TRIPLE POSITIVE GROUP
Comments
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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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gamzu, glad to hear it wasn't inherited/familiar!
I'm still waiting on genetics and pathology. It feels like forever.I can see the benefit of having a genetic reason to help make some of the decision easier. Its hard making all these choices. Having three kids I'm so desperate for my genetic testing not to be familiar / inherited.
Good luck on your biopsy Friday!
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gamzu710 - glad your genetic testing came back negative. I was also negative but with a family history of BC, I was getting checked every 6 months (mammogram then breast MRI 6 months later)
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MRI biopsy was ugh. They were only able to get 2 of the 3 sites because the radiologist was concerned that with the position I was in to access those, getting the third site would basically require impaling my breast. And of course the third site was the most suspicious one. So I have to come back in 3 weeks to do that one separately in a different position. That was the earliest they could manage, but realistically it would be probably a 2 week wait at best anyway because they don't like to give contrast twice in the same 10-day period.
I'm fed up. Not with the radiologist--if it isn't safe, it isn't safe. But just with the reality of how long this could be dragged out and how traitorous my breasts are being. I am strongly, strongly leaning towards BMX at this point anyway. The thought of continuously going through these MRIs and biopsies every year waiting for something else to go bad is extremely unappealing. At this point I am almost perversely hoping one or both of these sites comes back as DCIS next week so my decision is made for me but even if they come back benign I probably won't trust it given my first mistaken needle biopsy. It's Labor Day and then Rosh Hashanah and I'm going to percolate on this, wait for the initial biopsy results, and then call my surgeon's office for a conversation late next week if I still feel the same way. My main lingering question is if BMX recovery would delay chemo unnecessarily with triple-positive, but other than that I am sick of all this and can't imagine going through it repeatedly.
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Ugh gamzu! I totally understand your feelings at this point. Hope things go better for you soon!
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gamzu - if you are leaning toward BMX would you still do the biopsy? Or skip the upcoming one if the biopsies you just had done reveal an issue? Do you have the option of neoadjuvent chemo? If not, food for thought is that for the vast majority of triple positives surgery came first prior to 2013 and the advent of Perjeta use for early stagers. If you read from the beginning of this thread, started in Jan of 2011, almost none of us had neoadjuvent chemo, including me. I had surprise positive nodes which required another surgery for ALND, surgical skin healing complications and expander removal, so another three surgeries, and due to all of that was delayed getting to chemo beyond the suggested 30 day optimal window. It seems to have worked out ok for me despite those delays, but it is important to recognize that unexpected complications can occur, but that they are not the norm. Remember that if the breast tumor has been removed chemo and Herceptin are functioning as body-wide clean up. My breast surgeon initially suggested lumpectomy but I opted for BMX because I image poorly, had a history of previous biopsies and issues over 20 years, and I figured if I could make cancer in one breast, I could do it in the other. Everyone has to make their choice by weighing risk/reward, and what offers peace of mind. My BS was fully on board with my choice, which turned out to be the right one as I had DCIS that had been unseen on any imaging modality, and undiscovered ADH and ALH in the prophy breast, as well as positive nodes that escaped detection with MRI even though they met the size threshold and should have been seen.
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SpecialK--thank you for the wisdom! I didn't realize that about Perjeta and how things changed in 2013. If the biopsies from today come back showing an issue, then my decision as of this minute would be to cancel the second MRI biopsy and schedule a BMX. Honestly, I'm leaning strongly that way even if they do not come back showing an issue (as I'm probably not going to ever be able to trust given the miss on my original U/S biopsy that they didn't just miss a site again), but since I went through the trouble of doing it, I might as well learn the results first and sleep on this for a few days just to assure myself I made the decision rationally and not out of frustration. My surgeon is on this information-gathering mission with the goal of helping me make this decision so I have to assume she thinks the timing and adjuvant chemo is fine, but I do want to at least have a conversation about it. I'm also concerned going this long without knowing lymph node status. My surgeon doesn't think it's spread because I'm very thin and have no palpable nodes but I've read enough on this board to know that's meaningless and she may just be trying to be reassuring in the moment.
But I do understand that with a 6mm tumor that was already removed at what was supposed to be just a biopsy and ended up being a lumpectomy, I'm already not in the same position as many triple-positive patients. We don't know what these additional sites are but we do know they aren't huge tumors.
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Good morning group!
gamzu- sorry it’s been bigger for you. I feel like we may be in similar boats with small tumour/DCIS. My DCIS didn’t show on any scans.
Finally after 3 weeks my pathology is back! The original tumour is only 8mm (yeah!) and not 15mm as measured pre-op. 4 lymph nodes were taken and they are clear! However they did increase my grade from 1-2. Margins for IDC were clear.I am confused now though bc they found DCIS that was multifocal on one side of my tumour. They said 7/25 slides - but I don't know really want that means. It's also grade 2, I got a printed result from my GP- my surgeon hasn't called. It was located in the inferior aspect of the sample.
I 100% would just go with mastectomy but I'm really limited in my choices of plastic surgeons and both are poorly rated. I'm thinking of maybe getting the mastectomy and paying somewhere else for reconstruction. I am also crazily thinking of doing chemo and then getting a breast reduction lift (out of pocket) and letting that heal- then seeing if I can get a referral for a nipple and skin sparing mastectomy out of province since no one here does it. I think based on pathology I'm stage 1A so I feel like it's not - panic. The tumour was far from skin, muscle and nipple. I often wish I lived in a different province- Covid is soaring here and our government isn’t really doing much. I am not even eligible for a vaccine booster.
SpecialK- I'm glad you shared your delay experience. I'm panicked to get chemo started but it seems like I'll prob be slow on getting that started.
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1982- what province are you in? I'm being treated in Alberta and my surgeon is an oncoplastic surgeon in Edmonton and I had a reduction and lift with my lumpectomy. I'm going back for a reduction and lift on the left side at a later time. Why on earth would you have to pay out of pocket for surgery in Canada? It's completely covered here.
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gamzu, hi. i just got diagnosed on aug 9 (my 24th wedding anniversary) with IDC stage 1B, ER+/PER+/HER2+.
I already had 2 biopsies. i will be getting genetic counciling on September 17. i have no other known breast cancers in my immediate family but i do have 2 daughters. i started chemo yesterday. i was in the office 8 hours; doctor said she wanted to start agressively. i will be going every 3 weeks for 6 cycles (same as you i think). then surgery, then radiation. i am also thinking about double mastectomy. i wanted that going into this just because i wanted to get it out and never have to worry about it again. lol. we'll see when the time comes to talk to my surgeon, but i'm really thinking that is my plan. i am 53 years old. Been pretty healthy up until this point in my life. I do have a lot of support and am trying to keep positive. Hope you are too!!! We can do this!!!
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Redcanoe- Ill message you where I live. I was medically approved form a excellent surgeon for breast reduction (which was a 3 year wait for a consult and 1 year wait for the surgery) but they wouldn't do it as part of my cancer care. I was told I have to do it after radiation. The centre I go to (the only one available to me) has two plastic surgeons. I haven't heard one positive thing from anyone I talked too about either of them. Unfortunately the home care nurse called them both butchers (poor taste to say that). Another person in the beauty industry who works closely with breast cancer survivors asked if I could pay to go to our neighbouring province to get a better surgeon. When I was waiting for a breast reduction here I inquired about going to a different surgeon in a different province and you can't unless your home province doesn't coverHonestly, there was one really good plastic surgeon here and they quit doing breast reconstruction recently. They can't co-ordinate me getting a reductionlift here so once I finish chemotherapy I could choose a decent surgeon and get it done…. then because no one here offers a nipple sparing mastectomy I could be referred out of province. I even thought about moving in with my husbands aunt in a different province to see if I could get better options…
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Does anyone here use Latisse? My eyelashes and brows have never fully recovered from chemo. They need some help. I considered microblading, but everyone that does microblading seems to want to give you really unnatural looking brows, as if they've been tweezed, plucked, and filled. I just want my old wooly bears back. Plus, microblading won't do anything about my lashes. I can't wear makeup to work so these are my options.
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Hi hapa!
I haven't tried Latisse, but I share your pain. After seven years, my eyebrows are sad and my eyelashes are sparse. I do draw my "eyebrows" in with an eye pencil. They look pretty fake. On special occasions, I do wear fake eyelashes. But, I'm not very skillful at applying them. If you try Latisse, let us know if it works.
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Hi hapa,
I did use latisse prior to cancer years ago. I barely saw a benefit for the cost and time back then.
I recently got my lash line tattooed to help with lash loss and I LOVE it. I don’t know if that’s an option? It’s not eyeliner but a tattoo along the lashes in black. I am a minimalist with makeup so this is perfect.
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Help! I don't understand my biopsy results in the portal.
At the top it says this: Specimens: 1) - Breast, Right, RIGHT BREAST CENTRAL MIDDLE FCC, ATYPIA, DCIS
2) - Breast, Left, LEFT BREAST CENTRAL OUTER SEGMANTAL NME MIDDLE TO POSTERIOR, FCC,
ATYPIA, DCISBut then under "Diagnosis" it says R breast: fibrocystic change, mild; L breast: fibrocystic change including focal PASH. No mention of DCIS.
Do I have DCIS or not?? I'm baffled.
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Bilateral MRI biopsies were negative. The spots turned out to be a fibroadenoma that’s been them since 2005. They think the clip marking it moved a bit over the years. The second spot was just a reactive lymph node. I meet with the surgeon next week and we are waiting for oncotyping of the tumor biopsy. Turns out my elevated alkaline phosphates is related to osteoporosis, so no problems going back on exemestane after surgery. I really feel I got lucky, but I know I will deal with more lymphedema than I am now. Currently I have grade 1 lypmphedema that rarely bothers me. The plan is lymph node dissection followed by AI
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Oh, creativevintage, what amazing news! I'm so pleased for you!!! You must be so relieved.
I think maybe my biopsy results mean that DCIS was in the differential diagnosis but the final diagnosis is something else? Maybe? I don't know. Why they can't write these notes in a comprehensible manner is beyond me.
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Creativevintage,
If you don't mind, how large is your "elevated alkaline phosphates"?
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Excellent news creativevintage!!!
Gamzu710- I’m not sure exactly but I think your right that that you don’t have DCIS. I found out I have DCIS from my lumpectomy and it’s very descriptive about what they found in the DCIS. I am thinking that you don’t have it?
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