Early stage treatment discussion

Jean · 08-26-2010, 04:05 AM

I thought this worth while for viewing especially for the newer members who are early stage. I was happy to finally hear that node negative should not be discounted when considering treatment.

http://news.cancerconnect.com/early-...breast-cancer/

AlaskaAngel · 08-26-2010, 08:19 AM

Hi Jean,

As you know, there is always room here for polite, respectful disagreement.

Why would it be especially important for the "newer members who are early stage" to view the information in the link?

They happen to be the ones who would be the least informed, most upset and panicked, and the most vulnerable to answers that imply that there is a quick fix available that will save them if they just jump on board ASAP.

AlaskaAngel

Jean · 08-26-2010, 08:31 AM

AA,
I am happy to explain to you.
When I was first dx. even though I was seen by what was considered to be top dr. in the field (and I am not saying they are not) only that many follow standard of care even when there are newer cutting edge choices that should be explained to the patient and allow the patient to make their own choices. As a newly dx. women I remember how I felt needing all the information I could gather and wanted to connect with others who were early stagers who could possible share some information that would help me - assist me - to dig further on for additional information. I did not think this video especailly knowledable for stage IV women. This video states from a qualified dr. the newer standards being followed today -(even though there are still dr. who will not treat early stage patients). It is still my belief that a women needs to know that all top dr. in a field do not think alike.

One of the outstanding comments that was menioned by the dr. was not to be convinced that a node negative dx. is 100% safe. While node negative is very favorable many have been mislead by this. I believe knowledge is power and women who are early stagers usually for the most do not know many of the detials we later come to be familiar with.

While I agree that it is most upsetting for all who are newly dx. I do not believe this video is threatening nor upsets a newly dx. women, but is in fact helpful.

Also I disagree that the video in any way displays a quick fix. There is no quick fix with any type of cancer. We all realize that while being dx. early does help this is still a very serious dx. I understand the video to be another tool of sharing information of new treatment choices which assist a dx. patient to make chocies.

I am a stronger advocate of early stage information as I experienced so much controversary during my own dx. in 05. Each year we see progress and yet often we hear from a newly dx. member information that is not up to cutting edge. Just recently on my last onc. visit my dr. was sharing with me how a women came to consult with him she had a tumor under 1cm was Her2, the other dr. said no herceptin treatment would be needed and did not even offer herceptin. I think this decision should be up to the patient and all inforamtion on all treatment needs to be offered. Most often a newly dx. patient does not even know the right questions to ask or what the names of the drugs are. It is a huge learning curve.

Again, I do not believe this video is making a statment to anyone to "jump on board"
and do anything, rather offering new updated information. I don't think this video is offering much to a later stage patient.

Hope this explains why I noted this would be especially worthy of viewing for newer dx. patients as anyone over stage 1 is usually given treatment while earlier stage patients are not. It is currently as the video states by the dr. that Herceptin is standard of care with Her2 dx. Of course the treatment choices are always up to the patient.

Jean

jean

AlaskaAngel · 08-26-2010, 09:07 AM

Unfortunately, the video chooses not to openly explain to patients that the only way to have Herceptin for their treatment plan is to have chemotherapy as part of the plan, which makes the video presentation a recommendation favoring chemotherapy. It does not take into account the fact that, based on characteristics other than HER2 positivity, these same patients may not have been recommended chemotherapy at all. If the doctor in the video is being truly informative without a bias, why would she not mention that chemotherapy is a requirement for adjuvant Herceptin (or lapatinib) treatment?

Jean · 08-26-2010, 04:40 PM

AA,
Did you view the entire video? There is a capiton which moves along and you click on it. During the discussion she states that herceptin is a biologic agent and not chemo.
She also goes into great detail during the caption of breast cancer biopsey results of the range of therapies.
She goes into great detail about different treatment choices and why based on biopsey and after a full evaluation. They also discuss hormone therapy and radiation and chemo etc. I certainly cannot answer why Dr. Denise Yardley of Sarah Cannon bc research center did not say herceptin only with chemo is something you would have to reach out to her about her video. (Maybe she thought she was already clear on that)
don't know just a guess on my part.
I certainly cannot answer this. But I do believe that most who watch this video have a clear understanding of the treatments choices and risk reduction of recurrence from treatment. She does say that herceptin is a biologic agent and therefore would be used along with chemo. Now remember there are some dr. who are willing to treat with just herceptin, but insurance companies will not cover the treatments (most of the times). Also the studies with hercpetin were with chemo. But then that is an old dicussion on this board. Along with why not have a trial with just herceptin?
I cannot begin to answer this. I still say the she does a great job in presenting the choices from the point of surgery and biopsey and forward.

She can be contacted at the Sarah Cannon Research center in Nashville Tn. why not reach out to her I am sure she will answer your question. I find most of the dr. are very pleasant anytime I have called them and reached out.

Jean

AlaskaAngel · 08-26-2010, 06:24 PM

Jean,

I reviewed the link you presented in its entirety, and we are evaluating what it (the video alone)presented, not what an extended discussion offline with the center or the doctor might tell us about information that was not included for the audience here to see and hear and consider.

The interviewer in the video brought up the subject of chemotherapy, not the doctor. He stated,

Q: So patients have to make a decision about hormonal therapy, they have to make a decision about chemotherapy, they have to undergo genetic testing.

His statement indicates that patient can pick and choose among them, to have or not have any of those options.

Interestingly, the interviewer in the video specifically asked the doctor,

"What patients benefit from HER-2/neu therapies, and what therapies are available for early stage cancers?"

It was the doctor who chose not to mention that therapies that are available for early stage cancers include chemotherapy, and to specifically mention only two therapies, which she identifies as "drugs".

The doctor was asked what THERAPIES are available for early stage cancers. From responses given by the doctor, there is no way for a person unfamiliar with breast cancer treatment to have any idea that chemotherapy would not only be one of the therapies available but is required for the use of the "drugs" she discusses, under current accepted guidelines.

The newly diagnosed should be told up front that chemotherapy is not optional if one is to receive the other "drugs" like trastuzumab and lapatinib under currently accepted guidelines for breast cancer treatment.

1rarebird · 08-26-2010, 06:39 PM

I have not seen the video (don't have broad band so even YouTube is foregin to me), but I agree that many early stage patients really do want all the information--the frightening parts too--when they receive their diagnosis. I know I did. I was frantic with my efforts to read and learn as much as I could about my situation. I only wish I had found this group much earlier. I would have leaned much more about the options available to me that I didn't get from talking to my doctors. I am sure now I would have signed on to the Allto Trial as a result. The chance at a tyrosine kinase inhibitor is just too valuable for Her2+ to pass up--cardiac risk or not. Too late for me now--I didn't have enough information at the time. I also would have found out about supplements that had the possibility of helping my chemo, radiation and Herceptin treatments do their work better. I didn't have the information until the window opportunity was closed. So, I do believe knowledge is power and and as long as a person keeps their eyes and ears open and gets confirmatory information from more than one source before making a decision, then they will at least feel better about the choices they make. And then the rest is up to the Creator, IMHO.

bird

Jean · 08-26-2010, 06:50 PM

AA,
You asked me why the dr. did not mention chemo with herceptin right?
You wrote...
Unfortunately, the video chooses not to openly explain to patients that the only way to have Herceptin for their treatment plan is to have chemotherapy as part of the plan, which makes the video presentation a recommendation favoring chemotherapy. That is your assumption not everyone who views this video will see it as recommendating chemo.

I do not see the video as one recommendating chemo, it is from the trials that herceptin is given with chemo. (Vogel studies)
I answered you.... I will do so again and address your statement.....I can not answer for the good dr. why she did not make it cyrstal clear that Chemo and herceptin are given together, that is why I said to contact her off line.

The video still offers great information and has great merit. Instead of beating me up with the video contact the dr. and ask her why she did not make the point crystal clear.
I cannot answer for her. I did not produce the video or make the video, I saw the video and believe it merits viewing. I can and have only posted the video to share with all.
As I have often pointed out to you, I do not join the site to be on a debate team. Did that in school....and now years later have moved on to running my business and being a bc survivor and helping early stage members, being a lover, a sister, a mother, and wife..I am all things called woman and I am not going to get into this pointless debate when we all know that herceptin is not given without chemo. Besides this is not a debate this is splitting hairs on what? If the dr. made it clear to you that herceptin is given with chemo.

The path trastuzumab has taken is a demonstration of how progress is made. Treatment changes as evidence accumulates and new knowledge is acquired. However, the path is also a demonstration of how slow and tedious the process can be. The problem is in not knowing if and how trastuzumab will benefit different groups of patients, for example, those at different stages of disease or those with different tumor characteristics. Other questions still needing answers concern optimal timing, optimal dose, and how trastuzumab behaves when combined with other treatments.
Treatment protocols currently in use are based on scientific evidence from completed clinical trials. Clinical trials by their very nature investigate specific treatment regimens in subjects who are carefully selected based on their personal and clinical characteristics.

I am not a card carrying advocate of chemo. As the dr. said in the video after full evaluation one will examine their risks and make proper treatment decisons. Let's not blow up a good thing to become a match about chemo/and /herceptin.
Chemo and herceptin is a very sore spot for you but we still must face the truth that hercpetin is not given for the most part without chemo. Those are the facts, I don't like it anymore than anyone else. But until the dr. do the trials on herceptin alone and start to develop treatments without chemo for her2 with herceptin alone this is what we have. Again I do not know why the dr. did not state it maybe she wanted to trick the public and hurt them, is that the reason? Trick poor sick women into chemo?

jean

AlaskaAngel · 08-26-2010, 08:57 PM

Jean,

You shared a video for everyone to consider its value and expressed your personal opinion about it. As people who are not new to cancer, we each have different knowledge and perspectives about it, and are entitled to express them politely. That includes being willing to question something that is presented to us all, and entertaining different points of view about it. People are entitled to make up their own minds about what you presented and the questions that I presented about it.

AlaskaAngel

Jean · 08-26-2010, 09:04 PM

AA,
Yes I put the video up and said I thought it was worth viewing. Yes you have the right to question, but what purpose does your question and debate offer?
I am unclear as to what you are questioning, the video, the dr. me? The fact that the videdo is worth viewing or unworthy of viewing? You make statements that the video is pro chemo etc. when the dr. is not advocating anything less than making proper treatment choices based on biopsey and evaluation of such.
A statment that the video is worth viewing you debate with me ?
You quesiton and debate that the dr. did not state herceptin with chemo clearly, I think the very point of the video is being missed.
I thought she was very clear and the video would present a service to new memebers.

There is no room for this type of debating on the board. We are only here for one reason....to help each other. This type of questioning and behavior does not serve the board or the members. Hopefully those who view the video
read the thread will benefit from it even if they only get one good bit of information, then it is successful.

I think this type of behavior is rather sad and offers nothing to our members.

Becky · 08-27-2010, 04:09 PM

There will always be controversy over the type of treatment one receives for any disease - not just breast cancer. Most diligent people, when diagnosed with a life threatening disease explore and investigate all options of treatment. This is much, much easier to do now with the internet versus the old days. And, because of the internet, it is easy to reach out and find sites, such as this, for any ailment and find out what others did and how it worked out for them.

During my bc journey I got numerous medical opinions during each stage of treatment and also relied on my friends here. Being curious and investigative by nature, I read everything about breast cancer, even the subgroups that do not pertain to me as it brings insight on the whole picture. This is beneficial to me and differing opinions are beneficial to all.

I have always seen both sides to the early stage dilemma - aggressive to the max treatment or minimal treatment (or in between). I think Her2 changes the picture a bit though. For example, women who are diagnosed with very, very small dcis are told that they need lumpectomy and radiation. Many are also told that 80% of dcis are harmless forever. They could stay untouched and nothing would ever happen. It would never learn to grow and become invasive. It might even go away at some point. However, 20% do learn to grow and become invasive (all of us here obviously had a dcis at one point that learned this trick!). The problem is that all dcis are removed and (if a lumpectomy versus mastecomy is performed) radiated. Why? Because science hasn't been able to determine which ones will be a future problem.

That's why I feel that care must be taken when women are diagnosed with early stage Her2+ or triple negative breast cancer. Both types are notorious for future trouble but the use of chemo and/or biologics (like Herceptin and/or Tykerb) really reduces the future risk. Like the dcis situation, scientists just don't know which will be problematic and which ones won't be. Period! Therefore, women need to know that in order to make informed decisions, period. We all know Stage 1 women who do poorly and Stage 4 women who do well. Its a fact of life. Every cancer, even every Her2+ cancer is unique to the individual. Its our own cell that went awry and our cells are unique to us.

As the years pass, not one of us with earlier stage (or later stage) cancer who is doing well will ever be able to tell you why they are doing well. Was it just the surgery? Did I only need surgery and radiation? Was it the chemo (and which chemo, the adriamycin, the taxol, the carbo what?). Was it the herceptin? Was it because I took fish oil, vitamin d, walked what? We don't know. We will never know anything except that we are still here. We are alive and many are because we were empowered with knowledge to make decisions for ourselves - whether it be minimal or aggressive treatment decisions.

Until more is learned and understood about the biology of breast cancer subtypes, no one will argue that any new patient must be informed about all options. And until more is learned, I don't believe any patient, any Her2+ (or triple negative) patient will forgo a path that doesn't have some aggressive treatment component.

vlcarr · 08-27-2010, 04:41 PM

Very well said, Becky. I think you hit the nail on the head!

Jean · 08-27-2010, 05:33 PM

Ditto...and thank you becky.

AlaskaAngel · 08-27-2010, 06:50 PM

HER2+ bc, as Becky said, is notorious, and although some would probably never recur even if all they had was surgery, the chance of recurrence is greater.

It continues to be more dangerous because the medical profession continues to avoid finding out whether early stage HER2+ bc can be successfully treated less aggressively without chemotherapy but with drugs like trastuzumab and lapatinib and an intact immune system to boost that treatment.

I think patients are entitled to know, but not allowed to know. Why bother finding out, given that we have lots of very toxic therapies to add to trastuzumab or lapatinib, whether or not the toxic drugs happen to work for most or just a few at random?

In addition, so far we have talked about it only in terms of seeing the danger from the cancer itself and not in terms of the long-term risks of treatment. There are other major risk factors involved with treatment that we seem to be blind to. We talk about the increased risk of weight gain, but we don't know how to measure it. Is the risk of weight gain equal to the risk of HER2 positivity?

As a group, breast cancer patients don't yet grasp the consequences of toxic treatment plus steroids bringing about chemopause that then contributes to excess weight gain that then results in the very recurrence that the toxic treatment was intended to prevent. The problem is that our society is generally overweight to begin with, and when steroids are added that lessen the muscle system and then add chemopause to it, the danger of recurrence increases. And that same group of breast cancer patients includes aging people with other diseases like diabetes, cardiac disease, and arthritis. How will those things stack up against the "protection" of having done "more aggressive" treatment as time goes by, in terms of the dangers of recurrence through weight gain?

AlaskaAngel

swimangel72 · 08-27-2010, 07:13 PM

There is a new study for women over 70 years old who have early stage Her2+ BC using Herceptin alone - I receive email updates from https://www.breastcancertrials.org/ but unfortunately I can't find the specific trial any more since I changed some of my personal information over there (they had my age wrong - I'm only 55).

I've also read about many early stage patients receiving Herceptin alone - but am I to assume they are paying for the drug themselves? That all insurance companies refuse to pay for Herceptin unless it's given with chemo? My oncologists didn't follow normal protocol for me - I was given Navelbine with Herceptin - yet my insurance company never denied me this treatment.
Jean - thanks for posting this link - and all your other helpful links - it helps so much to keep learning all we can about this Beast. "Knowledge is power".

Becky · 08-27-2010, 07:39 PM

I will say that I know the cure can kill you, or rather, can cause short and long term problems. The big thing about getting minimal treatment (less chemo rounds or just herceptin or Tykerb) is that right now, there is no data. In fact, there is no data for standard chemo but, lets say, 6 months of Herceptin versus 12 months that are given now.

That said, you are a newly diagnosed node negative woman with a 1cm tumor. You need treatment. There is a trial where you get 6 rounds of TCH and Herceptin to equal 6 months. Standard treatment is 6 rounds TCH and Herceptin out a year. Goal of trial - is 6 months of Herceptin as good as 12 months. You know about what being Her2+ means and you are scared. You know how that year of Herceptin has changed the odds of a Her2+ patient. What would you do? I would not do the trial (that's just me talking but again - I was node positive). I would do what is known to work with a Her2 pathology. I might do a trial where I might get 18 months of Herceptin and the control arm where you get 12 but I wouldn't be brave enough to do less.

I certainly would not be brave enough to do Herceptin alone although this trial with the elderly will certainly give results we all need to see.

Secondly, about less than a year of Herceptin, doctors and scientists do have data (both from the Herceptin trials and their practices). Some women, as we know, need to stop Herceptin due to a decline in cardiac function therefore, there is a plethora of women out there who could only do say 4 months or 7 months before they just couldn't take anymore. There are probably thousands of these women that they could interview. Are they doing well and how less well are they doing versus similarly staged women who took the full year. So, as far as is less just as good or not, there is data there. Someone just has to pull it all together and do some mathematics.

At least this elder study will give data if Herceptin alone (or with an antihormonal if one is also hormone positive) will give results we need that will help with decison making down the road.

Jean · 08-27-2010, 07:59 PM

Hi Kathy,
Here is a link to the trail you mentioned :

http://www.cancer.gov/search/ViewCli...archid=8049743

Hopefully we will learn much from this trial. Due to the trials that were done many dr. will not order treatment with just hercetin, but as you said there are some women who have dr. who will (I remember that Hopeful had a dr. in private pratice who did treat her with just herceptin). I am sorry I don't remember how Hopeful insurance behaved regarding payment. Glad you are doing well! I remember when you were first dx.
and starting your treatment. Now that part is behind you and better days are here.

Best Wishes,
Jean

Hopeful · 08-28-2010, 11:34 AM

My insurance paid for the Herceptin, even though given without chemotherapy. I was dx in June 2006, after the Herceptin presentations at San Antonio but before the FDA approved Herceptin for use in early stage patients. At the time, any use of Herceptin in early stage bc outside of the clinical trials was considered "off label." I questioned my onc as to whether my insurance would pay for Herceptin if dispensed in a manner other than given in the trials (meaning without chemo) and he assured me that they would, and he was right. I am very grateful that I had the opportunity to make that choice and have my insurance company pay for my treatment. Since that time, the FDA has approved Herceptin for use in early stage bc patients in conjunction with chemotherapy. The wording of that approval makes it very difficult for patients to get the drug without also getting chemo, as well as getting insurers to pay for it.

Hopeful

v-ness · 09-01-2010, 11:59 AM

alaska angel wrote: "HER2+ bc, as Becky said, is notorious, and although some would probably never recur even if all they had was surgery, the chance of recurrence is greater. .. It continues to be more dangerous because the medical profession continues to avoid finding out whether early stage HER2+ bc can be successfully treated less aggressively without chemotherapy but with drugs like trastuzumab and lapatinib and an intact immune system to boost that treatment."

i fail to grasp how less aggressive treatment can make a cancer *more dangerous*. you say they should try to treat early stagers (like me) with just herceptin and let our *intact immune system* do its work. i would argue that if we have cancer in the first place something is not at all intact in our immune system anyway. besides that, several months ago i started a thread asking what percentage of us Herceptin actually works on, and the number wasn't enough to convince me that it would ever be sufficient to contact a ferocious cancer like ours. i guess you'd have to be a gambler and, in that case, remember the House usually wins. i went through TCH for my node negative triple positive cancer, and i personally would opt for chemo again if i had to rather than die trying the 'less is more' treatment.

valerie

AlaskaAngel · 09-01-2010, 12:16 PM

All good questions, Valerie, and since no one has yet answered most of the questions about breast cancer it is really important to keep asking questions.

If we all agreed that we must use chemotherapy for breast cancer as a basic ingredient in therapy, then even if there is a drug that would be better we will never try it because we don't feel safe without adding chemotherapy.

One key question that also has to be answered (and won't be, as long as we continue to say that chemotherapy is essential) is, what percentage of patients who otherwise would not recur, recur because they do chose chemotherapy?

To people who desperately hope that chemotherapy will work, that may seem like a "silly" question. But any therapy (and especially known toxic therapies) can ADD to the total of those who recur instead of just reducing the recurrence rate. For some, chemotherapy may be the reason they do recur. As long as we refuse to ask and find the actual true answer to that question, we are failing those patients in the mere hope that chemotherapy is necessary and more helpful than harmful. This is an even more crucial question to ask when applying therapy of any kind to a group of patients where the majority is known not to recur without any therapy. That group can actually have a worse outcome because of treatment.

It is important to remember that adjuvant treatment has a very short history, so what might seem to be protective in our desire to protect ourselves and each other may not be protective, but actually harmful.

AlaskaAngel