Relative risk v. Absolute Risk in decision-making

Can someone tell me the study (study number or name) that is being referred to - that indicated that chemo isn't effective for ER+ cancer.

Thanks,

NancyD, you wrote: ".....you have to admit shrinking it (the tumor) more than 2/3 is not exactly not responsive......"

See: that's exactly my problem with the current approach to treatment: research concentrates on tumor-shrinkage. But, as demonstrated by many independent researchers, and as painfully evidenced by the Recurrence/Metastatic section of this very forum: tumor shrinkage and overall survival are 2 completely different matters. Alas.....

My point is that if they (Research) adopted a more open-minded approach to their great work, if they accepted to start looking in new, innovative directions, we could get past tumor-shrinkage, and move towards a real cure (overall survival).

Tumor shrinkage is excellent news, for sure!! Great!! ......

...............Sadly, however, the more aggressive tumors (for ex: HER+, ER-, etc...) have that terrible tendency to recur. No matter what chemotherapy mixture is applied.

And we are still doing the same old, same old, same..... Surgery, chemotherapy, radiation. Over and over and over and over and over..........................................

I have several friends in my support group (one of them is sooooooo very close to my heart) who are exactly in that situation: they joined the group 5 years ago (actually, they pride themselves on being founding members of our group). They went through the whole treatment thing, and when I joined in turn, this dear friend told me exactly what you are saying now, in order to cheer me on right before I was to start chemo:

"You know, chemotherapy REALLY works. Don't worry: it REALLY works."  Oh, how nice and encouraging they were to me......   And it breaks my heart to say: 3 of them are currently battling metastasis. Did chemo/radition keep the mets at bay for them for a few years? I am open to that suggestion, but knowing me, I doubt it seriously (in view of absolute/relative statistics, it looks unlikely to me). I am more inclined to think that the cancer was simply taking its time.

 Anyway, here we are, my friend and I: facing the revolting, heartbreaking situation of her progression to mets (she had one of the aggressive ones). Of course, my heart also goes out to the others facing the same situation in my support group. And everywhere.

Wow

This thread sure has made its way down a winding road. 

First, on the original subject: I am ER(+) and when I was originally diagnosed I went to a well respected oncology practice in the area.  The oncologist that was assigned to me had just finished his fellowship at MDA and was supposed to be on the "top of his game".  He read through all of my information and then gave me information and encouraged that I join the TAILORx study.  He told me that he would not request the Oncotype DX test unless I joined the study.  He was all about clinical trials and research and I felt that I was in his eyes a breast cancer lab mouse.  He told me that most likely I would have chemo given my markers but that the study would randomly assign me to a group based on my markers and we would choose the treatment options based on that.  (NOT!!!!!! for me)

I called around to other women in the area who had recently gone through breast cancer treatment.  One of my neighbors had gone through chemo with this same oncology practice.  She said used them because they were well respected, highly regarded, top of the game etc.... and then after her treatment she started reading about the fact that based on her markers (high ER+) chemo probably was a waste of her time and energy - she had two kids under the age of 3 at the time of her chemo. 

She referred me to my current oncologist who immediately ordered an Oncotype DX and then sat me down in front of a computer with incredible graphics including bar graphs, line graphs, statistical analysis all in a colorful power point format.  After impressing me with the statistical analysis including relative risks, absolute risks etc etc, my current oncologist said: "based upon your current information and tumor markers, the risks associated with you having chemo are higher than the benefits you would derive from getting chemo".  Thank God she was well versed in statistical analysis.  And my decision was made!

So to address another line of conversation going on in this thread.  I believe that conventional medicine is an important aspect of treatment but not all medical practitioners look at medicine in the same way.  Just like not all patients look at medicine the same way.  The first oncologist was a researcher at heart.  He was looking at a more long term view - lets put all bc women in this study so we can get data for the future......I was not his type of patient.  Although I am appreciative of those women in clinical trials, this particular trial was not for me at this time in my life.  The second oncologist was looking at the short term, what is best for this patient at this moment in time- based on what we know now and what she will tolerate and she backed it up with an appropriate statistical analysis. 

So I had a bilat mx, no chemo but was put on Tamox.  I then started looking to Augment my conventional medical choices with alternative choices.  I guess I think that people should make the personal choices that they can live with.  There are really no guarantees .... especially with this type of diagnosis.

LJ13 - "What's the problem".. of course no one expects doc's to work for free, but the clinical study could be scewed by this type of practice - what am I saying most studies ARE scewed by this type of practice..  It takes no time at all to suggest to a patient that they include themselves in a clinicial trial or study - there is no need to pay for that piece - only the piece where the doc's review the patients dx and treatment to see if it falls under the criteria of the trial.. and that is done by an agent for the trial.. that doc is paid in full.  This IS a real problem in medicine whether you agree or not and we are all paying the price for it.. We pay the doc's for a referral, the FDA get's paid by the drug and medical device people, etc etc etc.. What happens to the patient then.. What happens to "first do no harm".  We are suppose to be able to trust our doc's that they have our best interest at heart instead of their own interests.. Her doc was already paid for her visits.

The FDA was once an organization with the intent to do good, not anymore and this is brought to the attention of congress almost on an annual basis..  Government approved (recently) the use of pharmacutical dollars to "help" the need of the FDA because they were always screaming "not enough money".. sorry it just isn't that FDA anymore!  I wish it were!  If you want proof just do a search within most newspapers and I believe if you do a search here on the alt site someone else had already brough forth the sites..  I don't blame you for not believing until you have proof - I felt the same!

I will bump up the thread about FDA...not all have outside interest but these reports show there is proof many trials have a lot of conflict of interest going on between all of organization.  I have done to trials and they were Phase I & II.  My doctor of course a MDA onc. went straight from there after two year to work for the pharm.  If you don't think this is big business, next time there is only news of research of a chemo drug just moving from one kind of a cancer to another (not even a new drug) you can watch the stock market and see the stock triple without even a phase I trial  completed.

Let me give you guys a example of how a Phase I trial worked.  First I was un-educated about this stepping in. I was at the #1 cancer center in the world. (Big joke!) I had to very small local tumors and they would not let me see the bc clinic. Straight to Phase I and had four hours to make my decision to do the trial.  I ask about my expense because I would have to stay in a hotel out there for six weeks and fly back very month for tx.  Was told if I could handle this drug after the first tx they would pay my traveling. LIER'S! (cost me $7,000)  The other big thing is MDA cost triple to be treated there. My doctor who never even examined me did not know what kind of cancer I had or were it was.  Went to chemo and the nurse pulls me aside a told me don't let them do this too you!!! This was the sign I should have gotten the hell out of there. I was put through 34 blood drawer in 24 hours as part of the test. And many of test that was a joke.  After I got make to my room and got on the internet I found out the drug was already tested by Germany five years early and showed ZERO value in the tx of bc.  I made friend with the test nurse and she later told me that I did not fit the profile for the trial but they needed a healthy rat to up the response rate on side effects because I've aways handle chemo so well..  They did ZERO follow up on what happened to me, until one year later they called and ask if I had side effects.  Let's see...Level III neuropathy and could not walk for six months.  I asked if they still were doing the trials she laughed and said YES!  I ask how it was going...oh we have finding poor response and life threatening side effects. ONE year later still paying with this drug?

I also found that they have ways to the trials look better.  This nurse and doctor talk to the pharm company daily. I was told not to give to much info on side effects in the meeting with the research nurse?? Only the check in nurse.  They would not do a PET scan on me only would do CT Scan every four months so you had be on the drug longer because seeing if you're having any response.  The pharm. company ran this trial not the FDA. If they FDA was involved why didn't they collect the data themselves? Why don't they have someone doing the follow up?  If someone is willing to do trials they should be PAID.  It's their life everyone is playing with.  Even if the drug works wonders the pharm co. will now make billions off it.  Avastin made 10 billion in two years. Where else in business do companies get free rats to try their product on?

My big questions still is where was the FDA to protect me from this useless toxic treatment? Not  to say all the other's put through this trial behind me.  I did not meet one person it did anything for them. The other big thing I learn while out there....only 10% of the population needs to respond to a drug to get it approved!

FDA looking at data AFTER people have been exposed to toxic drugs is not protecting them.  There has to be more research upfront. Second why does America need to redo complete trials after other countries have done years of study?

Flalady

....only 10% of the population needs to respond to a drug to get it approved!

I had actually forgotten to mention that part, though I was aware of it. Thank you for the reminder.

Deirdre 1, you wrote:

"Absolute power corrupts absolutely"..  not exactly a new theory... Talking about what has become of the FDA, which started with such high hopes.

And I am totally with you.

The argument is untenable Deidre. People and companies pay fees to government agencies and private certification bodies all the time. If they are applied across the board, and otherwise implemented impartially, there is no conflict.

Deb,

Great news!  Yes, surgery will give you a insight how well the chemo did.  I hope you got a complete response.

Flalady

LJ13 - Yes we pay FEE's to doc's too but expect them to follow a certain ethical protocol actually make them take an auth.. the FDA was set up and THEIR intended protocol changed when companies with a direct interest in their futures started PAYING FDA for their services.. you honestly don't see the difference???  Conflict of interest is a real problem in medicine.

cp418:  I honestly wish I could say something positive too, I use to, but things have changed and someone, everyone needs to know they are not protected!  I'm with FloridaLady on this too and frankly it makes me question our entire medical system.  Yet I want to accept the good and thow out the bad.. I thought the government was doing some of that work for us!!!

Congrats Deb-from-Ohio!!  Hope surgery turns up NOTHING too!!!

Yazmin---this is the first I've heard of chemo not being effective for ER+.  Can anyone tell me where I can get more info on this?

Thank you Marie Kelly!