TRIPLE POSITIVE GROUP
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Hello ladies!
I am trying to figure out some papers I received at my onc appt this morning. My oncologist came into the room I was in and sat down next to me then started reading some of my reports out loud. I think he was just trying to refresh his memory but I was surprised when he said ER+PR+HER2+. I stopped him right away and told him that wasn't correct, I had been told I was HER2-. He went through a couple of other papers and informed me that I was HER2+ but it was weakly positive so it was fine. HUH??? I thought I was on top of things but apparently I'm not at all! I asked for a copy of the report and it says:
Block SG-13-18407-F2
HER2 by IHC
2+. Weakly positive/equivocal
It has is twice but I think the first is for tumor #1 and tumor #2. I'm so confused, why did my breast surgeon say I was HER2-? I don't know, is weakly positive considered not positive to some docs? I was already a little concerned because I had lymphovascular invasion but since my oncotype dx score was 16 they said I don't need chemo (even though oncotype does not factor in LVI). I don't have control over a lot right now but I want to do everything possible to try to avoid reccurance.
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Kathie-loved the artwork. And the day I was diagnosed with a troublesome mammogram, the radiologist walked in and said "I am going to ruin your day." WTF? Didn't give me a lot of info except to get a biopsy. I asked about an MRI and they said no, just get the biopsy. This was in a Womens Mammogram area that is usually wonderful. As I found out later, it was the day before Thanksgiving and the usual people were gone, so she was a fill in radiologist. As a result, I panicked,, had a general surgeon who does a lot of breast biopsies do it. He found LCIS only, told me to see an onc and take a pill.
My Nurse Practitioner friend said no that didn't work, and hauled me to breast specialists. The one I loved immediately ordered an MRI, found the real spot near the area of LCIS tissue that she was able to completely remove during the biopsy with clean margins. I shudder to think what could have been if I had followed the other guy's advice. I realize he went to the area that was marked, so clearly it either didn't show when the did the marking for surgery or they people doing it were idiots. And, they would not give me an ativan before they stuck the long wire in that was freaking me out. Told me I should have asked back in the surgery area, and that I could cancel the whole thing if I wanted.
Once I got my plan underway, I then went back and wrote a letter to the head of the Women's Department at Clarian Hospital, the head of the radiology department and the surgeon. Told them my experience and that I would tell everyone I knew that their lack of professionalism both emotionally and skillwise could have literally caused my dealth.
I had phone calls from all but the surgeon. The head of the Women's Department was horrified, said she was the breast surgeon on staff and couldn't believe that they did not specifically tell me to call her. She asked alot of questions. Very nice. Next thing was a call from the radiologist who made the rude comment. Apparently she was in some serious trouble. She kind of apologized, but then when I brought up the MRI question, got all defensive and said sometimes insurance won't pay. Told her she never even checked. It then went downhill quickly and I finally told her that I would never agree with her side and that the conversation was useless to continue. Had a call from the department head again and told her the conversation and that I thought she should never be allowed to see patients again. The other radiologist at the surgery center called and apologized and said they were reviewing how they handle those things and I should have been given the pill. I debated pursuing some legal options, and then decided i had enough on my plate at the time.
I love the team I ended up with, but it took work to get there.
REgarding metformin-my primary care physician prescribed not my onc. He is kind of following the study and tracking me at the same time.
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ashla - princess is not eligible for Perjeta because for early stagers it is only given neo-adjuvently, and she has had a lumpectomy already.
annie - here is the skinny on IHC testing. This is the info from BCO:
IHC test (ImmunoHistoChemistry): The ImmunoHistoChemistry test finds out if there is too much HER2 protein in the cancer cells. The results of the IHC test can be: 0 (negative), 1+ (also negative), 2+ (borderline), or 3+ (positive — HER2 protein overexpression).
So, even with a weakly positive result a 1+ or a 2+ you can be considered Her2- for purposes of chemo and Herceptin. It is not like being a little bit pregnant - you can actually be a little bit Her2+. In the past only those of us who measure a 3+ received Herceptin. This viewpoint may be changing for anyone who tests out at a 2+, particularly if node positive, or with a large mass, and some feel that there is potential benefit from Herceptin, even at an equivocal measurement. For you, since your Oncotype is low, chemo was not a given, and Herceptin is given with chemo the vast majority of the time. Generally speaking a true Her2+ will have a high Oncotype result, if a 3+ IHC on a biopsy or surgical sample, Oncotype is not even done.
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Annie ~ I was HER2 equivocal by IHC {2+} so they sent my sample to be tested by FISH {another, more accurate test of HER2 positivity}, I was also equivocal as per FISH. I ended up being in a clinical trial where HER2 "weak" people got herceptin with chemotherapy prior to surgery. After treatment and surgery, I was HER2 negative ~ so obviously the Herceptin did SOMETHING in there. Even though I am "technically" negative, I am still getting herceptin and I am glad because of the promise it shows in tumors that are even HER2 negative.
If it were me, I would go ahead and ask that the sample be tested by FISH as well, just in case you are actually HER2+. It will give you a definitive answer if nothing else {unless you are weird like me and also equivocal on FISH}.
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like you, twinmama, i was also equivocal by both tests. but they wanted me to do herceptin anyway, and like you said, they do believe it is helpful for women who are not strongly positive. i was a 2+.
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SpecialK - Thank you! It makes sense now! My thoughts and prayers are with you all!
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kathec and twinmama - I participate in a Her2+ vaccine trial (as does fluffqueen) that started adding low Her2 expressors (you can be anything but a zero) into one of the arms of the trial. This trial sorts into two specific vaccines depending on histological type, so only the A2 negative histo types that receive the AE37 vaccine can be admitted if they express anything less than a 3+. They concur with the thought that there is potential benefit for those not traditionally thought to be true positives.
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kathec March 1st will be 3 years on Anastrozole. No I am not going off it. I am just over the border into osteoporosis. There are meds to help it stop getting worse. Just need to do a few blood test just to be sure it's not something else causing before I get them. At this point the osteoporosis in not life threatening. Cancer mets is so it's not even a question I will ask my onc in April. Current plan is to stay on it for 2 more years. Now if my onc wants to increase that, then we need to talk. But every case is different. I had no node involvement which is in my favor but I had a large tumor which isn't.
Treating mets before symptoms are once you find symptoms seems to have the same outcomes. Who wants extra radiation anyway. With the node involvement you of course need to be in tune with your body. If something isn't right, like a headache that won't go away for 2 weeks, you put that call into your onc. But in the mean time don't assume mets. Tonlee the woman who started this thread is also a stage III. She assumed it was a matter of time before she got mets for a while. Well she's doing fine and as you can see rarely posts anymore. It takes time to get to that point. Don't worry until you have that symptom... which may never come.
AnnieeC maybe you biopsy said HER2- but your path from surgery was HER2+. It can happen. I would also ask why you aren't getting the FISH test to confirm.
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SpecialK ~ I plan on asking about vaccine trials the next time I see my onc {which is next Friday}. I just feel like there is so much promise there!
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twinmama - here is the link for the one fluff and I are in (first linked trial). Some others too:
http://clinicaltrials.gov/show/NCT00524277
http://clinicaltrials.gov/show/NCT00524277
http://clinicaltrials.gov/ct2/show/NCT01355393?term=Her2+breast+cancer&rank=16
http://clinicaltrials.gov/ct2/show/NCT01730118?term=her2+vaccine&rank=5
http://clinicaltrials.gov/ct2/show/NCT01532960?term=her2+vaccine&rank=44
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Howdy all - got my results from the biopsy on the other breast and it is also IDC Grade 1 ER+PR+HER2+ So I have decided to do a double mastectomy - apparently my breast hide this stuff too well as neither of these were detected in mammograms so I just we feel more comfortable without them LOL. I have to wait until next week to find out the new schedule for surgery as now my breast surgeon has to coordinate a schedule with the plastic surgeon. I just can't believe I have cancer in both breasts at the same time. I guess it is better than having it in one now and then finding in in the other a year later? I still will not have all the details until they remove them and get the biospy results from the lymph nodes but will fill that in when I have that. I am glad I found you all - i think I am gonna need a lot of help in the coming months/years.
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all if your responses didn't show until a minute ago so thank you EVERYONE! I just checked and this was post surgery pathology so maybe it did change. I guess my biggest concern was if the insurance was playing a part in my treatment decisions and not the facts....or maybe I'm just over thinking and need to relax. I wish it would all just make sense to me and I would feel more at ease with what they are or aren't doing. I am going to call and ask about the fish test. My oncologist asked me today what my oncotype score was and I told him even though I was thinking "shouldn't you be telling me?". Then he informed me that he was going to start me on tamoxifen at which point I had to remind him that I was already on tamoxifen and had been for a month and a half. It certainly doesn't make me feel like I can relax and trust that they are doing their best.
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AnnieeC I would ask your Onc why s/he doesn't know the answer to these questions. I would also get a 2nd opinion. Even if onc # 2 says the same thing you might be a better fit with a different onc. YOU are paying for this and their services. They may be busy but they should be looking at your chart and know this information when they first meet you.
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right on, lago!
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Princess, you have a diagnosis very similar to mine. Why are you getting Herceptin every week if you aren't getting chemo every week? I did weekly taxol for 12 weeks. so I got Herceptin each week with my Taxol, then did the every three weeks for a year. But my initial chemo plan was for TCH every three weeks (until the 1st one put me in the hospital) with Herceptin only at those treatments.
Kathec I am so in love with your work! Do you have an Etsy store? I'm into making diaramas, with little shadow boxes. Mine are all so very strange, Mexican Catholic kitsch...no one would buy them, but I keep making them. Even though I'm a clinical pathologist with science degrees, I studied fine arts/art history undergrad. Lago, I want to see your sculptures!
New Linda, my advice, read on the boards about reconstruction. I know now (and I know I didn't know it right after diagnosis) that I would avoid reconstruction if I had (or will have, in the future) a mastectomy. It helps to get a feel for what the process is all about before you make decisions. I'm so glad though that you are getting info and like I said, it will trickle in slowly. Take your time on you decision processes, get all the info you can, and do your best to never look back and doubt the decisions you made.
Thanks guys for the congrats on being 1 year post chemo. And congrats Ashla! Yeah, I know I'm not totally 100% my old self because I still have neuropathy in the balls of my feet, but yet, I think I'm even better than I was before :-)
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pbrain, I got weekly Herceptin while I got TCH every 3 weeks too. Then after 6 TCH, I got Herceptin only every 3 weeks for 3x. That's when they pulled me from it for EF issues. So i got about half of the recommended dosage. And I forgot if I said congrsts. So CONGRATULATIONS! !!! its good to be almost back!
Much love.
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I love all y'all! we are a talented bunch of ladies! And smart too! I want to see lago's sculptures too. and Pbrain, i want to see yours, too! You are doing it the right way. which,if you think about it, is sort of like how a child does things; for the sheer joy of it! when i worried about whether i would be famous or good or successful at it, i lost sight of the fun of it, and sort of dried up! now, i do it as the spirit moves me, & its so much better that way, & pleases me when it pleases someone else, too. i did apply & named an etsy store, but haven't posted anything there yet. i will let you know!
i am still having well wishes for nicky, and wish us all well
hiya, Moon...dare i say...G'night, moon?
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Just so you know, I failed crafty! They even took my hot glue gun away. The funny thing is my family owns a graphic art supply store for the last 35 years and my mom is hugely talented. I got the cooking gene! You ladies have some beautiful work!
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We figured out by the end of my appointment that the reason for some of the confusion was because they had 2 files on me! One file was my last name spelled with 2 T's (the correct way) and the second file was spelled with 1 T. So since my surgery which ever file they gave him was the one he went by that day. The file that he had yesterday showed the last time I saw him was early December (I wish lol). They said they would combine them right away. Crossing my fingers that there wasn't anything bad from my other file. Now I wonder if I did have a fish test and it was just in the other file. Kinda scary! I even received a letter saying that a hospital type bed had been requested for me. I was so scared! I was picturing that bed in my living room with all of my family standing around me while I took my last breathe. I kept thinking "oh my gosh I'm going to die and they aren't telling me yet". The letter had my name on the envelope but after I looked at the letter for the millionth time I realized it had another persons name in the upper right along with her birthday (she was 85!). I was relieved that it wasn't for me but it made me sad for her.
I really appreciate everyone's input and if it ends up I am truly HER2+ I will be back!
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Anniee - holy crap! This is just yet another reason to ask for copies of all diagnostic studies and path reports and inspect them closely...wow. Keep us posted!
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Sorry guys but I have don't any fine art since the 80's. Went to grad school for industrial design and was a toy/board game/video game designer for many years. Then got my web certificate then a graphic design degree. Currently a graphic designer. But I still love to make stuff just don't have the time. I sew and cook too.
AnnieeC I hate to say this but I too have had plenty of mix ups. The last one was when I got my port removed. The gal couldn't get my blood pressure from my leg. It was too high because she didn't know how to do it. She said that she was concerned because of my last stress test... I looked at her and said I have never had a stress test. I don't even have a cardiologist. Sure enough it was a stress test for a 85 YO man that has the same last name as mine. Ended up in my digital file!
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Wow Annilee. That would scare the h*ll out of me. Your cancer center is not very efficient..They have made too many careless errors for me. I would double check to make sure that they have all my info correct. Geez they are dealing with life and death situations how in the world can they be so careless? I would report all these errors to whoever is in charge.. Unacceptable !!!
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Goodness, I haven't been here in quite some time. Sad to see so many new ladies but happy they found this site. Great support here. Wishing everyone well!
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Gosh Annielee - glad it got straightened out. Something along those lines happened to me too - my initial biopsy pathology showed me ER/PR - and her2+. After the surgery, it showed triple positive. I asked for a second pathology. It was sent to a separate lab the last time confirming the 2nd diagnosis. I was the one who caught it. Scary. one thing I have learned through this is that we have to be our own advocates.
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It took 4 pathology reviews (I had them done because of discrepancies between my 1st and 2nd path) for someone to find my invasive cancer. Granted, it was tiny (only 3 mm), but it changed my treatment plan once it was found.
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mine was three biopsies. The first a general surgeon who only found LCIS, the second an ultrasound guided one that was totally clear and they decided they didn't hit the spot and the third and diagnosing one was a second surgical one. It was nerve wracking.
On vaccine trials, I didn't click through on all Special is so sorry if there are duplicates, but here are a couple, and a site where you can search based on your specific diagnosis.
Phase III-http://www.cancer.gov/clinicaltrials/search/view?cdrid=717982&version=healthprofessional
Phase II-http://www.cancer.gov/clinicaltrials/search/view?c...
Site where you can search for tons of them-
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J have to go back to princess--I'm still LOLing about them taking u'r glue gun away--that's hysterical--u weren't even allowed to touch it. hahaha.
Annie what a mix up, geeze I would have, well probably done nothing but I wouldn't have liked it--it is kind of scary tho.I mean I have like everyone else has put sticky notes with arrows or names of what was coming out--my BS did not appreciate it, but everyone does that now .Mine were named Mutt and Jeff 2 guys that always hung around me, now they even left me--Oh well I'm happy they're gone they turned into freeloaders after their usefulness was over.
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LOL @cami! Mut and jeff.....
J, some of my family is very talented. Some um not so much. I do jewelry.
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Annieec,I caught that same error for a patient and had it straightened out for him at the local facilities, but still, by the time he was seen where I was, his file had been split under 2 slightly different spellings and medical record numbers for quite a while, and since he had been referred to different facilities, it is likely that to some degree his records are still split in various places where he was seen.
My sweetie has an unusual spelling for his first name and the name still sounds like the common spelling for it, and that makes me worry that his records might get split at some crucial moment in time, too.
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