TRIPLE POSITIVE GROUP
Comments
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Thanks, all. Glad to know my musings weren't stupid! My surgeon is out of the country this week but I am going to go into the mammogram on Tuesday with pointed questions for the technician and radiologist before we proceed. The surgeon is highly experienced and well-regarded so I'm going on the assumption right now that she knows what she's recommended and it will be OK, but I would like answers to satisfy myself that this is all being taken into account.
My diagnosis path was: palpable but small lump to focused ultrasound of lump to needle biopsy to excision, so mammogram has not been part of the process yet. I also have an MRI referral for next week and it does make sense to me that they need both these image studies, as it feels like there is a big hole there; who has BC treatment with zero mammograms ever? We need to know if this cancer is multifocal or if the other breast is involved or worse.
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Preliminary biopsy results are in. There are a few fragments of infiltrating carcinoma with no evidence of p63 or calponon (whatever that means). I will talk to my doctor via video chat on Wednesday and am scheduled for an MRI on Saturday to see if it is anywhere else.
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Creativevintage- I'm so sorry. I was hopeful for you to get a benign result.
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creative - P63 and calponin are biomarkers in the myoepithelial cells that help differentiate diagnoses of radial scar, papillary lesions, sclerosing adenosis, ADH, DCIS, and IDC. Think of it like info that helps determine hormonal receptors, Her2 status, or Ki67. Absence or presence helps the pathologist figure out what they are looking at in the tumor sample.
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I'm sorry creativevintage.
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Special K, thank you so much! There were papillary characteristics to the cells that they did find. I was hoping it was just a scarred node, but I have to be realistic. The thought of more chemo does not thrill me, as I had neutropenia a few times, but it’s doable. I will find out in a few days whether or not it is HER2 positive or negative this time. It is 70% ER positive, 70% PR positive, the same as before. I am encouraged I made it almost six years after only having 4 lymph nodes removed, so I hope it’s localized, I get rid of those extra nodes, get through chemo okay and I will be done with this! The good thing is that I work from home now, so it might be easier to continue to work through this. I worked as much as I could last time, but it was rough
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creative - if it is helpful, I have seen some folks with exactly the scenario you have described. I will keep my fingers crossed for a localized recurrence that can be handled as you just laid out. Did you have Neulasta the first time around? Agree, working from home should be helpful, but I also hope your employer is flexible if you are not feeling 100% at times - it is to be expected. So sorry you are facing this again.
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Thank you Special K. I work at Mayo Clinic and they were fantastic last time. They gave me extra paid leave beyond short term disability and my coworkers supported and helped me through every day. Even though we all work remotely, we all live close to each other and I know if I need anything,they will be there, as will my closest friends. Funny thing, I just moved in September to a smaller house and finally got rid of my wigs. I guess I will have to order some new ones! I am holding on hard to the hope that this is a local recurrence.
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I'm sorry you're back in this place after 6 years. Keeping fingers crossed that it's local and small. The good news is there's a lot more treatment now and more coming down the line. We know have Kadcyla and Nerlynx available as treatments.
Please let us know what the MRI says and what your plan is going forward.
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I just had an excellent conversation with my doctor. She advised that she is still waiting for the HER2 results, but the tumor is strongly ER\PR positive. If I am HER2 negative this time and this is limited to the axila, they will do a mastectomy and ALND and no chemo. Please pray
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prayers for you creativevintage
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Creativevintage - prayers and healing vibes coming your way.
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creative - yes, praying for that. Maybe working in your favor is the time between your initial diagnosis and this - most Her2+ driven recurrences happen closer to the initial dx, ER+ driven recurrence more likely further out. Will cross fingers for that to be the case and the fix to be surgical.
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Praying for you, creative. I'm sorry you are facing this again.
I had my diagnostic mammo and an ultrasound today and it was not nearly as painful as I was bracing myself for. They answered my questions and reassured me and they were correct. I had to get in some awkward positions and having the side of the machine digging into my ribs and sternum was actually much more uncomfortable than the breast itself. But only in short bursts, and then it was over.
And in the first piece of good news I've had since this nightmare started, nothing else of concern was seen. I was preparing myself for further bad news, especially when they brought me back again for more mammogram angles and then the ultrasound tech took a LOT of snapshots and measurements, but then the radiologist came in and showed me all the pictures and said it was just a lot of simple cysts, goodbye and good luck. MRI on Sunday which I will have to mentally re-brace myself for, but until then I will try to just breathe.
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praying for you creative!
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Thank you all for your prayers and kind thoughts. I remember how important these conversations were to me for my first go round. The information, love and caring shared here lifted me up when I needed it the most. I wish all of you the best and am sending virtual hugs to all of you
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Hi AMG2
Just found this site today and am thrilled that there are others that can understand all that we are going through. I have finished my AC chemo and will be finished 12 weeks of Pacletaxel on Aug 24 .. I had a bit of a hiccup with thst.., after second dose it was causing colitis..so they dialed down my dosage to 50% for next 2 doses then wanted to slowly increase it . 5 dose was at 80% but same problem so they decided that 50% was all I would be getting.. I have my Radiation CT scan booked for Aug 31/21 and then my 5 weeks of that's will likely start in Sept. I also have been receiving Herceptin since May and that will continue for a full year also and the tamoxifen for 5-10 years..
I will be keeping you all in thoughts and prayers as we journey along...
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@creativevintage — in my prayers!! Very sorry for the tough news.
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hello everyone,
I’m new to the forum and wanted to say hello. Had a negative screening Mammo last October and felt uncomfortable on July 9. Found a lump and started working on it immediately. Diagnostic mammogram, Breast ultra sound, biopsy in a week (and I had to push). Learned it was triple positive with weak HR stats and strong HER2. 11mm IDC with a DCIS component. Scheduled it for eviction with lumpectomy and Sentinel node biopsy as soon as I could get on a schedule. Did that last Friday and was thrilled that all five nodes were negative and the tumor was 13mm. Stage IA.
Getting ready for the Taxol and Herceptin rodeo before radiation and tamoxifen (which I had to fight for because I’m premenopausal). They were pushing ovarian suppression and AIs and I am not ready for menopause a decade or more early. Maybe in 3-5 years, I’ll change my mind about menopause. My oncologist even offered to only give me Herceptin but I don’t want to live with that high of a chance of recurrence. We have to all live with that all the time anyway.
Chopped off my waist length hair into a pixie cut in prep for losing it by the end of next month. I’m ready. That’s all I can respond when people ask me how I’m doing. I say that I’m ready. Guess I don’t really have a choice though.Good luck to those getting surgery tomorrow and keep on fighting for those who’ve had recent setbacks. Treatment is getting better all the time, from what I hear.
Haven’t told many people yet, but I won’t be able to hide it for much longer.
Here we go! I’m ready.
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Nanny3 & SmoothOperator - We're glad you found us. Welcome to our Community, and thank you for posting such positive and inspiring posts. We're wishing you the best with treatment. Please, let us know if can help in any way. We're here for you!
The Mods
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welcome smoothoperator. Sorry you had to join the club but, you seem to have a handle on everything.
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Hi smoothoperator! Welcome! As someone whose cancer was highly estrogen/progesterone positive, I was willing to try OS + AI (I'm on year six). However, if I were weakly ER/PR positive, I'm not sure I would have wanted that. Good to hear you're a good self-advocate.
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Thank you all, your good thoughts and prayers worked. This tumor is HER2 negative! Strongly ER/PR positive, but HER2 negative. I am so relieved. Now to get through the MRI and PET Scan. This is such good news and I wanted to say thank you again for being here for me
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creative - oh yay! Hopefully less complicated in terms of treatment, that is great news!
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Creative - very happy to hear that!
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Creative,
Definitely good news! Hoping your MRI and PET scan show that it's localized.
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All is good! PET was clear and MRI showed a small spot in each breast, but they were not concerning for malignancy. Just to be sure, I am going to have MRI guided biopsy of each area. If all clear, they will do an ALND and send for Oncotyping, I will probably have to go back on aromatase inhibitors, but have to see the Liver specialist to see if elevated liver function tests are liver damage from the previous AI or if it is from a non functioning gall bladder. They are mildly elevated and have been since I switched to exemestane before I just stopped taking the AI’s after 3 years
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Awesome news, Creativevintage. Hope the MRI-guided biopsies show that there's nothing there.
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Great news, creative!
I had my MRI Sunday night and am waiting for the results still. They told me 24-48 hours and my anxiety is surging. As long as I had a road map with dates of things I was supposed to do, I was OK, but I'm now dangling as I wait to hear if we need to do more needle biopsies on suspicious spots from the MRI before the sentinel lymph node biopsy or if that's the next thing on the list, and when this will all happen, and when I will meet my oncologist, and when chemo will start, and blah blah. When I know what's going to happen I can handle it but the uncertainty is making me crazy. I'm also fretting over Covid vax boosters.
I did have my consult for genetic testing today and went in having been told it was a blood test, only to find out it was a saliva test. At this point, avoiding even one needle stick feels like a celebratory event.
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Gamzu, hang in there! I think the emotional highs and lows that come with the waiting can be exhausting
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