In your 40's with low Oncotype score, what was your decision?

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited June 2012

    I am quite convinced cancer treatments can affect thyroid.  I was about to be put on drugs for hyperthyroid, which I developed after radiation.  Two years later, it is back to normal.  I'd see if you can give it a little time, you may be pleasantly surprised.  The body does like its equilibrium, when the apple cart gets upset, it can take quite a while to get back on track.  For me, it really was two years. 

  • Annicemd
    Annicemd Member Posts: 341
    edited June 2012

    Radiation to the chest/neck area can cause thyroid dysfunction and thyroid lump formation in the long term. In fact after radiation it's more important to treat an under active thyroid to prevent later lump formation. Thyroid overactivity is less frequently seen in this context and sometimes settles spontaneously as in your case ltothek.

    Sorry to bore everyone with thyroid talk but it's my job and passion 😊

    Cheri I PMd you back.



  • neugirl
    neugirl Member Posts: 57
    edited January 2013

    i know this thread was started a while back but i have a question regarding a comment from a while ago that slak wrote :

    "Here is a related quote regarding TAILORx from Clinical Breast Cancer, Vol 7, No. 4, 347-350, 2006 'Although a trend favoring the addition of chemotherapy becomes evident at an RS [Oncotype score] of approximately 11 when the risk of replapse is analyzed in a linear fashion, the 95% confidence intervals completely overlap in the 11-25 RS range' Also, it says 'An RS of 11 is associated with a risk of local and distant relapse of approximately 10%, a threshold that has been typically used for recommending adjuvant chemotherapy'.  So the jury is still out in the low range, in my opinion."

    can you, slak, or someone else explain furter... especially:

    "[Oncotype score] of approximately 11 when the risk of relapse is analyzed in a linear fashion"

    and "the 95% confidence intervals completely overlap in the 11-25 RS range" 

    i dont get it!?

    i want chemo (score 11, premeno, just over 50 yrs young, grade 2, IDc 1.2 cm, 0 nodes, no LVI) but no one really willing to offer... its so frustrating because 8% seems high with grade 2 (confirmed by 3 labs). grade 3 was said to be a big risk- but wat about grade 2?

    i read dr. loves breast book and she says no matter what your risk of recurrence, chemo cuts recurrence rate by 1/3 and inreases overall survival. i also understand risk argument, but honestly, if you recurr, thats your risk. this is the cancer at hand. ughhhh .... so frustrating

    why cant they get back some of the results from tailorx and use it to tell us what to do...i hate how tese trials take for ever to figure out the results...meanwhile women are recurring...

  • Annicemd
    Annicemd Member Posts: 341
    edited January 2013

    Wish I had an answer for you neugirl but I don't! You see it as it is! I wanted chemo but couldn't get anyone to give it to me either. There are no definite answers. Hay ho still going strong so far !

  • bevin
    bevin Member Posts: 1,902
    edited January 2013

    I was offered chemo with a score of 11. I declined. I was young, 45 at diagnosis, with no nodes and no lvi, to me, it seemed the right way to go.  I have to be honest, I do wonder often if I selected the right option.

  • Annicemd
    Annicemd Member Posts: 341
    edited January 2013

    neugirl, I should add that my diagnosis was about 19 months ago. Once I had studied all the info and stats in detail (I am a medic with an academic background in late treatment effects in cancer survivors!) I realised that chemo would carry a greater risk for me in the long term than tamox/zoladex and zometa, without a significantly different recurrence risk. And as I intend to be around for a long time the decision became a no brainer! I no longer stew over the stats. I remember a conversation i had shortly after diagnosis with my wonderful radiologist who does my mammos and MRIs, I was stressing over everything. She said stop worrying about what might happen and enjoy the time you have. I will never forget the conversation and it changed my mindset. We are all here for such a short time and as we sweat over the small stuff (or middle sized or even big stuff) we miss out on so many things we could be enjoying!



  • Moonpie39
    Moonpie39 Member Posts: 20
    edited January 2013

    My score was 21, and oh, I wished for an 18. Still I decided no chemo, no tamoxifen since I had the double mx and no lymph node involvement. A lot of research and talking to docs, surfing these message boards, etc helped me make my decision.

    I don't really know the bottom line was for me. Certainly a positive node or Onc score over 34 and I would have done chemo. But, in my case, I just did not feel that the benefits outweighed the side efffects. Also, it seems counter-intuitive to flood my body right now with toxins when I still feel weakened by the surgery.

    I take tons of supplements recommended by a UVa pathology researcher to prevent recurrence. Also, my oncologist does think there is some benefit to the WINS trial diet (google it) and taking baby aspirin 5 days per week. He set me up with a dietician to learn more about the diet.

    I have so much more energy now. Back to work--yay! I would have started chemo yesterday, and I have no regrets about skipping the drip!

    You guys take care. So happy for all your low scores--whether you do chemo or not, a low score is GREAT NEWS!!

  • Cherilynn64
    Cherilynn64 Member Posts: 342
    edited January 2013

    I was 47 with a score of 11 and my oncologist said chemo would not have any benefit for me. I also take a lot of supplements that a naturopathic oncologist discussed with me and changed my diet and exercise routine. There is zero cancer in my family, I have to believe it was environmental and I'm doing my damnedest to keep it from coming back! It's still scared though. I am at my 1 year anniversary and I still worry about recurrence daily. But if it does I would probably do chemo the next time, so I don't regret not doing it this time. And I'm praying there is no next time. For all of us!



    Cheri

  • LtotheK
    LtotheK Member Posts: 2,095
    edited January 2013

    I was 39 at diagnosis, don't know if I posted here before, but I always do the battle cry for the young survivors.  I was a 12, with a grade 3 ER+ tumor.  No lymph nodes.  Did chemo.  Studies seem to indicate young survivors have an added benefit from chemotherapy.  They don't know why, it may be chemopause.  I was in chemopause for 2 years and 2 months.  It miraculously came back, and now I am very grateful I did chemo, as higher circulating estrogen is a risk factor.  Additionally, one oncologist indicated that upwards of 20% of Tamox/AI users do not receive the benefit.  So much more research is needed to understand this blasted disease.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited January 2013

    I was 39 at diagnosis, don't know if I posted here before, but I always do the battle cry for the young survivors.  I was a 12, with a grade 3 ER+ tumor.  No lymph nodes.  Did chemo.  Studies seem to indicate young survivors have an added benefit from chemotherapy.  They don't know why, it may be chemopause.  I was in chemopause for 2 years and 2 months.  It miraculously came back, and now I am very grateful I did chemo, as higher circulating estrogen is a risk factor.  Additionally, one oncologist indicated that upwards of 20% of Tamox/AI users do not receive the benefit.  So much more research is needed to understand this blasted disease.

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited January 2013

    I'm going into this week facing the possibility of this situation. My ki-67 was less than 1% and I'm grade 1. My surgeon predicts a low oncotype. I am 48 but had 5 tumors. Oncologist meeting is Thursday. It's scary to have all these unknowns. I wish there was a test to see if any c cells were in the blood.

  • Cherilynn64
    Cherilynn64 Member Posts: 342
    edited January 2013

    Lmimp64, it's such a crap shoot I know. The thing is my ki-67 was 22%, my tumor was grade 3, md predicted I would need chemo. But he knew I had zero genetic history and sure enough my score came back 11 which was higher than I thought it would be. I only had one tumor with both DCIS and IDC. My oncologist is also our same age and I said the proverbial if this were you what would you do? He said absolutely no chemo, not with that score and my estrogen and progesterone at almost 100% positive. He said tamoxifen is the best weapon I have and not using any estrogen replacement in the future. I'm still very premenopausal even though my periods now have seemed to stop. Still have no tamoxifen side effects other that that. So who knows? I sure hope for a good outcome for you!! Keep us posted once you find out your score. Good luck {{{{{{}}}}}

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited January 2013

    Thanks Cherilynn. My oncologist appt was today, but no oncotype in yet. She is also going to confirm receptor status of the 3 tumors that were not biopsied. Path didn't do that either. Then we decide. She predicts a low oncotype score. She would prefer I only had one or two tumors to make the decision easier. They have only oncotyped the largest. Soo, we wait.

  • Cherilynn64
    Cherilynn64 Member Posts: 342
    edited January 2013

    The waiting is THE HARDEST PART!!! I swear!!!

    Cheri

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Hi there,

    I need some help and opinions, please......I went to my oncologist today. She had predicted a low oncotype and just tamoxefin therapy. I'd already picked it up at the pharmacy! Well, it was not as low as she hoped. It was 18. She has given me three choices.

    1) take tamoxefin only and have an 11% reoccurrence rate to stage 4

    2) do 4 cycles of TC chemo to reduce the reoccurrence rate to 7%

    3) get monthly shots in my stomach to suppress my ovaries and put me in menopause, begin me on tamox and switch me to an AI. She said this would also reduce my reoccurrence rate to 7%.



    A big thing is that I had 5 tumors, 3 around 2 cm. My oncologist says things would be simpler if I had only had one. My age, 48, is also a factor.



    I have no idea what to do. Does anyone have advise or insight? She would like me to begin next week.



    Thanks in advance. It's been an unexpected day.

  • BilateralBeauties
    BilateralBeauties Member Posts: 149
    edited February 2013

    Welcome to the odds game. I was 43 at diagnosis, but my Oncotype was 42, so I was shoved down the tube of lumpectomy, chemo, rads. Even with all that treatment, my reoccurance numbers is about 15%. My tumors were exceptionally small. Mr. 42 was 7mm. Having had chemo, one of my biggest complaints is life long neuropathy. It is bad in the winter. For 4 percentage points, I think I would skip chemo. That said, my other mantra is cancer is sneaky and we have to swing with the big bat. The real key is making the decision and never looking back. Because my number is still so high, I have eliminated meat and as much animal estrogen from my diet as I can and am trying to improve my odds with my lifestyle. Chemo is doable. I didn't miss work except treatment day. Had CT x4. Jump on tamoxifen and be loyal even if it isn't perfect. Also, did they Oncotype all of your tumors? Do they know for sure if they were all the same? If there's any doubt there, I'd say bring the chemo baby. Hugs and good luck.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    Lmim... Perhaps a second opinion or request a tumor board make a recommendation. Good luck.

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Thank you for your advice. I think I will get a second opinion. It doesn't seem as if the ovarian suppression is common and I want to know why both options two and three aren't combined. Do they kill the same type of cells? Different? It's so confusing. They only oncotyped one tumor, the rest were biopsied and are similar.



    Thank you so much.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    Currently, there is an ongoing trial called SOFT that is looking at ovarian suppression and endocrine therapy in lieu of chemo and endocrine therapy. On the contrary, ovarian suppression is very popular in Europe and there's been many of us here on this side of the pond who have received OS. Check out the NCCN guidelines 2012 professionals version ( not patients) and read pages 95-100. It discusses ovarian suppression studies and endocrine therapy.





    Glad you are getting a second opinion. Request that the tumor board review your case as well. Good luck.

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Thanks voraciousreader. I have pulled it up and am reading it.

  • Cherilynn64
    Cherilynn64 Member Posts: 342
    edited February 2013

    Lmimp since we are the same age and simliar but not identical situations, here's my thoughts.

    My oncologist back in Phoenix also thought about using Lupron on me (that's the injectable for 2 years) to supress estrogen production - it's a chemical hysterectomy so to speak. However he normally uses it only on women UNDER 40. But he did consider it for me because like you I'm still pre-menopausal. WAY pre-men. My estrogen levels are still that of a 30 year old it's ridiculous. He looked at my numbers and was like wow, you're nowhere near menopause possibly for another decade. So he said Lupron was something to consider. But he said tamoxifen would still be my best bet. He offered chemo only if I wanted it - mine was 11 and my one tumor was 1.5cm which he considered large. But he said 11 was very low and he won't give chemo normally to any woman whose score is under 20. He said the data shows tamoxifen being the most beneficial if your tumor was very highly positive which mine was (98%, and 99% on progesterone).

    What was your percentage of ER and PR? That might help make the decision for you.

    Cheri

  • ReneeinOH
    ReneeinOH Member Posts: 511
    edited February 2013

    Curious to know Cherilynn64 and lmimp64--why supress the ovaries, vs. remove?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    Renee....The result of supression of the ovaries vs. removal are the same.  The reason why there is a choice is because going through menopause sometimes can have rough side effects and with removal there is no going back.  Some women, including myself chose ovarian suppression with Lupron rather than surgical removal.  Some women choose both...They may start with chemical suppression and then do surgical removal.  I was close to menopausal age, so I just did two years of chemical suppression and I am now "officially" menopausal.

    Likewise, there are certain risks when you do ovarian suppression, besides the side effects.  Estrogen, while bad for ER+ tumors, also is heart protective.  So if you have a family risk of heart disease, you might need to balance your risks vs. your benefits of doing ovarian suppression.  Likewise, you are at increased risk of osteoporosis if you shut off the estrogen, so you need to monitor your bone density as well.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    Renee....if you haven't already checked out AnniceMD's thread.... you might like to take a peek.  It's called "Stage 1 Grade 1 and Premenopausal."  There's quite a few sisters there with similar situations to yours and mine.

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Voraciousreader. Thanks for your perspective. The side effects of ovary suppression and removal worry me. My doctor is suggesting zoladex not Lupron. Lupron seems to have fewer side effects, so I'm not sure why. Adding it to my list of questions!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2013

    Lmimp....Not sure if there are differences between zoladex and lupron.  Furthermore, my physician favored monthly injections rather than 3 month injections.

    Lastly, I think you need to first decide whether or not chemo is right for you before moving on to the idea of ovarian suppression.  Again, those pages in the NCCN guidelines give you the best "evidence" out there, for now.  Preliminary results of the SOFT trial are due in September and will probably be announced at the 2013 San Antonio Breast Cancer Symposium.  So, that doesn't help you now, nor did it help me when I was deciding back in 2010.

    Good luck.

  • ReneeinOH
    ReneeinOH Member Posts: 511
    edited February 2013

    Thanks for the explanation and the thread suggestion voraciousreader--will definitely check out!

  • Sam44
    Sam44 Member Posts: 6
    edited February 2013

    I am 44 and was diagnosed on December 7th.  I had a lupectomy and sentinal node biopsy with no spread.  The tumour was 1.1cm and stage II.  I am hormone positive, HER negative.  No family history but my mother took DES when pregnant with me which may be a small risk factor.  I am waiting for the Oncotype test results, hopefully back today (it is not funded by health insurance in Australia).  My Oncologist has said definitely radiation and Tamoxifen and my decision re chemo (4 x TC).  I am really struggling with this decision.  I am a single mother with primary custody of 7 and 12 year old girls.  I want to do everything I can to be around for them longer than 10 years but I am scared of the leukemia side effect.  I was doing OK until last night when the whole thing hit like a Mack truck and I haven't slept all night, I'm shaking like a leaf and can't seem to stop crying.  Once I have a plan, I will be OK I think.  I just need a plan!

  • Lmimp64
    Lmimp64 Member Posts: 219
    edited February 2013

    Hi Sam. Sorry about this. We sound like we are about to make similar decisions. Let us know what happens. My son is 10. :)

  • BilateralBeauties
    BilateralBeauties Member Posts: 149
    edited February 2013

    My son was 10 at diagnosis. CT chemo is doable. I worked every day except treatment days. Good luck with your decisions. If chemo gives you peace of mind, get it

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