TRIPLE POSITIVE GROUP
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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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great news creativevintage!
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Well, my MRI report has two small areas of focal NME found in the right breast (side with the IDC) and one big area (4.5cm) of clumped, asymmetrical, segmented NME on the left. Bi-RADS 4, MRI-guided biopsies of all 3 sites recommended. I'm waiting for a call from my surgeon for a referral for that. But based on Dr. Google, the findings on the right seem equivocal but those descriptions on the left seem highly predictive of DCIS.
Rats. I was expecting additional biopsies because my surgeon warned me it often happens with MRI and may not mean anything. But the literature on "clumped, asymmetrical, segmented" non-mass enhancement is not encouraging. I know the answer is to take a breath and wait for the biopsies, but I've already had one needle biopsy come back with a wrong benign result that's delayed this 2 months so I'm going to have trouble trusting that. I hadn't seriously thought about the idea that BMX would be part of this journey until now but I think I'm going to start exploring it as I hate being caught off guard. I feel like my breasts have gone rogue years before they ought to.
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gamzu, so sorry for all the twists and turns you are going through right. I've attached a link that I think will help you with your research on Lumpectomy vs Mastectomy. It was written by Beesie and is a great resource.
https://community.breastcancer.org/forum/91/topics/868997?page=2#idx_40
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@gamzu - my surgeon said the same thing. And told me not to freak out if they want more biopsy based on the MRI because it's a more sensitive scan. I think that's what they tell everyone because they know were in an emotional state.
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Thanks, everyone. I've also just noticed on the MRI report that the radiologist had the date of my LMP wrong; is this worth bringing up or does it not matter? I was actually on day 2 during the MRI and I told the tech but it apparently didn't get filtered through as they had the date of the last cycle. My cycle is regular but usually around just 21 days so if the radiologist was assuming average then they would have thought it was day 20 of the last cycle with a week still to go. My understanding is that the hormones and breast changes are not the same at these points.
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i think they only ask about your LMP to make sure you aren't pregnant
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Thanks, morrigan. I did ask when my surgeon's NP called this morning and it doesn't sound like it matters.
MRI biopsy has been scheduled for Tuesday. They are able to do all 3 sites in one go, which will probably make for an unpleasant day but which is good news for my sick leave. I thought I was heading straight for chemo but from the conversation with the NP they want me to get the biopsy info and the genetic testing results (supposed to be back within 2 weeks) and use that to help my decision-making on mastectomy or not, because if I go that route then they'd do the SNLB along with it instead of separately and then we'd go from there. I guess because we are not rushing to shrink a large tumor and it may have in fact already been removed there are a few ways this could go that I wasn't anticipating.
Adulting and making decisions sucks. I get annoyed by having to decide if I should go to the store now or later. This life-altering stuff is for the birds.
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MRI biopsy got rescheduled to late next week because a coil in the machine broke this afternoon. At least I didn't show up at 7:30 tomorrow and find out? I'm a little annoyed but we were waiting on genetic results anyway before deciding a surgical course and those are supposed to come in next week as well, so if they come in first and a risk gene is found then we can just not bother with the biopsy.
I am starting to lean towards BMX right now anyway. After my first biopsy I just have trouble trusting benign results and I don't know if I can be reassured otherwise.
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Coach Vicky, just now reading messages. Please know that I am thinking of you and praying for your husband. I am so very sorry that you both are having to go through this. My heart is with you.
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We all love good news! Take care
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Genetic testing just came back, negative for everything. I guess it's a good thing, though it would have given an answer to the "Why me" question and eliminated the need for the next biopsy or any waffling about surgery decisions. Onward to the MRI biopsy on Friday, I guess. I just want to know WHAT we are doing and WHEN.
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gamzu,
That's good news. My next-door neighbor is BRACA 2+ and she's already had her first recurrence after only a year (with two different kinds of cancer, no less). The "Why me" question has never bothered me. So many otherwise healthy women with no family history get breast cancer, it seems pointless. Yes, best to focus on the WHAT and the WHEN. ((Hugs))
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