Stage 2-recurrance percentage % risk?

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  • Stenokim
    Stenokim Member Posts: 172
    edited May 2015

    thanks kayb. It weighed on me for a while, but after all my research, I'm comfortable with my decision.

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited May 2015

    I was over the moon, especially as my BS said I couldn't have the test and didn't do it at surgery because of the positive node. Luckily my Onc didn't see 1 node as an issue

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  • Stenokim
    Stenokim Member Posts: 172
    edited May 2015

    little bit, so glad for you. My bs did the same exact thing, then onc ordered it, which of course we had to wait longer

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited May 2015

    Stenokim, the waiting for results is the worst part, I waited about one month as the BS didn't tell me he didn't put in the Oncotype test

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Hi Everyone,

    I wondering if anyone here is doing anything to boost their immune system. As the radiation and hormonal therapy can decrease it. I am wondering what I should be doing. I take turkey tail mushroom capsules that are supposed to stimulate production of helper T cells. But wondering what else I should be doing. In light of the Cambridge university you tube video about T cells attacking rogue cancer cells I'm thinking we all prob all need as much help with that as well keeping the hormones away if it was a hormone positive tumor. My oconotype was 18 so borderline of low and intermediate risk. MO said after she entered all the details into the data bank it said less than 4 % chance of reoccurrence. But we all know that we don't want to be in the 4% . So it's interesting to me to learn what others do as part of their changing health regime. I'm still really fearful and having trouble moving on with my life.

    Thanks you guys for being here!

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Hi again everyone this is an article I found on something called turkey tail that I was told to take to boost my immune system... Let me know what you think. The American cancer society is using it in clinical trial in conjugation with chemotherapy at present in Washington. So hopefully it will become regulated then we know for sure what we are purchasing. Mine is from a company in Canada called Bell.

    http://health.howstuffworks.com/wellness/natural-m...

    This article is about truly tail mushroom supplements.


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  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    Thanks, Snowgirl! I will check it out on Amazon now.

    My stats are similar to yours. I was told 9% recurrence with chemo, 12% without - my Oncotype is 19. I wonder about the disparity. My cancer was 2.5 cm.

    Truly tail or turkey tail?

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  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Hi, I am very strict about my nutrition. I take a lot of supplements, but I did before my diagnosis too. I have added mushroom extract to my regimen. There is a company in Portland called Fungi Perfecti. I saw a naturopath who specializes in cancer (He's believes that east meets west). I take these everyday.

    http://www.fungi.com/product-detail/product/host-d... I also take 1000mg vitamin C, B-complex, calcium, E, Magnisium, Zinc, Women's multi and B-12. I also start my day with warm lemon water and it has done wonders for my digestion. I only eat organic and allow myself refined sugar twice a month otherwise I use raw, organic honey. So may call me overboard, but I will not give cancer any leeway in my body.


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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2015

    My MO didn't order the test...he said that my results would have come back with higher scores so I would be doing chemo anyway. Wonder if I should have pushed for it. Never really found out what the actual chance of recurrence is...

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  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    ThinkingPos, I would have him order the test anyways. It's covered and you deserve all the information you can get!

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  • PatRN10
    PatRN10 Member Posts: 332
    edited May 2015


    I think with grade 3 and a node chemo would be recommended so if the test came back low wouldn't that just make things more complicated. ?

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2015

    PatRN10....definately... and I didn't need anything more difficult. It was a difficult choice having to choose the chemo regimen I was going to do... maybe it would have helped me with my decision to do ACT vs TC. I did the TC due to heart problems caused by ACT. So maybe it wouldn't have mattered.

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Hi Jilly, I'm not sure why the difference, the MO said the chemo would work on my tumor so there must be more info about the tumor I don't know about and I forgot to ask for my report

    And sorry for the typo but yea turkey tail mushroom!

    Maybe she just said that's what my says are because she didn't want to dishearten me I think it's my nursing background that makes them not say too much to me. They say my tumor was caught just after cell division so probably half the size the day before I found it. When they explained how the cells multiply that totally made sense. The surgeon said he could tell by looking at it that is was very slow growing tumor as well. I don't know how they come up with the U.S. I think Rey all use the same scoring guidelines both in U.S. and in Canada but my Mo is from the U.S. originally and she came her to help build the treatment program. Apparently from everyone I talk to she is the best and most aggressive at treatment but kindest person I wish everyone had the opportunity to be in her care.

    I'm trying to just think about my immune system now as being the thing in my toolbox that needs to be optimum along side the letrozole.oh also I was premenopausal and get the Lupron injections and had offer to get ovaries removed so that's happening too.

    I think not letting our immune system get low is key with these meds because no matter what if your immune system shuts down then it open the door for any disease to enter. So my research for myself is heading in that direction these days.

    Teresa

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Did you have radiation Jilly? Cause that made a huge difference when they told me stats.

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Hey thinking positive girl.

    You can still have it done! I asked and my MO was impressed that on my first appointment I already new what to ask for cause they had decided chemo regime and she looked at my pathology report and said I qualified bases on node negative an hormone +. And her2- so they sent it away.. She called me at home at night as soon as the report came through to say no chemo for me. I think she was just as surprised as me. And then she said it totally changes the stats too so that gives you a boost. And who knows what the score will mean for your future it may just make the difference if you or I have a reoccurance and what out treatment looks like. Totally ask beg whatever to find ourselves.

    Teresa

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Pat,

    That's what I don't know. Cause I didn't ask but I think it changes a lot if the score is low because then all of a sudden it isn't the grade 3. But I think the nodes indicate Chemo anyway. And I would have also had chemo in a heartbeat if I had a positive node my surgeon did the node check with a portable sensor that picks up the radioactive tracer that attaches to cancer cells in the sentinel node injection. So he told me right after surgery no traces of cancer where in my nodes and then the report for the serial node biopsy was negative he also did an ultra sound while I was open to look for anything hidden cause I'm lumpy to begin with.

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Hi Fe Princess,

    Your mushroom immune booster is pricey...so I will stick with mine plus our regulations in Canada are a little different and I have more trust in the Canadian product. It grows naturally in my area so j could go pick it and dry it out if I wanted to but dosing would be a problem I think. The turkey tail is actually a fungi and called coriolus versicolour. And thus names turkey tail cause it looks like the fan of the tail of a turkey. They use billions of this in Japan and have good rebate offers when you buy so many get one free.

    The bottle of 90 capsules comes Ina box with a booklet inside to give tons of info. It was recommended to me by a friend and I'm sticking to.i take two capsules twice a day

    Thank you for putting your regime up mine is the same as yours except I have the turkey tail instead. That's so cool others doing same thing!

    Also I eat hormone free antibiotic free chicken or occasional beef. No milk butter or cheese even though in Canada it isn't allowed in our milk products but I'm allergic to the protein in cows milk anyway and I drink organic soya milk. Studies say it good for the hormone +ca...so I'm not worried about it.

    Any other diet ideas welcomed cause I need to lose weight now!

    Teresa

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  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    SnowGirl - I'm kinda thinking age may play a role. If I had the sames stats at 36, I think they would have pushed chemo.

    Interesting to find there are ongoing clinical trials for turkey tail mushroom - I have a bottle in my Amazon cart. I wonder if I have the climate here on the Maryland border to grow this stuff.Happy

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  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Hi Snowgirl, they are pricey. It would be great to have them in my backyard! I am moving to Switzerland next month so I will be changing my regimen I am sure.

    On another note, my MO called yesterday to tell me that my Oncotype was in the low risk range. She didn't leave the actual number but it's got to be under 18 so that is some good news.

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    Fe princess and Jilly ,

    First off thank for responding to my post...this is awesome encouragement.

    I don't think they push chemo if all the stats say no because it actually won't work my MO said The things I read tend to be that the younger you are when you get diagnosed then the increased likelihood it is aggressive and yea then chemo is indicated. I just wonder why both of you didn't have radiation tx?

    Lucky you princess moving to Switzerland . Medical system so different in Europe you are bound to get the cutting edge treatments. Cool thing is you get to let us know all about it;) and yeah!!!im so happy the oconotyping was low for you as well. That is awesome news ... I just wish it could be that way for everyone.

    Jilly I don't know much about the climate in Maryland but if you can get it on amazon that's great! Then you don't have to worry about dosing. I reeead my pamphlets and apparently I should be taking 6 capsules a day since treatment. And most studies say just keep taking it when you are on med that can depress the immune system like the AI's so I'm going to look at it as required as long as I am on the letrozole.

    Have a great weekend!

    Teresa

    Ps and so you know I was 51 when diagnosed .. Turned 52 the last day I had radiation treatment ... Wanted to celebrate but certainly did not feel well enough to. Saving that for when the fatigue lifts

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  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Hello everyone, my MO called today and gave me my Oncotype score. I am at 15 which gives me a 9% recurrence rate, so for now No Chemo!

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited May 2015

    Great news Fe Princess

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  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited May 2015

    🎉Yeah Fe Princess, that's awesome news! 🎉


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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2015

    That's great to hear, Fe Princess! I'm very happy for you. (I'm sure that makes your upcoming move a lot less complicated, too, doesn't it?)


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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited May 2015

    Great news... FePrincess.

    I wish I knew mine..for some reason I think that the oncologist didn't want to send it out because he thought it was going to be really high..and didn't want me to know just how high. He said it would probably come back high. Has anyone gotten a really high oncotype score??

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  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Hey ThinkingPositive, who is your doctor to decide what you want to hear or know? I'm sorry but I would tell him you want it if you really want to know. It's just information anyway. You can't control the outcome but that's for you to decide.

    Hopeful, it does make it easier. With only 27 days to go, it makes it a lot less stressful. I am leaving a good life so I will miss all my people and surroundings, but not having to face certain chemo right away lets me breath. I will have to be reevaluated when I get there too.

    My heart goes out to all of you who are facing chemo. This is such a painful, scary and rough experience to have to have. I do feel like I can face anything now though and have tucked it into my experience file for future hardships.

    I did go on my first run last night in 2 1/2 months and feel like I just might make it back to myself.

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  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    I can't believe your onc told you oncotype doesn't apply to stage two. That is crazy!! So glad your score is low. Mine was 15 too!!

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited May 2015

    My MO told me that he didn't order an Onco test, even though I am stage II due to the proximity of my cancer to my chest wall.  He knew immediately that chemo was in order from the size and placement of my cancer.  He tells me that my cancer filled my whole breast and somehow didn't spread to my nodes, so he gives me a 5-8% chance of recurrence. 


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  • ruthbru
    ruthbru Member Posts: 57,235
    edited May 2015

    If you don't need chemo, that is great. But if you do; it is not as bad as you might imagine AND it really, truly can save your life. I wasn't thrilled about it at the time; but looking back, having done chemo (as recommended by my oncologist) gives me great peace of mind.

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  • Italychick
    Italychick Member Posts: 2,343
    edited May 2015

    I just did round 5 of Taxotere/Carboplatin/Herceptin today and then did a 16 mile bike ride after. My best advice is stay as active as you can. I feel so much better after doing my bike ride today, even if it was slow. not much in the way of side effects, mainly nasty mouth and some intestinal upset for a few days. I attribute my lack of side effects to staying active. Even walking helps a ton. Chemo is doable, just take care of yourself if you have to do it

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