TRIPLE POSITIVE GROUP
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Thank you,SpecialK!
Coach Vick
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just had my port put in yesterday and today I I noticed my veins and my neck or enlarged called the doctor she told me put warm compresses on it and take some ibuprofen that its inflammation. Has anyone else had this problem after port surgery? Worried
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Hi all -- some news you might be interested in:
Diabetes Medicine Linked to Better Outcomes in Diabetics With HER2-Positive, Hormone-Receptor-Positive Breast Cancer
March 16, 2017
Diabetic women treated with metformin who have been diagnosed with HER2-positive, hormone-receptor-positive breast cancer have better outcomes, including overall survival, than similar women who were not treated with metformin. Read more...0 -
Why do they give you a time line on the Arimidex after all treatment. I read where some are asking to be taken off before 5 yrs and Dr's tell them no. Also, why do some Dr's think 5 yrs and others 10 yrs?
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Liz - five years was the standard amount of time for both Tamoxifen and aromatase inhibitors, based on previous studies. There was some thought that both drugs provided some carryover protection beyond the five year period versus not having taken anti-hormonal therapy at all. With Tamoxifen initially, a study was conducted lengthening the therapy time to 10 years, which showed improved DFS and OS. Here is a link:
http://www.breastcancer.org/research-news/20130604
Later studies were done on aromatase inhibitors in the same fashion, link:
http://www.breastcancer.org/research-news/10-yrs-of-femara-better-than-5
Doctors have differing opinions regarding benefit based on their experience and how current they are keeping on studies - and how much credence they place in those studies. The BCI test (Biotheranostics) - a genetic assay done on the patient's original tumor, indicates whether one is at risk of recurrence beyond five years, and whether or not , based on the assay results, you will benefit from continuing anti-hormonal therapy. It is a fairly small number of patients who have quantifiable benefit from continuing AI therapy, which comes with side effects that can affect quality of life. In spite of this there are some docs who are asking their patients to continue with anti-hormonals for 10 years without testing of any kind - this may be their blanket approach, or they may be considering each patient clinically before making that recommendation. Link:
https://www.answersbeyond5.com/what-is-bci
I had a BCI test done and the result indicated that I was high risk for recurrence, but received little benefit from AI therapy. To me, that meant I had received little benefit for the five years I had already been taking it so I asked for a PET/CT, since it had been a few years since I had one. My oncologist has asked me to continue Femara as long as I can handle the side effects, because even though I seem to receive little benefit, it is not necessarily zero benefit.
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SpecialK
I am triple pos with KI67 of 10. Never made sense to me
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wabals - I understand, - I had a massive Ki67 percentage and a mitotic rate of 1 - discordant for sure. The other two components of my grade were pegged, I am thinking the slide the pathologist looked at was from an indolent section of the biopsy sample. My surgical tissue sample was not re-graded or tested for receptors or Her2 status, but that may be because in addition to it being done in pathology for the biopsy cores I also had Mammaprint done. Side note: If you live in Leesburg, I spent a lot of time at the equine hospital at Morven Park - we used to take care of the neonate foals in the spring, lived in Springfield for 10 years, DH was stationed at the Pentagon. My son is a firefighter/paramedic in Loudon County now - small world, right?
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Robin 1234 -I had swelling after my port surgery. It took a week or so for things to get back to normal. My vein is still noticeable when I turn a certain way. Keep an eye on it though, it shouldn't get worse. Take care
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Small world indeed! We also live in Fl. On Hutchinson Island and went to Tampa when we were evacuated. If you have plans to come to Va message me. Would love to meet you! Are youan NP? I was until I retired.
My path was done on my tumor after surgery. My mitotic rate was also low. Go figure
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Special K OMG my grandson is a firefighter in training now in Loudoun! He was a cadet and a volunteer for 4 years. Now making it his career. So proud. My granddaughter was an EMT volunteer in purcellville score she got married
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wabals - I was coming to Virginia regularly from 2012-2015, and stayed with my son in Sterling several times, for a Her2+ vaccine trial through Johns Hopkins at Sibley in D.C. I am done with the active phase of the trial - now am just being followed on the phone. My son moved to Great Falls, but still volunteers at the fire station in Ashburn. Where did your grandson volunteer? How funny if they know each other! My last trip up to the area was last summer, unfortunately for a funeral for an old military friend who had stage IV BC. I have many friends still up there and need to come back up to see everyone! I will def let you know if I am headed up that way - would love to meet you too! I was fortunate to meet several from BCO during my trips north for the trial, and also to meet other trial participants who were Her2+. I am not an NP, worked here in Tampa in Transfusion Services administratively, in the same hospital my BMX was done in, but left there in 2011 - too much treatment that still needed to be done and upcoming surgery - it wasn't fair to my colleagues, so I resigned. I have a re-hire clause so I could return but not feeling that working in a hospital is where I want to be, have been a patient too many times now, lol!
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Hi Ladies,
I'm having an oophorectomy (I'm 48, so close to menopause anyhow) on Monday and will then be switched to an AI versus the Tamoxifen I started a few months ago. I'm wondering SpecialK how you knew that you received little benefit from the AI?
Another Q unrelated...does anyone know on this thread why PCR after chemo doesn't necessarily make a huge positive difference for triple positive patients in terms of recurrence? I am IIIA and didn't have any cancer in my breast or nodes after chemo. But when I read about complete response, several large studies have indicated that for triple negative and Her2+, there certainly is a massive association between pCR and recurrence. But with triple positive, while it's a bit of a positive association, it's not huge like those two (and hormone positive only receptor cancer doesn't show any predictive value...but in this case, I think that's because recurrence with hormone positive BC's recur mostly after 10 years and studies rarely go past 8 years).
Finally, while I'm triple positive, I kind of wonder if I'm more 'double positive'. I'm 90% estrogen positive, just 5% progesterone positive, and of course HER2+.
Thoughts?
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Special KAnother thing in common. I am in the ATEMPT trial and got most of my treatments at Sibley.
Finished all treatment except arimidex. Message me with your son's name
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posey - I too have a lower % of PR than ER. There is some school of thought that having lower PR percentages might make for a more aggressive cancer, and less effective anti-hormonal efficacy. At the 5-year point of taking aromatase inhibitors I had the BCI test done. It is both prognostic and predictive and shows two results, recurrence risk beyond 5 years, and benefit of the meds beyond five years - these results are based on the genetic info derived from the original tumor. My theory is that if testing the original tumor showed limited benefit going beyond five years, it also showed limited benefit for the five years I had already been taking Femara.
wabals - Pmed you.
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Do you get offered these tests in the US or do you have to research to find out about them and then pay? As a person receiving treatment in Ontario, Canada, I really feel we are offered so much less by way of genetic testing etc. Just wondering if you have to push for it or if it's presented up front as a good course of action to take.
I have read about the presence of PR versus lack of presence and I believe there is evidence that it's better to have the PR, yes. It doesn't seem like a drastic difference, but definitely has an effect it seems.
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Robin1234,
The vein in my neck sticks out and has since my port was inserted in August 2016. I think it is because I am thin.
The initial pain fads. The port is really wonderful and makes chemo much easier. I still hate mine. I just don't like it in my body.
Coach Vicky
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How often did you have pet scans?
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I never got my ki score or my mitotic rate. Sample was too small I think...
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posey - the BCI test was offered by my MO without any prompting from me, although I was aware of the existence of the test.
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I was offered the test also. Depending on circumstances for insurance coverage though. Mine did cover it because of my age and no family history
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My insurance did not cover it, but because I am insured and insurance denied, Biotheranostics takes over the appeal process. If they are unsuccessful, they do not charge the patient anything.
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Hi everyone. The discussion of testing leads me to three questions about surgery. 1. ) What testing and pathology should you expect or want to see after surgery? I have read about genomic assays and various tests with some being specifically mentioned as not appropriate for HER2 + patients. Sounds like a mixed bag in terms of what is typically ordered or not. The pathology report for my second biopsy did not include testing for HER2 status. This annoyed me.
2.) After neoadjuvant, but before surgery, what testing should one insist upon. Having no MRI after neoadjuvant but before mastectomy because you are "getting a mastectomy anyway". This annoys me. Going through seven months of anxiety and 4 months of chemo fun and having no measure of efficacy until a week after surgery in the form of pathology annoys me.
3.) When a "healthy" breast is removed in connection with a BMX, no pathology is conducted. Has anyone been in this situation. Given years of failure to diagnose properly the 10 cm field of unhealthy tissue in my right, it seems like the left should at least get a look under a microscope. If it were determined to be cancerous, the lymph nodes would need to be assessed.
Thanks in advance for sharing your experiences.
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Sorry if my message shows up twice...I was typing and the screen just refreshed!
In terms of genetic testing, I do think that it's kind of random as to what you get offered (and when I say that, I mean beyond the obvious reasons to get genetic testing such as young age and possible gene mutations, etc.). I personally think it depends on your MO's personal approach and where you live, etc.
As for scan testing, again I think it depends on each situation. Two years before my diagnosis, they found microcalcifications in my breast (that side was always very fibrocystic - more so than the left). They did a biopsy and that turned up negative. Then, a year before diagnosis, I had a mammo done. I'm positive my cancer was there at the time, but the mammo totally missed it due to my extreme breast density. So throughout my chemo treatments, they did about 4 ultrasound scans (or 3? Can't remember). I had one about a month before surgery and it wasn't showing any change from about 2 months prior. This was pretty upsetting. But then they did surgery and the path report showed complete response in the nodes and breast. This showed me that the tests can miss things depending on your breast density. They told me that my breast was very difficult to monitor across all modalities. My MO did tell me all the way along that pathology was the definitive statement. It is frustrating and scary for sure. I had to lie down in my oncologist's office as I felt I was going to pass out when she told me yet again there wasn't much change.
So, I guess what I'm saying is that a) you should push for tests if you want them, and b) the tests aren't King always (ultrasound and mammo and MRI). As for your healthy breast...I'm in the same situation wondering about that. I've asked them to do another ultrasound on my left to keep watch. I am thinking I might one day just have it off (because I've learned that the tests aren't 100% for me given density).
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Thanks for your feedback, Special K!
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P.S.
Does anyone else feel funny addressing people by their online names when we are talking about breast cancer? LOL. I'm Carolyn and it's nice to meet you...:)
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suburbs - additional biopsy and post surgery pathology and testing depends on several things. First, will it change any planned treatment? For Her2+ patients, particularly who have had neoadjuvent treatment, re-testing for receptors or Her2 status would be pretty moot. Same with testing a second biopsy sample - if it wouldn't change treatment choices there is little point, particularly if your first biopsy sample is pointing to maximized systemic treatment - for triple positives that means chemo, targeted therapy and anti-hormonals. Looking at a second biopsy probably wouldn't change any of those things. Same deal with having an MRI - if your breast tissue will be removed I am not sure if it is worth the expense of looking at it with an imaging modality that is less effective than the pathology that will be done on the tissue after it is removed. MRI is usually done if one is trying to determine extent of disease, or deciding between LX, MX or BMX, or making treatment choices. Also, imaging can be faulty when looking at tumors post chemo. Often they can appear to indicate a lack of pCR, when in fact it has happened. I would be willing to wait a week for the pathology than be upset or worried prior to surgery that I still have a tumor in place after having undergone chemo. Tumors may leave ghost remnants that do not contain cancer but do appear on MRI. If you had nodal involvement - or suspected nodal involvement prior to neo-chemo, some body-wide imaging might be appropriate, if it was not done prior to chemo. It is not a good idea to do that imaging too soon after surgery because it can yield false positives based on post-surgical inflammation.
I absolutely did have pathology done on the "prophy" breast and it showed ADH and ALH - have your surgeons indicated no pathology will be done? I find that unusual as everything I have had removed from my body - including my port, tissue expanders and exchanged implants have all been sent to pathology afterward.
Also, with BMX - particularly with aggressive types of cancer, my BS does SNB on the prophy side at the time of surgery. He is one of the pioneers of SNB, and not an old-fashioned or reactionary surgeon, but he feels that when you remove the breast tissue you need to do a SNB even on a prophy breast. This does cause some inconvenience because now one has two potentially limited use arms for BP or needle sticks, but it does give a more complete picture. Other surgeons don't do this, but finding a sentinel becomes a lot more complicated after breast tissue has been removed because the dye/tracer has no lymphatic path to travel to identify the sentinel. Since I had adjuvant chemo I don't know if this would be his process with a neoadjuvent patient, since the assumption might be that chemo had eradicated anything in the sentinel.
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SpecialK. THANK YOU! Your note is extremely helpful to me and for others currently undergoing neoadjuvant therapy for HER2 positive DX. I understand much better the whys of the decisions for testing prior to surgery, pathology,and what to insist upon. Significant reduction in anxiety level! Your clipboard is super charged with stress reducing pixie dust. Most sincerely appreciated.
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Suburbs, my husband is a foot surgeon and he tells me that absolutely anything cut out of a person's body gets sent for pathology, cancer or no cancer patients. He even had to send screws he took out of patient's foot. Pathology would come back as "stainless screw", which sounds funny, but it had to be sent. So, I'm pretty sure the "healthy" breast is looked at by a pathologist too.
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Hello all. This is my first post ever on any site. Although I have read numerous posts like this before I never imagined joining in. However I find myself more desperate than ever for answers but unable to get them from medical professionals. I myself am a nurse and am used to being able to have answers. I was diagnosed with triple positivebreast cancer at 29. I had just celebrated my 1 year wedding anniversary and was looking forward to starting a family. Fast forward almost 3 years later after 6 TCHP treatments, surgery, radiation, and almost 2 years of tamoxifen I find myself frustrated, scared, and anxious to conceive. I stopped my tamoxifen 5 months ago and have been trying to conceive the last 2 months with no success. I know it takes time to get pregnant but time is not in my favor. I have only been given a short window to conceivebefore needing to start more aggressive options to get pregnant. Here's the kicker chemo killed a lot of my eggs and no one knows exactly what to expect because of the lack of research. So I find myself here looking for answers from people who may have been through my current situation. I am looking for hope because I am struggling to find it on my own. Desperately wanting to be a mommy..........
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Hi Ladies wondering if any you ladies can help me with this my fish test HER2:Cep 17 ratio = 2.65 Average HER2 copy number = 12.62 Oncotype Dx: Not ordered (does not meet reflex criteria based on size) what does that all mean. I've looked it up many of times and tried doing it again and just don't understand it. Does anyoneone know and can help me? This is what my hormones are Estrogen Receptor (ER): POSITIVE (30%, weak) Progesterone Receptor (PR): POSITIVE (15%, weak) Ki67 Proliferative Fraction: 50%
Thank you
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