Oncologist said odds are pretty high....

I had a new primary after 8 years. I am scared too, as I am somewhere between a stage 3 and stage 4. My positive node was disputed as to whether it was a mediastinal node or internal mammary node. I guess what I am saying is that I am scared too! I am also taking antidepressants, doesn't help with the fear. And I am in therapy, still scared! It looks like you are on the good side of statistics, almost 5 years before recurrence and node negative. We can do this, well, it is our only choice:( isn't it. It sucks, but it is what life gave us unfortunately. I hope you get more uplifting posts than mine!

I don't have mets, but after going through chemo in 2009 for Stage 2 BC, I was diagnosed with kidney cancer last Feb.  I had an MRI on my spine due to back pain and they accidentally discovered a large mass on my kidney--a second primary.  I had my left kidney removed, no chemo or radiation.  It was Stage 3 and I'm very scared too.  I take anti-depressants and saw a therapist for awhile, who said I was showing classic symptoms of depression.

I stopped seeing the therapist a few wks ago and I'm better, but still scared and have my 'Xanex' days every so often.  I have to go for scans every 6 mos to make sure the kidney cancer doesn't metasticize.  I freak out every time I have to go.

I don't know how to live without the fear. 

Is it just me, or does the data on the link you provided seem off? I looked at it last night and the top chart was really confusing, as was some other info. Does the top chart pertain to people who haven't had tx? The only reason I ask is because if that is off, then I would question the rest of the data, kwim?

Denali - thought I would mention my mom had stage IV kidney cancer almost 20 years ago. It's one of the cancers that can just stop and "poof" ... magically gone. Well...I prayed my head off too :-) just a little story of hope for you.

I don't know if this will help, but I have not had a local recurrence but was told my rate of recurrence was 30%. And I researched Paget's disease and read somewhere that if the cancer is in lymph nodes than the prognosis was poor. It may have been over 40% recurrence or near that.  These figures were for a distant recurrence for me. I had a mastectomy the first time. These percentages scare me very much. They seem very high.  I think it really is impossible not to worry about it but what we need to try to do it just try to push it out of our minds some-how. Right now, you are here.  And there is a 60 chance your cancer will not come back. That is also high. I know the ole we are not statistics is said frequently and it doesn't help much with the intrusive worry. It is a very hard place to be worrying about this. I think the percentage of having metastasis after a local recurrence is higher if you have had a mastectomy. It is low if you had a lumpectomy. Did you have the BMX after the cancer returned locally and a lumpectomy the first time?  If this is the case, than you really are on the good side of this statistic.They didn't get it all the first time. I think you have a perfectly good chance of being perfectly fine with no recurrence. Your oncologist is wrong.

wrsmith2x - I totally understand your fear. I was a wreck for awhile after diagnosis. I had a relatively rare BC in the literature it was called a lethal variant. I had 2 large nodes with ECE. Finally, my MO said stop looking at the statistics. The way I see it, your risk of recurrence is either 0 or 100% depending on whether or not it happens. This time you were on the 100% side. I hope that you find yourself on the 0% side after this treatment cycle!

Do you think getting a second opinion would help?  Perhaps this person would be better at explaining why they are not doing more treatment. I think your worry is valid the way you have explained it and you need more support from someone in explaining the why part...I think this would ease your fears. And you are right, it is a horrid beast!!!

I'm going to try and find the much better calculator I found once than the page/link you posted!  With much better survival statistics! 

wrsmith2x - as you know I had a local recurrence too, similar time frame. Did you ever get any solid answers on this? I have the exact same fears... there's so little data out there on what a local recurrence means for the future. My doctors told me not to worry, but 40% - that's bad

i had a new primary after almost 14 yrs opposite breast this new one been different type triple negative i guess with family hx and so many with brca1 in the family oncol gave me a poor prognosis although at stage 1 grade 3 clear nodes but the tn is the bad one so i was told my recurrence was 40%without chemo and 20% with chemo so is this to include local recurrence or mets into organs? i am not even sure that i want to bother taking anymore chemo at this point cuz i feel that this tn will come back right away or its still there and all this sickness is not worth the lack of quality of my life if its not going to wofk i just think that my chances of beating this is very low

I also choose not to do chemo after the recurrence. My first batch of chemo was something I'd never want to repeat unless there was a 100% proven benefit. It's obvious that my body only partially reponds to chemo anyway.

I heard that when TNs recur it's usually at 2 years, where for ER+ it's 5 years. I would think that even though we didn't make it 5 years, we're still doing good because our recurrences were way past the 2 year mark. Right? In my time on the boards I've only seen one TN recur at 6 years, the rest were 1 to 2. Just trying to make us feel better. What I HAVE NOT found is many people who have local recurrences and then get mets in a few months/years. I know it must happen,though - but the datas not out there.

I think of you often too, wrsmith2x. May the coming new year bring us health and peace.

Anamerty:

The % he gave you was for systemic occurence, as I doubled checked with my Onc as well. 

I get frustrated when I see doctor's blurt out that someone's prognosis is poor, with an early stage and 0 node diagnosis.  But he might be speaking in mere medical terms.  TNBC typically has been classified as having a poor prognosis compared to other bcs.  The term poor is what's confusing to people.  Perhaps anything that does not have a 95% cure rate they consider poor, so you have to read the true medical data.  We don't know what is determining the word "poor" for them.  It is anything with less than a 90% or 95% cure rate?  

On the mayo clinic website, they have a 5 year survival rate pretty close to the er+ bc (which was at 98%), and they have TNBC at 85% +/- 6%.  So for some it can be as high as 91%.  Also, it is considered a poor prognosis, because according to the TNBC foundation manual (or maybe somewhere else I read this), it is usually discovered late, so the many initial late diagnoses really have it presented a certain way, due to the means method.

I think Oncologists and frame of mind is everything.  I've been to 2 Oncologists - 2nd one just for a 2nd opinion on a narrow margin.  One made me feel perfect and said my prognosis was excellent.  The other one was a completely different vibe.  As a result, my blood work at the other one, was way off on multiple items.  I went to my original Oncologist (he is my permanent one) and things were completely within the correct ranges.  I think environment plays a HUGE role in things and if you are walking into your Oncologist's office each time, thinking you are doomed, that is NO place to be. 

Attitude and how much benefit you have from treatment will influence as well, how motivated you are to do the healthy eating and exercise that they say is so beneficial for us.  If you feel already that you have no chance, then you might not even try to do the things that are proven beneficial.

But I can tell you having been from 2 completely different offices, that the enviroment will make a difference.  I'm proof of that ... my tests were out of range, and my body (and I) felt under attack by that one office.  Back at my normal Oncologist's office, I actually had the best test results ever .... and I felt the best I ever had.

To give you an idea:

July 5th - Normal Onc - Good labs

August - Other Onc - labs had some items out of range 

October 5th - Normal Onc - Best labs ever - everything 100% in range

Nobody knows for sure how we will make out with this, but quality of life is huge ... and if you are having to face an Oncolgoist that tells you your prognosis is poor, even with so many favorable results on yourself (the early stage and 0 nodes involved), then I would not hestitate to find a new Oncologist.

It's the same principle that some Oncologists have TNBC patients keep their port in for 1 year after treatment, and others have them remove it immediately after treatment on Stage 1.  What type of signal and message does that send the TNBC Survivor, who is trying to move forward in life, to have to look at a "ready port" every day, "just in case".  To me, that is fear and intimidation, not preparedness.  How does one break away and move forward and think they have a fighting chance with a hard uncomfortable port lump in them?  And it's not like it's a huge delay on getting one in.  The hospitals can do it on short notice, so I feel very very strongly that Oncologists who insist on that port staying in there for the 1st year is dramatically impeding the recovery efforts of that TNBC Survivor.

I feel like you have a excellent chance of surviving this Anamerty.  I'm sorry that you are having to hear such harsh words on such an early stage diagnosis.

Remember, most women do survive TNBC!

If you ever forget that, then go to tnbcfoundation.org and read their manual.

We are all here for you - you go celebrate that you caught this early!  I still believe early detection is key.

Have a great day - and much hugs to all of you on here - we will all get through this together!

Debra

debra thank you so much for your posts they both made me cry i do see 2 oncologisfs at cancer centre and i do feel they know what theyre doing but i know your right when saying poor is the medical term thats used but not easy to see it on paper im thinking why fight the fight and feel like shit if my prognosis is poor they told me it was because of the tn factor i also found out that the 1.8 cm lump found july was the same ultrasounded after mri in feb and that along with another small dcic turned from cysts to cancer 5 months later my 2nd oncologist said that they were so early stage at that time they didnt show but because of the tn it wouldnt havd made no difference if it had have showed in feb because id still would have had the exact same surgery and chemo but it would have beeb finished by now so that isnt good cuz youd think that catching them even earlier would have changed the out look but no they said no