Bilateral Breast Cancer

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coraleliz
coraleliz Member Posts: 1,523
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I looked for a previous thread on bilateral breast cancer but couldn't find one. Perhaps I haven't quite figured this wesite out yet. So here goes....... Both my tumors are ER+PR+ HER2-. Both are grade 1, my left side is stage II & my right is stage I. My MO is figuring out my treatment per my stage II. He was reluctant to run the oncotype on my tumors because he says there is little evidence on how to interpret this in bilateral disease. Would love to hear what others have been told about bilateral disease. My reoccurence %'s don't seem high. Other than surgery on both sides, are there any other implications that you've been told or found on your own?

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  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011

    Coraleliz - we are almost identical.  Our doctors seem to have different opinions.  I didn't have chemo because my oncotype test score was so low.  She based the decision on that test.  It sounds like your doctor doesn't think oncotype testing is interpreted clearly for bilateral.  Hmmm...that is just so interesting.  But I have no idea what is what.  I just followed my Oncs directions.  Maybe someone else will post and give us more information.  Do you have to do chemo?

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2011

    Faithroad, My MO is leaving the chemo up to me to decide. He says he has his bias's but that the decision is mine. He said some other things & what I got out of it is he recommends it but not strongly. I called again this week & he has agreed to run my oncotype(s). Will have to wait & see..............

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  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011

    coraleliz
    Hi, are you comfortable with making the decision about chemo?  My doctor felt very strongly about it. I was actually nervouse that I would not be doing it.  I think I'll google oncotype and bilateral BC. At least It can't hurt to have the oncotype tests.  Then your doctor can see what he thinks of them.  It might help make a decision.  I would be very very interested in how your doctor interprets the tests for bilateral BC.  If you wouldn't mind, would you PM me about it when you get your results? 

    I had to wait about five weeks to get my oncotype tests back.  It felt like a really long time. I hope you have very low scores...I wish you the very best.  Hope you are healing up well.

    Faithroad

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  • sarana
    sarana Member Posts: 19
    edited June 2011

    Hi ladies

    I'm also interested in this.  I have bilateral and multifocal, but went against surgeon's advice and had lumpectomies rather than mastectomies when I found out my nodes were clear.  I have also just had the tumour with the worst prognosis (2.2cm, high ER and PR) tested and its come back low.  I don't know what the exact % is yet.  I'm in the UK and Oncotype is rarely done here and I had to request and pay for it myself.  I'm wondering how much my doctors will understand the implications if yours is saying there is a lack of evidence.  I wasn't offered chemo and was glad at the time, but the more I read, especially from this board, many people with my signs were getting chemo and I wanted to be sure.  Would love to hear how you progress.  Also - I've just noticed that you both have slight node involvement, I was under the impression that oncotype was relevant for node-negative but currently being tested for node involvement. 

    Hope to hear from you.

    S

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  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011

    Sarana,
    Hello from across the pond!  Sorry you are here with us, but welcome to the thread!  My node involvement was minimal.  The one that lit up had only the smallest earliest single cell beginnings of cancer. They said it almost doesn't count.  But to me it counts, because it was still there.  I wish I understood more about the oncotype testing.  Hoping to learn more in the future. 
    Wishing you all the best in your treatment and recovery.  Stay in touch!
    (( hugs ))

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  • sarana
    sarana Member Posts: 19
    edited June 2011

    Thanks for the welcome Faithroad.  I think one of the problems is there's not a big enough group of us BL's to give us a good indication of what to expect.  We';re a bit out on a limb really.

    I heard from my onc tonight that %age is 16 so I'll have to go look up the implications of that.  High side of low I feel.  But then LOW is still LOW. 

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  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011

    sarana,

    My onc used the number 11 as a breaking point.  If numbers came in above that, she was going to have me do chemo.  If they came in below, no chemo.  I was glad I wasn't on the line like 10 or 12.  My numbers were 4 and 5.  It's such a hard decision. Yes, the high side of low.  Praying you will have wisdom, direction, and peace concerning your decision.  Let's keep in touch about what we learn.
    Take care, friend.

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2011

    Sarana, I really like hearing from far away. Sometimes healthcare evolves differently elsewhere. The highest % I've heard is 4%.  here is a link stating it's much lower. http://journals.cambridge.org/action/displayFulltext?type=1&fid=306745&jid=BCO&volumeId=8&issueId=04&aid=306743

    For the most part, from what I've read is that, is they take your worst tumor & your prognosis is based on that. My smaller tumor had positive nodes, so that is why I'm stage 2. Both tumors of mine were ER/PR+,Her2-. My MO originallly didn't want to run the oncodx test because of bilateral disease. He eventually did & said it had to be applied cautiously to my situation because the largest study pertaining to oncotype/positive nodes is only 367women.

    Faith, My oncotype was only run on my positive node side & came back 4. The decision that I feel "most right" about is no chemo. It's a tough decision even with a score that low. I'll keep you posted.

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  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011
    coraleliz  - intersting info.  I don't understand the % number.  Is that different that the reaccurance score?  I'll check out the link you posted.

    My onco scores were 4 and 5.  My onc said those were the lowest she has ever seen.  I'm glad you had a 4 as well. Praying you will have discernment and peace for your decisions.  The BMX decision was easy, the decisions after that have been much harder to make.  God Bless you.  Thank you for sharing the information you have found.
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  • sarana
    sarana Member Posts: 19
    edited June 2011

    Hi again Coralelzz and Faithroads

    I'm jealous, wish I was 4/5.  Oncologist emailed me the report which I haven't gone through rigorously yet, but score was 16 and recurrence was 10%.  Still pretty high sounding to me, but I will look at it with my researcher eye more closely tomorrow.  From my understanding anything under a score of 18 is low  but you may have been advised differently.  I don't think I'll be knocking on the chemo clinic door just yet.

     Coraleliz - although I'm in the UK I did live in Saudi for 16 years and the medical systems there were very American.  I feel we're quite a bit behind here in the UK and although I very much appreciate the NHS, I would like the reassurance that they're ahead of the pack, which I really don't.  Hence having the Oncotype done myself as oncologists here are aware of it but can't recommend it to patients as it has to be paid for privately.   My husband actually had to go pick up the sample and deliver it to private oncologist, as the NHS didn't want to have any responsibility for the test.

     I can understand your oncologist's hesitation as I'm sure we're such a 'special' group there's not a lot of high level evidence there yet to base decisions on, but I feel its a case that some gut instinct has to be employed in the lack of evidence.  Low must be better than high, and having a low result makes me feel better about going down the conservative route - not ready to lose the boobs just yet.

    Great to talk to you both.

    S

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  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011

    sarana - thanks for the information and for letting us know how you are doing. Things sound so different from country to country.  I wish you had a lower score too!!!   I hope you are recovering well from the lumpectomies. We are all so different; you need to do what you feel is right for you. I pray that you will have discernment and peace about your decision.  It has been great talking with you. And may we all have long healthy lives!

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  • DFC1994
    DFC1994 Member Posts: 163
    edited June 2011

    I had bilateral. DCIS grade 2 in right breast, ILC 2 tumors in left Stage 1,grade 1.also AHD in left.I had bilateral mastectomies and no chemo or rads,no tamoxifen due to blood clot.I am over 18 months out.

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  • Faithroad
    Faithroad Member Posts: 432
    edited June 2011

    DFC - Hello!  Welcome to the thread!  There are just three of us here so far. A small group.

    I'm glad you did not have to do chemo or rads.  Because I had a BMX, I didn't have to do rads either. The surgeon actually didn't know I had bilateral BC, until my BMX, and there it was hiding in the center of the "non-cancer" breast...it didn't show up on any mamos.  So if I had opted for a single MX, I would have been in deep doo doo, by the time I had my next mamo.  I'm just thanking God!  My oncotype score came back quite low, so I didn't have to do chemo either.  But I do have to do Tamoxifen.  I had a hysterectomy for precautionary purposes so now I can take something other than Tamox if neccessary. 

    It's nice to meet you.  Congratulations on being 18 months out!  Hope you are doing well, are you feeling ok?  I think it takes a while to get back into the rhythm of lifes routines.  I hope to be there soon!!

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