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  • Kaara
    Kaara Member Posts: 3,647
    edited November 2011

    I'm 71, was dx with IDC stage 1 grade 1, 5mm tumor.  BS said lumpectomy & rads.  Didn't mention chemo but won't have receptors until app't on Monday.  I've read that at my age chemo is off the table as an option, but don't think I would take it anyway, at least not the conventional kind.

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  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited November 2011

    I would tell your PS to call your MO if she wants to discuss your treatment plan (let them discuss it) and tell her you no longer wish to discuss it. 

    I had a positive node and had the Oncotype score 9 = no chemo. My MO was fully supportive and my PS never asked / discussed my treatment plan other than being pleased I didn't need rads.I had a BLM too.

    As for tamoxifen, I have nothing to complain about. I worried too about taking it initially, but as no chemo or rads I felt this is the way to go and so does my MO.

    Take a friend to your next PS appointment, if you need support. You have gone through enough without extra stress.

    Big hugs,

    Ali 

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  • B123
    B123 Member Posts: 730
    edited November 2011

    Sorry.. I mean Joan811..  :))

    Also. you are right BellaJean, I feel the same way.  No one wants to take you once they know you have been somewhere else.  Its an awful feeling, because not everyone clicks well and I dont with mine.  Its enough to be going through what we are going through, but to have to deal with that on top of it, is just plain wrong.  What is one to do?

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  • jwilco
    jwilco Member Posts: 486
    edited November 2011

    Joan811 - Hi.  Thanks for asking.  I ended up waiting to see how my next appt went with the original MO before deciding on seeing someone else.  I had decided that if my Oncotype score was high or if he was still sort of wish-washy about treatment options then I would gather more opinions.  So when I went last week I felt a lot better with the discussion I had with the original MO.  He did have my Oncotype results.  I was, if I remember correctly, an 11 or 12.  I need to ask for a copy since I didn't at the time.  He sounded very ok with my decision for no chemo.  He said that it would only reduce my risk by a very small percentage, 1%.  So I started Tamoxifen the next day.  So far so good.  

    I did call the coordinating nurse that's been involved with all my doctors and spoke to her about second opinions or switching MO doctors.  She said that I could and her suggestion was to make it like a second opinion and then if I ended up liking one over the other then I could usually just switch.  

    I have my next appt with this MO in a few months.  If I begin to feel uncomfortable or even uneasy with how things are going then I'll see about switching. But there was such a difference between the first appt and the last that I'm wondering if part of it was just me freaking out a little bit too.    

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  • BellaJean
    BellaJean Member Posts: 65
    edited November 2011

    Hi all,

    Well finally got my oncotpye score and I rang the bell at 48. No one, and I do mean no one, expected that. Also, I am, am not, triple negative. No one really seems to be able to tell me. My oncotype came back of triple neg. but then the oncotype people said that the path results are the "gold standard" on ER status. My MO has not said anything other than hormone therapy won't be of much help to me...and that she does not understand how they could even run the oncotype test as they are showing me ER-. But of course, we all know they say that the hospital path is what counts. so it goes...

    I've decided on chemo as with a score like that I don't want to take any chances. Having a second opinion with the hope I can make a switch to this MO. It is funny, but I happened to read some of the posts from some of you about the struggles you are having with your MO, and beleive it or not I felt better. It is good to know that I am not the only one with MO issues. Sorry we are all having such challenges with our health care professionals, but at least we know it is a professional issue and not our problem. Small but some comfort for this woman. Wishing you all a good pre-Thanksgiving day.  

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  • B123
    B123 Member Posts: 730
    edited November 2011

    Bella Jean, Im so sorry your score came back so high.  I dont understand?? You are ER+ or -?  Im glad that you are on a recovery path now. I wish you nothing but well wishes, and a smooth recovery.   

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  • Joan811
    Joan811 Member Posts: 2,672
    edited November 2011

    jwilco, glad you were able to make a decision.  I think that may help you feel easier with your MO; however, our MOs will be with us for at least 5 years, and it would be nice if we feel comfortable.
    I agree with the 2nd opinion approach.  I did that, and I have an appointment with the 2nd guy who I like better in January.  If I decide to switch to him, it will be easy.  Good luck....

    Bellajean, ouch, am sorry to hear such a high score for you.  It doesn't really seem to add up.
    I was at first diagnosed as ER+ and PR-  but the post surgical path report came back strongly E and PR +.   I had researched the ER+ with PR- and there is a definitely a statistical difference in recurrence and treatment effectiveness; but it didn't seem that significant.  With ER or PR negative, or HER positive, it seems that chemo is going to give you the best advantage.
    Maybe you can get a detailed look at the onco type criteria if you are up to decoding it.
    I can only offer hugs and prayers for you as you face your treatment plan - it is not an easy path; however, many ladies have done very well through chemo. You will have lots of support here.
    I hope you find peace with having made a plan.
    Best wishes,

    Joan

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  • Joan811
    Joan811 Member Posts: 2,672
    edited November 2011

    B123, About phytoplankton and cancer:
     I heard back from my daughter's friend who is a Physician's Assistant who has a wellness practice.  She said: 
    "I suspect she means blue green algae.. And yes it's highly antioxidant and
    alkali zing both of which are great for preventing cancer. They change the
    milieu so that cancer can't thrive. If used by itself and no other dietary or
    lifestyle changes it's like putting a drop of bleach into a swimming pool and
    expecting it to clean the pool. Not effective."
    So, I guess it's like everything else - small improvements in multiple areas can add up to positive impact.  I guess you have heard that anti-oxidants in significantly large amounts may be counter productive during chemo and radiation since those products may fortify the cells targeted by treatments.
    Hope things are going well!

    Joan

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  • VictoriaB
    VictoriaB Member Posts: 171
    edited November 2011

    Hi Ladies,

    I am reporting back--Last time I wrote I had to make the surgery decision--well I had a BMX with tissue recon and am recovering for about 3 weeks now. Still trying to decide on chemo. My onc score was low, under 10, but I have an LVI. The original Onco test did not take into account the LVI, so we resubmitted it and are awaiting the results. My question is: do you know if oncs treat LVI like a positive node? Bcause I am getting mixed feedback and I really  need to make a decision soon. I am 99% ER+ so I will have to do tamox anyway. So I'm wondering if I should do chemo as an insurance policy against the LVI and then tamox. Or will delaying tamox for 6 months be a bad thing with my ER status? Thanks! VickyB

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  • B123
    B123 Member Posts: 730
    edited December 2011

    Joan811, you are terrific!  Thank you so much for looking into that for me and getting back to me.  I so much appreciate it!  Just what I thought, but I guess its worth the try.  I have changed so much in my life and will be seeing a nutritionist tomorrow.  Maybe, it will work.. never know unless you try and if it has the ability to prevent cancer, even by a small percentage, its worth it!  I will have to find the right one now, these sites are not always trust worthy.  thanks again!  Be well..

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  • Joan811
    Joan811 Member Posts: 2,672
    edited December 2011

    Vicky, I do not know enough about LVI; did you seek a 2nd opinion?  Sometimes that confirms what your instincts are telling you.  You have a lot to think about....you will know when your choice is the right one.
     B123, good luck with your healthy approach to wellness.
    Hugs and best wishes to all,

    Joan

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