Stage 2-recurrance percentage % risk?

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Comments

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015


    Congrats, Fe Princess!!!!

    Great news!Smile

  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited June 2015

    Hi Everyone,

    Hey j have to agree Ruthbru, I was already set up to start chemo in my first consult. I just asked questions like what is the oconotyping for and so many other questions. Was booked for my heart scan to see if I could tolerate the chemo. And Mo said yes why don't we send a sample off and wait to get the results in the mean time I was to have the heart scan but my results came back the day before and she said that I didn't need chemo after all. I was a shocked when you are trying to emotionally prepare for everything that's happening so fast, that's for sure. But she said after they do that analysis it changes the numbers and the chemo would not be a benefit so it would not add any reassurance for me. I was still uneasy about not doing the chemo but she explained it till I understood that having lupron injections and letrozole would be very effective treatment as well as the radiation. I'm premenopausal and couldn't take tomoxafin due to previous problem with blood clots. But unlike Italychick find I'm so fatigued that walking has become a

  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited June 2015

    Hi Everyone,

    Hey j have to agree Ruthbru, I was already set up to start chemo in my first consult. I just asked questions like what is the oconotyping for and so many other questions. Was booked for my heart scan to see if I could tolerate the chemo. And Mo said yes why don't we send a sample off and wait to get the results in the mean time I was to have the heart scan but my results came back the day before and she said that I didn't need chemo after all. I was a shocked when you are trying to emotionally prepare for everything that's happening so fast, that's for sure. But she said after they do that analysis it changes the numbers and the chemo would not be a benefit so it would not add any reassurance for me. I was still uneasy about not doing the chemo but she explained it till I understood that having lupron injections and letrozole would be very effective treatment as well as the radiation. I'm premenopausal and couldn't take tomoxafin due to previous problem with blood clots. But unlike Italychick find I'm so fatigued that walking has become a Chore

  • pprice
    pprice Member Posts: 1
    edited June 2015


    Does anyone have hard scar tissue around your incision. My surgery was in December and I got an infection 5 months later in my seroma. Now I have hard scar tissue. Not sure how to get rid of it

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Dear pprice,

    Welcome to our community. We are sorry to hear about the scar tissue but glad that you reached out. Here is a link to information on our site about the Effects of Surgery. There is information within this link about managing scar tissues. You also may want to browse through the forum on Surgery Before, During and After. You may want to start a new topic there with your question. It might yield more timely responses. Keep posting and stay connected.

    The Mods

  • farmladync
    farmladync Member Posts: 20
    edited July 2015

    Thanks for the info .

  • 6doggies
    6doggies Member Posts: 96
    edited July 2015

    Hi ThinkingPositive, my Oncotype came back at 32, so off to the chemo chair I went, completed 5 months of it last month, starting radiation next Monday. I agree with Fe Princess, you should tell your doctor that you want to know if you really do, it shouldn't be up to them to decide for you.

    Fe Princess, congratulations on your run, it's great to get back to the things that we enjoyed doing before our diagnosis. I was so excited to do step and not fall over my numb feet last week! Congratulations on your move as well and good luck, that is so exciting!

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited October 2015

    Hi 6doggies, I just saw this post! I hope the radiation and chemo were not too hard on you. How are your feet now? I have been doing a lot of running and hiking in this beautiful country. I feel that cancer has changed me though in not so positive ways except I get to hear about all of the women on this board, like you.

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

    Nice to see you, Fe Princess. I hope you're healing well and happily settling into your new life in Switzerland.

  • Snowgirl63
    Snowgirl63 Member Posts: 83
    edited October 2015

    hi Fe Princess,

    How is life in Switzerland ? How are the treatments that they give you? I'm so happy for you that you got the opportunity to move to Switzerland. Must be beautiful at this time of the year as if is in British Columbia . Please write about your life in Switzerland !!!

    Teresa

  • Jojo0529
    Jojo0529 Member Posts: 193
    edited January 2016

    my story is almost identical to yours .... Only difference is high ki-67 for me and Meg node... How do you get past the misdiagnosis? It makes me angry that's had cancer just sitting there.

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited March 2016

    Hi Snowgirl63, sorry for my overly tardy reply. I am having a SGAP/FLAP reconstruction on my left breast and removing the implant which my body is rejecting. I am scheduled on April 14th here in Zürich and a private clinic. The medical treatment is much different here. I am always seen by the doctor right away and not the nurse. I am very happy with the treatment so far. I have to have a mammogram before my surgery so I am little nervous about that. My Onco wants me to take tamoxifen too but so far I have not tried it. How are you doing?

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016

    Hi, Fe Princess - nice to see you again. Good luck with your upcoming recon.

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited March 2016

    Hi all, I love reading all the info and experiences on BC.org. I am curious about recurrence rates. After my unilateral mx (which I got so I would not have to have chemo or rad), I saw my oncologist who told me that I am high risk 36% and that I should start chemo right away. I asked to get an Oncodx and it came back 15. I moved overseas in June of 2015. I have only had ultrasounds but I am having a mammogram on Wednesday because I am having my implant removed for Sgap Flap surgery. I am wondering who I should have believed. I have read so much and the consensus seems to be that it is really hard to believe anything. What do you think?

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited March 2016

    if I recall correctly that was my percentage from adjuvant online that my MO did and that was without any chemo or hormonal meds. Did he explain why such a high %. I am grade 3 with a node positive. Makes you wonder whether any of them know What they are talking about I didn't have the oncotype test either because he said I would probably come back high.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2016

    If I hadn't done chemo & 5 years of an antihormonal, my odds were 50/50 of not having a recurrence. With both, they went up to 76% according to adjuvant online. That was pretty shocking to me, as I thought they would be better than that! A healthy life style can bump your odds up higher, and, as statistics come from treatment in the past, I think our odds are better than listed as well.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited March 2016

    How come there are so many differences in percentages when it looks like it's the same stage grade ?? Ruthbru. You are about the same as me only I had a positive node. How can percentages differ that much? Makes me wonder whether my MO just didn't tell me the truth!!!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2016

    Well, my tumor was big (4 cm) AND I am PR negative & only slightly ER positive......so that is probably why the numbers came out about the same.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2016

    My MO first told me that chemo would give me a 10-12% benefit. But I asked for the Oncotype (came back 15) and got a second opinion. Then both oncologists said I would get a 5% benefit from chemo not taking oncotype into account. With oncotype score, I would not benefit from chemo and my recurrence % is 10%. I think the MO the first time was trying to "scare" me into chemo and to get me to seriously consider it. By the second appointment, she agreed with my reasoning when I chose to skip chemo.

    I'm very thankful for oncotype because I think the old staging methods are not catch-alls. Someone who is stage 1 with no nodes might have skipped chemo when they actually needed it. It's a valuable tool and I think when the Rxponder trial comes out more oncologists will agree that a positive node doesn't mean automatic chemo.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited March 2016

    I keep wanting to believe that my MO was trying to scare me. I was hoping that maybe I was on the line for recommendation for chemo and that is why he gave me the two choices of ACT or TC. I sure hope he wouldn't have let me done TC if he didn't think it would work or if that I truly hadneeded Act.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2016

    Thinkingpostive (and everyone else too), once you have made your choices, do NOT second guess them. We each made the best choice that we possibly could with the information and recommendations that were available (which are going to change as time goes on and new research comes in......my treatment options would have been at least somewhat different if I had been diagnosed today instead of nine years ago). Go forward from where you are now.......look ahead, not back!

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited March 2016

    ruthbru,thanks for your response. I try and there are days when I am okay then I go in spurts where I worry. It's been only recently that I have been worrying like this. I am hoping its becsuse I am coming up on my Mammo,ultrasound and MRI.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2016

    Oh yeah, those appointments bring everything back Shocked. Hang in there, your feeling are normal. It will get better the farther out you get (although you never entirely get over the creeped out feeling checkups bring).

  • cp418
    cp418 Member Posts: 7,079
    edited March 2016

    Yes - these yearly appts cause me lots of anxiety waiting to get them over. I almost run out of the door when it is completed.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2016

    My stomach is always full of butterflies when I am going in and I still cry when I get out of there alive and well.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited March 2016

    it took me a few weeks before I was even able to pick up the phone to make the call.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016

    I've only been through one mammogram since dx but get the shakes just thinking about the next one, coming up soon. It wouldn't be so bad just going for the normal, routine mammogram but my breast center has a special area for those coming in for dx mammograms, us, etc., and that includes high risk patients. Sitting in that lounge waiting to know whether everything's clear or not, seeing unsuspecting women taken in hand by the nurse navigators and some women leaving in tears is pretty darn traumatic.

    Due to insurance limitations, I don't have a choice as to where I go. If I did, I would never set foot in that spot again.

  • Lumcg
    Lumcg Member Posts: 3
    edited March 2016

    When I have my first follow up mammo in August, it will be simply a mammo. Does everyone get ultrasounds and MRIs in addition? That would make sense.

  • cp418
    cp418 Member Posts: 7,079
    edited March 2016

    http://www.sonocine.com/

    This additional scan(s) seem to be dependent upon your MO and/or surgeon. Mine have always flat out refused me stating it is not the standard of care and will only order a yearly mammogram. This is a hot button for me. I strongly feel if some 'medical professional' had ordered an additional scan like an US back when I had moderately dense breasts - they would have caught my BC earlier.

    I heard about Sonocine which is not covered by insurance. It is out of pocked $300- $400. They do not have to deal with insurance. It does require a script from your doctor so they can forward the results but no more fighting to get this scan done. MY GP is a wonderful doctor and he always gives me the script. I'd rather have a false positive result than a false negative IMO.

    (Sorry my post was a bit of a vent for me. My situation certainly would not apply to everyone.)


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited March 2016
    I believe that mammograms only are the standard of care. Some MDs will request additional imaging based on patient characteristics. I will have annual MRIs in addition to mammograms due to genetic factors.

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