Stage 2-recurrance percentage % risk?

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  • bgum
    bgum Member Posts: 13
    edited April 2015

    Ugh. The recurrence thing is so scary. My rate is 35%. It's almost the same as chemo resistant, even though the chemo shrank my 2 nodes down to 1cm (the second one was even less. . Started out at almost 2cms!!). And my tumor was basically gone. Only 10% cellularity left. My radiation onc told me my recurrence rate was about 35% (and that's what the online tools said as well). But, my med onc said more like 20%. I hate worrying myself silly. But, I'm only 33 years old and have two kids under 4.

  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited April 2015

    Bgum...How did they come up with that percentage for you?? It seems as though most that have the same stats have different percentages. How is that ?

  • msphil
    msphil Member Posts: 1,536
    edited April 2015

    i dont remember mine, but i had 3nodes positive, ontamoxifen for5yrs and in my 21 st yr cancer free(Survivor Praise GOD). msphil(idc,stage2, 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen) found lump in shower while preparing Our wedding.

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    Msphil- 21 years cancer-free??? That's great news!  For you AND the rest of us scared folks. ;)

  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2015

    The oncotype generated a nice report that laid out all the numbers--for me, without chemo, my potential distant recurrence rate would have been 17-18%. with chemo, it was 9%--- essentially a 50% reduction. I did the chemo.... even though I had ILC. did 5 years of hormonals.... feeling great---- expect to be around for a long long time.....

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

    Momand2kids - Congratulations on your recovery and continued health. That's very heartening to read.

    Re: the Oncotype - I wish there were a similar program for radiation - I'd really like to know the benefit percentages for my situation rather than the very generic numbers that are tossed around...

  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2015

    Hopeful

    I think the research on radiation is pretty definitive in terms of its effectiveness-- I don't remember all the stats but I remember my radiologist saying that they had over 50 years of data on it.... it would be nice to know if we really needed these things. I am not sure I really "needed" chemo--but the numbers suggested it---- I think I was a tad overtreated, but I did it willingly..... best of luck on lumpectomy. I found the surgery was by far the easiest part-- followed by radiation which was also not hard....


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

    Hi, momand2kids - thanks for your well wishes and insights. I'm glad to hear that you did pretty well with both your lx and the radiation. Do you have any persistent changes to your breast tissue following the radiation?

    My quarrel with the rad. stats is that they are SO generic - we don't know who really benefits, since they lump ALL bcs patients together. I'd like to know the risk reduction based on my particular tumor type, size, and response to neoadjuvant endocrine therapy. To date, I don't think ROs have bothered to look very closely at their patient sub-types.

  • light1
    light1 Member Posts: 40
    edited May 2015

    My recurrence rate with 5yrs of tamoxifen is 12% my oncotype was 18, k-67 11% took chemo radiation and was on tamoxifen for 4 months stop a month ago for blur vision, my Onc want to put me on zoladex and Amorasin, I am very confuse have an appointment to see my eye doctor before making any decisions....so worry about recurrence

  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2015

    Hopeful

    I think the only thing that happened was that my treated breast feels "different" --there is less sensation in it-- but it looks the same--- it is just not as sensitive to the touch--usually they do a whole breast radiation for a bit-- that is probably what did it...and it is almost not noticeable to me now.... mostly I have just forgotten the whole thing!!! it will happen- you are just in the middle of it now.


  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Hello SpecialK, what is the K67 score and how is it calculated? I saw my MO last week and she gave me a 36% recurrence rate. You can see my dx below. She told me that the Oncotype dx is not done on stage 2 breast cancer, but I asked her to order it anyway. After some serious research, I see that the onco test is exactly for my type of breast cancer. I am shocked that she told me the opposite. I was devastated after seeing her. I am unclear as to why she would state the opposite of the guidelines stated in the NCCN 2105 guidelines page BINV-6.

  • placid44
    placid44 Member Posts: 497
    edited May 2015

    Ki67 is the proliferation rate of the tumor, ie how quickly the cells are dividing and tumor is growing. It is a percentage. Less than 10% is low/slow-growing, 10-20% is intermediate, higher than 20% is fast-growing/aggressive. Mine was calculated from the pathology of the core needle biopsy sample. Faster growing is not good in that it is quicker to spread, but the upside is that they are generally more responsive to chemo since chemo targets fast-dividing cells...unless the tumor is chemo-resistant

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    Princess - actually I am bewildered too. My stats are the same as yours. I had Oncotype done and it was 19, so my recurrence is about 12%...somewhere around there. My Ki67 was 29%. And STILL no chemo. You are a perfect candidate for Oncotype, based on your cancer with negative nodes.

  • NancyHB
    NancyHB Member Posts: 1,512
    edited May 2015

    Princess - it sounds like you have more questions than answers. As others have pointed out you're the perfect candidate for Oncotype testing. I was Stage 1 and Grade 2, node negative but with ITCs in 4, and my MO didn't test for Ki-67 at the time (I insisted after we got Oncotype back). With a score of 42 and Ki-67 of 50% I had a 28% chance of recurrence without chemo, with chemo and Tamoxifen it dropped to 18%. We were all very surprised by the results, but they really helped inform my treatment decisions, which ended up being vastly different than originally planned.

    There are other Stage II sisters with stats similar to your who have forgone chemo after receiving a low Oncotyoe score. Keep asking the questions you want/need answers for. Good luck!

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Thank you everyone for your replies. I will report back on my Onco score. My MO wrote in her notes:

    -in this younger patient who is otherwise healthy, I have recommended not sending an oncotype, and instead proceeding with chemotherapy and anti-estrogen therapy. Oncotype is more well-established for stage 1 br ca, and in this younger patient, again, who is healthy, with a stage 2 br ca, I think adjuvant chemotherapy is warranted.

    I'm glad I followed my gut feeling an started in on some research.


  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    Princess -

    Two thing's jumped out at me: Are you positive for the Brac gene? How old are you? Yes, these thing's can play into your MO's decision.

    Mods -

    Are we any closer to getting age added to the signature block?

     


     

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited May 2015

    After lumpectomy, chemo, radiation, and on Tamoxifen for the foreseeable future, my MO told me that my chances of recurrance are "in the single digits". My Oncotype was 23, they did it when I had the initial biopsy. Oncotype in the intermediate range combined with positive node pushed me into chemo land. Chemo has its own problems, Adriamycin can cause heart damage and leukemia. Doctors are wise to be cautious with it. I was 48 at diagnosis

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Hello Jilly59, I am 51, and negative for the Brac gene.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2015

    Fe princess - Ki67% is a measurement of a protein secreted by cell growth and is an indicator of aggressiveness or proliferation - it has a high/low test result in that anything over 20% is high, below is low.  It may roughly correspond to the mitotic rate of your grade - if you have your path report you should see three categories if they broke them out - nuclear pleomorphism, mitotic rate, and tubule (sometimes called gland) formation.  Each of these gets a score from 1-3 and the scores are added together for a total score of 3-5, or grade 1, 6-7, or grade 2, or 8-9, grade 3.  You could conceivably have a grade 1 tumor with a mitotic rate of 3, so unless your score is broken out on your path report you won't know.  Some labs do Ki67, some don't.  As far as Oncotype Dx goes, it is perfectly acceptable for stage II patients, not sure why your MO didn't order it.  Had you indicated an unwillingness to have chemo?  If so, there would not be much point.  If you ordered it now it might take up to three weeks for results, so that would put you at roughly over 60 days from surgery - still close enough to start chemo, but optimally you would need to start right as you got the results back to be inside the window for effectiveness - you are moving out of the country soon, correct?  How would this be affected?  I put your stats into the cancermath model and got a pretty low risk situation - an 11% mortality rate with no chemo but taking Tamoxifen, these models do not really predict recurrence.  With PREDICT, no chemo but taking Tamoxifen, 97% are alive at 5 years, 91% at 10 years, so slightly better odds than the cancermath model, but very similar.  

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    I was told by my MO, prior to receiving my Oncotype score, my 5 year survival is 89.1%. He said it goes down after that, which totally confuses me.

    Doing chemo added 3.5% benefit, so the benefit was not worth the risk.

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    Thank you very much SpecialK and jilly59. I did not think that I would have to do chemo because my surgeon said with a 2.54cm tumor, no nodes, no predisposition and grade 2. When the MO told me that she was concerned that I would be waiting until I moved to Switzerland, I was shocked. The more info I uncover, the more assured I am that I will not have to do the chemo but maybe just the anti-hormonal. Thanks for all your replies. I know there is never any guarantee with cancer though.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited May 2015

    jilly59 survival rate is different than recurrance rate. I never want to go through this again, so I am doing all I can to prevent it from coming back. I was hoping to avoid chemo, but the combo of intermediate oncotype score and the positive node pushed me over the edge.

  • Fe_Princess
    Fe_Princess Member Posts: 245
    edited May 2015

    SpecialK, I am Tubule-3, Nuclear-2 and Mitosis-1. I guess that makes me grade 2?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2015

    Fe - yes, it does because those scores together add up to 6, however your mitotic rate is the lowest score you have - mitotic rate is how fast the cells are dividing, at least in the sample looked at. It makes it more likely that your Ki67 would be on the low side.

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    SJacobs - I hope you are doing better.

    It's always been a mystery to me - how someone with a 1 cm tumor has positive nodes and others with a 6 cm has negative nodes. (IDC)

    Is it location? Mine was at 6 o'clock, 3 mm from the skin.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited May 2015

    jilly59, I am actually doing very well. Last chemo was on Dec 29 and last radiation on March 17. My hair and nails are growing back. I am hoping that my BC was just a small bump in the road of life. I do have a close friend who went throught this 7 years ago, stopped taking tamoxifen after 5 years, and a year later was diagnosed with stage 4 BC, so I worry about the future. My doc is recommending tamoxifen for 10 years.

    My tumor was very close to my armpit, I am actually very lucky that the mammogram found it, not all techs work so hard to get that much area covered. I am guessing that the tumor's proximity to the sentinel node allowed it to spread so quickly.

  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited May 2015

    I am glad i had the Oncotype DX, I got a low score, so no chemo, even with a positive nice, 1-3 nodes they were doing the Oncotype test back in 2011.

  • Stenokim
    Stenokim Member Posts: 172
    edited May 2015

    I had an oncotype of 14, ki67 of 3%, so my onc said no chemo. Benefit was only 1%. However, my surgeon says I should've had chemo since I was 47 at diagnosis and had one positive node. My tumor was 2.9 cm. I had the lump for 28 years, docs always said it was cyst, but then it seemed to be getting bigger and dimpling my breast. Blew off mammo for a year, then wham, so I think I had BC for a couple yrs before dx. I had so many differing opinions that made for difficult choices. Hoping I made the right ones. Ki

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited May 2015

    At the hospital where I was treated, they have a tumor board. All the docs look at every case and they come to an agreement about treatment. I'm glad that my docs were on the same page ad far as treatment

  • farmerjo
    farmerjo Member Posts: 518
    edited May 2015

    A score of 9! Great news for you British!

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