Nottingham Prognosis Index

The models may work for populations but aren't very good determining individual risk. The models are really bad with my history. Depending on which one I use theyshow I have an up to 80% chance of developing cancer with my stats, history & LCIS. The genetics doc said probably closer to 25-30%.

Oh my Gosh. I wish no one reads these skewed " statistical " reports. They are not accurate as they do not factor in alot of the newer treatments,as well as other contributing factors.They are outdated as well. They are really good though for scaring the bejesus out of you, though.

I did ask my MO, early on, what was the likelihood that I wouldn't have to deal with BC ever again. She said, it's either zero percent or one hundred percent. What I really wanted to hear from her was, you're cured...lol...

I know it's trite, but making a conscious decision to live every day, try to follow healthy habits, and let the future handle the future, is what gets me through.

I too have had little luck on getting prognosis from my MO. When I went to another onc for an opinion, I was told 40% to 50% chance of mets. I called my radiation onc and she said it was 60% in her mind. When confronted by this, MO said he disagreed and that it was 20%

I saw a oncologist nurse practitioner, she came from a larger community, 120 miles away, to counsel local Cancer patients.

She told me what my MO would not. She said my future was "uncertain". I about jumped up & hugged her. Someone finally willing to be honest.

As for prognosis, I think Lily is right, nobody can really know, especially not for any individual patient.

My surgeon, who is also my main doc, studiously avoids the question. He was, however, clearly pleasantly surprised that I was still NED at my last visit (almost 4 years from DX).

My MO thinks I have a 70-80% chance of staying healthy for a good long while (not clearly defined by him).

I remember one of the oncologists I met early on with my diagnosis asked me if I wanted to go to the computer and do cancer math with her.  I told her no..... I knew I was in trouble... I didn't need the computer to tell me that.....all I wanted was the best way to fight it and an oncologist who thought I had a chance....

I had an 8cm tumor with at least 17 nodes positive.....some in my skin....some bursting from nodes....cox 3+++

All I wanted was to put up a great fight......after that I would deal with what came next when it came.....but knowing I did everything humanly possible to be with my kids.

I found a doctor in Dallas and flew back and forth from Florida for an aggressive chemo plan.....went to MD Anderson for my radiation....and have been on Femara for ten years.  It was a solid plan.

Last week was my 11 year cancerversary.......if I did the cancer math I would never have believed I would be here today.  How much anxiety it would have caused me.... and how would that translate to my husband and young children?

All we can do is put fists up.....do the treatment ...... and go back to living......any time wasted on wondering when it might come back let's cancer win. I realize this sounds easier than it is;)

I do not think cancer is a gift...at all......but it does allow you to see the world in a more brilliant way.....to experience things more deeply....love, memories, life.  You don't want to miss out by worrying about the what ifs.

Just my thoughts;)

Jacqueline

congratulations on your 11th anniversary Jacqueline! I want to be you ha ha! Love what you said about getting on with life or cancer wins I've been grapling with this now that I'm almost finished radiation. It's interesting how the longer use of ais seem to work. I've just started zoladex and aromasin how much longer does your oncologist want to keep you on the femara? You have put up such a good fight well done!

Lauren

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Tectonic and Maria, I hear you both. It is something I struggle with. Generally I am positive and rational, choose to enjoy life etc, but especially lately, I realized that I think about death a lot. It is like a constant shadow. It is not easy to find a modus vivendi with the elephant in the room.

It also drives me NUTS that others do not seem to get it. If you try to explain it, you get told to be "positive" and stop being morbid. Many, many times people say, "oh but you did your treatment, it is all gone now, don't think like that." Really? It can be both frustrating and lonely.

I totally understand the frustration with....you did your treatment, it's all gone now, statements too. I went to my medical doctor because my oncologist had told me that if my back was still giving me problems to have her order a X-ray and she actually told me that!

I realize it is a personal choice, but I don't understand why a Stage III patient would want an "accurate" prognosis. As Stage III, we know our odds aren't the best and certainly any prognosis will not be accurate for individuals.

How does the knowledge that you have an X amount of chance of re-occurrence improve your life?

I would love to have an accurate prognosis, but I have had to conclude that this is not realistic given how the stats are compiled etc. I like information. I like having data. It helps me come to terms with reality and it helps me in decision-making. Here I do not mean about treatment, but about how to live my life.

Momine, how would knowing exact numbers help you live your life differently? I'm honestly curious.

For me, I approach things in life differently. I'm more willing to spend money instead of save, I pay more attention to what I eat and environmental toxins, and the big one, I stopped overanalyzing my relationship. Prior to dx, I had a hard time committing to now-husband because I worried that our cultural differences might eventually doom us. When I realized "eventually" may not happen, I decided why deny myself happiness over that?

But I think I would have made the same changes with any dx of invasive cancer. Obviously, I wish I had been dx'ed at Stage I instead of III. But I think even a Stage I, node negative dx would've shook me to the core. Maybe it's because I'm so young. When you're 1/2500, you realize how little statistics matter.