TRIPLE POSITIVE GROUP
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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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Lilych. Right now it’s 156. That is the highest it has gone and the elevation began shortly after I started aromatase inhibitors. It’s been up and down, but I do have significant osteoporosis that worsened with the AI. I did get prolix too, but I was relieved it had nothing to do with any liver causes
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Thanks for sharing, Creativevintage. It does sound high but it is good to know that is just related to AI and should not be a concern.
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Finally heard back from someone who was able to interpret my biopsy report for me: I do NOT have DCIS and the findings were all benign. My guess that they listed the differential diagnosis and then the actual diagnosis was correct. They are going to try to bump up my other MRI biopsy but I won't hold my breath on that. At least I know now that the trouble is all confined to one breast and the left side is clear.
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Awesome news, gamzu! What a relief for you.
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@gamzu - very good news.
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gamzu - yay!
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Gamzu710 - glad you got good news!
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Thanks, everyone. Met my oncologist this morning. We are still waiting for the final MRI biopsy and the sentinel lymph node biopsy. If the lymph node biopsy is negative, then my chemo plan is Taxol + Herceptin. If it is positive, then TCHP. Obviously hoping for negative lymph nodes, and both my oncologist and my surgeon seem optimistic about that, but I am not assuming anything. Given that I thought TCHP was my only choice going into the consult this morning, I think I'll just keep mentally prepared for that right now.
At any rate, I liked the oncologist, who is the first person in this process who has sat down with me for a long time (over an hour) and tried to get to know me and hear my story in my own words.
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I asked this on the general chemo forum but I’m a bit confused about hair loss.
For those of you who just received weekly taxol as chemotherapy, did you lose your hair? If so, when?
I’m not sure what to expect…. any insight appreciated.
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I did AC first, but you will indeed lose your hair on Taxol at some point. I read somewhere that hair loss on Taxol usually begins after two weeks. Loss can be gradual or take a few days. At least, your chances of permanent hair loss are less than on Taxotere. I'll tell you -- Taxol really did a number on my eyelashes and eyebrows. Those were fine through AC, and are still sad and sparse nearly seven years later.
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I lost all my hair after the 2nd time with Taxotere and most of it never came back
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Yes, I lost my hair on weekly Taxol. It started coming out around week 3. However, I didn't lose my eyelashes/eyebrows until I was almost done, but they did go. My eyebrows came back very sparsely, so I tried using a biotin product on them. Took a few weeks, but they are much fuller now.
My head hair did return, but much thinner, so now I'm also trying a biotin shampoo in hopes of having as much success as with my eyebrows.
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