Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Calling all TNs

1…652653655657658…1190

Comments

  • SherylB
    SherylB Member Posts: 147
    edited February 2013

    Lauren15,

    So very glad you feel well enough to come back online. You have been heavy on my mind because we started this journey pretty much together. Please stay well and come back often.

    Hugs, Sheryl

  • SherylB
    SherylB Member Posts: 147
    edited February 2013

    Lisa,

    Call the surgeon who did the surgery. Once after I had gastric bypass through laproscopic surgery I had an internal stitch work it's way to the surface, the outer edges had been glued. No big deal it worked itself out and healed fine but please do call the surgeons office to make sure. That was approx. 8 months ago so you have a right to be concerned.

    Hugs, Sheryl

  • Lauren15
    Lauren15 Member Posts: 52
    edited February 2013

    Hi Sheryl and NavyMom - I've been thinking about you a lot too and hoping to get back in touch!!!

    Thanks Bak94 for letting me know about the Abraxane.  I too am praying for a complete pathological response.  The MO said I can probably just have a lumpectomy; however, I want to do whatever lowers the recurrence chances and am thinking about a BMX.  What did you do?

  • 5thSib
    5thSib Member Posts: 119
    edited February 2013

    Lauren15 -- I hate you've had such a hard time. I'm glad you are doing better.

    I've just finished my 8th of 16 chemo treatments, so I am so happy to be past the half-way mark. For those of you who have finished chemo and gone on to rads, how long was the period between the two? My MO said probably 4 to 6 weeks. I don't want to wait that long. I want all this over before summer.

  • shadytrake
    shadytrake Member Posts: 69
    edited February 2013

    5thSib, my RO said we will wait 2 weeks after chemo and then start radiation 5 days a week for 5 weeks. I'm just in the first week of round 1 chemo and back in the land of the living today.  Wow-day 3 & 4 were really hard.  Today is a good day though.  The sun is shining. I got to go watch our Tigers win the regular season championship today.  I enjoyed being outside walking to the FedEx Forum for the game.  The sun felt great!

  • Marianne52
    Marianne52 Member Posts: 29
    edited February 2013

    I started Rads 20 days after Chemo. I go 5 days a week for 33 days. Will be done 3/15. I can hardly wait to be finished. Did 5 months of Chemo. Marianne

  • Loafer
    Loafer Member Posts: 56
    edited February 2013

    I had some delays between chemo and rads because I participated in a clinical trial. I had to be randomly selected by a computer, after i met the criteria. Early stage, lumpectomy, no node involvement etc. Did accelerated rads which lasts 15 days rather than 33 days. Love it! I finish on Tuesday with no ill effects!! No fatigue and no breast changes.

  • teresa008
    teresa008 Member Posts: 47
    edited February 2013

    Hi all,

    This is my first post on this forum so please bear with me. I have some questions about the oncotype test. When they first biopsied my tumor it came back as positive for estrogen and progesteron receptors. Now, though, after my left mastectomy, my oncotype test came back on the tumor itself saying in a bold black box directly before each section that the results shown in the report are for an estrogen/progesteron positive tumor and this actual tumor is estrogen/progesteron negative. So, I guess I'm a triple negative but I have some serious worries about the treatment plans that my doctors are prescribing for me! Should I be as concerned as I am about the positive/negative thing? Would it change the score on the test at all? By the way, the score is 47 which is horribly scary all by itself. This is exactly what the black-bordered box says: 'Oncotype DX RT-PCR analysis of ER expression indicates this specimen is ER negative. The specimen must be ER positive by RT-PCR or IHC for the Recurrence Score Clinical Experience to apply.' To me, this says that the results of this report are useless for me. Does anyone have any experience with an oncotype test that was incorrect? And, once they realized that the tumor was actually negative, why didn't they run the test again to get the proper results?? I'm so confused. Don't get me wrong, I've been angry since this test came back and they said that I will need chemo after all. Everything else came back with favorable answers. My chest x-ray was clear. The two nodes that she removed were clear. She said that when she removed the tumor that she got it all with very clear margins and everything looked great. I'm also upset because my BS made the decision before my surgery that my nipple had to go and then she hasn't seen it since. My PS says that it looks great and it's healed wonderfully. Then last week they called and wanted to change the time for my appointment to eight in the morning on March 1st to remove my nipple! I was not even told that I had an appointment on March 1. I went back through the pathology after the surgery and it shows that she took some material on the back side of the nipple and it was all clear and that the tumor was 3cm from the nipple, so I just don't understand. It's healed up so well after the surgery that it looks identical to it's twin. Anyway, after all that now they want to stop everything right here (I only had one more expansion to go!) and start chemo and put off my final surgery for six months or whatever. And, if my oncologist says one more time, "making sure this doesn't come back is more important than pretty boobs" I'm going to throw something at her!! I'm 52 and my healthy breast looks every bit it's age so I feel extremely lop-sided right now. It feels like they want it both ways. On the one hand she keeps telling me that right now, at this point in time, I am cancer-free yet they are not willing to wait for three to four months to get past my surgery before we start the chemo. I'm so sorry for the rant, like I said I'm a little upset this week. Right up until last Monday everything was going along very well. Anyone out there with the same experiences? I would love to hear from someone who understands.

    Thanks so much and if you've read this far I truly appreciate it.

  • melissa119
    melissa119 Member Posts: 127
    edited February 2013

    Teresa008....

    First of all welcome to these wonderful boards with such great ladies who are all here for support, guidance and will offer advice whenever we can. So sorry you have to be here but it is a great place to come with concerns and questions and comfort. It is a tough road but all these women help everyone get thru one day at a time!

    It has been a year this week since I was diagnosed triple negative and though a really tough and long year I got thru now getting ready for my exchange surgery next month. It is a bump in the road that you will see the light at the end of the tunnel soon enough but in the meantime you have to do what is best and going to beat this thing. If you are in fact triple negative which it sounds as if you are then I am afraid there is really no other choice but to have chemo. Because triple negative has no other defense such as hormone therapy to help us we have chemo as our only treatment. Even though you had a mastectomy with clear margins and no positive nodes the triple negative alone warrants chemo to kill any tiny minute little cells floating around that could one day take up somewhere else and grow as cancer cells. I had a double mastectomy with tissue expanders placed with clear margins and no nodes. Completed 4 1/2 months chemo and had expansions during chemo. Now I have my implant surgery scheduled for march 19.

    You need to ask questions of your BS and PS and make sure you are correct in the triple negative diagnosis. If so and chemo is in fact in your future it is doable and you will get thru it. Come here with any other questions you have or rants even. We are all here to listen and give any comfort you need. I am sure there will be others here to also respond to your concerns. Good luck and try to breathe. It will get better once you know your definite path.

    Melissa

  • jenjenl
    jenjenl Member Posts: 409
    edited February 2013

    Teresa008....

    The same exact thing happened to me with that test...I was ER+ at initial diagnosis but after the Onco Type test I was triple negative with a 67% chance of recurrence.  My dr then sent the tumor off again to confirm triple negative.  I  had a UMX, am 3/4 of the way done with chemo and will have rads after chemo.

    Lot's of information in your post and I think you need to have your doctors break it down piece by piece to understand and feel comfortable with the changes.

    Here for you...

  • teresa008
    teresa008 Member Posts: 47
    edited February 2013

    Thank you Melissa. I know that I need to have chemo and I'm slowly but surely wrapping my head around it. I just feel like they kind of dumped everything on me at once. My 'definite path' seems to change every couple of weeks right now and it's very unsettling. A lot has happened in the last couple of months. I had cervical dysplasia years ago and my pap smears were coming back as abnormal for years, but at my last gynecological exam last November my doc told me that she wasn't even going to do a pap this year because my tests had finally come back as normal the last couple of years. I was feeling so good about that! Then she sent me for my yearly mammagram, which had never come back as abnormal, and all this fell on my head! These things happen so fast that you don't feel like you have a chance to breathe at all. Thank you so much for the words of encouragement. I would  say that I am glad to have others to talk to about all this but I would rather be the only person to ever have to go through it all.

    Thanks again so much.

  • teresa008
    teresa008 Member Posts: 47
    edited February 2013

    jenjenl, when the test came back the second time was the recurrence number still 67? That's what I'm really wondering about, if the results were for the wrong diagnosis wouldn't it skew the whole test?

    Thanks so much for answering my post.

  • jenjenl
    jenjenl Member Posts: 409
    edited February 2013

    The test is useless for TN, it is for early-stage, node-negative, estrogen receptor-positive IDC. So the fact that it said 67% for me really means nothing.  At first I was pissed that we wasted time and money but then I realized if we didn't figure out that I was TN I could have been moving forward with the wrong treatment.  To clarify - I didn't not have the onco test done two times.  Once it came back TN, the doctor sent the tumor off for another pathology report....which confirmed TN.  I hope that made sense.  Here for you

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited April 2014

    Teresa,

    The Oncotype DX score is not relevant to the prognosis of TNBC as JenJeni mentioned and this is what my Onc explained as well.  This is because Oncotype DX score is for recurrece predictor of ER+ cancers, it is in no way a determination of any prognostic indicators for TNBC.  The Oncotype DX test is a qualitative test.

    Another test for TNBC is the GenOptix Aqua technology test, which is a quantitative test.

    As several other ladies posted on here, my tumor status changed as well.  Biopsy ER+ 13% (the information on those slides are hand counted by an individual), then the first read on the tumor was ER+ 4%, but GenOptix confirmed TNBC, and then the Oncotype DX test confirmed TNBC.   

    My Oncologist went into great detail about why the ER% changed with each type of test and methodology used to accurately determine the diagnosis.

    If you are TNBC, remember that TNBC responds very well to chemotherapy, and the majority of women diagnosed with TNBC have an excellent prognosis.  

    Also, additional things you can do to prevent recurrence is a very healthy low-fat diet, low sugar consumption and exercise every week.

    We are all here for you! 

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited April 2014

    Teresa,

    One more thing (I just re-read your post).  I totally agree that you should start chemo immediately.  You can still get expansions during the chemo.  I had my expansions during chemo, and my plastic surgeon timed it so that I would not be uncomfortable from the chemo to have them.  He went slow and did my expansions about every 2 weeks.

    Your nipple can be reconstructed, with relative ease according to my plastic surgeon.  He does it right there in his office.  However, I had such excellent results and was so pleased, that I didn't even get my nipple done.  I just look like a mannequin now.  :o)

    Everything you posted sounds so positive - and chemo is very doable these days.  Hang in there, and you'll be able to get your implant surgery finalized as soon as chemo is wrapped up.  

    Wishing you all the best!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited April 2014

    Lisa, 

    There is a 26-year TNBC survivor on here, that I posted a link to her profile a few days ago.  

    I read online that "generally" the recurrence of TNBC "of those who have a recurrence" about half were recurrent between 3 and 12 months, and the other half at the 2-3 year timeframe.  

    I too, have the thoughts.  When I do, I click on this ladies profile and it makes me realize I can make it like she did.

    I mimic what Titan said.  I would think if you were dcis/stage 0, that your risk would be extremely minimal.

    Try not to worry too much - it sounds like you are doing great!

  • teresa008
    teresa008 Member Posts: 47
    edited February 2013

    Thank you so much for the information!! What is bothering my hubby and I is that my oncologist explained none of this to me. She was just very set on talking me into chemo and I wasn't even arguing with her. After reading these boards for the last few days I was really set on knowing the score that the onco came up with and I think I offended her when I asked her right away what the score was. She wanted to talk about the different kinds of chemo and hormone therapies. I just wanted to know the number. She never explained, or even said, that the score and test didn't apply to me because of the negative findings. I think she was hoping that the high number would scare me enough that I would just jump into the chemo, at least that's what it felt like to me. Even after showing us the estrogen negative findings she continued to use the graphs, charts and percentages on the onco to persuade me to do chemo. I didn't notice the bold, black boxes until I got home and had a chance to really read through the report and realized that none of it applied to me. She is not inspiring my confidence right now, that's for sure. I am rethinking the second opinion thing, though. I don't know if I want to take the time and cost to go somewhere else, at this point. However, when I see her towards the end of next week we're going to have to have a talk about honesty. If she wants me to be honest with her it's gonna have to work both ways. Undecided 

    Thank you again so much for your time and answers! I truly do appreciate everyone's time and thoughts. I wish every one of you the best of luck and hope that you all are doing as well as we can do with this intruder amongst us.

  • russell33
    russell33 Member Posts: 24
    edited February 2013

    Hi ladies, I noticed my 2013 February link was deleted some how. i can't remember how to get it back.  Help.  Thanks.  Hope everyone has a good day:)  Anne

  • SherylB
    SherylB Member Posts: 147
    edited February 2013

    teresa008,

    I am so sorry for the confusion. This stuff is hard enough without having to question the results of the pathology. I am TN and actually glad that I had to have chemo. I want everything done to kill any little cells that think they are hiding successfully. You have to get the answers from your MO as they are the one trained to interpret the results. IMO the first thing is that you have to find out the pathology of what you are dealing with before you can decide what the path of treatment is.

    Hang tough, Sheryl

  • teresa008
    teresa008 Member Posts: 47
    edited February 2013

    Hi SherylB,

    Thank you for responding. I am definitely going to go with chemo but I would like to ask that a couple of tests be done to try to narrow down the sub-type of TNBC I do have. I don't want to put my body through a lot of very nasty stuff that it doesn't absolutely need. Working through all this stuff in your head can sure do you in, can't it? I was ready to pack up my dogs and my car and take off for parts unknown last Friday, I was so frustrated. Just like all of us, my world was turned upside down a couple of months ago and sometimes I feel like I'm on a speeding train that I did not agree to board!!

    Thanks so much for your thoughts.

  • Hopex3
    Hopex3 Member Posts: 142
    edited February 2013

    Teresa...I notice you are from Vancouver, WA...So Am I.  Im wondering if we have the same oncloogist.  Sometimes I feel like I have to be the one to find out all the information and then ask questions.  She doesn't seem to be very forthcoming on treatments that I could have been  trying. Everything I learn is from here.  I never had the Oncotype test as I was diagnosed with TN right out of the shoot.  I was so numb at the time that I just went with what they said. But I have to tell you that it worked as the chemo just gobbled it all up. Best of luck to you!

  • teresa008
    teresa008 Member Posts: 47
    edited February 2013

    Hope, I sent you a private message. Smile

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited February 2013

    So much to catch up on since I was last here. This was my lifeline during active treatment and I want to thank Titan for starting this thread and everyone who has been here along the way. I was diagnosed May 26th, 2011 so I am almost 2 years out and I am thrilled. Still scary moments and times waiting for test results can be crazy but life is returning to normal.

    Does anyone know what the recommendation for follow up by the radiation oncologist is?

    Mine left and said to me it was up to me whether I wanted to come back and see someone annually....well duh...I don't know what to think.

    Any thoughts?

    The mention of Suze 35 remined me of all the lovely ladies here that I miss. Suze and I had lunch a few times and my was she a spitfire.

  • Wrenwood47
    Wrenwood47 Member Posts: 68
    edited February 2013

    Painting and Teresa 008-Chk your inbox for PMs. Thanks

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited February 2013

    Hey Ladies,

    Do you all know you can ask a question to the team of doctors at John Hopkins Breast Center? I've done it 3 times, and they are very good and extremely fast on responses.

    Here is the link.  You can select what type of question from the choices, i.e:  Pathology/Treamtent/etc.

    http://www.hopkinsbreastcenter.org/services/ask_expert/

  • OBXK
    OBXK Member Posts: 689
    edited February 2013

    Susan - I think I only followed up once with my RO. I don't really see the need.

    So glad you are almost at the 2 year mark!

    Continue to be well - I miss Suzy too :( Big hugs to you...

  • gillyone
    gillyone Member Posts: 495
    edited February 2013

    painting - i haven't seen the RO since finishing rads! Not sure why I would have seen him.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited February 2013

    @[33525193712:274:Save the ta-tas]

  • sweetpickle
    sweetpickle Member Posts: 185
    edited February 2013

    LOL that is awesome, thanks for posting :-)

  • navymom
    navymom Member Posts: 842
    edited February 2013

    Good one, CS

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.