Breast cancer recurs in almost one in four patients....

My first thought when I opened this up is very similar to Alicethecat.  One in four that get recurrence, means three in four don't.  I am not naive at all - my tumor was pretty aggressive and my dx was stage IIIc from the get go.  I also thought that 1999 (beginning of study) was 13 years ago.  So here's how I choose to look at this instead:

a) my mother died of this disease almost 40 years ago at the age of 47.  I will soon be 58, so I've already lived 11 years longer than she did.

b) they are gathering info for our 40th HS reunion.  As part of the "join up page", there is a running memorial page and next to it, the year they died and it is ever growing.  I have outlived some peers from HS by 20+ years.  BTW, of those dead, two were murdered, only two died of any type cancer and three from some other health issues.  BUT, the rest died in car accidents but I haven't stopped driving!!  

I've had friends that have fought cancer tell me that once I got out the other side from treatment I'd view life very differently and that no one can explain that to you unless you've been there.  I "get" it now.  None of us is guaranteed our golden years and I've spent the last year whittling down my bucket list.  I no longer allow toxic people or situations in my life.   One really learns the meaning of "don't sweat the small stuff" cuz ITS ALL SMALL STUFF!

Lastly, the comments that chemo and most treatments are over 30+ years old, very true.  However, as the daughter of a women with BC in the early 1970s, trust me when I say, "we've truly come a long way baby".  My mother had no say or decisions in her treatment. She went in for a biopsy and told if cancer cells were present, she'd have a mastectomy while under.  She was sicker than a dog all thru chemo and her radiation was pretty brutal.  My life was interrupted by this journey but the drugs to control nausea did their job, radiation was not rough till the last few "boosts" and all during this time I continued on with life.  I'm now on Arimidex. Instead of thinking about what they haven't done, think of what we have gotten:  receptor testing, oncoscores, better drugs for nausea and pain, hormonal drugs (tamoxifen, Arimidex, etc).  Don't get me wrong, I agree, it would seem we should be farther along but things are what they are.  I've decided not to think about what may happen and instead travel and do things I want while there is still time!

It sounds like quite a few of us have been doing well and see the glass not as being half empty and are making the most of it. We feel that there has been progress in dealing with cancer, even though we would like to see more progress.

So, why is this discussion happening on the clinical trials forum?

The question is, what are each of us actively doing as we go along besides being glad? How many are willing to share the effort for making the progress we want to happen "somehow" through clinical trials?

I will never have a 20% recurrence. If my cancer recurs, I will 100% have cancer. If I don't recur, I will 0% have cancer. Stats apply to groups. Only 0% and 100% apply to me.

I totally agree with you Stacie and AMP. Case in point, my dx is mixed IDC/ILC multi-focal tumours which doesn't fit into any category elaborated by statisticians.  I suspect they will be scratching their heads and will need computers the size of New York with the advent of genetic markers and customized cancer therapy

"Fisher et al[12]. characterized over 1000 mammary carcinomas and recognized that the histologic subtypes could be mixed. They characterized approximately one-third of the lesions as invasive ductal carcinoma with one or more combined features. Slightly more than half of the combined tumors were IDC with a tubular component, and combinations with lobular carcinoma were detected in 6% of cases. It has also been seen that prognosis and survival of invasive breast carcinoma depends on the histology of the tumor[13,14]. 

Yet,

"To date, the clinical presentation and prognosis of mixed ductal/lobular mammary carcinomas has not been well studied, and little is known about the outcome of this entity. Thus, best management practices remain undetermined due to a dearth of knowledge on this topic" 

So, with all the delight you have about being among the percentage that are all staying so focused on being  positive about being winners in this game....

Do you have any time left over for being part of making progress for the remaining percentage that weren't so lucky, by making the effort yourself to participate in clinical trials?

You never know when it might turn out to be to your own benefit... or your children's benefit down the road....

???

Is that a question?

I looked around in clinical trials for keywords like "genome", "microRNA", "tumor tissue", "tissue bank", "cell line", "dna", and of course "breast cancer".   You could also look for "NCI".   In looking for trials, look for NCI sponsored trial if possible. And ask for data sharing among researchers.

http://clinicaltrials.gov/ct2/show/NCT00032201?term=breast+cancer+tissue+banks&rank=18

This one is creating cell lines from high risk breast tissue. if you had breast cancer before, your noncancer breast tissue might be immortalized! "To establish a repository (facility in which tissue samples can be preserved and stored for many years) of cell lines from high-risk breast tissue to allow researchers to learn more about changes in breast cells that may cause them to develop into breast cancer."

http://clinicaltrials.gov/ct2/show/NCT00899301?term=tumor+tissue+breast+cancer+DNA&rank=16

http://clinicaltrials.gov/ct2/show/NCT00899509?term=tumor+tissue+breast+cancer+DNA&rank=10

http://clinicaltrials.gov/ct2/show/NCT01000883?term=tumor+tissue+breast+cancer+DNA&rank=15

http://clinicaltrials.gov/ct2/show/NCT01334021?term=genome+breast+cancer&rank=4

http://clinicaltrials.gov/ct2/show/NCT00897702?term=genome+breast+cancer&rank=16

http://clinicaltrials.gov/ct2/results?flds=Xh&flds=a&flds=b&flds=c&flds=g&flds=j&term=breast+cancer+microRNA&show_flds=Y

http://clinicaltrials.gov/ct2/results?flds=Xh&flds=a&flds=b&flds=c&flds=g&flds=j&term=breast+cancer+tissue+banks&show_flds=Y

I was approached by my doctor to join a trial, the iSPY trial that has been mentioned here or in another thread already.  In fact, I would say that it was somewhat pushed.  I was being treated at a major research center/university, but found that that trial is available many places.  You have to apply for the trial.  I decided not to apply, but probably not for the right reasons.  Basically, I did not want more biopsies and MRIs and additional chemo.  I hope that wasn't short-sighted.  I talked to the clinical coordinator/nurse and came to the conclusion that it was unlikely that the biology of my tumor was going to qualify as aggressive enough.  Out of every decision I made in my treatment plan, this is the one I question.  I will say that they did not have very many patients in the trial when I asked about the statistics. 

I did enter various other studies related to causes of cancer and preventing lymphedema.  Whenever they offered me a study and I felt that it was not contradictory to my own best interests, I usually said yes because it was my way to try to give something.  I elected not to participate in the Metformin study because I did not want to spend 5 years on a placebo which I felt was contradictory to my best interests which are to be on Metformin asap.

I was at a local hospital in a metropolitan area (so there was a few trials available).   I did not qualify for any at the time diagnosis because of my circumstances.   I was very overwhemed anyways and made some questionable treatment decisions.   In fact I never heard about neoadjuvant or preoperative chemo before my surgery, and no one told me before my surgery.   That's why I feel I missed out on a very important piece of information about my cancer and think that general population and newly dxed patient would need some education on neoadjuvant/preoperative chemo and clinical trials.   

Here is what I missed out by not doing preoperative chemo:

a.  whether chemo worked at all:   In future, if we have recurrence, I may have to go back to chemos that failed and waste 3 months to rediscover that the chemos with worst side effect did not work.    

b.  Chemo works, but we need to know how well it works.   Say AC4+ T12 shrunk my tumor by 1/2,  before my surgery.   Here is what I know, if there is a remote metastatic cancer elsewhere, assume it's smaller say 1/4 size of my primary tumor, it is probably shrunk by 1/2 too, now 1/8.   But given the aggressiveness of tumor, it might take only 2 months to double again.   Then I may be getting 2cm mass about 6 months after end of chemo.    

Say alternatively preoperative chemo shrunk my tumor to nothing!  Then, I have a good inkling that I won't get recurrence for maybe 5-6 years.    This is a great information to have for an almost worry free 5-6 years.

I think this is compelling reason for choose neoadjuvant chemo.   As to ispy-2 clinical trials, whichever arm you randomize to, you will get the standard chemo with/without experimental drug that passed preclinical evidence and safety test.   So the patient is contributing to faster development of drugs without sacrificing much.    Best news is, FDA is considering accelerating drug approval based on tests like ispy-2 and allow ispy-2 to try out 12 drugs instead of just 1.   That should cut down the drug development time (currently at 15 years) and drug development cost (currently at 100s M even 1 billion dollars).

I think patients should spread the word to high risk women and newly diagnosed patients about ispy-2.   It would make a big difference.

Well said Beesie. I have researhced my cancer until my head exploded. Choosing to live my life to the fullest, be with my husbnd and children and waking every day thankful I am still alive is not blissfully ignorant or keeping my head in the sand. No one knows at diagnosis if we will recur or stay cancer free. Living life to fullest is the best we can do for ourselves.

Regarding the iSPY2 trial, I want to add 2 things. One, it is only available at about 15 or so places in the U.S. There is a map on their website showing the sites participating. This would make it very difficult for a lot of women to be in the trail. Traveling long distances to and from chemo is probably not practical. Second, even if I had been randomized to receive only the standard chemo, my chemo would have been different. I had 4 DD A/C and 4 DD Taxol in that order. Via the iSPY trial, I would have had 12 Taxol and 4 DD A/C in that order. I had immediate and noticeable shrinkage from the first A/C. I think that was the right drug for me to have first in the sequence. My MO said that it did not make much difference which drug was administered first, but having that really good result from the first treatment made me feel good.

Mary,

At least you had neoadjuvant treatment, which is already great, it gave you the information that AC works.   And you were offered the option of joining ispy-2.  Which is also great.   Some newly dxed patients were not offered the option or information about either, in my personal experience.

these clinical trials expands as more patients learn about them and demand them.   It has the same supply-demand dynamics as anything else.    I just counted from their clinical trial description on clinicaltrials.gov.  there are 21 locations now. 

http://clinicaltrials.gov/ct2/show/NCT01042379?term=breast+cancer+i-spy&rank=1

FDA gets a bad rap for approving avastin too hastily before OS evidence, then gets a bad rap for not approving tdm-1 and pertuzumab quickly.   FDA is trying to speed up the clinical trial process by allow ispy-2 to concurrently test up to 12 drugs without seeking additional approval, and use neoadjuvant efficacy as evidence for drug efficacy.   FDA is doing a good job here.   Researchers are trying their best figuring out multiple angles of attacking BC.  

Patients have a duty too, to spread the word, to learn about and to demand the option of clinical trials, and to join clinical trials where it does not conflict with their interest.   Unfortunately many clinical trials fail because of poor recruitment.   It will be embarassing if ispy-2 fail because of slow/no recruitment.  Because then we'd know who dropped the ball.    

ispy-2 is only the beginning, the experiment.    If ispy-2 succeeds and results in even 1 blockbuster drugs, you can count on it that there will be a dozen clinical trials like it, which would mean that the whole evolution of cancer drug pipeline can actually keep up with the evolution of cancer.  

If ispy-2 fails, there will be few or no clinical trials like ispy-2.   All successful future drugs will still go through the same status-quo 15 year development process and billion dollar price tag.    So if 10 years later, when 1/5th of us have relapsed, and the mortality rate for stage IVers are still 50%, then, please don't run around complaining about FDA, or big pharma or researchers or whoever.   We'd have no one but ourselves to blame. 

D4Hope,

That is an important part of what some of us here are saying.

When the specialty health care providers we are seeing specifically to help us deal with breast cancer fail to provide a basic introduction about how to find out about any clinical trials that we might be interested in, they are violating our right to be fully informed about the choices open to us for health care.

Yes, these are busy people. But what would it take to provide a basic handout about how to locate information for those who may be interested? What would it take for oncology nursing staff to coordinate opportunities to meet with a volunteering clinical trial participant, just like they often do by conducting sessions for newbies to meet newbies or oldbies?

I too was not offered any opportunity to consider any clinical trials, even though the onc I saw was part of a major cancer center in Seattle and was personally conducting other clinical trials for cancer. Even worse, when I specifically asked, he failed to offer me the most basic information about how to learn about clinical trials on my own.

Belatedly, I learned about some and have been a participant since then. In my case, as a HER2+++, my onc failed to connect me with a trial that would have offered me the opportunity to benefit from Herceptin before it was later approved as being a game-changer for those with HER2+++ disease. As a result I never received it, and I could have died because he denied me that opportunity that I WAS ASKING HIM FOR.

We don't know why I ended up not needing it -- maybe because my tumor was entirely removed, or other unknown factors. But I think more patients would be safer if we were at least provided at time of diagnosis with an introduction to the basic process of how to find out whether we are eligible.

There are many clinical trials you and I can still participate in and make a difference with, even though we are not newly diagnosed.

Hi doxie,

When I was 3 years out, the use of trastuzumab (Herceptin) was approved for adjuvant use. At first the recommendation from the meeting of oncologists was for those HER2 positives who were no more than 6 months out from completion of chemo to receive it. Later than was changed to those who were no more than a year out from completion of chemo treatment. Then that was changed. When it was first approved, I was 3 years out and my onc recommended against it, and I declined it.

But what I think was so obviously stupid on their part is that everyone understood that the first 2 years after diagnosis for HER2 positives is the period of greatest risk for recurrence. Yet they diddled around about giving it to those who were still within those 2 years post chemo.

I'm glad I didn't end up needing it, not only because of the extra hassle of it but because for each person that gets it, that means that around $50,000 of health care resources is being used up, whether they need it or not. If we each had to pay out of pocket for it, we would all appreciate that the relevance of that concept a little more. Most of the time it is taken for granted that it will be made available anyway. And that figure does not include all of the lab testing along the way, etc.

Different countries have different ways of offering it. I think Australia is the most realistic.

A.A.