Not Buying Into It

Lowrider:

I only believe in one statistic: 50-50. That's all we have for most anything we do in life. And your story is more illustratuive of that than anything.

I wish we could tell the experts to stuff the statistics up their noses. I don't even plead to be treated as human; I just ask that they understand maths and, I'll say it a million times, STATISTICS CANNOT BE USED TO PREDICT INDIVIDUAL CASES. 

Signed,

"Athena,"

I am:

the 0.6 percent-er chanc-er of getting bc on the eve of her dx with bc over the ensuring 5 years - er (source: NCI)!

the 0.6-1.2-per percentager chanc-er of having the more serious Bipolar Type I Disorder-er based in population percentages - er (Source: Expert Consensus Guidelines, 2004)!

the haver of a congenital heart abnormality-er which, against all odds, was cured by a brilliant surgeon-er!

The 0.000000000000001 percentager chancer of writing this now in this forum today-er!

The statistics mean nothing if you fall into the .6%. I know my chance of getting breast cancer was at least less than 2% maybe closer to 1%. Thing is we have to base our decisions on something. I was told that if I decided to stop as surgery I would have a 40% chance of remaining cancer free in the next 10 years. IMO that s*cks. If I do chemo then my chances are 68%. If I do both chemo and hormone therapy it's 84%.

After doing all that I still have a 14% chance non of this treatment will work. I know there will be people that will fall into this category. It could be me but I'm placing my bets that it is not. It's a lot better than 58%. (Note that 2% will die of other causes).

The funny thing is I think my onc felt that I would be adverse to chemo. Just the opposite. I knew in my case I needed chemo to get the herceptin to work. (Granted Herceptin is 50/50 chance of working).  It's the Als that scare me more. Chemo is only 3.5 months of my life. Al's are 5 years!

Pompeed -  I too watched my father die from cancer. He was given chemo for palliative care and I swore I would NEVER have chemo in those circumstances. There was no way he would had ever survived.

However, my husband has had bowel cancer (8 years ago) and 4 years later a met in the lung and is alive today because of his treatment (2 lots of chemo and surgery).

I have had surgery, chemo and rads and feel fine. I know the odds are that we might be the small percentage who the treatment fails but you can't give it that chance and you have to do EVERYTHING you can to stop it coming back or spreading. So, you lose your hair, you feel like crap and you get numb fingers/toes so what. Better than being sorry you didn't give it your all in the first place.

Sue

Pompeed - you have stated my opinion of treatment precisely.  You don't "have" to do anything that you don't want to do.  No one does.  We all have choices.  We have to understand our situation, assess the options, then choose the ones that we can live with.  In two of three pathology reports, my hormone status was triple negative.  The third pathology stated "weak positive for ER and PR.  I am a 60 year old diabetic and after doing all the research, reviewing every oncology study I could find that applied to my situation, I decided that chemo was probably more dangerous than the "threat" that I had a rogue cell floating around waiting to cause a recurrence.  I was told I had a 30% chance of recurrence.  I read that as a 70% chance of no recurrence.   The known side effects of chemo, along with the small statistical gain that it MIGHT provide, were not worth it to me.  Ending up with permanent neuropathy, chemo brain, cardiac damage or leukemia from the offered protocols scared me more than breast cancer.   

So I "chose" to opt out. 

Michelle

Pompeed- I think you eloquently explained your logic and reasoning for you treatment choices.  That is the point. It is a choice for everyone.  I think what had everyone concerned was ensuring, in the beginning, that you were making good choices FOR YOU and not making decisions with a lack of contemplation.  You obviously did think it through for yourself and I applaud your decision even if it is different than my own.  You did what is right for you and that is all anyone can do.

On the horse note: I assumed you had an indoor.  Something I miss dearly.  sigh.....

I think the decisions are much more difficult and complicated in the early stages. At stage iv, the stats and the numbers and the weighing of one's choices all fly out the window. Some decisions are no-brainers... for instance, surgery on my spine vs. certain paralysis. Others are controversial, such as the mastectomy I just had  (or a "theraputic" mastectomy as one dubious surgeon called it). Although my oncologist wants to radiate, she backed down when I questioned it and admitted  "there are no right answers."  No right answers and no guarantees. A crap shoot. But I do know that a recurrence in the breast is a minor blip when you already have it in your liver. So next up: a liver ablation for Christmas, which if all goes well will put me in a sort of surgical remission. I'm basically running for my life at this point, with fear driving me onward. I'm completely exhausted, but I'm in the home stretch, and I've got my eye on the finish line. And a trip to Paris before the next race! If I'm up for another race, that is. No guarantees...

My cancer was Her2+ and my protocol was AC-TH, but I opted out of the T. If I could have had Herceptin without chemo I would have. I wasn't given the choice of only AC, I found out on my own that I would still be eligible for Herceptin with only that. If I'd found out after the fact I would have been extremely upset.

Well said, Lago!

I had the opportunity to meet someone from here yesterday.  We talking for 3 hours.  This is the first time I've had the opportunity to have a lengthy conversation with someone facing BC diagnosed at the exact stage as I.  It was so extremely therapeutic to share our journeys through this crazy mess.  Our treatment paths have been similar; however, there have also been differences - some based on our own choices.  Regardless, they were the right choices for each of us at the time. 

As I told my new friend, I have thoughts on what I will and what I will not do regarding future treatments.  So does she.  However when "the rubber meets the road", who knows what choices we will make.  

Pomp you already know how I feel.  Do what you think is best and whatever decision you made or make will be the right one for you.  Personally, I'll be right here to support you whatever you decide.

Since you have a horse passion I just want to share with you one of my goals for 2011 - silly as it may seem.  I have ridden many times, mostly trail rides.  I always wanted a horse, but was never in the position to make that happen.  During this past year there's no way I could have gone for a ride.  That will change in 2011.  One way or another, I'm going riding.

Hmmm, maybe it's time to start that thread I told you about.  Wishing you and everyone else the best! 

We all are faced with choices everyday - which side of the bed do we get out of, what route to take to work, what to have for dinner and all those mundane things we elect without much thought or consideration.  They really aren't major life altering decisions.  This choice is.

While some agree with Pompeed's choice to opt out, many of us are trying to sway her to see that the short term pain for a potential long term gain is an optimal choice.  Some have been extremely opinionated concerning the subject, including Pompeed herself.  Early in any cancer diagnosis, emotions are the primary driving force and very close to the surface - it is an explosive time in the journey through this disease.  So much to process, so much to accept, so many decisions to make - each of us in our very own personal way goes through this process.  We come here in hopes that others can offer an opinion, share how and what each did personally to get through it and maybe we will be able to take something away with us that will assist in making our own very personal determination about how to proceed. 

I, too have tried to show Pompeed that while there are no guarantees, there are still choices - electing CMF as my chemo allowed me to not be bald.  I worked the entire time through treatment with little impact on my job performance.  I said it was hell - compared to no chemo, it was but only at times - the first week in the 4 week cycle when I got all three drugs in the cocktail.  With the help of the steroids, I partied just about every Friday night, Saturday was ok and Sunday, I was flopped on the couch.  I did miss many things with my 8 year old son.  Toward the end, I didn't want to go anymore - they changed things a bit for me and I finished.  I adapted and once the chemo brain faded into memory (or lack thereof), while fearful of a recurrence, I allowed myself to believe strongly that it wasn't going to return.  With clear scans each year for 9 years - would I have made the same choice?  Absolutely.  But that is what was right for me. 

As there is no right or wrong, black or white with this crap - only gray and a calculated best guess - we all just need to gain as much information as we can, look at all the options with an open mind, listen to others stories and come away knowing that we made the best, well-informed, calculated decision that we can live with.  Period. 

To Pompeed...electing not to treat is your very own decision.  However, please do take a good look at the Alternative Gals - consider your diet and foods that are known to aide in retarding cancer growth, supplements and other life changes that can increase your chances of survival without subjecting yourself to the toxic things in traditional treatment.  Just don't go for the 'miracle things' - they aren't.  Your quality of life will be good and you will have the joy of continuing your work.  Those gals are healthy and there are success stories.  My wish for you is that you do not choose to do nothing at all and feel like you are just living waiting to die.  You have made your decision - now live as best you can and put all those statistics and medical mumbo jumbo behind you, recover from the surgery and get back to the living.  That, afterall, is the whole point of all of this - your quality of life - time to work toward that end.  You don't want to miss another minute of it!  God Bless and please let us know how you are doing.

Hugs...LowRider

Pompeed,

I have not writing on this thread before, but now when you have decided what to do I only want to wish you a long and good quality of life!

All the best and good luck!

Carina

I have had surgery...a left mx and this week I met with a medical onc and rad onc as 4 nodes were positive.  I'm not buying into this 'one size chemo fits all' either.  My med onc suggested...well ordered me to take ACT....I asked for CMF and we argued about it.  I was laid off from my job 3 and a half weeks from diagnosis and am having financial problems.  Although I live in Canada and the treatments are free, I am single and have bills and a mortgage to pay.  I have to look for a job and I don't think anyone would hire me if I look like I am sick and have cancer.  Unfortunately, being bald is a dead giveaway.  Doctors don't take your entire life into consideration when making recommendations.  The chemo can be a crapshoot anyway.  Apparently, there is a 12% survival difference but if CMF causes me less stress...isn't it worth it?  The choice of chemo is very personal as well as the type of chemo.  My onc made it sound like with the ACT I would be cancer free forever....Ha!  People have reoccurences from that too.  I hated it the other day when I had to argue with the onc and the resident....they made me feel like I was crazy.  I even asked what chemo they would use if the cancer came back after ACT and they couldn't answer.  They were trying to do a sales job on me with the ACT and made it sound like CMF was a bad choice.  It has been around a long time and has worked really well for alot of women.  Why not let me do it?  They would not have mentioned it...I had to bring it up.  I'd rather take a chance with CMF....keep my hair....less toxicity and use naturopathic means to close the gap on 12%.  Why do some of these oncs act like we have no choice?  At least the rad onc I met with today was much more open to giving me the choice.  I had a mx on left breast 4 weeks ago.  He said with rads..increases my life expectancy by 5% but there are side effects.  I am very confused about that as well.  I had TEs placed with the hopes of an implant reconstruction but now the PS said he would have to do a Tram flap if I have radiation and that wouldn't happen until 2012.  If I opt out of rads, I could do the CMF chemo, do the implant exchange and by next September be good to go...my hair...new boob...and put this behind me.  I am 47 and there is something to be said about quality of life for the next ten years.

Cat123 - I totally understand what you mean about doctors not taking your entire life into consideration. Financial concerns strongly influenced my decisions as well. After surgery I had to relocate, so no job and after the 15 weeks of EI, no income. I too didn't think it was realistic to be looking for work while I was visibly sick. The doctors here were aware of my situation but still insisted on 6 months of chemo. My family could help me out temporarily but I was still looking at welfare as my only option and I just couldn't go down that road. In the end I did half the chemo (as I posted earlier) and then radiation. I was able to back on EI last month and though I haven't found a job yet I feel pretty good and look okay (with a wig). I wish you the best if you are also still looking for work.

I love this thread! I like Pompeed and many others here I did not 'buy into it'. I personally was ridiculed for my decision. I did have a BMX but that was after I had cancer once on the left and then again on the right. I decided that I was never going to do rads again. And after all my active treatment ended I said no to the pills. And the doctor said 'It's your life' and I replied, 'Yes it is'. I walked out and never saw him again. I know I made my right decision.

"I'm willing to bet that there isn't a woman here who ever spent much time thinking about what she would do, as a certainity, if she got a diagnosis of breast cancer."

How much are you willing to bet?

I am going to counter that there probably are at least a few of us who've imagined what we would do, if faced with a breast cancer diagnosis.  Some people might agree with you that "what if" speculation about such things is "wasted life minutes."  Others might like to get to know themselves a little better, so they would be better prepared if they find themselves having boarded that particular runaway train.  Introspection.

I don't subscribe to constant what-ifs. I don't try to imagine, for example, what I would do if I were ever told I was HIV-positive.  The reason is because my odds of contracting HIV are incredibly small.  I do think about what would happen if I had to stop suddenly and my car was rear-ended by that guy who's tail-gating me on the highway.  That's why I drive defensively and always, always wear my seatbelt.  I try to be prepared for some things, based on their likelihood of happening.  So, because our holiday travels will take us through parts of the country prone to blizzards and ice storms, I'm planning for the possibility of bad weather en route.  I don't want to die of stupidity. I have some control over what happens to me in those situations, and I will exert that control when possible and prudent.

What, then, about breast cancer?  Why would any of us have thought about what we would do, before we were actually facing that bridge?  Well, ... my grandmother had breast cancer and was treated with a Halstead radical mastectomy followed by cobalt radiation (including her ovaries).  She lived another 20 years, dying of something unrelated.  As a child, I saw her mastectomy scar, a pale pink streak across her white skin.  She also showed me the pretty handkerchief she used to fill out her bra on that side.  My sister -- who's younger than I am -- had already undergone 4 breast biopsies prior to my diagnosis; two of them revealed ADH.  She was on HRT for 10+ years.  I declined HRT because I thought the risks outweighed the benefits; I was thinking about breast cancer as I made that choice.  My breast tissue has always been lumpy and "very dense," which made the reliability of my self-exams questionable and my mammogram films snowy-white.  So, I always figured I might find that lump some day, or get that callback after a mammogram.  I thought about what I would do.

I can understand that someone with the same experience might actively reject the possibility of ever developing breast cancer herself.  For me, that was not possible.  So, I had a pretty good idea what I would choose, at least for some of the options (like mastectomy vs. lumpectomy/rads), before I had to make the decisions.  That helped me.  I never felt pressured; I never felt as if I didn't have enough time to think through and study my options.  I am an information junkie.

"One decision at a time.  No reason to make any more decisons at any one moment than necessary: cross the bridge when one gets there and can assess the situation."  That's interesting.  I'll bet you don't play chess; and I'm honestly a bit surprised that you would be so averse to anticipating what might happen two moves ahead.  OTOH, there are women on these boards who've nearly made themselves crazy worrying about what they will do without hair, when they don't even know if they'll need chemo.  Why worry about things you cannot control?  I think each of us has to find her own comfort zone.

otter