagnosis. maybe your work will give you just a little more time, in which you can do some more thinking and healing. good luck, and hope to see you around!

Kathec, you are west coast, she is central time? I live in MT. time zone. I am one hour ahead of you. 

JennieTinMa, I took a medical leave of absence ( I work in a Intermediate School ) for the entire school year. I have not done it yet officially, but I plan on quitting. I will turn 59 in May. 

You are obviously much younger. I have been told you only get disability if you are stage 4, through the gov.( Even then I do not think its a automatic benefit ) Your private policy might be different. For me, at my age it makes sense to quit. Also my husband has a small business that I can help with. Being stage 3 makes it hard to be confident about our future. I noticed you are one year past dx. I do not know about Obama Care, but there are different policy's, depending on what you sign up for, can afford. 

Jennie - Usually you can not get disability unless you are actually disabled - meaning that you can not work. It's pretty hard to get long term disability, generally speaking it means that somebody (the government, an insurance company, somebody) is paying you but not getting any return for that payment. As far as insurance - 'Obamacare' is just private insurance that is subsidized for lower income people. It's not different because it's 'obamacare' - it's Bluecross or Aetna, or whatever particular policy you choose to buy. 

It is tough not knowing how long we have - but given that your diagnosis is much like mine, I'm guessing that it is more likely that you will live out a normal life span and die of something other than BC than it is that you will die of BC, and ultimately we all have to consider that probability as well. Maybe the answer is somewhere inbetween - could you work part-time for a while and get by on that money & have some extra time to spend with the kids? 

I feel sad when I read that people are afraid that their prognosis is grim for a long life because they were told they were Stage 3, although I understand the fear.

I still don't understand at all what our actual prognosis is.  It seems many think recurrence is inevitable, while others believe they have long lives ahead and are finished with this.  It makes me crazy....almost literally, my family would tell you.

I have my implants placed in one week and I just want to move on and live after that and not plan to die early.   I suppose I am fortunate that the letrazole has been pretty kind to me.

I know of many long-term "stage 3" survivors.  Many.

Isn't it true that many treatments are coming soon?

thank you, H-i-1 !!! i am just living my life for all it is worth, but i am also taking this time to educate myself, and also just getting things in order, too, to make it easier for my man to know where everything is- passwords, important papers, acct #'s, etc, and cards to send to friends to notify friends of eventual possible passing, whether from bc, or otherwise. part of the reason i want to do that, is so friends will tell him stories about me, before he knew me! i think he would enjoy the friends of mine he hasnt met yet, and it might help to make him feel less alone. But, every day, i try to make some art or writing or gardening, visit or good things to eat for us, tightening up ship, etc, so most of our days are spent living life fully!happy 1st day of spring to all!

My 3 month follow-up appointment with my ONC was yesterday. My chemotherapy treatment was FEC x 3, followed by Taxotere x 3. One month after my last chemotherapy treatment I started Letrozole (Femara) and 6 weeks of radiation therapy. Radiation finished one month ago yesterday and also happened to be my 3 month follow up appointment with my ONC. Throughout all the surgery, chemotherapy, and radiation I felt like we were actively working at ridding my body of cancer. I managed as well as I could throughout treatments and Letrozole is sitting with me quite well. My ONC mentioned that I would benefit being on Letrozole for an additional 5 + years once the first 5 years are complete. He complimented me on "how well" I did through everything. So just before we were about to leave his office he said "remember, you are at a high risk of recurrence" he must have seen my mouth drop open, and then said " but remember we designed your treatment plan for a cure. And that us what we hope for". He has discharged me to my family doctor now.  That's it! Today I'm feeling a bit lost. Are any of you taking any supplements other than Vit C and D? I just feel like I should keep doing something to defend my body. Anybody have suggestions?

The truth is we just don´t know, no one actually KNOWS, they just extrapolate from what happened with other people five years ago (they have to be five years out of date if not more) and since we are all individuals how do we know if it applies to us or which side of the fence we fall........so I take no notice of statistics...... 

mary625, please be very careful and read up on prostate cancer before his surgury! i dont know his details, but in many instances, men who have it still die of something else, even without treatment! how old is he, and how long have they been watching him? did they just do a psa? surgery and treatment can affect him the whole rest of his life. has he already had the biopsy? dont want to scare you, but sometimes the doctors like to push to fast, and as you know, hearing the word cancer in relation to yourself can be frightening. hug and best of luck to you both.. thats a little much!

Jennie,

A friend of mine also had prostate cancer and had the internal radiation. He was doing some researches and asked ppl around and internal radiation (seeding) seemed to be more safe. I've read about surgery and that's pretty risky but I only read very basic stuff. But for some reason the internal radiation wasn't a lot online.....Good luck with everything....

Mary625,, knowing how you feel, I would say that disability recognizes depression/anxiety/PTSD,, all the horrible emotional effects that cancer can give you. I know I couldn't work in the state of mind I am in,, I cry at the drop of a hat. Also, having lymphedema, you have to be very careful with injury, cuts, or anything that can make it worse. I would say to try. What would it hurt? Hope that helps!

It does have to be one day at a time, and it is uncertain, but at some point after my diagnosis, while I was having a meltdown or crying jag of some sort it suddenly hit me that nothing had changed, really. Life was always uncertain and one day at a time. 

I think there was a report of a plane crash or some other catastrophe on the news at the time and I heard it through my tears and was like "Oh. Wow."  The realization was huge for me; life after this moment is never guaranteed: better enjoy it as much as possible, regardless.

That's not to say I don't get depressed (I've been unusually depressed and down today) and scared (BC is scary stuff,) but at the same time if I had to choose right now between dying eventually of breast cancer metastasis or dying in a fire, I honestly believe I'd choose breast cancer. I don't know if that's crazy or not, but that's how I feel about it; dying in a fire is the worst thing I can think of. Breast cancer, therefore, isn't the worst thing that could have happened to me. (The treatment for it, however, does suck.)

I really believe it's a crapshoot anyway; I see too many women who seemed to have wonderful prognoses who then wind up Stage IV, and too many women with what should be worse prognoses who are doing fine years and years later. It tells me that this whole "staging" thing they've come up with to predict our prognoses isn't a very reliable indicator of very much at all. My own oncologist doesn't seem to be all that impressed by my stage IIIc diagnosis. His comment was that he supposed that it "technically" put me at higher risk for recurrence than if I'd been diagnosed at an earlier stage, but that so long as I'm doing great today he sees no reason not to expect me to still be doing great tomorrow, and he fully expects me to be complaining in 10 years about STILL having to take AI's, which I will eventually be on. He sort of twinkles when he says these things, and I believe that HE believes what he's telling me, so I believe him, too.

So yeah. My prognosis is that I will do great unless/until I don't, and that eventually, I will die of something. Which is exactly the same as my prognosis before breast cancer.