Not Buying Into It

1Athena1

AMP47 wrote:

.....  

Athena's exit form this thread reminded me of....."

I exited this thread?? Are you talking about someone else?? Confused.... 

Anonymous

Gutsy- well (and *succinctly*) said!

No harsh words here!

mollynminnie

Gutsy wrote:

I also think it is not unreasonable for someone to ask, what type of breast cancer you have and what grade, given that 16 pages have been about you. If you decide not to have chemo or radiation and are node negative, ok makes sense. Not putting it into context makes it confusing and has allowed for very mixed emotions.

You now, I have to say I absolutely agree with this- and in fact- therein lies the reason why there has been so much discord here.  I truly believe that if everyone would have known Pompeed's statistics from the get-go-  the posts would have been MUCH different.  There is so much gray area anyway- but how can we legitemately offer our opinions when we don't know Pompeed's diagnosis?  Yes- I choose to not list mine in a signature line- but would be happy to share if anyone asks.

If Popeed is a lower stage and no nodal involvement- well now we can all understand her thought process!!  But higher stage and/or nodes-  well then some of us can offer our educated opinions.

Molly

otter

AMP47 told us that her breast surgeon said:  "Your chance of recurrence is either 0% or 100%."

What that means is that AMP47's breast surgeon ought to go back and re-take high school algebra.  And, it explains why so many women here have resigned themselves to accepting that their personal "chance" of a recurrence is "fifty-fifty", or that the whole thing is "a crap shoot."

If it comforts you to think there's no point trying to do anything about reducing your recurrence risk because there's nothing you can do -- after all, it's a "crap shoot"; your chances are "fifty-fifty" -- then try these on for size:  Your "chance" of being hit by a meteorite as you fix yourself a sandwich for lunch today is fifty-fifty.  It will either happen, or it will not.  Your "chance" of contracting HIV by opening a can of Coke and drinking from it is fifty-fifty, because it will either happen, or it will not.  Your "chance" of becoming pregnant while sitting at your desk at work and finishing a Word document is fifty-fifty:  it will either happen, or it will not.

See how silly that is?  Do you really believe that you have an equal chance -- a flip-of-a-coin chance -- of becoming pregnant, as you sit there at your computer in your office? Let's assume, for the purposes of this argument, that you don't routinely engage in unprotected sex during the critical phase of your menstrual cycle while typing at your computer at work.  But, even if you did, the odds of a pregnancy are not likely to be 50:50.

The events I've described -- pregnant or not, HIV infection or not, meteorite collision or not, ... and, yes, cancer recurrence or not -- are binary events.  They will either happen, or they will not -- there is no in-between.  The light comes on, or it doesn't, when you flick the switch.  The car engine starts, or it doesn't.  Your child comes home on time, or she doesn't.  The sun comes up in the morning, or it doesn't.

Those events either happen, or they don't.  But, the chance that each of them will happen -- the odds -- the probability -- is nowhere near 50:50 in any of those cases.  It's not like a coin flip.

Yes, your cancer might return.  But, the odds of its return are, for most of us, not 50:50.  (They aren't "0% or 100%" either.)  It's true that each of us has a unique set of circumstances that will affect our chances of a recurrence. It's also true that the "numbers" some of us have been given (I was told a 17% chance of mets if I declined chemo) or we calculate on-line from CancerMath or Adjuvant! are based on large groups of women in clinical trials. Some studies are better-designed than others, but researchers do the best they can to control for as many variables as possible.  Even so, it would be impossible to design a study in which every single participant had exactly the same tumor and risk factors and lifestyle issues as any one individual patient.  That's why there will always be some error in the numbers.

That does not mean the probabilities -- the hated "statistics" -- are worthless... unless, of course, you decide to ignore them completely.  In that case, you might as well not eat a healthy diet, and not lose those 20 extra pounds, and not cut back on that alcohol consumption, and not have those regular mammograms ... because, if it's a crap shoot, there's no point trying to do anything to change your risk factors.

otter

misfit

mollynminnie - Maybe she doesn't know yet. If you have unclear margins can the doctors really tell? So she has now had a second surgery, but maybe scans still need to be done. I was diagnosed in January but didn't know my stage until the end of March. And really, what does it matter?

otter

"... how can we legitemately offer our opinions when we don't know Pompeed's diagnosis?"

Maybe I'm missing something...  Did Pompeed ever, in any of her posts, ask any of us for our opinions?

This insistence that Pompeed somehow owes us more information about her medical status is beginning to p*ss me off.  Anybody here ever heard of HIPAA?  Pompeed is under no obligation to tell us anything about her diagnosis.  If that hampers our ability to "offer our opinions," well, maybe we should re-think things.  This is Pompeed's thread.  She started it ~6 weeks ago, for reasons that are only clear to her.  I've decided I'm okay with that, but that's just MHO. 

Pompeed made it pretty darn clear from the get-go that she was going to say some unorthodox things.  She has never cursed; she has gone back and edited statements she decided were not clear or did not adequately represent her feelings.  Yes, she got hot about some stuff, and some of her reactions -- her defensiveness -- bothered me.  But I fail to see why this 17-page thread, which contains nearly 500 posts, should be shut down because a handful of readers consider it "BS".  What kind of thinking is that?

otter

1Athena1

Otter - I haven't seen you so flustered before - perfect for coming back and paying our new thread another visit. Plenty of venting to do there, too.

misfit

otter - I don't think the 0%/100% was meant to be taken mathematically, but philosophically. It is similar to something called Pascal's Wager (even though the existence of God cannot be determined through reason, a person should wager as though God exists, because living life accordingly has everything to gain, and nothing to lose). I am assuming that the surgeon says this to people who have already chosen or completed treatment. Even if you statistically have say an 85% chance of no recurrence, you can't know if you are in this group or in the remaining 15%. Because there's no way to know you have to choose to believe you're either in one or the other.

Anonymous

Hi All - just found out that my onc doc wants a 15.3 cancer marker blood test done...anyone elaborate on this, I believe it's just another cancer marker but why would he want it NOW when I'm almost 5 years out and has not requested it once before....it's for lung cancer and prostrate cancer too I understand...well that would explain why the guy I'm with tells me every surgery I have I should com eout with a weiner and cheeseballs...yeh, you read that right....perhaps it's because he has NONE!!!!

Lowrider54

Ok, where did she go?  Who is talking about children?

I had the rather exclusive position of working for an attorney who tried vaccine cases before the Special Masters.  You want to debate law concerning children's rights?  To mandate that children receive a vaccination prior to attending school, being involved in any organization, or being born - a vaccine that carries with it a danger, potential side effects, and rare totally debilitating lack of brain and motor function for the entire DURATION of the child's life - we, as parents believe we are doing what is best for our child, the doctors are recommending it, we sign a paper saying that we acknowledge the risks but have you ever read it?  Is anyone aware of the potential dangers?  Has anyone ever seen a child that has had that 'rare' reaction to a vaccine?  It is the saddest of anything one could ever imagine - for the parents who are virtually 'ordered' to have their children vaccinated and the child - it can happen at any time during the vaccine schedule - from birth to that last one at age 18.  From birth, you only know your child one way - never having a normal life - later in life, your once normal child becomes forever changed.  It is no better or worse in either case - and the only compensation a family torn to shreds can be offered is money.  Since a vaccine case can take up to 20 years or more to come to resolution - it is a totally broken, financially ruined and likely separated family you finally get to hand a check to for millions of dollars.  Our office settled one case and had 6 more in process during my tenure - would I subject my hypothetical 13 year old daughter with breast cancer to chemo therapy if it would prolong her life and give her the chance to have a 'normal' young adulthood?  YES, I would just as I signed that paper when I had my son vaccinated - I accepted the risks in the best interest of my child in both cases. 

Pompeed - I do stand with you on your issues of privacy and I do very much respect what you do.  Where they wanted to do a lumpectomy, I chose a modified mascetomy with node removal and skin sparing.  Where they wanted to give me the ACT, I chose CMF and kept my hair, they wanted to do radiation, I declined.  Personal choices.  What is right for the individual at the time.  Sure, I wanted to show you other points of view but, the decision was and is yours and yours alone.  Just wanted to be sure that it would be an informed decision and had a chance to 'see' another's experience.  If you took something with you, great - if not, ok too.

Lastly, there were a time or two that I did 'personalize' some of the comments - I think it is more human nature to react to a 'you' that way than the actual context of the statement.  'You' can be the individual you or 'you' can be the collective you - like I have said before, the most difficult part of this journey with breast cancer is the beginning and somehow, once a decision is made and a direction choosen, living comes back and while still there, that raw anger seems to sink just a bit below the surface and rational thought returns.  Oh, by no means does it stay that way - one of the reasons it is a roller coaster ride...I am very proud of you that you held by your convictions and made the decision that will work for you!

Ride On! (you on the horse, me on the Harley)  LowRider

Anonymous

Oh and he's a smoker too so I get to breathe that in as well....ugh. He won't quit, not even for me and my health let alone his own...HELP ME!!!! I suppose he wants me to go down with him in this sinkin gship ofours I can see that now and have for sometime....you would think if his mum passed from lung cancer and his father had it then a few years later prostrate cancer he'd be, oh heck I'd better take care of myself...NOT THIS ONE!!!

Anonymous

Lowrider54 - I'm another Biker Woman...lost my bike in divorce 2 years ago...bought my first one right after my DX, rode the son of a bunny all winter, everywhere even to my chemo and rads...looking forward to getting my life straigtened out and purchasing "one" again....I've traveled into MN to riding, use to take single trips everywhere, camped out or hooked up with friends, had some great freinds then and will never forget their support while I was battling divorce, abuse and BC....that saved me!

Pompeed

Gutsy wrote:

"I just find it so painful to read the narratives of women trying to defend themselves for having chosen chemo after others wrote all the negative stuff about chemo, and further treatment. Even women with stage IV cancer are defending themselves. I want to scream, you don't have to explain yourself, you did the right thing. There are so many different types of breast cancer, all requiring different type of treatments. Some of us have more options, lower grade of bc, can opt out of chemo or radiation. Than there are others, who have very few options and pretty much need chemo to survive. I also think it is not unreasonable for someone to ask, what type of breast cancer you have and what grade, given that 16 pages have been about you. If you decide not to have chemo or radiation and are node negative, ok makes sense. Not putting it into context makes it confusing and has allowed for very mixed emotions."

I too found it very painful to read the narratives of women.  But I do not see that they were defending their choices.  They were narrating their choices and explaining how they came to their own decisions and why they came to them.  Given the state of their cancer and the state of their lives.  I don't see that any one of the several hundred notes here which I did not write changed anyone's mind about doing whatever they are doing.  Some women have said they changed their own minds  about their treatment given their own circumstances and situations and those alterations took place long before I showed up.

Some people have options and some don't.  If it's been said here once it's been said a couple hundred times: people need to make and do for themsevels and their own situations the best they can.  Period.  Full stop.  End of thought. 

The 16 pages have not been about me.  There are about 500 notes and my contribution to that number is under 80.  So the majority of the notes are what others have said about themsevles and almost every one is a personal narrative.  Furthermore, if I thought for a moment that discussing my personal medical information in front of the entire world would have gotten me out of 2 surgeries and put my life back the way it was before last Memorial Day with a guarantee that it would stay that way, I would have done it. 

It makes no difference to anyone else what my diagnosis is.  And if people have gotten themselves into emotionally ambivilant or confused states by what a stranger writes about herself and no one else, they have far larger problems in their lives then just breast cancer. 

I don't owe anyone my personal information and I did not come here asking for advice or help.  My choices only have to make sense to me.  No one else. And Misfit has a valid point: for those who are beating me up for failing to put my diagnosis out into the ether for the world to see, the possibility never seems to have occurred to any of them that a diagnosis hasn't been sorted out yet. 

And why in the world would I ask a total stranger, who isn't even a doctor much less my doctor, for advice about how to treat my cancer?  It's valuable and helpful to listen to people who are willing to share their stories and their experiences.  It's another entirely to expect the same people to have anything really reliable to say about the cancer of a total stranger they have never even seen much less treated should undertake. A chemo experience that's a piece of cake for one person may be hell on wheels for someone else.  There are plenty of stories here about those differences.

I wrote a note which concludes with my own thinking about my own situation and circumstances and a bit of my past history.  And a well wish to all others.  There's nothing in that note which asks anyone to do anything for me.  Nor is there anything in it which castigates anyone else's choices for themselves.  I don't know why that simple concept of to each her own is so difficult to comprehend.

And maybe that's the fundamental problem: maybe some assume that whoever shows up on an Internet bulletin board such as this one must be in need and have come seeking help and reliable advice. 

Lowrider54

Athena...get those perky B cups back here...you are NOT leaving me alone on this thread..love ya girl! 

And now, finally, a very inspirational and thought provoking thread...please check your sword at the door and don you armor if you are feight of heart - all opinions welcome, controversal or otherwise - a couple of guidelines: the use of 'You' should be in the collective sense - try to avoid the 'personal' you (can get kinda touchy) - fight nice and no individual cat fights allowed (pardon Cat, nothing personal intended - glad you fought for the CMF) and if you wish to RANT - please state so at the beginning of your post - it will avoid misunderstandings later.

Pompeed's intitial post was a RANT in the absolute sense - she was brand new and didn't know (oh, she knew in her heart) - we 'older and wiser' of the lot should have recognized that immediately and likely could have staved off the charge to bring down Pompeed's wall. 

So, how deep did I stick my foot in it this time???? 

How about a toast to 'differences of opinion'?  I'll have Asti...you?

mollynminnie

Great point Lowrider...

If the original post was labeled as a "RANT" I think it would not have been perceived quite differently.  I, like most others, were assuming Pompeed wanted something (advice or opinions)-  thus that is what she was given.  A "RANT" is recognized as "blowing off steam" or "getting this out in the open", etc. etc. 

I'm surprised no one had stated this earlier, as now it seems quite obvious.  A rant is just that- a rant.  Say what you want and others will listen (read).  Anything else is perceived as a request.

Thanks for clearing that up for all of us!     

mollynminnie

ooops...

The first line should read would HAVE been perceived quite differently.

AmyIsStrong

Otter's post put sitting at my desk working in a whole new (and more interesting light). Never thought there was ANY chance of getting pregnant just sitting here. 

mollynminnie

LOL Amy!!  

Pompeed

I suggest the following scenario will change the odds of pregnancy: virile male and woman of child bearing years, neither one using birth control, and both working at home at adjoining desks.

misfit

Pompeed - That comment sounds like something Amy Farrah Fowler (The Big Bang Theory) would say.

gutsy

Fair enough, but we do not exist in a bubble or vacuum. I can tell you people are definitely influenced by what others are writing on this board. We are not just ships passing in the night venting information. Personally, when I have a breast cancer related issue I struggle with I certainly like to hear other people's experiences, opinions, etc. Women here become experts on their own disease and care and share information. I bet all my money (not my house) that other women take what is discussed on the board and have it influence their treatment and care in some way. Personally, oncotype testing which is relatively new to Canada and has only been funded on a pilot project here in BC was brought to my attention here on this board. The women who discussed the testing were not physicians. They gave me valuable information that influenced my discussion with my oncologist.  

We are not using word on this thread are we?

 Pompeed in all respect, you may want to read some of the posts you wrote on page one of this threat, to have a bit of understanding why some of us, including or especially me jumped out of their seat. I think you have become somewhat milder and less hopeless in your writing along the way. I am not saying this to start another argument. I am too tired for that.

lago

No one on this site is expected to post their diagnosis. Even when you fill out the form you don't have to fill it out completely and you certainly don't have to include it in your signature. I think you can ask someone what their diagnosis is but demanding or expecting the poster to reveal is rude and unrealistic.

I have posted my info because I thought it might help some women. Again this site does not require you to help anyone. Most of us come here initially to get help, get support, rant and/or get advice but not to support others. I think some women's journey brings there there.

Also I was very private initially. I didn't post my photo. Over time I got over that although at times I still consider removing it for privacy issues.

AmyIsStrong

I have noticed a significant change in Pompeed's 'tone' as the time has passed.  I know for me, I was not-in-my-right-mind immediately at diagnosis. I couldn't even come to this site and read anything - I would start to fall apart again.  I didn't eat, sleep, function and lost 12 lbs the first 3 weeks (wish I could lose 12 lbs that fast NOW!).   So I appreciate more than anyone how intense the beginning is. And then, almost unbelievably, you get your bearings and start to 'get used to it.' I never would have believed that in the beginning, and yet it seems to be true.

So Pompeed, you have stuck with us, we have stuck with you. And when tempers cool, and passion fades a bit, the true sisterhood nature of our relationship prevails.  And that is what I have seen on this thread as time progressed. And I am glad.

As an aside, I live very close to you (I am just outside of Newark, DE).  If there is anything you need, or want to discuss re medical stuff or anything else, please PM me and I would be glad to help - phone call, visit, coffee, anything.  In fact, I have a very awesome naturopathic doctor who is located in the Christiana Hospital complex - I saw him during chemo -he might be someone you would be interested in consulting with. He is a D.O. but his practice is naturally-oriented. I trusted him because he had a strong medical background but an alternative focus. Of course my onc hated the whole thing but I persisted.  See - there's a bit of the rebel in all of us!

Amy

kadeeb

I'm sorry everyone, but I'm still hung up on those pregnancy odds. Otter scared the crap out of me.  I work at my desk every day (sometimes on a Word document) and those chances have never crossed my mind. Now Pompeed helped me a little with the visual setup but I'm thinking about taking the day off tomorrow. I'm 59, menopause 5 years ago, one good boob, one sort of clownish, no good looking men around and if you guys still think I'm in danger, I may retire.

lisa-e

We really need a like button on this site.

Otter, as always your posts are well written and thoughtful, but kadeeb your post truly deserves a thumbs up. 

Titan

In the movies they "do it" on desks..Have you ever watched The Office?  Hmmm..I think my desk job just got a little more interesting! 

This is hilarious..I don't want this thread closed down now..it's getting way too fun.

kadeeb

Crap! Now you tell me I have to clean off my desk!  This thread is beginning to depress me. I'm sure by the time I cleared out a spot everyone would be out of the mood.

lisa-e

kadeep, just sweep the piles onto the floor....

gutsy

You may have to be sitting naked at your desk. For those "so called working from home" this may be a reality.

 Yes, I love the office. Especially the British version. You totally forget they are actors, they look so humble, odd and real.

allalone

Titan:
Glad you've changed your mind about closing down this thread! I think a lot of people were confused because Pompeed posted in the "help me" forum when she merely wanted (I think) a healthy, open discussion about our tx options and quality of care concerns, etc  Someone upthread, I think it was Athena, suggested a separate forum for philosophical/ethical issues and I second that. 

Otter:
No need to back off. Your beliefs are highly regarded here and because so many of us *are* worried about our other breast there has to be a valid reason for us to feel this way. I'd rather remove it and be done with it, but only BRCA patients get that option (and the test has been denied me because 50+ and ER+PR+ indicate no genetic involvement - is that right?)

Pompeed:
Hope you're back in the saddle and enjoying life again.