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

Jun 12, 2012 10:28 AM, edited Jun 16, 2012 02:31 PM by jenrio

----------------------  Cruel statistics alert.   Don't read on if you can't handle it 

----------------------  This is a clinical trial/research thread.   If you are not interested in clinical trial/research or advocating for clinical trial/research, if you are only interested in being glad or sad or frightened, then you may not want to keep reading

-----------------   read at your own risk and don't shoot the messenger 

-----------------  This post is really for early stagers.  Stage IVers please don't read.   

A lot of early stager patients are told that they are "cured" (based on 5 year recurrence free statistics).   But BC is too sneaky for that!

Notice the life expectancy of the recurred patients: they survived for an average of 17.9 months after being diagnosed for a second time.

Breast cancer has no cure/survivors, ladies, sorry to pop your pinkwashed bubble.    The chemos you are on are mostly 20,30 years old.    The hormone therapies you are on are 10-30 years old as well.   Herceptin is 10+ years old.  All the best treatment since Herceptin extends life as measured in months, not years, much less decades.   So survival improvement since then would probably not be far off from the quoted stats.

So you have two choices.  A.  Be glad you are alive and live your own life.   Your glass is 75% full.   Congratulations!   You don't need to lift your talented fingers for the stage IVers who traditionally went to clinical trials to prove the best chemos/Herceptin/Hormonals and allowed these best treatment to be tested and given for early stagers like yourself.   Very few of them survived to see the glass half-full today, BTW. 

----------------    Following is actually some alternative, possibly depressing actions suggested.   If you hate action, you are not interested in clinical trials, or anything that remotely might require acknowledgement of a dark cloud in your perfectly sunny sky, don't read on...

----------------    

B. get off your survivor ass to work for the real CURE.   Prevention is an expensive deadend that took 30 years to get to this.   Support metavivor or metastatic breast cancer research and join clinical trials (like the neoadjuvant ispy-2 clinical trial for newly diagnosed, or metastasis prevention trials for medium stagers or donate your tumor samples or check clinicaltrial.gov).   If you have one of the rare tumor types, work to find each other and a researcher who's interested in focusing/tracking your particular tumor type.    From rare cases, there could be rare insights and great advances.   Every year 200k women are dxed with BC, how many of them join neoadjuvant clinical trials?   Not that many.   So spread the word about ispy-2.   Minimal commitment, faster development of drugs, but the information needs to be out there, pinged to the top of every forum.   Every newly dxed BC patient should have the opportunity to learn about these clinical trials.

Donate to your local university biology/medicine department to hire a graduate student or two.   Thousands of people, graduate students and teachers are working on varying part of the million-piece puzzle, called cancer.    They fail every day, but one day the pieces will come together and there will be a cure.   For that day, donate money or just buy them some free food or attend their seminars and learn from them.  Tell them the little pieces they are working on is important and a lot of people care. 

www.bcrfcure.org/action_topics...

www.bcrfcure.org/inv_survpart....

Try earmark your donation to go straight to scientists/graduate students or specific research.

If you think it's too much trouble, add your name to a petition and beg the government.  

www.breastcancerdeadline2020.o...

Jun 12, 2012 10:38 AM lanagraves wrote:

Also there are vaccine trials that are showing great promise :)

Jun 12, 2012 10:50 AM Chickenpants wrote:

I read the article. It is a small study, but reading down, the actual risk is only less than 1 in 5, or there is over 80% chance the average woman won't get a recurrence.

Jun 12, 2012 10:56 AM jenrio wrote:

I agree vaccines, Herceptin for Her2-low patients, many different drugs are "promising" and requires investment.   But they have been promising for a long time.  

I read bios of 2 long term survivors of MBC (20 years and 8 years).  At one time or other, their oncos told them some variation of "hang on, cures may be around the corner".    Sadly both of them passed away without seeing the cure.

I'm afraid in 20 more years, the cure would still be around the corner 

Jun 12, 2012 11:54 AM lanagraves wrote:

I agree BC is a sneaky, vicious beast, so I certainly do not mean to minimize it in any way. It is devastating. I just have to keep hoping, searching to find some glimmer of progress. It is the only way I can spend my days living instead of dying.

Jun 12, 2012 12:10 PM, edited Jun 12, 2012 12:11 PM by jenrio

Lana you mentioned some very promising area of research.   and you are very educated about the risks and kept up to date, and this is what every BC should do regardless of their stage/grade/lifestyle choices.   The division of early/late stager and false distraction of early-stage "cure"/"survivorship" and "chronic" disease for metastatic patients, is why MBC still has terrible true cure rates today despite billions thrown on it. 

I believe that there will be a cure.   But cure would come from risk-takers and innovators, would come from many different directions, and would require patients participate and donate their medical records and samples.   

I just wrote a blog post on an inspiring story of AIDS cure.    An obscure doctor tried something new on one AIDS patient, an AIDS charity operating on used-car sized annual budget.   Check it out in my blog.  

Jun 12, 2012 12:55 PM, edited Jun 12, 2012 02:30 PM by jenrio

LtotheK,  

I'm glad you are taking the time to read clinical trial forum and my post on AIDS.   You are fighting the real thing and your survival is important.

I think metastatic cancer in general is a tough nut, so I don't think researchers are neglecting MBC unduely.    Sometimes I feel the biggest impediment to progress is ourselves:

a.  we buy into and propagate false notion of "prevention" or "cure" for early stagers and "chronic" for late stagers.   MBC is not chronic like diabetes/AIDS, which have near normal life expectancy.   MBC is not "preventable", like polio for example.  We are just not there, that's the reality.

b.  when doctors tell the late stagers the true/near true/likely prognosis of 1-3 years, the patient blame the doctor.    It's like shooting the messenger for a true message.   How many stage IVers read the clinical trials forums?  BCO's stage IV forum has a big heading "stage IV only", a big "you are not welcome" to the early stagers.   Barriers, dishonesty and divisions are antithema to progress.

c.  Not enough of us participate in clinical trials or stay in clinical trials.    Many early stage clinical trials are shut down for lack of patient participation.   In my blog, I reviewed a book "Emperor of Illnesses".   One of the most relevant story is the story of Herceptin.   A particularly suitable patient (high Her2 receptor, visible tumor) refused to join the early stage Herceptin because she had already given up. The researcher begged her to join and eventually she joined and was the belle weather of the cohort.   She survived.   Every patient should donate her records/tumor sample, learn more about BC and get in touch with some research study.  The AIDS cure I wrote about depend on 1/200 HIV-resistant mutation.   We need every long term MBC survivors (1-10%) to give us their data/samples to help figure this out.

We spent thousands on wigs, fancy wears and candies, snake-oil therapies that doesn't publish any papers, we raise billions for Komen.   how much do we or Komen spend on the early stage research (the obscure doctor, the lone graduate student who toiled the night, the researcher with a weird idea) that might give us the cure?  The probabilities are low, but it's certainly not zero.   The more we know about MBC, the better off we are.

Jun 12, 2012 04:04 PM wallycat wrote:

Annual dx does not equate to how many die....I don't see anywhere that the type, grade, age of patient are mentioned.  I have a friend who was dx at 72.  If she dies at 80, would she have died with or without breast cancer?

I also wonder if some of these treatments contribute to survival...Robin Roberts is a good example, but you can't not treat someone for fear what the treatment will do. 

Sometimes reading statistics is scary because they can be twisted to show what someone wants to portray.  We are all here because we are afraid of a recurrence and hope that a cure/treatment comes along sooner rather than later.

I am, for myself, starting to think that reading the negative aspects of outcomes is not doing me any good.  That is NOT to say it should not be published or discussed, but I am a worrier by nature and since I have no brain capacity to spend time in a lab to find a cure, I am at the mercy of those who do....and maybe not knowing will give me a better quality of life until I either die or they find the cure.  Everyone is different.  I hear knowledge is power but I only find it valuable if I can do something to alter the outcome.

If I knew an asteroid would destroy the earth...would I want to know or be surprised?  For me...I pick surprise.

Jun 12, 2012 04:35 PM, edited Jun 12, 2012 04:37 PM by dreaming

I was never told that cure was around the corner, I was told and also learned again about it in the cancer center where I work,that recurrence can happen any time , no matter how many years from DX and  in any place on the body.

I know also about how long survival after a recurrence, but on the other hand , a car can run me over any time.

I am fully aware , that for BC , 5 years had no meaning. I do not let my guard down, I had 2 biopsies in this 20 years.

I see a surgeon and my onco once a year, in reality I see a doctor every 6 months.

Jun 12, 2012 06:04 PM Ruby- wrote:

jenrio, I believe that we are all here on a quest and that we are all fighting with our nails to survive. There are many ways to contemplate the world and none is better than the other.  We are all different individuals with our own unique history who have a lot to offer.  I am grateful for each and every sister here who shares her thoughts, her advice, her fears, her tears, her little joys, her courage, her knowledge in a respectful way.

I have read scientists themselves do not believe there will ever be a one, unique fits-all cure.  The future is looking at individual, custom made therapy.  

Jun 12, 2012 06:40 PM Ruby- wrote:

This is one risk factor that looks credible to me - then lifestyle, the environment, nutrition or lack thereof, etc. close the deal

"These results give further credence to the hypothesis that breast cancer risk is influenced by hormonal exposures in utero"

jnci.oxfordjournals.org/conten...

Jun 12, 2012 10:26 PM jenrio wrote:

Hmmm.  I don't see where's the disagreement.  You are taking care of yourself, you are making intelligent decisions (presumably based on probabilities/uncertainties), you participate and share in discussions.   Your life is valuable and knowledge is still power to yourself and to others.

If a research scientist don't believe in curing metastatic breast cancer, maybe he/she should consider another field.   Look at malaria, bacteria, diabetes, AIDS and a hundred other diseases that have gone from deadly to survivable to curable.   There could be lack of information, there could be failure of imagination, but no one has ever proven that "metastatic breast cancer" is incurable.

Look at my blog to see what I mean.    check out the AIDS post.

Jun 12, 2012 11:16 PM, edited Jun 13, 2012 10:04 AM by jenrio

clinicaltrials.gov/ct2/show/NC...
 

ocg.cancer.gov/ 

Cancer Genome Anatomy Project (CGAP)/Cancer Genome Characterization Initiative (CGCI)
Cancer Target Discovery and Development (CTD²) Network
Therapeutically Applicable Research to Generate Effective Treatments (TARGET)
 

cancergenome.nih.gov/

genome.wustl.edu/
www.ohsu.edu/xd/health/service...

clinicaltrials.gov/ct2/results...

or your nearest big university affiliated cancer center. Search for "cancer genomics", "next generation genomic tumor", "tumor microRNA" in clinical trials.

Contact them, don't take no for an answer. Especially if you are an outlier (young, or rare BC type, or autoimmune disease, other conditions, visible tumors) A lot of these technologies are new in the last few years. Many health professionals (oncos and genetic counsellors) are not yet catching up, so patients need to educate themselves and help out research of the next generation cures. 

Read the story of Herceptin's invention.   The patient who refused to go on clinical trial at first never anticipated how valuable her participation turned out to be.   To see her tumor visibly shrink with different doses of Herceptin really helped in 3 ways: 1.  provided early proof of Herceptin's efficacy and information on correct dosage/chemotherapy combo.  2. helped in designing the next stage clinical trials and 3. helped boost the morale of the pioneering patient group.     The relationship between a patient and researcher is not a relationship between "distressed damsel" and "knight in shining armor".   The relelationship is more like 2 shipmates on a fast sinking ship.   They need each other.   And the least a patient should do, is to proactively seek out her other half, someone who knows her condition, cares about her condition and is willing to try things.   For more stories on how patients/doctors made history check out my blog in my signature.

Now if you are not convinced that your tumor sample/medical record is potentially valuable, if you don't have the time to seek out the researcher and helped her/him out, if you are not interested in understanding your condition stats/probabilities and all, maybe you'd be interested in this petition:

www.breastcancerdeadline2020.o...

Jun 12, 2012 11:59 PM Beesie wrote:

Personally I like stats.  I find it easier to deal with a situation when I understand it. If I know what I'm facing, I adjust my mind to it.  And once I know what I'm dealing with, I accept it, figure out how to manage it, and move on.  I find more fear in the unknown than in the known.  But maybe that's just me.

Now, about that study. It says that 22.6% develop MBC within 10 years. Not very good, I agree. None of us want to be in that 22.6% and none of us want anyone we know, here or in our 'real' lives, to be in that 22.6%.  

But aren't they also saying that 77.4% remain cancer free for at least 10 years and don't develop a recurrence?  If instead of the headline of the article saying "Breast cancer recurs in almost one in four patients, British study says", it said "Over 75% of women diagnosed with breast cancer do not have recurrence, British study says", would this discussion be different? 

We all know, or should know, that a recurrence is a possibility.  Anyone who's had invasive cancer knows, or should know, that mets is a possibility.  Once diagnosed, we all know, or should know, that while our risk lessens with time, the risk is always there.... mets is a possibility until the day that we die of something else, never having developed mets.  Those are the facts.  None of that should be news to anyone.  

But let's also remember that most of us will not have a recurrence.  Most of us will not develop mets.  Most of us will not have our lives shortened by breast cancer.  It's horrible that anyone does, but fortunately those numbers are falling. Survival rates are improving. Just look at these charts:

Breast Cancer Survival on the Rise Higher rates at every stage of the disease  www.mdanderson.org/publication...

Table 4.13 Cancer of the Female Breast (Invasive) Relative Survival Rates (SEER) By Year of Diagnosis, All Races, Females, All Ages   seer.cancer.gov/csr/1975_2006/...

What the above data confirms to me is that while the British study shows a 22.6% rate of recurrence (mets) over 10 years for women diagnosed between 1992 and 2002, we can be sure that for those of us diagnosed 10 years or more later, the rate will be lower. Not low enough. But lower. So maybe it's no longer 77.4% who don't develop mets over 10 years, maybe for those of us more recently diagnosed, it's 80%.  Or maybe it's even higher than that. With those odds, isn't it better to live our lives, rather than live in fear? 

Jun 13, 2012 03:51 AM, edited Jun 14, 2012 02:44 AM by AMP47

Making generalizations about womens survivalship is cruel. This study has  1000 women with breast cancer what type of breast cancer was involved in the study? Since no distinction about type, grade, tumor markers, etc. we all know the terminology, then conclusions  do not apply to all BC women. The professor in the article has it right - to many variables missing to substantiate the claim of 1 in 5 have recurrence.   

Stats are determined on certain population characteristic.  Unless you have the same exact situation as a women in a population being studied,  we are all chemically different, so, again, the results do not apply to you. 

I am surprised to see someone championing Komen being the organization that is fronting the race for the cure. They do not give the majority of their donations to cancer research.   Before a bunch of replies are sent my way , read their financial statement and statement of income do little math and you will see clearly, out of millions of dollars very very little to research, pitiful amount. 

Plenty of awareness is already in the public arena-I am pretty sure everyone understands the dangers of breast cancer. More research is needed-but the money collected for research needs to get to the scientist first. Komen is not one of the organizations that forward money, collected for the cure,  on to scientific research to find the cure.

All the other comparisons about stats comparing, comets, cars or what ever comes to mind is irrelevant and do not apply to breast cancer.     

How a person processes or copes with unsettling information is distinctly personal.  Categorising a person as "sand surfing head dweller" or a person who prefers to be surprized rather than acknowledge danger, is an absurd observation: the point would be?  

Choice allows a person to select the way they deal with uncomfortable feelings. Guess what its their choice. Is their donation, volunteer effort or pink T-shirt going produce a cure-no.

One very real life example.  A group of physicians found a cure for a childhood leukimia.  Big pharma, cancer organizations, including Komen, American Cancer Organization, and many other refused to help fund the research.  

Reason they refused to help fund the study-the hospital owned the patent on the drug and no one would benefit from the drug except  the hospital that would use profit for more research, the patients in need of the drug - but not Big Pharma and other cancer organizations.  Well, this story ends well, trials were completed, the drug was developed, young people with luekemia and the funders of the study were very happy.

Here is the dirty little secret of the cancer organizations. The funder's who backed the hospital were the parents of a patient of the hospital.  Unfortunately, their  son died because the above organizations would not fund the research work if they were not in on the profit side of the drug money.

Sadly, they lost their son due to the greed of big pharma and cancer organization. But, they (mom and dad)  helped many young people continue to live good lives with their parents- an option not afforded the father and mother who paid for the study. In this case, the money given to the hospital went directly to the study. Not some benefit package, vacation, or  salary of some executive.