Nottingham Prognosis Index

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  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited June 2015

    I ask my MO about my prognosis every time I see him...as if it will change. I bring him article after article as I scour the internet looking for something that will relieve my anxiety. The one thing he said that sticks in my head is, "Your numbers are your numbers. What is in the literature about other patients is not you." He's referring to my path report and Oncotype score. I've used every calculator on here hoping one will tell me that everything will be OK. All that I know for certain is that I'm feeling good today and I'm going to enjoy it.

    ~ Wishing all of you fine ladies peace of mind.

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  • Momine
    Momine Member Posts: 7,859
    edited June 2015

    Warrior, I have absolutely no problem with you posting here, but I did want to point out that this thread is in the stage 3 forum. If I am reading your profile right, you had stage 0 and 1, and you had extensive treatment, which means that your risk of cancer recurrence is somewhere in the 2-6% range over 15 years. Let's just say that if that was my risk profile, I would be a very happy woman right now ;)

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  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited June 2015

    Momine - Yes, I am sorry. I did not realize when I posted that this is for the Stage lll forum. I saw the active topic and I posted. I have some oddities to my cancer that shoots my risk much higher but I absolutely appreciate that my circumstances are different. I do apologize.

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  • Momine
    Momine Member Posts: 7,859
    edited June 2015

    Warrior, no apology needed at all. I have no problem with cross postings, and I don't think anyone else does either. I just wanted to give you a heads up.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2015

    i am not sure what stage 3 prognosis is exactly anyway, 70% chance of recurrence in 5 or 10 years or 30% chance of recurrence? I am asking as I have decided to take a break from Aromasin, after getting a second opinion from an Onc willing to listen. He said Aromastase Inhibitors reduce recurrence risk by 50%, so in absolute risk terms that could be 15% or 35%.....,,I think for lobular they state it as ten years not five......? Anyone know?

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  • Momine
    Momine Member Posts: 7,859
    edited June 2015

    Lily, when I looked it up in cancer math, the risk of dying from BC over 15 years with my DX and no adjuvant treatment was about 50/50. With the adjuvant treatment I did that risk dropped to 25-30%. That of course can't take into account new and better treatments down the pike. On my better days I keep in mind that the longer I stay alive, the better the chances of some new treatment being developed

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  • mary625
    mary625 Member Posts: 1,056
    edited June 2015
    I'm with you, Momine, on the difficulty of dealing with uncertainty after having some really bad luck (to quote my surgeon on the latter). It makes it difficult to make decisions like changing a job, for example. I don't know how it is in Greece, but here you start back at the beginning with accruing paid leave, having to wait one year from FMLA protection for your job, and maybe a waiting period for disability insurance. This is just one example of the major life decisions that become much more difficult when there's at least a 50% change of a metastasis occurring. As time has progressed, I'm getting a little more confident, but hoping my bubble won't be burst. I am starting to look at new jobs. I left a relationship that had been over for awhile. I see people living well with Stage IV, and I know that I could do so too...but I'm not gonna be happy if it happens when I don't have any benefits available!
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  • Momine
    Momine Member Posts: 7,859
    edited June 2015

    mary625, yes, those kinds of decisions become far more difficult for me too. I know exactly what you mean.

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  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited July 2015

    I always found conversations about retirement planning and 401ks and not having children to take care of me SO depressing, boring and painful. Good news. I don't really worry about any of those anymore at all. I put a little $$ in my 401k each paycheck and I don't sweat it if will be enough. If people talk about this stuff too much I avoid them like the plague. Grateful I am well enough to work and collect a paycheck today. I couldn't in 2012.

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  • Outfield
    Outfield Member Posts: 1,109
    edited July 2015

    Long, long time since I've been on here.

    July 1st I started a fellowship, something I had thought about for a while, then thought I couldn't consider when I was diagnosed with Stage III. I've got kids, and it means lessening my earning power for a couple years. That's the sort of decision I find hard.

    I hate it when people say that nobody can be certain about the future, but truth is, we play the odds ALL the time. I went to medical school knowing there was a small but real chance I would not be healthy long enough to pay back my student loans (this was before cancer). Everybody faces that risk. What is it? Maybe 1, 2%? It's small enough we're willing to accept it. We also create our odds all the time. I don't ride the most direct route to work because I think some of the roads are too dangerous for a bike. I do see people on bikes, but I think they're nuts. Even though the absolute % of people who get hit is probably quite small, I choose to avoid that risk and ride other routes.

    I don't think people usually run the actual numbers in their heads, but the relative risks are there in the backs of our minds nonetheless. What makes this so hard is that the risk is unavoidable.

    I think it's really interesting that most of the posters on this thread are at least a few years out.



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  • AliceS
    AliceS Member Posts: 98
    edited August 2015

    Momine and others--this BC DX has changed our lives SO much--how can we not worry? Others want to be supportive/positive to make us feel better--but we think they don't understand. When you think about it--what else can they say since they can't predict the future either. I'll probably never feel carefree again, (and I'm a born worrier anyway! :)-- but it does help to get involved, keep busy, live life, appreciate, most of the time. Hate to think years down the line if we're still here that we wasted all that time in fear and missed a lot of joy. Easier said than done for sure--but what else can we do but at least strive for that.

    Best wishes to all-- remember there are LOTS of positive stories out there. WE have the potential to be one of those!

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited August 2015

    Outfield...wanted to give you a big congrats on the fellowship!!! Way to go. 6 years past diagnosis, I am having one of the most satisfying years of my life. I think it helped that early on I decided that living well would be the best revenge and that I would consider myself cured until proven otherwise. Of course, that meant that I scared myself to death over financial matters where I didn't need to. But then, because I was so careful, I will be just fine going forward.

    For me, life is more vivid than ever. I also make sure that I fit in adventures, large and small. Like Outfield, I am a cyclist which is what I do to stay fit and for a lot of my adventures. I am thinking about cycling Lopez Island off the coast of Washington again this coming weekend. Here, the challenge is staying on the road and not landing in the ditch looking at the scenery.

    I am in my mid 60s and grateful to be fit and healthy. I can't think of anything I don't do because I am older or because I went through breast cancer. My new client is thrilled with my work, and I just got major kudos from two long-term clients.

    I am watching my email as I write this to make sure I am up on my work projects. Need to get in my crunches prior to the carpet cleaners arriving. Life is wonderful. Really wonderful....and all the more sweeter because these are truly bonus years. - Claire

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