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

Kam170... I, certainly, did not want to give the impression that I felt everyone should feel like me and adjust their emotional parameters accordingly.  My opinion, as stated above, is merely how I think of the whole "recurrence risk/outcome" situation: it will either happen or it won't.  I have done everything possible to protect myself against a recurrence, but I will never know for sure that it worked... until I die of something else.

What I cannot do is spend the rest of that life worrying myself sick over the statistics, risks and outcomes, that were - for the most past - compiled years ago.  Most clinical trials run 5 years; some run even longer.  By the time all the data is scrutinized, analyzed and documented, the information released is already out-of-date.  By the time the drug is brought to market (if it's a new compound), it can take years more before the government reviews all the data and makes a ruling on whether- or not the drug can be marketed and to whom.  And, having worked in an international pharmaceutical clinical trials department for years, I understand completely how the numbers are gathered, "crunched", and manipulated in order to highlight the best aspects of a particular trial.  The purpose, after all, is to get that drug to market and to make as much money as possible before the drug is taken off-patent.

Sure, statistics can give us valuable information about various trends and be, somewhat, helpful in determining treatment plans and deciding on one drug over another, but, in the end, the statistics are not going to tell us if we are going to be one of the lucky ones that survive.  All the statistics can tell us is, approximately, how many women can survive disease-free over a particular period of time under extremely limited- and controlled circumstances.  And, I might add, statistics generated by clinical trials don't, always, translate into the "real world".  On a few, notable occasions, I have been part of a research team that saw a drug that performed extraordinarily well during clinical trials, only to self-destruct so badly when it reached the wider population, that it had to be pulled from use.

My lifetime risk of recurrence (and, yes, I do know it) is around 12-14%.  I could drive myself nuts worrying about that number.  I could drive myself just as nuts with worry if the number were lower or higher.  Or I could turn it on its side and interpret that risk as an 86-88% chance that I will be just fine.  Or I could believe that I will either relapse (100%) or not (0%).  It's all a matter of personal interpretation. 

I know that a few of you were greatly incensed by my earlier comments on whether to BRCA test or not.  And I understand that it's a deeply personal decision whether- or not to undergo genetic testing.  But, for those of you who reacted angrily, you completely missed the point that I was making, which was - for me, personally - it seemed to be a moot point and - as a result - I, again personally, did not feel compelled to undergo genetic testing based on my own, personal history and circumstances.  I did not, by any stretch of the imagination, tell anyone that this was a useless thing to do.  I, merely, stated that - for me, personally - I did not see the point.  Whether- or not I was BRCA positive or negative was not going to change anything for me.

It's the same with this whole recurrence risks/outcomes/statistics thing.  FOR ME, PERSONALLY, it does not answer any questions or provide any insights into whether- or not I will get cancer again.  For me, personally, they are only numbers that cannot predict the outcome of my individual situation.  Yes, they can give me an idea of my overall chances of disease-free survival, but they cannot predict if I will survive disease-free over the long-term.  And, if I look at it that way, worrying about it is not going to make a bit of difference either way.

[And, by-the-by, despite my cynicism about clinical trials and recurrence risks/outcomes/statistics, I am - currently - participating in a clinical trial.  Why?  Because I realize that it's not always all about me, personally.  And if I can help - even in some small way - make a difference somehow, then that's a good thing.]

And, yes, I do object to worrying about the "what if's" for the rest of my life.  I'd rather be living it to the full, then being constantly afraid to do this, drink that, eat something else, and - otherwise - being beaten down by something I do not have any control over.  After what I've been through over the last year, I am interested in the RIGHT NOW.  I have no time for "what if".  "What if" could never happen.  RIGHT NOW is happening... well... right now.  Life is meant to be LIVED!!  I hate the thought of being too afraid to live.  Life is much too short- and precious to be afraid of living.  There's too much to live FOR.

I do not want to be defined by cancer.  I do not want to be a victim of fear.  I don't even, necessarily want to be referred to as a "survivor".  I do not see my cancer diagnosis as a reason to see myself any differently than before.  I am alive RIGHT NOW.  That's all that matters.

Again.  My personal opinion.

Kam170... well, first of all, my MO - after reviewing my medical/personal history - said that I wouldn't meet the criteria for BRCA testing.  I, then, asked if I could talk to a genetic counselor anyway.  She referred me for an appointment and my appointment was booked for July 2012... a year after my surgery and months after my treatment was to end.

In preparation for the appointment, I was sent a whack of paperwork to fill out in order to assess my risk.  After researching my family history, I discovered that - other than my mother and I - there were no other cases of breast cancer in over four generations of my family, on both the maternal- and paternal sides.  There were, also, no cases of ovarian cancer, pancreatic cancer, stomach cancer, bile duct cancer or melanoma, all of which are, also, BRCA-related cancers.

Based on that .lack of evidence, I spoke with a friend who is a medical practitioner with access to a software programme that the medical community uses to assess BRCA risk.  When all my known risk factors were plugged into software, my BRCA risk came back at 2.2%   You have to be over 10% to qualify for genetic testing.  I realized that my MO was right; I wouldn't even qualify for testing. 

Moreover, I knew that - if, by chance, it did turn out that I was BRCA+ - I would not undergo prophylactic surgery.  For me, personally (and I stress, that this is my personal opinion of my own situation), it does not make sense to remove healthy organs on the chance (and, yes, I understand that it would be far greater than the general populations') that it may happen. Yes, removing my breasts and ovaries means that I could greatly reduce my risk of those cancers, and I can even remove my stomach to reduce the risk of developing stomach cancer. But, in the end, after removing perfectly, healthy organs on a "what if", I would still be BRCA+.

So that's when I decided that - for me - BRCA testing was simply "moot".  It wouldn't change my treatment plan - which would be months behind me by the time I saw the genetic counselor - and it wouldn't change my follow-up going forward.  As a Canadian, and a breast cancer patient, I have access to life-time screening.  Not that screening helped me much.  I was enrolled in the provincial breast-screening programme at the age of 40 and received annual mammograms right up to my diagnosis.  None of the mammograms revealed a developing cancer.  For, at least, four years, I was receiving false negatives.  Even my diagnostic mammogram was "inconclusive".  Going forward, I am, still, going to get mammograms every year and I will have extensive, follow-up monitoring for the rest of my life by the local, provincial cancer centre.  I am, also, participating in a clinical trial for the next five years, which will involve frequent screening and tests, and - as a result of the clinical trial - will be tracked and screened for the rest of my life.  Knowing whether I am BRCA positive or negative will not change that, either.

[And, again, I must stress that this is a personal opinion.  What I decided to do and why I decided to do it has absolutely no bearing on whether- or not other people should undergo genetic testing.  Genetic testing can be an invaluable tool in determining risk management.  Everyone must do what is right for them and what will help them moving forward.  If it's important to you to know this information, then - by all means - I will be the first one to tell you to go for it if it will give you peace-of-mind.  But, for me, it would make little- or no difference to my risk management going forward and I simply don't feel compelled to know.  And before somebody points it out, I have no children that would be affected by my decision.  The buck stops with me.]

And, by-the-by, I'm already in an ovarian screening programme.  Again, started at the age of 40.

[Edited to add]: What I did discover as a result of filling out all the genetic paperwork is that my chance of dropping dead of heart disease, heart attack or stroke was massive.  Nearly half of my first-degree relatives - on both sides of the family - died of a catastrophic cardiac- or cerebrovascular event.  In contrast, of my 78 first-degree relatives, only my mother has had breast cancer.  So, by rights, I should be much more worried about my heart than my breasts or ovaries.

Interesting that this has turned to BRCA testing.  

I think another factor to consider would be who else in your family would a positive test result affect?  I've got a daughter, she's 5 so doesn't have to think about screening now, and a younger sister.  My aunt (non-bio) with ovarian CA and a concerning FHx of ovarian and breast CA, has three daughters, but declined to get tested.  One daughter has payed out of pocket to be tested.   It makes much more sense to me to test the index case.

78 first degree relatives?   

Selena,  you don't have to defend your decision to do BRCA or no BRCA.   BRCA is an expensive test for a low probability positive.   

I didn't do BRCA test either, but because of my young age, I got in a clinical trial that will test BRCAs in addition to a bunch of other hereditary genes.   It's not deep sequencing of tumor genes.  But hope scientist figure out something new.   

http://depts.washington.edu/kingweb/ 

On the other hand, I think the probability of 100% recurrence or 0% recurrence is just a fallacious argument.   It's like saying Titanic has 100% chance of sinking or 0% chance of sinking, so we should just party on and not worry about providing life boats for all passengers.     

Personally, if i'm on a ship called Titanic, I'd be busy reading up on "Sailor's guide to icebergs" or "Surviving shipwreck for dummys" or "Clinical trials for hypothermia in arctic waters".   I'd be the killjoy running around telling everyone to find a lifeboat or improvise a lifeboat or stitching up a thermal suit or whatever.    i would certainly NOT be enjoying life to the fullest, whatever that means.    And until that Titanic docks safely, I'll just delay my partying a bit.

As always, I'll conclude with urging clinical trials on every BC patients and to spread the word about ispy-2.  Stick a toga on me, i can do a good Cato impersonation with my bald head.  "MBC must be cured".  and faster clinical trials are the way to do it.   

Thanks for a lot to think about, as usual.  Very interested to hear about the new trials, thanks for sharing that info.

In my opinion, the issue with the 100% or 0% thinking is its completely me focused. In one way, the statistics are a poetic reminder we are indeed in this together and our answers cannot be gained by trying to go it alone. That is, of course, beyond the basic logic of making decisions based on evidence, something each and every one of us has benefited from in cancer treatment since the old days of chemo without hormonals having been discovered. 

Selena, clearly we think differently and we won't change minds, I'm simply putting out my take on things.  I've respected your thinking without rudeness, so I'll ask the same in return.  Oncotype stats were everything to me, not just numbers.  It was hope in a hopeless situation.  Poetic (having an emotional impact), symbolic, whatever--it was more than just the number 12.

I hope you understand that I respect your opinions, and in fact they shape the way I see all of this.  So actually, truth is, many of you have changed my mind.  And I thank you.  Have a beautiful weekend!

Edited to add:  my Oncotype was 12, but I still did chemo.  It's complicated, and IMO, it's far from the only determining factor still. The symbolic part for me was, with that number, my mind was freed.  I really thought I'd be dying...soon.  Hey, I still may.  You are right about that part.  But maybe not.  And believe me, that psychological freedom has been everything. It has allowed me to get my life back, even though I struggle like crazy every day of the week as a 41 year old in menopause who still belongs to the medical establishment (three tests next week, just in case I'd forgotten my lot!)

Thanks, Selena.  You bring tears to my eyes.  Menopause has been the saddest and most excruciating body change of my life, much harder than chemo and hair loss.  I am watching my peers have children--it's not that I wanted them biologically, it's just that it reminds me of my cancer (so does women complaining about cramps!).  So yes, it is so liberating, but I've had to overcome the fact that it made me a freak and is ageing me very quickly.

LtotheK ... menopause does not make you a freak!!  No matter how it came about, menopause is a natural part of our cycle.  Different women come to it different ways.  We just happen to have chemotherapy-induced menopause, but - even if we didn't - it would have happenend, naturally, in a few years anyway.

As for aging ... well ... I don't suppose there is anything we can do about that, cancer or no.  As a witch, I believe that a woman's life, naturally, falls into three phases: that of the "Maiden" (young and virginal); that of the "Mother" (abundant and fertile); and that of the "Crone" (strong and wise).  The Crone is old - yes - but She has, also, accumulated the wisdom of a lifetime.  She has experienced things and learned things, that She can teach us.  She is the backbone of the community; She is the wise woman, the midwife, and the layer-out-of-the-dead.  Yes, She embodies the darker aspects of our life - death and dying - but She, also, embodies the acceptance of the Life Cycle; creation-destruction-recreation.

Our "crone" phase is very powerful.  Although She can no longer bring forth life Herself, the Crone continues to help others do so.  She is the backbone of Her family and community.  She has much to share with everyone.  With Her knowledge and wisdom, She is the keeper of laws: with Her insight, She helps maintain balance, harmony and justice for those She loves.  Her step is firm and confident.  Although She sorrows at the passing of life, She, also, celebrates the creation- and nurturing of new life.  She stands at the apex of the life cycle. 

As D. J. Conway said so eloquently, "... She is the Builder who breaks down and rebuilds, the last Fate who cuts the life thread to its allowed length.  She is the key to life, the light within the darkness, the Power behind the Mother's throne.  With Her aid, our eyes are opened to the deepest of spiritual mysteries, and we gain the knowledge needed to plan a new life, whether that be within the one we are now living or the next life in a long cycle of life... She is the natural end of all cycles, even mental and spiritual.  The Crone is our will to rest and be revived, our intuition speaking when a relationship or activity should be ended.  She is the balanced destructive-recreative seed within the cells of every creation, whether human, animal or galactic body."

When I think of my menopausal years, this is the way I like to see them.  Wisdom.  Experience.  Justice.  Power.  Value. Acceptance.  Yes.  I am a Crone.

LtotheK - going through menopause early because of cancer treatment has to be very difficult.  I really feel for those of you who have to deal with both.  My SIL has had to go through it.  Has really struggled, but now sees a silver lining as no more periods.

I've wondered how I would have handled the emotional part of it.  I went through menopause rather early (at a profoundly stressful time) and was shocked at how it all aged me.  I'd always looked 10 - 15 years younger, which had it's good and bad sides.  Suddenly I looked older than my age and had to confront who I really was and where I was in my life at that time.  

Our vainities are what they are.  Looking young because of good genes and health (and being short) was always a given in my family and was linked to living long lives.   Now that I'm on Arimidex, I'm looking in the mirror for further aging.  Scars from surgery will mostly disappear, good health can be recovered from chemo and rads,  flabby arms and body can be toned, hair may return to it's normal texture and length, and new clothes and bras can take care of the body changes.  The loss of estrogen registers in your face.  Will I in a year again hear a doctor say, "Oh, you had chemo because you are so young?" Then looking at my chart, "Oh, I guess you're not."  Probably not.  But it's time to accept who and where I am in life and determine what I can contribute based on that.  

doxie

I went thru meno at age 41 (natural) and  most people took me for someone ' in my 30's".

It's very odd, but I still looked younger than my years until app. a yr or so ago ( I am 54 now)
Quite suddenly, I developed lots of wrinkles all at once to add to the very tiny crow's feet . On top of that, I started to notice a few hairs here and there above the upper lip .  I have to wonder if that was when my BC  sort of " took off' ( big enough to show on the mammo), if there was some hormonal change . I dunno'.  If that makes any sense , who knows.

I just know, I look 54 now.

Luckily, I actually am 54!

Serena.....  I'll take the "wisdom" but not ready for "cronedom".....or at least not yet.  That was one of the things I learned when I spent a year studying in Paris.  How wonderful older French women look.  I will say being there, that it takes paying attention and discipline.  But still think I convey energy, brains, and vitality.  I dare rock spandex.

I found definite benefits to menopause including:

• You can wear real next-to-nothing underwear.
• You can also wear white jeans.  REALLY!!!
• You are less moody.....none of those PMS lows.
• None of those monthly skin eruptions.
• You finally know what looks good on you, and you don't waste time with the the rest.
• You waste less time on thankless tasks.
• You ditch the clothes that aren't comfortable as well as stylish.
• You finally appreciate admiring glances.  We are so conditioned to thinking that just young women get looks.  Not true, as had to point out to a friend of mine that the driver of the pickup truck when she was making a left turn on her bicycle most likely enjoyed the view.

There is more, but you get the gist.   Of course, you do need to exercise, eat reasonably, and make sure you wear clothes and makeup that suit you.  I get help with the latter as also need to refine my technique as my look changes.

I took this journey as a chance to re-imagine my look, and now am mostly there.  Still need some wardrobe stuff as my new career direction requires different clothes for meetings.  I had the basics, but not enough for 2-3 meetings per week.  Plus, everything needed updating.

(And new cycling clothes, as really wear these out!!!)

I am planning on being here and making sure I enjoy my life to the fullest.  This assumption also impacts financial decisions.  Because it means I need to continue to work and plan on living to 90.  So could not draw down my long term savings. Remember that at least an 85% chance that I will be here, and I don't want to be impoverished 20 years hence.

I am taking this time to experience and try new things. That was also one of the epiphanies I had with menopause....that the worst thing to do is squander our time on this earth. Being on Arimidex hasn't changed this much.

As for appearance.....yes, I am older, but think I look fab. I use more than my share of face creams and makeup. I keep my hair color up and my locks trimmed. I am disciplined about exercise. However, I still need to take off 10 pounds. But career first.

And I rock white jeans as well as a scandalous underwear collection! - Claire

Claire,

You sound very happy and enthusiastic in your many posts about the importance about happiness and enthusiasm. However, this is a forum about clinical trials, research news, and study results.  Did you understand that?

AlaskaAngel

Ok , I have to speak up in your defense L to the K .  You said nothing wrong, and in fact, you were not the first one to express an emotional side to this issue. That is because there IS an emoptional side to all that we deal with in BC.  I'm sorry AA, but you cannot post a subject and censor people from adding in their feelings about the matter.

Speaking for myself, I did not mean to be offensive or even to go off topic, but the stats presented were one thing- the WAY in which they were presented, along with the preface was what I believe created the emotional stir.

You stir the pot- you get the soup.

Let me help try to recalibrate to the original post, which was that 1 in 4 women will see her cancer come back in 10 years.  Menopause in young patients is thought to assist in overall survival.  I hope I'm alive in 10 years, and based on the evidence, I'd gladly take menopause again in order to up my chances. As well as chemo and Tamoxifen.  In fact, I'd have preferred better risk assessment earlier from my team so I could have been on Tamoxifen years ago, and possibly avoided where I am now.

Jenrio calibrated the thread to talk clinical trials, but in fact, the original post was simply a report that 25% of us are still stuck having this disease return.

There are rational and irrational feelings associated with this, and in fact whether a reaction is rational or irrational is up for debate in many cases.