Triple Negative Stage IV
Comments
-
Hi Keldel,
I am from Quebec and had the BRCA testing done . Since it is paid for by the government, my hospital had to have it approved first. The whole process took 4 months.
Lotusblossom
0 -
Kelly & LotusBlossum - The Foundation One gene testing is different than just the BRCA1/2 testing. The Foundation One gene testing uses tissue sample to test over 250 genes and found my BRCA2 mutation when the Myriad BRCA1/2 buccal wash (dna from mouth) test did not and Myriad only tests for the BRCA1/2. Foundation One tests for so much more so felt it was worth it, especially when it also found the BRCA2 mutation plus a couple of other mutations that will help with targeting my therapies.
0 -
I have results of my lymph node biopsy: Er+ (50%), Pr-, Her2-.
Does this mean that my lung met has the same pathology? There's no way
to say, says my oncologist. My lung biopsy yielded no hormone status
information. Is this a good thing? I always thought my cancer was
triple negative.I still want to have the liquid biopsy done. My
doctor is requesting it but he is sure my insurance company will not pay
for it.We flew to Indiana last week. The flights (AA) and
travel agency (Expedia.com) were awful. First flight was delayed, then
cancelled. Hotel cancelled our reservation because we "did not show
up". What a nightmare. But a big celebration was had by all when my
son and his girlfriend graduated with their JD's. We are so proud!!!Hugs to all,
Brenda
0 -
Brenda this will give you a few more treatment options. It is possible to have both er + and tnc cells. I have heard of mets changing hormone status also.
0 -
Brenda,
I converted from being ER+ with my primary to ER- after a bone biopsy on my mets. My oncologist is now treating my disease as TNC.
BUT I have a big question, are my mets truly ER negative?
It was taking a long time for my biopsy results to come through because, according to my oncologist, the biopsy had to be de-calcified. I began to look up how long that process would take because I was anxious to get the results and what I found gave me pause for thought. (Below is some of what I found, sorry it is long!)
In my case, it seems likely that the biopsy may not have been treated correctly. I had my surgery at one of the satellite hospitals nearby which does not have a big path lab, certainly not one that does receptor status. I went to down to OR at about 5pm. on a Friday. It is very likely that the biopsy sat on the side, hopefully in buffered formalin, until the following morning at the earliest when it was sent to the main hospital. The main hospital has a weekend, not a full service, working on Saturdays. If you read below, the optimum time for fixation of of tissue to test for ER receptors is 6 to 18 hours. Less than that or more than that can result in a false negative. De-calcification of bone samples will also result in a loss of receptors.
If there was any chance that your primary tissue sample was treated sub-optimally, it may have given a false negative.
Although there is no question that receptors can change and some of these changes can accounted for by biological (true change in receptors) others maybe the result of technical issues giving rise to false negatives.
The DESTINY study published at the end of 2011 found that in 2 cases where the receptors changed from ER- to ER+, a re-examination of the original primary showed ER+ disease. Interesting, no?
I discussed this with my oncologist and he has agreed that if we have an easily accessible tumour we will do another biopsy. At the moment, I am on weekly taxol and have bone and lung mets. He hasn't rescanned since I started treatment but I am in favor of treating aggressively, in any event.
Finally, congratulations on being found ER+. Many more treatment options will be available to you.
----------------------------------------------------------------------------------------------------------------------
This is some of what I found.
Elizabeth L.
Wiley, MD, director of surgical pathology at the University of Illinois,
Chicago College of Medicine, spoke to technologists and pathologists at Leica
Microsystems’ Broad Spectrum Histology Symposium Oct. 9 in Chicago. An edited
transcript of her lecture, “Breast Cancer: Prognostic Markers, Fixation, and
Processing,” follows. Added Jan 2008.From lab to lab, service
to service, person to person, there are many factors that can affect estrogen
receptor testing: who is grossing, whether it is a weekend or a weekday, what
type of specimen, what fixative is being used, etc. Once the
immunohistochemical stains are done, how they are read and reported also vary
from service to service.Let us look at
preanalytical factors affecting estrogen receptor determination. Even the time that a breast
cancer sits in the operating room or on the laboratory bench can affect the
results of estrogen receptor testing. Estrogen receptor degrades in unfixed
tissue. Tissue sitting at room temperature for four to five hours loses a
significant amount of estrogen receptor. It’s very, very important to get the
tissue from the patient to the pathology laboratory and from the grossing bench
into fixative as soon as possible. If you’ve got a surgery service that
operates late into the evening, you need to make arrangements with the OR staff
to make sure the tissue is attended to, gets into fixative, and doesn’t sit
overnight degrading.The type of fixative also has an impact on the results of
estrogen receptor determination. Most labs use 10 percent buffered formalin.
It’s a great general fixative. It doesn’t make the tissue too hard, and it
fixes tissue reasonably quickly. Optimum fixation time for estrogen receptor
activity is between six and 18 hours for buffered formalin. Less than that and
more than that, you’re going to get a diminution in estrogen receptor or even a
false-negative. The optimum fixation time also includes processor
time. Consider your tissue is sitting in a processor over the weekend in 10
percent buffered formalin for up to 48 hours. You may well end up with
false-negative reactivity or at least lowered estrogen receptor reactivity in
breast cancer. Too little fixation is also a problem. It is a problem
that I encountered in testing for estrogen receptor on breast cores. Our breast
cores on the biopsy processor were getting a total of eight to 10 hours of
fixation. The laboratory changed its procedure and started processing
immediately after loading biopsy tissue. All of a sudden my breast cores were
getting only two to six hours of fixation. And there was a falloff in estrogen
receptor activity.You want to avoid fixatives that go below pH range of 7.4.
Decalcification procedures also destroy estrogen receptor. If you are dealing
with bone marrow biopsies or bones where there is a question of metastatic
breast disease, you need to talk to your hematopathologist about setting up an
alternative protocol so that you have some tissue associated with the bone
marrow that hasn’t gone through decalcification.________________________________________________________
When to order a biopsy to characterise a metastatic
relapse in breast cancerT. Foukakis,G. Åström, L. Lindström, T. Hatschek and J. Bergh
ESMO Congress Vienna, Austria 28 September – 2 October 2012
why is there discordance in receptor status?
The multitude of studies carried out (13 studies with 1773 patients for
ER and 23 studies with 2845 patients for HER2) unequivocally demonstrate the
discrepancy of receptor status between primary tumours and relapses
(Tables 1 and 2). However, the reason for this discrepancy is less clear and both
technical and biological explanations have been discussed. The use of various
methods for ER (biochemical versus IHC assays) and HER2 (IHC versus FISH), the
variability caused by sampling methods [fine-needle aspiration (FNA) or core
biopsy versus surgical excision in the primary tumour] and differences in
analysis of samples from different tissues are all possible technical caveats
that could cause a false discrepancy. In the study by Amir et al. [36] discussed above, it was shown that FNA and biopsy
of bone led to reduced ability to analyse receptors. Even when the same
analytic method is used, the reproducibility is suboptimal, especially for ER
determination [39], but to some degree also for HER2 [40], which could lead to a false discrepancy rate.________________________________________________________
A report on the medical advances that have
extended survival and quality of life for women living with metastatic breast
cancer and a look at promising new research direction.
Confirmed Speaker: Julie R. Gralow, MD
Director, Breast Medical Oncology, Seattle Cancer Care Alliance
Clinical Research Division, Member, Fred Hutchinson Cancer Research Center
Professor, Medical Oncology Division, University of Washington School of
MedicineStreamed
live on Apr 26, 2014 (my transcript of Dr Gralow's answer in response to biospy of metastatic disease)I am on the side of at first metastatic
recurrence if you can biopsy it, one prove it is metastatic disease and two
reconfirm what the ER and HER2 are because it can change.And then after a period of time when
the tumour maybe has had many therapies and now it is progressing again,
reconsider another biopsy because it could have changed. I think in the United
States most of the thought leaders of breast cancer are leaning toward
recommending not just a biopsy at recurrence but periodically over the course
of metastatic disease. I know we shouldn’t base out practice on single case
anecdotes, but just last week I had a patient who all of sudden now with the
new biopsy converted to being HER2 positive and she was clearly HER2 negative
before and now I have all these other treatment options I can offer her.Bone
biopsies are hard. A lot of times if you do a core biopsy of the bone and you
have to decalcify, it will make the staining be negative even when the tumour
is not really negative, so it is complicated to do.And be careful when you do
bone biopsies. We actually do aspirates and we have a very dedicated group
where they don’t have to get the calcium out of the bone so they don’t have to
process it the same way. And we get much more reliable staining. I have had
patients who have had bone biopsies that have said it is ER negative and I have
said that doesn’t make any sense. And we have gone in done it by just pulling
out cells and staining them it is still ER positive. It is actually a fluke of
the way we have to process the bone. So be careful with bone biopsies.0 -
Springwatch,
Yes, this is very interesting. So I take it your mets are only in the bones, and a tissue biopsy is not possible? That even makes it more interesting because TNBC usually attacks soft organs first, not the bones. The good thing about your mets is that bc patients survive a lot longer just with bone mets. So I wish you the best, hope you find out more and that your bone mets get zapped or stabilized!
Hugs to everyone!
Brenda
0 -
CatWhispurrer and LotusBlossom - thank you for all the additional information. My MO says BRAC 1/2 test is done here in Halifax so he is requesting that. He also says that gene testing like Foundation One is done by here in Canada so he is investigating that too. We had to delay my chemo 1 week due to a low white cell count. Only 2 more to go and then another CT scan to see what is going on (but a physical exam he did says the ones he could feel before are gone.)
Brenda - my MO says the status can change for new growths (The cancer mutates?) ER+ gives you some more options now.
Kelly
0 -
Hi Brenda,
My mets are in the bone and lungs. So far my lung mets have been asymptomatic but I have had a lot of pain and issues with my bone mets. My onc did a bone biopsy as the surgeon was going in to insert a femoral rod in my femur. It was when I started trying to find out more about bone biopsies that I found out just how unreliable poorly prepared tissue samples, bone in particular, are for measuring receptor status. My onc could order a biopsy of my lungs but I am having weekly taxol at the moment and we are hoping that the treatment will shrink my tumors. I would have to come off treatment while they did the biospy. It remains an option in the future and he has agreed to do one if we have a met that is easily accessible. However given the circumstances surrounding my bone biospy, it seems likely that the receptors, if there were any, were destroyed by handling in the OR and subsequently in the path labs. I took arimidex for 3 years but that failed. We don't know what came first, the bone mets or the lung mets. Personally, I am leaning on the side of the bone mets developing before the lung mets, as the bone mets are very extensive.
The Destiny study was small in number,about 121 participants, but there were two women who apparently converted from TNBC to ER+ disease. One of the conditions of the study was that there had to be archived tissue samples of the primary tumor available to study. When the original primary of these two women was re-examined it was ER+. True receptor discordance was not seen in any patient who was originally diagnosed with TN disease in their primary. In other words, the primary and the met were both TN. When you wrote that you had apparently converted from ER - to ER+, this study came to mind immediately.
I hope that your new treatment plan includes hormone therapy and this keeps you stable for a very long time.
Edited to add: Tumors are genetically unstable. They can change from HER2 + to HER2 -, and visa versa. Loss of hormone receptors is seen more frequently than gaining a hormone receptor. Loss of the PR receptor is seen more frequently than loss of the ER receptor.
0 -
So when I have a test to see if my chemo is working, i.e. CT-scan after a few months, if my lymph node tumor disappears I will never find out if I indeed had an ER positive tumor. That's because the carbo/gemzar that I am presently on is systemic and works for all types. The only way I will find out for sure if I really have an ER positive breast cancer is if the chemo does not work and I go on something like tamoxifen and my cancer regresses as a result.
BTW my oncologist is also requesting a blood biopsy. It was difficult to convince him, but he finally did it. I will let you know what the results are after the test.
0 -
Brenda,
If your lymph node biopsy came back as 50% ER + than the cancer in there was definitely positive. The point I was trying to make is that the biopsies can sometimes give false negatives because of the way they are handled in the pathology labs. I have not read anything to date that suggests you can get a false positive result because of technical issues in the pathology labs.
Chemo will work for hormone + and TNBC, especially higher grade, rapidly dividing tumours. If you get to NED or stable after your chemo it is possible that your onc will suggest going onto one of the anti-hormonals because you have tested positive in your lymph node. I am sure he will monitor you while you are taking them.
I haven't heard of using a blood test to analyse receptors before so I will be interested in you results.
0 -
Thanks, springwatch. I went back and read your post again.
Here's a blurb about LiquidBiopsy:
"LiquidBiopsy detects and enumerates nucleated cytokeratin
positive and CD45 negative cells (target CTC cells) by immunomagnetic
separation and immunofluorescence. The test provides efficient and
reliable CTC recovery from patient samples with a 3-day turn around.By
using LiquidBiopsy testing alongside the standard of care for cancer
patients, oncologists are provided timely, valuable insight into cancer
progression and response to treatment*. For pharmaceutical researchers,
CTC testing can provide valuable efficacy information during early stage
clinical trials."The liquid biopsy test for breast cancer is called "ClearID".
Hugs,
Brenda
0 -
Brenda, Thanks for the info on the liquid biopsy. I had not heard of it before.
I can see that it it has a place in determining progression before scans or symptoms suggest treatment is not working.
Have you had the test and results back yet?
Hugs,
SW
0 -
SW,
I have not had the test done yet. I am waiting for my insurance to say whether or not they will cover it. The people who are testing me will have to get that information first. They promised me that I will not be charged, they just need to know that a request has been made and insurance either approved or denied (or willing to cover a little). The name of the company is Cynvenio Biosystems and the test for breast cancer is called ClearID.
Hugs,
Brenda
0 -
The big downside to the test is that they could come up with mutations for which there is known treatment. What do you do then?
Dr. Massimo Cristofanilli of Jefferson Hospital in PA uses this test routinely to keep track of his breast cancer patients.
0 -
Hi Everyone,
I am writing on behalf of my mom, Blanche, who has Inflammatory Breast Caner (diagnosed in Nov 2013 with stage III). She started
4 rounds of adriamycin and cytoxin in late November. Had initially good results - tumor shrank but started to grow again by the third treatment. Onc said not to worry - stay the course. In Feb 2014 she started herceptin and taxol weekly. Things continued to grow during that treatment. For 8 weeks my mom complained to the onc that they were growing - she literally said "i'm not worried". Finally we convinced her to order a PET scan. Did that on April 14. Tumors have grown and she has mets to two sites in bones and has plueral effusions in lungs. Got a second opinion from a respected Brest Cancer onc in San Diego who said this was the worst case secenario. She started palliative radaition right away (did that for three weeks). Did a breast biopsy - the tumors had changed - now triple negative. The Onc says there is nothing more to offer. We are on hospice and my mom is declining fast. I am writing to see if anyone has any suggestions that I might bring to the onc?
Many blessings to all of you and your families as you navigate this journey.
Meghan
0 -
Dear Meghan,
Triple negative metastases respond well to carboplatin or other platin drugs. It's usually given in combination with another drug like gemzar or a taxane like taxol, taxotere or abraxane. Those doctors can't just say there's nothing they can do, unless the side effects of chemo are too severe.
I have been getting carboplatin with gemzar. I have been lucky with the s/e's. I just get tired on the 3rd and 4th days after infusion.
Thanks for being a good daughter. I'm sure your mom appreciates you!
Brenda
0 -
Meghan,
I wish I was closer so I could go yell at some drs'. Make them keep trying, not to give you false hope but there are still lots of drugs that can help. I know that I was very close to going to hospice but my MO tried me on carboplatin and xeloda and my tumors have shrunk.
We have to stand up for ourselves sometimes. You are a sweet daughter to stand up for your Mom
0 -
Kelly - did you get another CT scan? What did it show?
Brenda - did you have your test done?
I will have #12 taxol next week, then another scan to see where I'm at. I have started some pain in my right ribs so I am scared of results. I am going to Emory U in Atlanta next week to check on a PDL1 clinical trial. My MO doesn't think I should do it at this point, but they have one opening right now. MO would like to save that treatment for later down the road.
Thinking of you all!0 -
Cat, YES I DID TODAY!!! It was chemo day anyway so they just took more blood. I should get the result in 7 days!!!! I don't know why I am so crazy excited about this. It could really give me bad news, like sorry, you have 200 mutations and there are no known treatments for half of them. Or it could be really good news like, well, you are almost like a normal person with a normal person's blood. This would mean (I think) that I would have 5 or less circulating tumor cells (ctcs) per ml of blood. The best thing about this test is that it would automatically recommend treatments that are available, it is not as invasive as a ct-scan or a tissue biopsy plus it only costs about $2500. I'm lucky I didn't have to pay even if my insurance denied it. The company is still out of network and is still collecting data.
Pain in ribs could still be residual pain from radiation. Don't worry too much.
Hugs,
Brenda
0 -
Hi Cat,
Not yet. I have my hopefully last chemo (#6) on Wednesday if my bloodwork is ok. Then it will be about 3 weeks till they do the CT scan. at my last checkup my oncologist said he couldn't feel any of the lumps in my neck but ofcourse there are some that he can feel like the ones on my lung. Anyway I took it as a good sign! But I am getting anxious about the scan now - will I need more chemo? Radiation? Something else? I will just have to wait and see.
I too have pain in my ribs but my bone scan was clear. Doctor says its from previous radiation.
Good luck with your scan.
Brenda - best wishes on your test results.
Kelly
0 -
Thanks, Kelly. Best of luck to you, too! Stop worrying.
Hugs,
Brenda
0 -
Quick update. The carbo is kicking a$$!!! The tumor on my back can't be felt and liver size and functions are back to normal!!! One more round and I think they will scan to see how it's getting the lung and lymph nodes in chest. If they can get me into remission (their words) I can stay on the Xeloda for maintenance.
The only drawback is the the xeloda is causing the hand and foot syndrome but so far it's bearable. The shortness of breath is gone and I feel better than I have since last Nov.
0 -
Lost,
This is wonderful news!!! I am thrilled for you!!! Hoping that your scan shows remission so you can get a breather from IV infusions. Cheers!
Brenda
0 -
Wow, that is great news lostinmo! Wishing for your scan to show more good news.
Kelly
0 -
Well turns out the hospital in Ontario will only do tumor profiling for residents of Ontario (its a trial program). So my oncologist says we'll need to send my tumour sample to the USA for testing. He suggested Foundation One or Caris Life Sciences. Does anyone have a recommendation of one vs the other?
Update...My chemo is getting pushed to next week because of low counts. So I'll not have the CT scan for about 4 weeks. My onc says not to worry, he thinks I am doing great. I hope he is right.
Ke
0 -
Great news Lost! Praying for continued success with the chemo.
Ke - my doctor used Foundation One although I don't know if one is better than the other. They had a good turn-around time.
My doctor moved the scan up to yesterday because of the new pain. The
results today showed nothing new, and the nodules in my lungs had shrunk
some more (about 7 mm now). The thing that bothered me is that the
radiologist who read the report said my neck scan was clear!! I have
several large nodules in the left side of my neck and they actually feel
bigger with a few smaller ones that I now feel below them, so I have NO
confidence in whoever read the scans. My doctor is going to contact
the radiologist and ask for some explanation and call me back.
So,
got #12 of the taxol today and continuing on. The pain is probably
from the accumulating effects of chemo. My feet are a little more numb
too but tolerable right now.I didn't go to Emory U as they were in a hurry to get started and I am not ready at this point in my treatment.
0 -
Tina, you should have more than just one radiologist looking at your images and signing your reports. Your onc should be concurring with their findings. My onc shows me all my scan results and points out areas of concern. (It's usually the ones that are lit up.) I take it that your pain is in your neck and that's where the enlarged lymph nodes are?
When I was first diagnosed I felt "betrayed" by my body. I think it's a good thing that your body tells you there's something wrong. You seem to listen well to your body.
Take care.
Brenda
0 -
Hi Cat, I think its going to be Foundation One. It seems to be the one most people use and they got back to me about some questions I had very quickly. I appreciate your input.
Definately you need that scan rechecked, something doesn't sound right. A friend of mine had a mixup because she had the same last name and first initial as someone else in treatment.
Take care
Kelly
0 -
Hi everyone -
I was reading back a little bit and there was some discussion about receiving Herceptin for her2-low. I am one of those people... I am receiving Halaven and Herceptin because my oncologist is one of those docs that are convinced it will help certain patients. He thinks my cancer "acted" like a her2 cancer. I wish I could reiterate what he told me to articulate this better. Either way, my her2 score was 1+ and my ratio is 1.48.
My liver enzymes were through the roof prior to starting treatment (we thought there was a blockage but they couldn't seem to find one with the ultrasound). After just one infusion of the Halaven and Herceptin, my enzymes came way down. AST went from 538 to 153, ALT went from 248 to 110, and Alk Phos went from 319 to 204. Most importantly I think, however, is that my Bilirubin went from 6.7 to 2.0!! That was scary... my eyes were yellow and everything. My liver actually hurt. I just had my second infusion last week, and had labs today. I am pretty anxious about hearing the results of these labs. I really hope that those numbers continue to go down.
So, I have no idea if the Herceptin has anything to do with it - but for all intents and purposes I am still considered triple negative.
The reason I'm writing all of this is because I'm curious if anyone else has any similar experiences?? Whether you were on a trial for her2 low or anything having to do with triple negative and herceptin.
Thanks!
0 -
Hi everyone. Its been a while since I've checked the boards. So here's whats going on:
I have started 3 clinical trials.
#1. A new drug called CB 839, a glutaminase inhibitor. I've been on it for 2 wks, and so far cannot tell if its working or not. I had to be off chemo for 4 wks before, and the wk before and 1st wk of the new drug, 4-5 more little nodules came up on my chest and breast skin. Wk 2 had no new nodules, but I really haven't noticed any shrinkage yet either. I get 8 hrs of blood draws, every hr, to test the pharmokenetics of the drug, every Wed. So we will give it a few more wks to see if it's helping at all.
#2. METAMORPH study(at Univ. of Penn) to identify and study tumor markers in the blood. This may help future patients quantify the amount of growth or shrinkage of the cancer. I won't necessarily have access to these findings, if new markers are found. (They're looking for add'l markers, Like the CA 15 and CA 27 ones)
#3. COMET study (at Penn). It's a genomic testing and education study. A panel of 27 gene tests for mutations was performed at Penn's Center for Personalized Diagnostics (CPD). I also was given an education session to discuss what it means to have this test, and what the results could indicate. I was then given a questionaire to answer. I guess they want to know if the education session is worth giving to people along with the gene panel, or if they should just do the tests without education.
My tests showed 2 mutations, one on the TP53 gene, and one on the RB1 gene. My MO needs to confer with the tumor panel and geneticists and physiologists to interpret these findings, and then she and I will discuss what it all means. She did mention that with the RB1 mutation, The trial phases of a drug targeting that mutation is almost finished, and it's possible a new drug will be on the market in 1-1 1/2 yrs.
So I have been very busy with all of the pretrial tests (CT, PET, Echo, biopsy, etc.) and now with the full days of blood draws, not to mention all of the end of school year things going on with my children. In 2 wks, we go on vacation to Punta Cana, and I am SO ready!!
I hope everyone is stable or doing better. I think of you all often.
Lori
0
