Prognosis questions

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TS0521
TS0521 Member Posts: 12
edited June 2014 in Young With Breast Cancer


hi I'm 29 and just diagnosed. My doctors will not talk prognosis! I know I have her2 possitive, estrogen receptor possitive invasive ductal carcinoma. It is node possitive. They biopsied 1 node and found out it definitely has cancer; however, cat scans received 3 other worrisome nodes. So I'm either stage 2b or 3a. I see many many women on these boards with similar diagnoses as me and then I see where all if a sudden they have mets and are stage for a year or 2 later?!?!? is that commonly what happens? I'll think it's all over then I will end up with it in my bones? Please explain more to me

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  • mdg
    mdg Member Posts: 3,571
    edited October 2013


    It's hard to say. Everyone responds differently to treatment and not everyone chooses the same treatment (surgery, oral medication). Not everyone goes on to get mets. I wish I could offer more but I was node negative and had an oncotype test done. Do they do oncotype for node positive women? Can anyone advise on that? The oncotype provides a score that tells you the likelihood the cancer will return within the next 10 years. If it can be done in node positive woman, ask your doctor about it.

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  • christina0001
    christina0001 Member Posts: 1,491
    edited November 2013


    My oncologist said there was no need for oncotype testing for me so I never did it. TS0521, this stuff is SO scary but there is lots of reason to hope. My mother is over 10 years cancer-free after being diagnosed at stage 2b. She and I are both IDC ER+ and PR+ (I am also HER2+ but my mother was not). I also have a good friend diagnosed at stage 3something and she was diagnosed probably 4 years ago and she is also doing fabulous, cancer free.


    Some docs are more comfortable discussing prognosis than others. I was diagnosed at stage 2a. My onc never got into it but I had a second opinion at one point with an RO and she said my chances of reoccurrence was probably just under 10% in 10 years. Not as low as I would like but I still feel really positive. And knowing that there is a chance of reoccurrence, well that just motivates me to live well: live healthfully, enjoy life, make time for loved ones. None of us knows what the future will bring, or how long we have to live. I think worrying about that too much just pulls you away from enjoying the life we have.


    Keep in mind too that the most likely people to be posting here, are the ones who are having troubles. I think most women get through treatments, and go back to living a "normal" life (as much as a person can, after going through all of this), and they don't come back here to post.

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  • bren3
    bren3 Member Posts: 38
    edited November 2013


    I like what christina0001 had to say about people that are having problems are sometimes more likely to post. Until you have all the details and facts about your diagnosis you really can't start thinking about prognosis. Yes be aware of the possibilities but don't focus on them. My oncologist won't say cancer-free. He will only say NED, no evidence of disease. So every doctor will give you different opinions on prognosis to. Listen to your doctor, do some research and go with what feels right. A lot of the ladies on here know far more about the science of breast cancer and the tests that need to be done than I do. I tried to find out what I needed to know when I needed to know it, as it pertained to my particular case. Otherwise it was too much overload. hugs.

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  • josgirl
    josgirl Member Posts: 231
    edited November 2013

    A few things - I had four 'opinions' before I found an onc I liked and respected (and vice versa).  Often doctors (in general) need an improvement in bedside manner and really listening to what a patient wants.  There are plenty of women who don't want to know and just want the doctor to tell them what to do (my cousin is like this - just her way of coping I guess) and some like me need information and control.  I would at least get a second opinion before you do anything.  Even though sometimes it seems like everything is the same (treatment wise) there is actually a lot of variation.  And I would recommend a teaching or research hospital if possible.  And check if any of them do tumor boards.  But really get another opinion.  A doctor who does not answer your questions....not a good sign.

    The oncotype test is not really 'made' for us.  I am also node positive and pre-menopausal (34yrs old).  You will probably be recommended for chemo (at least by what you say above).  Therefore an oncotype test isn't needed.  I got a lumpectomy and 9 weeks later started chemo.  I just finished and started radiation yesterday.  You can see my info below.  With all my treatment (and rads) I was given a 20% ish reoccurance rate for 10 years from adjuvant online (only available for doctors - get your doc to punch in your info and various treatment plans to see difference in prognosis).  There is also the predict tool - a link is http://www.predict.nhs.uk/predict.shtml but there are other tools too.  Remember that these tools mostly pull from very old data (at least old in this fast moving bc world) and the % are probably better than expected (ie some of the tools don't even take into account widespread use of Herceptrin).  So use with that big aspect in mind. 

    My one piece of advice that I am so glad I knew about before chemo was fertility preservation.  A lot of docs just want to treat cancer and keep you alive so to speak.  Your fertility isn't important.  But chemo can reduce your ability to have children later.  I have one child but want more and so had my eggs frozen with help from Fertile Hope charity (part of the livestrong foundation).  It is something you have to get done before chemo so if this is something you are interested in - pm me for more info.

    Overall I am very hopeful for my future and while scared s*&^less sometimes, I get on with my day.  Hang in there - read more on these boards (I agree that for some of these topics - it is mostly women that have more issues than the common side effects and such).  But the boards are amazing for gathering information as to what different docs from here and all over the world provide treatment and different things women are recommended.  Just remember everyone is different and every cancer is different. 

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