Feeling "fooled"...

I can see how you would feel fooled. Keep in mind 70% does not come back. So the odds are in your favor. I do get incensed though when I keep hearing "early detection is the key". It is not the key. I also get incensed when so called experts announce that when caught early BC is 100%curable. I do hope neither of you have to join the club. But if it's helps any, it's not an immediate death sentence if you do. With new drugs coming out all the time, many are surviving for 5, 10 and 15 years with relatively good quality of life. Don't waste time worrying about it. Take care of yourselves so if it does, you won't be dealing with a co-morbid disease like heart disease or diabetes. Blessings to you.

I don't know what to think. I often wonder if early stage is the reason I have to wait for appts(3month appt turns out to be 4 months)..........that maybe I shouldn't be so concerned. I'm obviously not a priority. But then again I had the option of chemo & turned it down. Maybe if I had chemo, I'd be a member of a different club(more elite?) & my BC would be taken seriously? Somedays I think I can just walk away....no one would notice.

It is interesting how posts seem to mirrror my thoughts.  I had my first pelvic ultrasound today because I've been on Tamoxifen for 6 months.  I have the feeling it was abnormal--kind of expecting that.  But, is it abnormal in the expected tamoxifen way or worse?  I guess I'll find out soon enough.  I am definitely jumping into life more now.  I find I'm not putting things off and I am picking the phone up to call friends more.  Life is unpredictable in a whole other way now.

I love that, "saying yes more". Me too. I was always a planner, a saver, very cautious, very picky. Now I take those trips I always wanted to take "someday". I'm not even so weird about spraying those hotel rooms with lysol anymore because hey, what can I catch? I already have cancer. I've lightnend up alot and don't take things so seriously anymore!

My daughters do a lot of the gift shopping for my husband, and one of them offhandedly said to me, "We get to shop in some really nice stores since you had breast cancer," so I guess my DH also is saying yes more. He took me to San Francisco for my birthday a few months ago, and took up hiking (always used to just be my activity) and we've had some great trips up to Sedona to hit the trails. Now, I would never consider bc a gift or a blessing or a great way to get perky boobs (we've probably all heard or seen comments like those), but I like "saying yes more."

These days, when well-intentioned friends say things like "Oh, you're so lucky! They got all the cancer out and now you'll never have to worry about it ever again!" I think "SERIOUSLY?"

But the truth is, I was as uninformed as they were before my dx. Yes, my cancer was detected early. Yes, it was mostly DCIS. Yes, the IDC was small. No, I don't need chemo or rads.

But a meeting with the Onco was very sobering, to say the least. My risk for recurrence is VERY low. But the risk will always be there.

On another thread, I said my approach would be "vigilant, but not obsessed."

I guess I'm more of a pragmatist, or maybe I've dabbled enough in medical fields to realize that we have to read between the lines.  There are no guarantees.

When a doctor says, "I think you're going to be fine!", what he/she means is, "Based on my experience, and according to the probabilities (odds) associated with your situation, your cancer should not come back.  I certainly hope that will be the case."  Note the phrase, "I think", in the statement.  It means you are getting an opinion -- not a promise.

When facing a life-threatening situation in ourselves or a loved one, we listen for certain words and we cling to them.  Sometimes we superimpose our own interpretations onto those words.  So, even if the doctor didn't say "cured", that's what we think he/she meant.  Many of us depend on hope and optimism and "positive thinking" to bring us through.  Our doctors know that, so they play along. We have to think the treatments are going to be worth the misery and pain.  If we knew they weren't, we might not agree to go through them.

Heck, maybe doctors need to be positive for themselves, so they can sleep at night.  I don't think very many young people would go into medicine if they were required to focus on the likelihood of a relapse or a recurrence, rather than on the much greater likelihood that the disease is gone and the patient will recover.  Imagine going to work every day thinking that, no matter how hard you try, what you do is going to fail.

Sometimes, docs or nurses or techs will come right out and say, "This is going to cure you," or "You can consider yourself cured!".  Personally, I think that's terribly irresponsible of them, knowing what we know about recurrence risks of breast cancer.  Still, though, they will be correct in the majority of cases of "early-stage" BC, especially with Stage I. Seriously -- according to any available statistics, most of us who've completed treatment for early-stage BC have been "cured" of our cancer.  Unfortunately, we just won't know that until we die of something else.  Breast cancer can be "cured".  It's just impossible to tell at this point which of us will be among the small percentage of BC patients whose cancer ends up metastasizing.

Back to the original question, though... was I "fooled"?  Was I led to believe that my surgery, chemotherapy, and ongoing estrogen suppression, would ensure that my cancer was not going to  come back?  No.  My doctors were all optimistic, but I don't remember any of them failing to acknowledge at least a shadow of doubt.  The tech who did my ultrasound exam was the most upbeat.  She kept saying, "I don't see anything abnormal here.  I don't see anything that would suggest it's cancer."  But, even she added a disclaimer every few minutes, noting that the radiologist would have the final say.  He wasn't nearly as blase -- he told me things looked "pretty good"; the lump looked fibrocystic...  but he was "concerned" about one of the borders, which wasn't quite right and warranted a biopsy.  The rest, as they say, is history.

My husband had a completely different mindset.  Like me, he is a scientist -- logical, linear thinker, comfortable with probabilities.  So, when he heard the odds, he took the high side and assumed everything would be fine.  Given the numbers, he couldn't figure out why my med onco was recommending chemo, much less why I was agreeing to go through it.  It took some deep conversations for him to understand why I was still feeling angry and sad and vulnerable sometimes.  So, I showed him the numbers and pointed out the risk of recurrence even after completing all my treatments; and he finally got it.   He cried that night.

I do understand the feeling of having the rug pulled out from under you, or being told there was a prize at the end but finding out they were not telling you the whole truth.  It really sux.

otter

Btw if you haven't done it yet you may want to look at the cancer math website. For many early stage BCs the statistical impact to mortality is generally low, meaning their might be a recurrence that can be treated and you go on. Again, compared to my friend's stage 3 Dx, this is great news. (which might explain why docs are optimistic about early stage BCs)

Heather - I was pleased my tumour was so small and the nodes looked clear until the pathology came back and I found out I was HER2+ve - not expecting that one. Surely didn't expect to have to do chemo/herceptin, but I'm glad I did. I definitely didn't expect they would find another primary in the other breast a year later which appears to have been missed the first time. My oncologist wasn't blase about Stage 1 - he told me the facts but also said it was good to be triple positive because we have treatments to target that situation. When it looked like I had another one he was sure it wouldn't be HER2 and he was right. Stage 1 is normally a favourable diagnosis, but unfortunately the HER2 factor makes it quite a lot more serious.

I do worry about mets all the time. I remember having a premonition that bc will kill me - not a nice thought to have. I'm trying to move on and maybe I can now I've gone through another lot of breast imaging and this time 2 years out they didn't find anything.

Sue

Fabulous topic!!! It brings to mind when women say they are blind-sided by a breast cancer diagnosis (sorry, I know this is going to piss some of you off) but, as you know only 10-15% of breast cancer is inherited. So to be surprised that you are dignosed as you get older? Why? The older you get, the more odds are that you will develop cancer. Breast cancer tends to show up earliest, like ovarian and melanoma. I have breasts + I am over 50 = good chance of breast cancer.

So, I wasn't blind-sided. Had a double mast to reduce my odds of a local recurrence (mortality rate is the same) BUT my surgeon had emergency heart surgery and my file got dropped. No chemo, no rads, no Tamox, no AIs. Nothing!!! I finally got an onc appointment 9 months later and even she said "you've kind of fallen in the cracks". Yep. Feeling pretty vulnerable here!

But then I wonder about women who don't have masts. Aren't they more worried about a recurrence because they've left breast tissue on thier chests?

So, will I be blind-sided by a recurrence? Nope. I'll be pissed off. But not surprised. I think that's the difference. Someone said vigilent, that's good. (I'm getting surgery Feb 6th to take out a huge tumour in my neck that has enlarged lymph nodes in my neck.)

I was having lunch with 11 bco sisters once. We ranged from Stage 0 to 4. EVERY SINGLE ONE of us said that yes, we figured we would die from breast cancer. That's all 11 of us!! We don't dwell on it, but we know it deep down. 

No, Miles ....really. 

Cancer can be "cured".  Breast cancer can be "cured".  If the primary tumor is small and confined to one location and is cleanly excised (with great margins), and if there has not been a single wayward cancer cell escaped from that site to venture into lymph nodes, blood, or -- heaven forbid -- other organs, then surgery will be curative.   All the tumor cells are gone; there were none left behind; and that particular person's cancer has been "cured".

That's not to say there won't be another, separate tumor popping up in the remaining tissue or on the other side, of course.  That's not a "recurrence" -- it's a second primary.  A new cancer.  It doesn't invalidate the concept of a "cure" any more than getting pneumonia twice in 15 years but recovering completely from it each time means the pneumonia was never "cured".  Antibiotics can "cure" an infection; surgery (plus, if necessary, other ancillary treatments) can "cure" cancer.

The problem, of course, is that, even if breast cancer can be "cured", nobody knows if my breast cancer or your breast cancer or Aunt Molly's breast cancer has been "cured".  A fairly large percentage of early-stage breast cancers will never come back after initial treatment.  That percentage is a tad smaller than was once thought, because it's  known now that breast cancer can recur (not a new primary, but a regrowth of the original tumor) many years down the line... perhaps as long as 15 or 20 years, if we wait long enough.  So much for "indolent" cancers.  That fact makes me nervous.

However, I know of no studies -- NONE -- showing that every woman with early-stage breast cancer will eventually develop a recurrence if she lives long enough.  I know for a fact that several people with whom I was acquainted or to whom I was related did not develop a recurrence in their lifetime.  They lived many decades after their initial tumor was detected and treated, and they died as elderly women of things unrelated to cancer.  They were, apparently, "cured".

Of course, no one can know that for sure unless there's a careful autopsy of each cancer survivor's body to look for residual evidence of tumor.  OTOH, that's also the only way to prove that breast cancer cannot ever be cured, no matter the stage or treatment.

So, people are beginning to look at cancer as yet another "chronic illness," mostly because we don't know any better.  Perhaps mine was cured; but no one can prove that, so I will continue to take extra precautions to (hopefully) decrease my recurrence risk, as long as I live.

"Plan for the worst; hope for the best."

I think I've always done things that way, but that phrase is now my motto.

otter

[ETA:  annettek, wonderful post!]

I do agree it is better for doctors to be optimistic; we need to stay hopeful and not waste our lives waiting and worrying for the ball to drop.   

Uh, that's easy for me to say...not so easy for me to do...LOL...it's a mental struggle.  I'm hoping I get better at this as time goes on.  

Even so, docs need to also give us the realistic information that there is always a chance for recurrence, and how big that risk is based upon our individual situation.  There is nothing worse than a doc downplaying your diagnosis and then "whammo" being hit with a big steaming ball of cancer cr*p.  

 I'm one of those women who thought it would never happen to me. All my family members get skin cancer, so I was very diligently watching for that over the years. Breast cancer caught me completely off guard.

 The first call I got regarding my mammo, telling me not to worry.. that 90% were nothing blah, blah..I didn't worry. Then the ultrasound, with them telling me it's probably nothing.. I believed them. Then they said it was something but my type was 95% curable, I believed them.

 And then, when I started researching and found this site; I stopped hearing what they were telling me.

 I've fallen into that little 5-10% each step of the way. I don't really believe I'm suddenly going to get lucky and be in the 80% (or whatever) who never get it again.

 I'm about 1 !/2 years out from finishing my treatment and life has pretty much returned to normal. Friends and family all think I'm cured. I don't dwell on if it will come back or not; but the possibility is always lurking in the back of my mind. 

The population in general wants everything to be ok. At 32yo I was slapped up side the head with my IDC triple neg dx. More surgery for margins, snb, chemo and rads. Hair grew back and every 6 months someone was poking or squashing me to check if things were stable. I hit 5 years and thought, damn I beat that! Maybe I was too cocky or maybe I always suspected it would come back and bite me again. It took just over seven years, but I got a new primary, IDC again but slightly ER+. So BMX, hyst, chemo again. I don't want this $hit ever again. Wouldn't wish it on an enemy. And every time I see someone lighting up outside a store or hospital, I want to scream. How can you be so stupid?! You are asking for something NO ONE wants and yet how may smokers NEVER develop cancer? Just pisses me off. You can't go by the statistics, just play the cards as they're dealt and hope you pick up some good ones that others discard. Best wishes ladies.

So, my onc told me in our first visit that "we cure breast cancer"--this was at a major NCI center.  I was surprised because that was not how I understood it.  But the truth is, taking the lump out is one "cure" and the treatment can be another "cure"... however, none of us know if this will be the thing that gets us or something else will.

 I said this in another forum, but I think it is relevant here as well.  When stats were being bandied about after the oncotype, someone said, well "you have a 92% chance of never seeing this again"... when I was complaining about this to a colleague, he said" are you going to choose to live in the 8% or the 92%)... I decided on the 92% right then and there. 

 I think there is a place for the positive thinking and language, particularly at the beginning.  I taped every doctor's visit and listened to those tapes inecessantly when I needed to hear something good like "excellent prognosis, likely you will never see this again, small, early, discrete, etc".  Now, I knew intellectually that they could be wrong, but decided at the time that they were right- which helped me get through each tortuous step of the process.  

Like others, I have read and researched since then, but I still remain convinced that I am cured.  Could I get bc again? of course.  I could also get a number of other ailments..... 

I think the biggest risk we all run is letting the worry about the future negatively affect our present.  I have now had two "life threatening" situations in my life (and the other was far more immediate than bc) and what they have taught me is that now is all I have, it is all I have ever had-- it is all we all have.  I try to hard to be present and intentional (and certainly have done my share of retail therapy-that needs its own thread--I have a credit card I call the chemo card!).  

The doctors don't know, but they do have experience- and my surgeon always used the line "the vast majority" of people never see this again.  that is the best she can do, and it was good enough for me.