What is our prognosis, anyway?

Yes, Denise it does give us hope.  I also have been to your blog and enjoy it.

I've been approved for Zometa and talking to my MO on Monday about SE and other details.

Ziggypop, I am glad you understand why I might want all the available information I can get with regards to my diagnosis. Not all deal with there cancer diagnonsis this way, but I do and I hope other can respect that. And as a scientist, I also want to know what it currently available for treatment for my diagnosis that I may not be aware of. Also, I am not one for the blanket statements like  'we all know someone who has stage 4 cancer and is in thier 10 th year so don't worry too much about your diagnosis because you never know what will happen' I respect that some people deal with cancer by not watching test results and put their stock in 'faith'. I respect that and it is their right. But this is not me.  I feel it is my job to be asking all my doctors as many questions about my care as I can, as otherwise, my treatment turns into their 'everyday'.  It is my job to be getting all the test results and asking question about them too, and asking questions about new kinds of care. It is these reasons I did ask to have my tumor biopsy reviewed and more lymp nodes tested as there was not enough in the origional biopsy to determine if I was a 3A or a 3C. More nodes where testing, but it is still not clear to me as it looks like the amount removed did not have a lot of nodes. This being said, it would not change my treatment, so unless I want more surgery of my LN, I am at a dead end.

As for prognotic tools, I think we all need to be careful when using these as there is ALWAYS assumptions that are made in the underlying math that would not apply to our individual cases. The best information on prognosis should come from our doctors. They don't like talk about it, but, I have discovered that if you ask enough, they will.

I do have a question for the group - Do any of you have diagnosed leasions in your bones or liver? These are leasion that have yet to be diagnosed as cancerous? If so what are your doctors sayong about them?

I shared somewhere above in this thread that a 2nd opinion following treatment said that my chance of distant recurrrence in 5 years was about 50% or more.  I then saw a 3rd oncologist at a place that is posting an 82 or 89% success rate with their Stage III patients and was told there that I have greater than a 50% chance, if not 60%.  I just saw my original, local oncologist yesterday, who would not answer my prognosis questions in the past.  When confronted with this info, he said that in his opinion my recurrence rate was cut in half because of AI's and thus was more like 25%.  The other two of course know that I'm on the AI's.  The 2nd doctor doesn't seem to have much faith in AI's at all, but the 3rd does.  It's all very confusing.  I've decided that I'm going to have confidence in my health.  I've been through two years on the AI's and am doing well.  I had scans with onc #2 in October which showed no problems.  I started on Zometa with the 3rd onc.  She also advised baby aspirin, Turkey Tail mushrooms, Metformin and 30 min exercise 6x/week with 5 veg and fruit per day.  I'm also doing Simvastatin.  So there's a summary of my tour of the good ole USA in search of answers.  

Mary....that makes my day, also !

Two more added survivor stories:  I've shared this on another thread too - my DH relative had stage 3 bc 14 years ago and turned 90 last summer.  She had bc in both breasts and 4 lymph nodes.  My cousin had stage 3 in the 90's when she was 27 years old.  It was in 6 lymph nodes and she is alive and well today.

I think of these woman often and pray for a similar future.

Mary625..thank you for sharing such an encouraging story..also way to go doing Pilates!! I admire your fight and traveling to seek out the best treatment for your self. Thanks for sharing what you're doing.

Peacestrength...thanks for your stories of encouragement also. There are great books out on the Anti-cancer diet, I visited the Block Center as well as read lots of articles on diet. If you google Huffington Post, the Vegan diet's huge impact on cancer, written by Kathy Freston 12/09/2012 you might enjoy reading it. I also eat a strong plant base diet and now have come to truly enjoy it.

I am interested to hear what a low oncotype score might mean for someone with positive nodes.  Open to all thoughts and opinions.  Do you think it enters into prognosis after it has gone to the lymph nodes?  I sometimes have a hard time understanding statistics, but have tried to read and research this.

Okay, yes, kathec.  😊

But, what I'm wondering is what a low oncotype means for someone with positive lymph nodes.  Does it affect prognosis?  Interested in everyone's thoughts and knowledge.  Beesie? 

Here's some info about oncotype scores with node positive BC - it appears (at least from the study presented here) that they positively correlate with both recurrence rates and survival rates for those treated with chemo and hormone therapy. 

Lower oncotype = lower recurrence rate and lower 10 year mortality rate 

http://ww5.komen.org/KomenNewsArticle.aspx?id=19327354940

I to am perplexed by the oncotype scores  my score was 19 but my cancer grade, type,etc. seems far less aggressive than the two ladies above posting theirs was 11.  my understanding your cancers without the oncotype score was more aggressive and at greater risk for recurrence but when you look at oncotype it doesn't tell the same story. Its all so confusing its no wonder I constantly 2nd guess my decisions. Anyone else confused 

I understand, Mary!  I had to basically be so annoying about it that I forced them to do it.  They definitely weren't going to without my obnoxious pushing.

And, yes, I do think it can be confusing, Kathie.  However, I think your score is still pretty low and you have made good decisions based on what I see.  Your prognosis looks very good.

Mary625,

I have seen your bio many times, and keep thinking of asking you...has our MO or RO or PCP said anything about your small tumor, bad node dx ?  My tumor was 1.1 cm, with 6 nodes all matted together and extranodal extension..( cancer growing on the outside of the nodes ). They tell me this is really unusual, to have such a small tumor. I have asked if it would be possible to get a MRI in a year or two, I do to trust the mammo anymore, since it did not find my tumor 2-3 years ago. So far I have gotten NO ! They say the mammo did find the tumor, true, but with 6 cancerous nodes?  I am obviously more worried about mets than a breast recurrence, and on these threads it seems everyone gets an MRI, even ladies dx with stage 0 or 1....would love to hear what you are being told...

Thanks, Elizabeth!

Elizabeth, 

You have a huge tumor, and you think the mammos failed you. I had a really small tumor, 1.1cm, but with 6 matted positive nodes, cancer on the outside. So I think mammos failed me also. I have asked for a MRI on the other breast, when my year is up. I have been told no by RO & MO. It seems when I read on these threads MRI are quite common, stage 1 even...it seems being stage 3 would be more likely that you could get better testing..Am I asking for too much ?

Kathec, I truly am much more nervous about mets than I am about getting another tumor in my breast. The extra nodal extension, is what keeps me up at night, and our scary prognosis.

I would like to get a MRI on the healthy breast in a year or 2. I am assuming the breast with the cancer should be stable with the lumpie & rads. My lobular cancer is sneaky and does not show up on mammos easily. I am going to try and relax and talk to my PCP next summer, I have a better relationship with her than MO.