HER2+ and no chemo for early stage?
Comments
-
No, that is incorrect.
Unlike the "standard of care", I don't make the assumption that trastuzumab alone is what makes the difference, nor do I make the assumption that adding chemotherapy to trastuzumab is what makes the difference.
Given that the standard of care cannot identify with certainty any given patient's likelihood for successful treatment with highly toxic drugs that can and do result in complications and are known to cause cancer, that require other support drugs that are also not without disadvantages, and require frequent monitoring, and are very expensive, and that are difficult and unpleasant to tolerate for patients, while providing economic benefit to providers and no similar physical disadvanges to providers, I still personally contend that the ongoing failure to offer investigation and documentation for the addition of chemothearpy is ethically questionable.
0 -
VR, based on your comments that continue to include your limited interpretation of my personal situation with cancer, perhaps you would be willing to outline your own direct personal cancer care experience involving chemotherapy drugs such as TCH, trastuzumab, and the support drugs involved?0 -
AA...I can only speak to my experience with ovarian suppression, Tamoxifen, letrozole and Zometa. None were or currently are, how should I say, a walk in the park. I also have cataracts, had TWO life saving emergency operations, 5 blood transfusions and a host of other illnesses and operations, including shoulder, elbow and finger surgery. Despite THAT, and despite the DH's rare metabolic muscular dystrophy, cardiac disease and mental illness, neither the DH or I have the disdain that you have for medicine nor the emotional baggage that you carry that grows every year.
0 -
kayb,
I'm not sure I understand your point in your comments:
"Chemo didn't "fail to work well"
yet you indicate that by using trastuzumab to improve matters,
"survival rates of HER2+ went from being the worst to being very near that of hormone positive, HER2 - patients."
0 -
VR,
I don't imply that your medical or personal situation hasn't been difficult in its own way. However, like the medical providers who continue the present "standard of care", your note indicates you have no direct personal experience as a patient with the treatments commonly given under the "standard of care" to the majority of patients who are HER2 positive. In addition, the clinical trials offered for the non-HER2 positive patients will result in documentation applicable to medical management for patients such as yourself, but not for HER2 positive patients.
0 -
Through the DH's and my journey, we certainly made poor decisions from time to time. But one mistake that we didn't make was perceiving ourselves as victims. Every.single.day, the DH struggles. I struggle with my own health and try not to worry him about my concerns for me and US. The one thing that keeps me going is that I look ahead and not back. I can't fix the past, nor can I control the hand I was delivered, nor can I see my destiny, that is between now and when at some point we will die. What I can do is appreciate the good days that we have together and try to forget all of our physical and emotional pain. Illness has already robbed us, but I won't be a victim the rest of my life. Perhaps counseling could help ease your journey......
0 -
kayb,
The status quo for each patient is different, and personal experiences are different, so opinions vary about the issue. I accept that you prefer not to question the standard of care.
I see no clarification of your opposing statements:
"Chemo didn't "fail to work well"
yet you indicate that by using trastuzumab to improve matters,
"survival rates of HER2+ went from being the worst to being very near that of hormone positive, HER2 - patients."
0 -
VR, you are very knowledgeable, and your interpretations and concerns about the issue are important to air, as are my own.
0 -
AA...you love to go around in circles don't you? And should I begin AGAIN to tell you why chemo and Herceptin are offered together and why most of the studies that you are angry about aren't done on HER 2 positive....
0 -
kayb,I agree that before trastuzumab, some patients may have gotten some benefit from chemotherapy, which is considered to provide greater benefit to those who are HR negative than to those who are HR positive. I also agree that subsequently patients received trastuzumab and "survival rates of HER2+ went from being the worst to being very near that of hormone positive, HER2 - patients."
The OP for this thread asked the question,
"Is anyone out there ER+ PR+ and HER2+ and didn't have to do chemo?"
0 -
kayb...you are 100% correct. I also read the book and saw the movie!
0 -
AA - you said " the standard of care has been to use a type of drug (chemotherapy) that failed to work well for HER2 positive patients"
It certainly worked for you. As for the TCH experience - I have no issues following that treatment.
0 -
susieq60,
I only WISH we knew whether or not it "worked for me". We don't. I don't know that it didn't help me. However, it was unlikely to have helped in that chemotherapy is less beneficial for HR positive patients like me than it is for HR negative patients.
And, I obviously didn't need to have "chemotherapy boosted by trastuzumab" since I've never had trastuzumab, yet I remain NED.
0 -
Not knowing whether chemo worked or not is no different from any other cancer survivors journey. No one knows if their active treatment plan works...until they pass from something else. Your looking back and lamenting IS EXACTLY why I believe you need counseling. Every cancer patient at some point needs closure with respect to the treatment decisions that they make. Because you are physically and mentally suffering for so long and holding the medical community responsible for your ills, I hope you will one day realize that you can potentially help yourself by asking for help....Please AA! Don't delay! You deserve a better life! Ask for help!!!! Gentle hugs!
0 -
Ifi were you I would plan a 'trip' to the US. I go to a maj cancer hospital in Houston. My same doc works down the street at the county hospital where people have no insurance, money, etc. they receive the exact same treatment as me. When it comes to living......do what you gotta do girl. Herceptin is a must. Everyone deserves good health. It shouldn't only be for people with money.
0 -
Thanks for all the advice and opinions here, i guess the decision making is the toughest part for me... (still deciding)..
I do believe research still has a long way to go, and we just have to make the best use of information and resources we now have, and wish those in future, better luck!
My main concern is whether it's worth it to put my body through chemo for something that has no guarantees.. kinda like buying lottery! Came across this two articles today:
1) http://annonc.oxfordjournals.org/content/24/9/220...
This particular one list down the groups: luminal A, Luminal B, Basal... and in my case, i'd likely be a "Luminal-B like, Her2+" case where when it comes to personalising treatment.. there's "No data to support the omission of cytotoxics".. . it's a grey zone.. it's not a zone where yeah, for sure chemo is a must.. it's a zone which is really, in my interpretation, it might or might not work because even though chemo is designed to work, in truth, there are many cases of resistance.. hence the Luminal A group (those with ER+,PR+, HEr2-), chemo is NOT recommended. and in malaysia, that is practiced.. no chemo for those in early stage, node free ER+PR+ HER2-, because it is unlikely for chemo to be effective for them.
2) http://jnci.oxfordjournals.org/content/early/2014...
Now, this research speaks of circulating tumour cells (CTCs).. the very kind chemo is meant to kill.. yet some people who don't have it get it after chemo ??? It is examined in the light of prognostic factor and not so much as whether to have or not to have chemo/what kind of chemo.. just what are the prognostic factors based on CTCs. Funny thing is, for that sample, it's clear that chemo doesn't zap all the cells in everyone!
And I know I'm struggling to make this decision, I'm not writing to dissuade anyone, cos in some cases, it's very clear that chemo is a MUST!!! I'm just going through "the birthpains of decision making" and grunting along as it's happening! LOL!
0 -
yen...regarding the St. gallen recommendation, I think you are misunderstanding what they are recommending. The recommendation for HER 2 positive tumors is very clear. They recommend chemo, but the gray area that you refer to concerns what potion to use!
And with respect to choosing based on a "lottery"..... Most patients feel that way while they attempt to decide what active treatment plan is right for them. That's why I said to Alaska that until we pass from something else, no one knows whether they chose correctly. Alaska's case is very sad. She claims to suffer from her active treatment and blames her clinicians for her current condition. Regretting our choices down the road can be as painful as the side effects. Choose carefully and wisely. Go over the St. gallen and NCCN guidelines with a clinician whom you trust. No treatment plan is written in stone. Hopefully, you will have a trusting relationship with your doctor which will help ease your journey.
0 -
Thanks Voraciousreader, i do have two oncologist i trust, one in a semi-government hospital where treatments are slightly cheaper or free depending on the drugs (eg. FEC is free, just pay for daycare rate, but unlikely i'll do it). The other in a private hospital charging top fees, and at the same time, giving utmost comfort and also a psychological edge. Both oncologists think that the Taxol+Herceptin weekly plans are workable for me and minimise my fears on side effects (though voiced their slight concerns that it's not as sound as TCH or FECx3 + TH).
and I agree with you that no one knows whether they chose correctly.. time will tell, and whatever it tells, I believe we can choose to see the bright side of things. And I appreciate AlaskaAngel's input, every opinion is different, and thus far (as i know it) she has been factual of her experience and by no means blaming anyone. From how I see it, knowing adverse side-effects and long-term ones will also help others make a decision. I know that if and when I do go for chemo, I will only believe the best outcome, and focus on the healing and daily joys. I have on my facebook started # 100happydays where each day I will post something that gives me delight. Till then, do excuse my whining as i deliberate more on chemo..i have about 1 week to go!!
LOL! tentative scheduled in on 29th may or 5th June depending whether i wanna go at minimal cost or maximum cost.. either way, I've to pay for Herceptin and Taxol.. because it is not sponsored by the government.0 -
yen...AA gave her opinion about her lingering side effects. That is a fact. But much of what she opines about medicine's "failure" to conduct studies of aggressive cancers without using chemotherapy is misleading and potentially dangerous to sisters who might be new and less than sophisticated when it comes to understanding why, due to ethics, it is doubtful that those types of studies can ever be done.
I sincerely hope that you will be able to choose an active treatment plan that you are comfortable with and find the resources that will help make your treatment affordable. Could you speak to your local politician's office or local cancer society to see if they can help you?
0 -
Initially my breast surgeon said I probably wouldn't need chemo b/c my biopsy indicated my tumor was 2mm. I had a lumpectomy and my invasive tumor turned out to be 8mm (also DCIS). It's considered in the grey area of 5mm-1cm so the question is do we treat with chemo or not. My surgeon said to make a decision after talking to the oncologist. I had clean margins and no node involvement but I'm ER+, HER2+, grade 3. One test my surgeon discussed with me was a Mammaprint - has anyone had one done? Apparently it tests 70 gene markers to determine if an early stage cancer is likely to reoccur. I'm told the test is about $4000 but, if the score is low for me, I may skip chemo and go right to radiation.
0 -
Hiking....Once you meet with the oncologist, they will discuss with you the Standard of Care. In the meantime, I would register at the NCCN's website and look at the professional version's guidelines for breast cancer treatment. The professional's version differs from the patients' guide. So look for a red logo when looking at which guidelines you wish to click on.
Presently, the NCCN guidelines do NOT make any recommendation for HER 2 positives less than 5 mm. However, that said, there is considerable discussion amongst the world's leading oncologists whether or not to offer chemo and Herceptin for that group. For those patients with tumors larger than 5 mm and smaller than 1 cm, the NCCN guidelines suggest that you "consider" chemotherapy and Herceptin if you are younger than age 70. If you are 70 or older and have a tumor that is smaller than 1 cm, you can enroll in a clinical trial that is studying which might be better....chemo and Herceptin, or Herceptin alone.
Now, with respect to the Mammaprint genetic test. There are many threads here devoted to Mammaprint and Oncotype DX genetic testing. Here is a summary of one study regarding the Mammaprint that speaks to your question:
MammaPrint Predicts Early Outcomes in Breast Cancer
Roxanne Nelson
February 08, 2013
http://www.medscape.com/viewarticle/779016
Just keep in mind that this was a PROSPECTIVE trial....which is VERY different from one where patients are randomly assigned.
0 -
Dear hikingandhorses, am glad you have the option of Mammaprint! Go for it and do share the results! Am hoping the best for you!
We don't have these machines where I am, and I would definitely go for it to make a clearer decision if I've the option. One of my oncologists did mention Mammaprint would be useful as it's a yes/no recommendation whereas the oncotype would be less useful, because for early stage like us with HEr2+ (and there's a high weightage of HER2+ in oncotype), it would probably come out in the intermediary risk area.. a grey zone and hence not help in decision making.0 -
yen...The OncotypeDX test is NOT used for patients with HER2 positive tumors. The test was NOT designed with HER2 Positive tumors in mind. The only situation that the OncotypeDX test would be used on an HER2 Positive patient would be when there is some doubt to whether or not a patient is in fact HER2 Positive. We've had some patients here have the test and find out that they weren't Her2 Negative! Or they were less "negative" than previously believed. However, the OncotypeDX test should NEVER be used on an HER 2 Positive patient if they were KNOWN to be POSITIVE. And, if a patient here in the United States were HER2 Positive and had private insurance, it is unlikely that the insurance company would pay for the test.
0 -
Yen....regarding the machines.....Patients' physicians from all over the world are now sending their specimens to the folks that do the OncotypeDX testing here in the States.0 -
Yes, Voraciousreader, my oncologist did say that's possible, though it'd take time, and i only got to know that last week..it's already one month after my surgery.. i don't have that luxury of time if i want to maximise the benefit of chemo, as i read in one of the studies, efficacy is higher when done within 30days, less when done within 60 days.. so i'm reading it as the sooner the better, plus he also said, just based on my hispathology report and the fact that the oncotype place a high weightage on HEr2+, it would likely come out in the intermediary risk profile.. and as such not much of a help in my decision making. I guess that's why HER2+ tumours aren't sent for testing. By the way, Voraciousreader, what does Her 2- (+1) means?
0 -
Thanks for the article Voraciousreader! It seems the more I read, the more I find....and the more others find! I could spend days reading all of the information available! I appreciate it when people post links to things I haven't found yet.
0 -
Yen....Here's a clinical trial explaining HER 2- (+1). Basically, in order to be classified as HER2 POSITIVE...there is a threshold of how much expression there is of the HER 2. So, presently, HER 2 NEGATIVE would be considered of there was NO expression of HER2, which would be HER2- or if there is a little HER2 expression it is labeled HER2- (+1) and then there is also HER2, still considered NEGATIVE and labeled HER2- (+2).http://www.cancer.gov/ncicancerbulletin/062612/page6
Yen....no one can guess what the OncotypeDX score would be for HER2 POSITIVE patients because it is a prospective trial using data that DID NOT include HER2 POSITIVE patients. The driving idea behind the OncotypeDX test was based on the FACT that physicians knew they were giving chemo to too many patients. However, they couldn't say with certainty who EXACTLY could avoid chemo because the risks outweighed the benefits. They knew that many ER positive tumors could be treated with endocrine therapy ALONE. So the OncotypeDX test was developed to figure out how NOT to overtreat patients. Physicians also knew that HER2 positive tumors were aggressive, so NO patients who were HER2 POSITIVE were part of the study. Physicians knew those patients needed more aggressive treatment for their more aggressive tumors.
0 -
There are several ways to test for HER2 status - your path report should identify what testing protocol was used to determine your status. The higher the +, the more positive the result. See this from DAKO - http://www.dako.com/38602_19feb10_herceptest_scoring_guidelines-breast_ihc.pdf
0 -
Hike...Knowledge is power!
In order to make an informed active treatment decision, it is necessary to read as much as possible...two or three times...and then investigate and read some more. I believe that anyone who has the wits about themselves to find themselves here, is smart enough to do their own research and come to make the "right" decision regarding their own treatment protocol. Believe it or not, but even I learn something new EVERY SINGLE DAY. And the one thing that I learned the most, but didn't realize it then, was....my oncologist had given me good solid information so that I was able to make an informed treatment protocol that worked for me. Months, into years later, I realized all the information he had given me earlier was great info. I think everyone deserves and should receive the same care. Sadly, I know for some that is NOT the case. Furthermore, I also respect that sometimes even if we think we are making the right decision, bad things will still occur....But I maintain, arming yourself with the best possible information and choosing a team whom you have trust in, will make this journey easier.....0 -
thanks for the explanation! I was confirmed HEr2+ on 3 occasions, biopsy prior to surgery, and using herceptest (the DAKO thingy) as well as SISH (similar to FISH).
0
