the neoadjuvant staging dilemma

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  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    I do have faith.. And I appreciate ur prayers.. I will take everything I can get... I am waiting almost 4 weeks till surgery.. March 28 th ..Wanted after two weeks but surgeon said I have to wait four... I am actually going to get a lumpectomy first even though I am definitely going for mastectomy.. With the lumpectomy.. I will get my path report and see about the nodes thing... If they r still positve I will get radiation and that might affect reconstruction decisions.. That's why we r doing the two separate procedures...just want to get first surgery done and see what's going on in there .

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  • new_direction
    new_direction Member Posts: 449
    edited January 2013

    I'm sorry if my slightly panicking attitude yesterday have contributed to anxiety or negativity... I'm sorry I posted all the links about prognostic data which deals with rates and not individual people... It may have just been for no good.

    Shari 4 weeks is not that long - I know psychologically it may be but at 2 weeks your immune system is at it's lowest. I had surgery 3 weeks after. I know it makes a difference to oneself but I don't think one or two weeks means anything.
    Try to stay calm, treat yourself to something you enjoy, be good to yourself.

    Sending you all caring thoughts and hope for the best possible outcomes (that is being cured - living to be 84 - yes it's possible, we must believe in that more than fear what hasn't happened).

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  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    New direction,

    Thanks for that message... It has definitely helped me ..U made me feel a lot better today reading this...I was having anxiety.. Partly bc I know what u said prognostically is somewhat true, and i had seen n read that beforehand, but I have to believe that it does not account for every individual.. That being said I also haven't had the surgery and don't know what my path report will show and that unknown is terrifying. I also know that a month is not so bad but to tell u the truth I find myself constantly feeling this stupid tumor.. And everyday it feels different and all logic says its shrinking but some days it feels bigger than others and its making me nuts. Haha

    I will try and relax...and I appreciate ur hope for best possible outcome and I of course hope the same for u.. Hell,I will take 90 .. My grams is 94 and long to be like her.. And I want to never see this cancer again.

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  • new_direction
    new_direction Member Posts: 449
    edited April 2013

    It's impossible to stay calm and logical when your emotions are challenged so much. The thought of not seing him grow up is unbearable. The thought of him not being able to remember me is horrible.

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  • mumito
    mumito Member Posts: 4,562
    edited February 2013

    I am nervous about my MO checkup comming up this Feb.Hopefully the Tamox is still doing its job.

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  • Shari0707
    Shari0707 Member Posts: 448
    edited February 2013

    New direction . I am going to try and pm u today.. Right now I am at chemo....waiting to see doc but I will write when I get a chance. Thinking about u and ur baby.

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  • new_direction
    new_direction Member Posts: 449
    edited February 2013

    hope this chemo round will be fine and most importantly kill off all cancer cells!

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  • Shari0707
    Shari0707 Member Posts: 448
    edited February 2013

    Thanks new direction.. Gonna pm u later today

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  • new_direction
    new_direction Member Posts: 449
    edited March 2013

    For someone who might be in the same situation as I was.

    I have just found an interesting article which discusses postmastectomy radiation. It concludes "Clinical stage II (T1-2N0-1) patients, aged >40 years, estrogen receptor-positive subtype, with pathologic complete response or 0-3 positive nodes without lymphovascular invasion or extracapsular extension, were identified as having ≤10% risk of LRF without radiation".

    http://www.redjournal.org/article/S0360-3016(12)00141-1/fulltext

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  • Shari0707
    Shari0707 Member Posts: 448
    edited March 2013

    What about under 40? Haha but still don't know about response or nodes.. Surgery a week from today

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  • new_direction
    new_direction Member Posts: 449
    edited March 2013

    yeah... just makes it easier to accept radiation if you have to. I was kind of "happy" to see it because I felt like there was "only" one thing that spoke in favor of radiation (lymph nodes or not) in my case.

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  • Shari0707
    Shari0707 Member Posts: 448
    edited March 2013

    I guess so.. That we should have it bc we so young? Where do they radiate? Axillary areas and where else?

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  • new_direction
    new_direction Member Posts: 449
    edited March 2013

    at the scar and presumed tumor area, the axillary nodes (the ones that are left behind from surgery) and around your collarbone. If your tumor is rightsided also around the breast bone.

    can't wait till im done.... its really not bad physically. I just hate going to the hospital every day. I want to be free of cancer. It feels like im cancer free - but not when I have to go there each day. Must celebrate when im done,....

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  • Shari0707
    Shari0707 Member Posts: 448
    edited March 2013

    U definitely must!! And u r cancer free! Mind is on left side

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  • new_direction
    new_direction Member Posts: 449
    edited March 2013

    Smileshari thanks for the encouragement. I know im so close it just feels like an endless battle at the moment.

    In few days you will be cancer-free as well(it was the 28th you had surgery right?)

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  • Shari0707
    Shari0707 Member Posts: 448
    edited March 2013

    The 28th it is! A week from today! Still as scared and worried as before.. About surgery and path report.. Want it to b good need it to b good... We r so young!

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  • new_direction
    new_direction Member Posts: 449
    edited March 2013

    I understand you completely.

    I think though that what we choose to do after all this is done has a lot to say. I dont know exactly how much but I think in some cases it may be crucial to what outcome we get ultimately. Im just trying to say: dont feel powerless. Theres a lot you can do yourself. Have faith in those things. For example that email - just the first line (no sugar etc) - I think if you start by doing just that you may have improved your prognosis as much as radiation does or more!

    Another thing is positive thinking. Im not good at it yet. I like to search for information a little too much. I need to learn to just let some things be... Im working on that. Studies really show that your thoughts and feelings influence your physical state... There is so much hope shari... WE ARE GOING TO BEAT THIS AND NOT ONLY THAT - we are going to get an even better life after that. I really believe so.

    Sometimes i think: well maybe chemo or something else has cut some time of off my life line in the end. But getting cancer has also made me change so many things to the positive. I like to believe i end up getting even older than i would have... :)

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  • Shari0707
    Shari0707 Member Posts: 448
    edited March 2013

    Those changes in diet and lifestyle ate coming bit not completely there yet.. I still like my dessert every once in a while haha but yes those changes do make a difference ..- bunch of things that all those stupid studies we read don't even take into considerations when telling us our prognosis..I not good at the postive thinking just yet either but I so believe it is important!

    This is a bump in the road and one that will lead us to a better happier life.. That is what my parents tell me.. I am just trying to learn and believe it for myself.

    Did u start tamoxifen yet or after rads? Let me know how it is

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  • Momine
    Momine Member Posts: 7,859
    edited March 2013

    New, thanks for posting. Since I had 7 nodes, extracapsular extension of 2 and did not have complete pathological response, it clearly was a good idea for me to get rads.

    I hear you on the daily trip to the hospital being a drag. I knitted my way through it. I knitted myself a nice hat, and also a jacket for a baby. At that point I was so exhausted from all the treatment that even reading was too  taxing a lot of the time. It was also a double bummer because my hospital is quite far from where I live, and my rads happened to coincide with prime strike season, so it was often a challenge to get there, since both cabs and trains went on strike on and off.

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  • new_direction
    new_direction Member Posts: 449
    edited March 2013

    shari - i started tamoxifen a few weeks after surgery. Some places I think they will start after radiation.
    Besides on/off joint pain which is not at all every day - maybe once every week or second week i havent felt any change. The hot flashes are the same as before I started.

    Momine - I agree, sounds very much like you did the right thing.
    Guess i shouldnt complaint. I have 10 minutes to the hospital. But I hate knitting. I once promised my step dad to knit a sweater. I always think everything sounds so easy in theory. Once i got started i was bored so much i had to quit. They still laugh at me 10 years later. Maybe it says more about their "humour" :D

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  • Momine
    Momine Member Posts: 7,859
    edited March 2013

    New, it is definitely their humor that is all wrong ;) I like knitting, and the Greeks (rads staff) were most amazed by my creations. I also had an iPad to play sudoku on. Whatever gets you through. Also, if you do get burns, ask for gel plasters after. Those things were almost magical.

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  • new_direction
    new_direction Member Posts: 449
    edited March 2013

    thanks for the advice. After I got off the ketogenic diet which must have lacked some nutrients ive just gotten more and more energized. I CRAVED oranges for weeks and oh ive missed those. I love eating carrots and beets again. I think that diet has some potential but ive started to lean more towards the nutrient-packed diet instead.
    I like wearing knit work as well. Love Greece - may I ask which part of Greece you live in? island or countryside? Ive spent a month in Larisa. LOVED IT.

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  • Momine
    Momine Member Posts: 7,859
    edited March 2013

    Sounds like the new diet direction is a good idea. We live in Athens, downtown, and I really like it.

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  • aisha1
    aisha1 Member Posts: 15
    edited March 2013

    hi, nancyD u said that u had 6 weeks of radiation, i only had 3 weeks and i,m stage 3 thanks aisha

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  • aisha1
    aisha1 Member Posts: 15
    edited March 2013

    hi, pure why did they give u zometa?

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