Lumpectomy Lounge....let's talk!

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  • Melclarity
    Melclarity Member Posts: 388
    edited April 2016

    Heathet - sounds like your Mum feels she has struggled all her life, now being carer of your Dad, feels as if she feels life is about everyone else. Almost like she creates drama and not in a good way, but nonetheless it does get attention, seems she doesnt know how to communicate or even be raw or verbalize how she feels inside, so it comes out in this negative and sometimes aggressive way. I have no doubt she loves you, but its almost like she doesnt know how to be there for others, because she doesnt know how to deal with herself. I think she's wanting to be understood, and frustration builds and explodes because she just doesnt know how to communicate it. Just a thought...you however, do not need nor have the capacity to deal with her or anyone else. Your focus needs to be on YOU, and this is exactly what this journey is about, its about putting you first above everyone else and not in a horrible way...its honoring you and saying 'Im important' I will give you my time and energy and love but when I give it to myself first... hugs xo

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    I just like to say I "had" breast cancer. If anyone asks how I am doing I tell them I am just waiting on reconstruction to be finished with all of this! I don't like to talk about monitoring or doctor appointments etc unless the person "gets it". My DS's GF had childhood cancer. She understands the dark places our minds can go. I can talk to her easily.

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  • Melclarity
    Melclarity Member Posts: 388
    edited April 2016

    Molly - I totally agree with you!!! like you just want surgery done this year and to be done with it...x

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  • iammags
    iammags Member Posts: 216
    edited April 2016

    Peggy I'm in the gang now with 4 new tattoos! I'll start on the 25th.

    I also had a lot of dcis. And other benign lumps as well as IDC.


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  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    IamMags, Welcome! Some gang we have here!

    HUGS!

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  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited April 2016

    Mel...we were all asking about you...so glad life is good! You read well and as if you are making your new normal pretty damn good AND normal. SO glad for you. Positive attitudes and good vibes must prevail..every day in our lives is A DAY. Take good care and stay in touch!

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  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited April 2016

    Met with RO today. Says my scars should be minimal, go for my simulation Monday and will have between 20 to 28 rad treatments. Happy to be getting this done!!!!!!! Hope you all had a good day!! Don't quite know what to expect, but have read a lot and I'm following spring rad group also, so that should help!

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2016

    i also like to say I HAD breast cancer and now I dont. I had 2 LXs, which got the mass out and 4 rounds of chemo which killed any errant cells left behind. I am not in remission, I no longer have cancer.

    Now that I am no longer wearing my wig or hats, I can tell that people are curious about my 1" long hair. I just smile and wave. I'm not about to get into a long conversation about breast cancer with people I don't know.

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  • ChicagoReader
    ChicagoReader Member Posts: 110
    edited April 2016

    Heathet, you've gotten some good advice here. At this particular time in your life, I would encourage you to take care of yourself first and do only as much as you're comfortable doing to maintain your relationship with your mother. Don't let the drama drain your energy now. You need it to heal. If communicating by letter is the only way you can ensure that you don't get sucked into the drama, then you may have to limit contact to letters for now. As you grow stronger, you can take on more.

    Sloan, your advice about letting go of grievances is so good that I should cute and paste it into a Word document so that I can look at it again whenever I feel challenged by a loved one's conduct.

    Iammags, I had to smile at the thought of gang tattoos. With DCIS, I may not have "real" cancer, but I've got the tattoos to show I'm in the gang!

    HappyHammer, I travel a lot for work and would love to make it down your way for ChiSandy's performance, but sadly my office has other plans for me then. I hope one day I can make it to one of her local gigs.



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  • Melclarity
    Melclarity Member Posts: 388
    edited April 2016

    Woohoo Poodles!!!!! EXACTLY! After 4yrs 2 biopsies, 2 lx's, lymph node removal, 10 rounds of rads, 12 rounds of chemo...I HAD Cancer...it has gone!!! and will seal its fate with a mx.

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  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    Melclarity - You rock. You've been to hell and back twice and survived and are LIVING!! What an awesome role model you are!

    HUGS!

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Loving grouches, read the winter rads thread for advice and see how they handled things. I found reading the summer thread really helped me before I joined the fall group. Melclarity, you have a great attitude! So do you, Poodles! I really love this group. You all inspire me.

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  • Melclarity
    Melclarity Member Posts: 388
    edited April 2016

    Peggy - We all have our individual experiences, not one less than another...but we are all bound by the common ground of it all. Nobody GETS this...But we all do! Of course we have our hard days, even me, but Im loving the moment in which Im living and I think thats the whole point. This journey as for many, was the hardest of my life and unfortunately my MO said last week, that I am traumatized with the Chemo above all of the treatment Ive had in that time. Getting to a better place and leaving it where it belongs now in the past. Anything in life is doable...even when you honestly believe you cannot...so I say embrace all those horrible, bad moments together with the good...but you will rise above all of it and come out victorious at the end..we all do. Courage, strength and belief and just put one foot in front of the other...as you pave your new improved road to peace.

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  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    MelClarity, Don't belittle your strong spirit. You made it through chemo which sure wasn't easy for you. Yes, we all have different battles to fight to get rid of our BC. I still think you are the model of the tenacious woman getting through treatment and then living life!

    HUGS!

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  • Heathet
    Heathet Member Posts: 257
    edited April 2016

    thank you everyone for your words of encouragement and wisdom on talking with my mom. It was a hard phone to make but I called her last night and kept it short and sweet - well as sweet as it can be when you are explaining to someone you have cancer. I feel much better in my heart today knowing I set up some healthy boundaries and stayed positive. I feel truly blessed having all the women here to support me on this journey.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Good job, Heathet!

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  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited April 2016

    i'm glad you feel a bit better about things. I too have a lot of issues with my mother, I find it hard to talk about them because I know there are so many people who would love to still have their mothers and I feel guilty for complaining about mine…but reality is what it is and she causes me a lot more stress thanshe provides support. She wants us to be very close, but there are things about her personality but keep me from being able to do so. I would never choose her as my friend, and although I love her as my mother, I don't wish for our relationship to be different than it is. I think when I got diagnosed she expected that would somehow change, but it hasn't. In fact it's been the opposite, I want to keep her at arms length even more so…which I know hurts her and I feel bad about that, but I need to do what's best for me

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  • Kokomo26
    Kokomo26 Member Posts: 64
    edited August 2016

    Hello Everyone!

    So, long story here. Back in Feb I saw my MO who said no need for chemo based on small IDC 0.38cm (DCIS 0.6 not included ) ...so rads and Letrozole after. I asked about my concern about the P- factor and maybe I was luminal B, asked about the Oncotype test but said we would not do chemo on small tumor like mine and that I had a good prognosis. So off I went and did my rads. Last week I read through "Oncotype-Stage 1A-what was yours" and saw many with my type and small tumors who had high scores. @Moondust and @Melclarity and @ChiSandy among others discussed many points on this type so got very scared and met with my MO this past Monday and surprise.....the test was ordered and I will know on April 25th. how good or bad my recurrence is based on their results. So my worrying has started all over again. I started my Letrozole yesterday (Sandoz manufactured in Quebec by company that owns Femara).

    @Melclarity ..I read your experience and have much admiration for the way you are handling your journey...I wish to be as half as strong as you. I fear mine will recur at my scar also. P.S, My DH and I were in Melbourne for a few days while on our visit to Australia in 2014 and attended the Melbourne Cup which was amazing...even won a little on the winning horse). Loved all the outfits and head attire.

    @Grazy..sounds like you were give a choice to have the test or not right from the get go? Wishing for a low score for you also.

    @ChiSandy....I lost my Mum also in April three years ago to BC. So this has been extra hard to deal with after going through her treatment with her. I think we will all miss our Mums forever!!

    My family says to stop researching and get off the computer. But I am drawn to it like a magnet and have learn so much from this site and all you wonderful ladies sharing your experiences and tips and everything in between.

    Thank you and blessings to all. Have a great weekend!


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  • Grazy
    Grazy Member Posts: 373
    edited April 2016

    Hi Dorothy26 - I went into my MO consultation prepared to request the Oncotype test and before I could ask, she suggested it.

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  • Moondust
    Moondust Member Posts: 510
    edited April 2016

    Hi Dorothy! Welcome, and I'm glad you are getting an Oncotype score. I hope it is low enough for you to avoid chemo, but if not then you can join me in the next leg of this adventure. I have heard that we should not be on hormonal therapy during chemo, in order for the cancer to be as "awake" as possible, so be sure to discuss that with your MO. I think many MO's are not aware of the importance of the PR- factor. My MO didn't seem concerned about it, but I think newer data is showing that there is a real concern about higher risk of recurrence. You may want to get a second opinion if your MO does not have satisfactory answers to your questions. How big was your tumor?

    This is a great place to hang out. I know you are nervous right now and it is hard to wait the two weeks. My best advice is to be prepared for an intermediate score and to map out how you would cope with 3 months of chemo (and extra recovery months) if you need it. I'm actually glad I've got my radiation behind me. My skin under my breast is red/black but I think it will be better by chemo time. I meet with my MO on the 18th to find out my regimen. I'm a researcher too - best to ignore what your family is telling you, IMO

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  • chipsy83
    chipsy83 Member Posts: 19
    edited April 2016

    Molly- Harry Potter is still an addiction of mine. I bet that was an amazing experience. I do not quite understand the acronyms people use. UMX, BMX, MX? Could you help me with these please. And thank you for sharing your story.

    Sloan - Thank you. It just feels right to be angry. I always wanted fake boobs to look like those women in magazines... (I learned a long time ago I never will) but I guess that old saying becareful what you wish for because you might just get it comes to mind.

    Moondust- I talked to the 3 women I trust the most. First my wife, 2nd my PCP, and third I presented everything to my Mom. My mom is a BC survivor and immediately told me to just "take them off".

    Its easier to deal with even in this short time. And I say that but insurance hasn't even said yes to it yet. I am on a 15 day wait from them to reach a decision. (I'm the one with the benign Phyllodes up for a bilateral mastectomy). I have small emotions from time to time. Mostly that I nursed both of my babies. The thought of losing the very things that fed my babies makes me tear up a little. But I am glad I got that experience first, and I will live to see them reproduce! 😀.

    This post goes so fast and covers so much of everyone's lives. So here is what I've caught. Congrats to those of you that are redoing their kitchens, congrats to anyone moving, and congrats to all of you that "had" cancer. I promise I will learn quickly who each of you are. Thank you for making me a part of your family!

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  • Kokomo26
    Kokomo26 Member Posts: 64
    edited June 2016

    Grazy..Hi...I just dont understand why one would and one wouldnt. I know we have guidelines here in Canada dictated by size and benefit/risk of chemo. Was your invasive part about 1cm? Any SLI?

    Moondust..Hi..So your MO left the choice up to you regarding having the chemo? My tumour was made up of DCIS 6mm and IDC 3.8mm. But I was told they only consider the IDC part when considering chemo. Did your MO mention any of that with you? Thanks for the advise on the HT. I will call on Monday to confirm.

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    chipsy, Harry Potter was awesome. Mx is mastectomy, Umx is unilateral mastectomy, BMX is bilateral mastectomy. TX is treatment, sx is surgery, bx is biopsy. Hope that helps.

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  • Grazy
    Grazy Member Posts: 373
    edited April 2016

    Hi again Dorothy - I'm afraid I can't say why your MO wouldn't request an Oncotype test - it may have been the size? You asked what size mine was - it was 1.2 cm IDC Grade 2, with a small area of DCIS adjacent, and my pathology report showed the presence of Lymphovascular Invasion (LVI) which I don't think is particularly good, although doctors seem to gloss over it during appointments. My ER was 98% and PR 60%, HER2-, which is all good news. I'm not sure what you mean by SLI.... The Oncotype test is now automatically covered by the Province of Ontario so it's a pretty easy requisition nowadays. My MO did mention that recently she'd had a patient who she assumed would score low and ended up in the high category, and one where the exact opposite happened so I got the feeling she just likes to test now to be on the safe side. Who knows. It doesn't hurt to ask for the test and I can't imagine an oncologist denying it unless she was absolutely certain of her recommendation based on your pathology report.

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  • Kokomo26
    Kokomo26 Member Posts: 64
    edited June 2016

    Hi Grazy....maybe the size..but like you said about your MO two cases, one never knows I think for certain so I dont know how mine could. I have been trying to find trials/studies on only ER+/PR- HER- but no luck so far. Your P+ is what most are I believe. I meant to say LVI, sorry. Thanks for replying.

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  • Grazy
    Grazy Member Posts: 373
    edited April 2016

    You're welcome, Dorothy - good luck!

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  • blamoms
    blamoms Member Posts: 113
    edited April 2016

    hi Dorothy and Grazy I see your u both from Canada where are you in Canada

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  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Dorothy, welcome. You really need to insist on Oncotype Dx. I have read studies that indicates that PR negative can be more aggressive.

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  • Grazy
    Grazy Member Posts: 373
    edited April 2016

    Hi blamoms, if you're in Toronto, I'm an hour west down the 401 :)

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  • Kokomo26
    Kokomo26 Member Posts: 64
    edited June 2016

    Hi Molly50, that is what I have been reading too but like Moondust said the MO do not take it seriously...do not get it. Wish they did a study on my type and 5 year follow up.

    Hi blamoms, I'm about an hour up the 404. Looking forward to warmer weather so we can enjoy some walks outside in the sunshine!

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