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Topic: Feeling "fooled"...

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Jan 12, 2012 10:58PM - edited Apr 6, 2012 02:34PM by Faye33

Faye33 wrote:

Any other early stagers feel the medical world down played the seriousness of their diagnosis in the beginning?

I left my staging appt. after my surgery elated with a stage 1 diagnosis because they got "all" the cancer. I got the impression I was essentially cured.

Now the more I read, and the tendency my doctors seem to have to do testing to rule out a recurrence seem to tell me early stage isn't as positive a diagnosis as everyone made it sound in the beginning.

Anyone else feel they were a little misguided in the beginning?

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Jan 12, 2012 11:14PM spendygirl wrote:

I have to tell you, I feel the same way.  I am convinced it will come back, it's just 'when' will it come back.  But then I question myself - am I being overly dramatic?  Have I researched TOO much?  So I've had to come to a happy place, that it's either going go happen or it isn't, all we have is today.  Took me a while to get there.  But we can't ever get that "worry" time back.  But deep down I have accepted that at some point, it will come back.

I'm so glad you put this out there.  Take care of yourself, Tracye

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Jan 12, 2012 11:26PM loligag wrote:

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.

What things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them - Mark 11:24 Dx 7/29/2009, IDC, 6cm+, Stage IV, Grade 3, mets, ER-/PR-, HER2+
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Jan 12, 2012 11:29PM mari55 wrote:

Catching BC early is so much better than later, but you are right it is not a guarantee ( see my bi-line).  I wish that I had not bought the "cure" line because I might have caught my progression earlier but it is what it is and luckily I am stable.   I guess that is why I am a little sensitive when the latest celebrity with early BC comes out and continues the message that all it takes is to catch it early. I feel this promotes the myth that those of us who are at stage IV must have done something wrong.  I don't think i could have caught it earlier unless I had a crystal ball.  I have never smoked, always exercised and have never been overweight.  No family history- just my fate.  You can drive yourself crazy worrying but don't.  Just live each day as fully as you can and don't put off the things you want to do. Follow up with an oncologist but don't assume every ache or pain is progression- more than likely it is not.  None of know what will happen and Tracye is right - you can't get the worry time back.


DCIS 1999, R mastectomy. Mets to spine, sternum,ribs,and femurs Jan. 2010 and new primary on left, DCIS, Dec. 2009. I am not afraid of dying, I am afraid of not living Dx 1/11/2010, Stage IV, mets, ER+/PR-, HER2-
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Jan 13, 2012 12:12AM coraleliz wrote:

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.

Dx 2/28/2011, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 3/15/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2- Surgery 4/15/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right
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Jan 13, 2012 12:16AM Galsal wrote:

Once I knew the score about this, I've got this big feeling it's in the other side regardless of any test or image not finding it.  Most of the time, I'm not wrong although it can take time to convince the doctor of it.

Dx 12/14/2011, ILC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/10/2012 Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 10/6/2012 Arimidex (anastrozole) Hormonal Therapy 12/13/2012 Femara (letrozole) Hormonal Therapy 4/16/2013 Aromasin (exemestane)
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Jan 13, 2012 12:34AM Janeybw wrote:

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.

Jane. BMX with TEs on 5/24/11. Tamoxifen started 6/27/11. No chemo. Exchange 12/16/11. Dx 4/23/2011, IDC, 2cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Jan 13, 2012 12:49AM LittleMelons wrote:

I think it takes time to get to the right level of reality.  When I was first given the diagnosis in the breast clinic no one said anything at all encouraging.  When I asked about my prognosis, the doctor and nurses all looked solemn and stared at the floor.  I really thought I was going to die soon.

 Then when I had my surgery and the surgeon said, "we got it all" and no nodes", I thought "I'm cured".

Now I know there is risk of local and distant recurrence, but I don't dwell on it.  It has definitely made me live more for today.  I appreciate my husband and kids more now and I've changed from a frugal person into kind of a spendthrift, indulging in retail therapy and going on trips.  I have to say that I am actually enjoying life more now, saying yes to things where previously I would have said no.  Sort of like the Jim Carrey movie "Yes Man" lol. 

Dx 8/18/2010, IDC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jan 13, 2012 01:18AM Susie123 wrote:

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!

Dx 12/22/2009, IDC, 1cm, Stage IA, Grade 1, 0/8 nodes, ER+/PR+, HER2-
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Jan 13, 2012 01:39AM - edited Apr 6, 2012 02:35PM by Faye33

Good to know I'm not alone.  I was beginning to wonder if I really was just that clueless when this all began.  And the reality is, I believe I was clueless.

It's not so much the fact I think breast cancer is coming back for sure, I just think there is a greater chance of it coming back then I was let in on.  I agree mari55, I think part of it is the frustration with the social stigma put on breast cancer.  It is all pink and pretty and oh so curable, especially if you catch it "early".  Until you get it, and then you slowly realize that's a pile of BS.

I don't think the medical field is immune to this breast cancer "no big deal" mentality.  Some of the first words out of my family doctor's mouth when we suspected I had cancer were, "We'll get the cancer out (referring to the lump of concern), but we'll save your breast."  Mind you, at this point, I'd only had a mammogram and ultrasound.  I had no official diagnosis.  Six weeks later he was pulling out my drain after my bilateral mastectomy where cancer was found peppered through both sides with tears in his eyes.  Now mind you, I'm not upset with him.  I just feel his mentality sums up society's "It's no big deal." mentality.

LittleMelons... I had to chuckle, because my surgeon is where I got the biggest impression I was "cured", as well.  My surgeon was very cocky (but extremely talented), and I think that is why he was over confident in my "cure", because "he" had a part in it.  :-) 

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Jan 13, 2012 01:44AM suemed8749 wrote:

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."
Dx 1/15/2008, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Jan 13, 2012 02:02AM yorkiemom wrote:

Definitely happened to me. My biopsy indicated Stage I, Grade I ER/PR+, HER-. The nodes were not enlarged and seemed ok by feel, mammos and US.  All great, right? Surgeon I had at that time said you're going to live to be a very old woman. YAY!

All subsequent scans, including, MRIs and more USs showed no node involvement. The day of my surgery the RO did another US and came into the waiting room to tell my husband, she's going to be fine, there is no nodal involvement.

Then comes surgery, and bingo, 2 nodes with micromets. OMG. My husband comes unglued as I do after waking up and hearing the news.

My new surgeon, who I highly respect, told him I think she's going to be fine. Everybody is saying that again. No sign of infiltration, other than the nodes, and the Oncotype DX came back low, 14. Bone and CT reports state no evidence of metastasis.

Still, I wonder and worry, if they were so positive about the nodes before surgery, how can I feel secure in their declarations that I'll be fine now.

I hope this fear gets more controllable in the future. Hopefully, after my scans come back normal next March, knock on wood, I'll start relaxing more. 

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jan 13, 2012 02:19AM Blessings2011 wrote:

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."

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/5/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/22/2012 Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/5/2012 Arimidex (anastrozole) Hormonal Therapy 10/22/2013 Femara (letrozole)
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Jan 13, 2012 02:38AM Miles2Go wrote:

 In the words of my Cousin, M.D. "You don't know until you know!"

1.  There is no cure; there is an opportunity to live.  I lived 15 years never giving cancer a second thought ~ only to "grow" a new primary breast cancer site.  No recurrence ~ my body simply grows cancer cells every so often.  It happens, so what!   Surgery, & I'm back to work & play.

2.  Understand the general public has slim to no understanding of breast cancer...you'll know when you listen to someone if educating or forgiving is appropriate.

3.  We all hear what we want to hear ~ Sometimes our docs need some prompting and permission to be honest;.my physician was waltzing around with words last fall when I reminded him I worked for a Director of Medical Education...only then did he say, "I think you've got an 89% chance of Stage I breast cancer."   Now he simply goes for the bottom line during our conversations.

4.  This is not the dress rehearsal, this is all there is!   Healthier to stop worring and get busy living.

5.  Kudos to hfdeboer for this discussion.  Namaste, CMG

~promises to keep, and miles to go... Dx 9/29/2011, ILC, <1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 13, 2012 02:57AM otter wrote:

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.


Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 14, 2012 03:16AM peggy_j wrote:

Hfdoboer, sorry you're feeling fooled. Though I've heard docs talk about stage 1 being curable, as I did my research after Dx I realized it's just a statistical guess. Aside from surgery, so much of our Tx is to reduce the odds of a future recurrence ( rads, chemo, tamox or AIs) It can feel discouraging. Then I talked to a friend who is a 12 yr BC survivor who was grade 3 with many lymph nodes. Even with all her Tx her risk of recurrence and mets is much much higher than mine. So I do feel lucky that mine was caught early. But I think the word "cure" is probably misused.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jan 14, 2012 03:22AM peggy_j wrote:

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)

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Jan 14, 2012 03:44AM - edited Jan 14, 2012 03:55AM by Miles2Go

Otter, you got my attentionWink.  Cancer is a chronic disease, one way or another.  Does that mean we give up hope?  Certainly not!  Does that mean accepting reality?  Certainly yes!

"Cancer can be cured..."    A medical cancer cure may eventually be a reality, now? not so much.  For now the only cures I'm aware of have been the result of prayers. 

Was I "cured" for an initial cancer diagnosis (lumpectomy) 15 years ago?  More acturately, I was "in remission" for 15 years, because very simply my body has a propensity to grow cancer cells.  Am I "cured" again now (other breast, another lumpectomy/new primary site)?   No, in remission again? - well, not quite as this time a little metastases was found in a lymph node. 

The bottom line is everything is temporary.  I am celebrating the temporary and encourage everyone to do the same. 

Gotta love a good discussion, this one is a doosey.  Enough of my ego bending your eyes on this web site.  I've contributed all I can to our discussions.  I'm going out to play the rest of the year. Thanks to everyone for enhancing my well being with your posts.  My arms are around everyone with a hug.  Namaste,  CMG

~promises to keep, and miles to go... Dx 9/29/2011, ILC, <1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jan 14, 2012 03:59AM - edited Jan 14, 2012 04:00AM by suzieq60

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.


2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Jan 14, 2012 05:10AM asmd wrote:

When I was first diagnosed, and all my docs said I'd be ok, I didn't believe them. I was sure my cancer was so aggressive, even w chemo, it would recur. And then, about 6 mos later, after chemo, instead of being sure i'd have a recurrence-I started thinking the opposite way. It just happened. Now I think it could happen, but it's unlikely. I also kept forcing myself to think differently about the statistics. So instead of thinking 10-15% chance recurrence, I would flip my thinking to, 85-90% chance of no recurrence. Optimism can only help.

Dx 3/31/2011, IDC, <1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 4/15/2011 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 6/9/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 9/30/2011 Surgery 11/30/2011 Prophylactic mastectomy: Left; Reconstruction (left)
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Jan 14, 2012 04:05PM barbe1958 wrote:

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. 

Religion is for people who are afraid of hell, spirituality is for people who have already been there. (Lakota Nation) Dx 12/10/2008
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Jan 14, 2012 05:21PM annettek wrote:

I guess i am odd. i know i will die one day but i dont know what of. Before BC, having had way too many opportunties to say goodbye to people I loved when they died of a multitude of unexpected things, I really had the point of mortality driven home. It was underscored with my diagnosis of BC, which oddly, as time has passed since DX, has made me much more philisophical about it all. I always lived in fear of the boogeyman killing those I love and me too. He sometimes has and other times not. Nothing I can do about that. I finally understand that almost fifty years after losing my first loved one to death as a small child. Beyond extremes (i.e. jumping off cliffs, massive illegal drug use, etc)...it is all a crapshoot of sorts. I have to do my best within what i perceive (right or wrong) as to what is best for me and go with it. Until I change my mind or my body changes again.

My breast surgeon told me following my BMX i was cancer free, then she qualified it with a murmured path tests, diagnostics, etc....but I got her message. I don't trust odds so much. I had high odds based on my age even without genetic history, and low odds based on the *problem* area in the mammogram being positive (it was obviously) that it leads me to go back to crap shoot theory. I have had every test known to mankind, odd in itself for such an early stage cancer-for others further along had seemingly nothing. All revealed nothing more. But then again, microscopic is microscopic, eh? So do I obsess with recurrence or new primary? Some days. Others, not even on my radar.  It more depends on where my head is at. That is the major organ i am concerned with. For if it is functioning in a healthy manner and my thoughts are not all over the place rooted in abject terror, I can. I don't think docs should go overboard in the negative aspect. A large number of us at the beginning are a quavering bowl of fear and we haven't gotten our minds around the fact that we have the dreaded C word. A little smoke and mirrors do get us through til we can better comprehend is not a bad thing for it gives our brains a chance to accommodate our new reality. It didn't even hit me what the hell happened until a few months ago....allthrough my reconstruction, etc, it never really hit home. Oh, i am well versed in the medical aspect of things, both personally and professionally, but none of that really mattered. The deeper I researched didn't make a hill of beans difference. For every obscure report out of Latvia, there was another from somewhere else ruling it out. BUt they ultimately were all just words. Science is clinical by its very nature, it has to be. Analytical and filled with theories and disclaimers.  Alternatively horrified and bolstered, it still didn't really mean *me*. Thus armed with my *superior* knowledge and understanding I still landed up on the bathroom floor crying my eyes out a few months ago asking WTF happened? So today I cry easier, but I laugh easier as well. Screw stoic unless it serves me. I don;t know what will happen. Nobody does. So we do the best we can. Like everybody else on the planet. The mere fact that we are all here is a positive thing. We are alive. Today. Which is more than a lot of people cannot say. That is all any of us really get. BC or no.

I hope everyone's today is better than yesterday and not half as cool as tomorrow.

thank you for indulging my blather-guess I needed to write it out:)

Surgery Stats: BMX 11/2010 with immediate reconstruction with 450 TEs Exchange 3/19/11 Mentor 550 HP Smooth rounds Dx 10/17/2010, IDC, <1cm, Stage I, Grade 1, 0/6 nodes, ER+/PR+, HER2-
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Jan 14, 2012 05:40PM - edited Jan 14, 2012 05:44PM by otter

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.


[ETA:  annettek, wonderful post!]

Dx 2008, IDC, Stage IA, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 14, 2012 06:04PM TwoHobbies wrote:

This is an interesting topic.  What I thought about breast cancer is if you catch it early its curable, mammograms will help you catch it early, and eating healthy, exercising and maintaining a healthy weight help prevent breast cancer.  What I learned after breast cancer is that ain't all true!   

The other surprise I had is how much treatment there can be for an early stage cancer.   When my biopsies came back my ob/gyn called and said its under 1 cm, you won't have to do chemo.  After my MRI, I was so disappointed to find out it was bigger than 1 cm.  Then I come to find out from the breast surgeon that was all baloney anyway.  I started looking at research and protocols and even with a way small tumor you can still need a lot of treatment!    And then you can still do all that treatment and go on to have it come back.  That is certainly not the public perception.  

I still think its better for doctors to be optimistic.  I don't want a pessimistic doctor.  We need to go on with our lives not knowing our exact future but we didn't know our future before breast cancer, we just thought we did!  

Round 1 -bmx, tug flap reconstruction, tamoxifen. Local Recurrence-excision, TCx4, radiation, Zoladex, Anastrazole. Dx 2/22/2011, IDC, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER+/PR+, HER2- Dx 4/25/2013, <1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jan 14, 2012 06:48PM dancetrancer wrote:

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.  

Cold caps work! coldcapphotos.shutterfly.com/p... TCH: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC w/ 6 cm DCIS, Gr 2 ER/PR+, HER2+) 0/3 nodes; Stage 0 on R (2 mm DCIS); see bio.
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Jan 14, 2012 07:05PM - edited Apr 6, 2012 02:36PM by Faye33

You guys are totally helping me process this... thank you.

I still think society suffers from a very optimistic and uninformed view of breast cancer.  I suppose doctors know this when BC patients show up at their door.  If they dropped all the statistic and odds and realities on our laps from the get go, odds are there would probably be a lot lower compliance to treatment.  Why go through all that to still at the end have a substantial risk of recurrence?  The reality is treatment does make a big difference, even if it still is scarey facing the statistics at that point.

And I suppose I do have a "good" prognosis compared to a patient with stage 4 cancer.  As a matter of fact, I suppose in that comparison my prognosis could be considered "excellent".  However, my prognosis now compared to before I was diagnosed with cancer is what I'd consider "poor".  It's all a matter of perspective.  I've been focusing on the wrong perspective, I suppose, where doctors see enough of the Stage 4 perspective to honestly place a "good" or even "excellent" prognosis on us early stagers.

I'm over two years out and still have yet to ask my oncologist any statistically percentages linked to my prognosis. Mostly because I'm pretty sure I won't like the answer.  I had approximately two tenths of a percent chance developing breast cancer at the age I did, and now, even with the best case scenario (which I know mine isn't considering my age and tumor characteristics) I have at least a two percent chance of getting it again.  Again, from the perspective of my before odds, to my odds now, I don't view that as a "good" prognosis. 

And, in reality, I know it will either reoccur or it won't making my real odds either 0% or 100%.

I'm really not trying to be negative here.  I'm just trying to process this.   I'm starting to see this processing is something that takes time and really can be a matter of one's mindset.

Ideally I'd like to get to the point where I am optimistic, but not oblivious to the risks, so I miss something if it does happen. 

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Jan 14, 2012 08:50PM mixin wrote:

 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. 

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Jan 14, 2012 08:57PM - edited Jan 30, 2012 05:10AM by cookiegal

I have not read all the responses yet but YES.

While I am fine from an oncology point of view, I had a very very difficult recovery that nobody even hinted was a possibility.

I was flat on my back for a month, had frozen shoulder, couldn't drive for a year, spent weeks not leaving my hood becase riding hurt too much, developed lyphadema, spent several months in such severe arm pain I couldn't do any thing but walk or lie on the floor, and I am sure I missed something.

I have had to see pain doctors, several physiatrists, PT's OT's, LE's and so on. Oh and 6 months on Levaqin for cellulitis.

All for a stinkin 1.7 cm tumor and one slightly positive node, a little more than a micro met. I didn't even do chemo.

I went from and active woman who worked 12 hours a day, including commute, traveled, danced, canoed, played tennis, to a full time medical patient.

While I will never take my NED status for granted, saying I will be fine was really flimsy.

Whooo...I gues I needed to rant.

You deserve a cookie!
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Jan 14, 2012 09:05PM mebmarj wrote:

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.

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Jan 14, 2012 09:11PM Layla2525 wrote:

Lots here to agree with. One stupid nurse told me of my diagnosis of invasive ductal carcinoma, "Oh no we can cure your breast cancer, you'll just die of a heart attack like everyone else now". Plllease nurse take your predictions somewhere else..I dont wanna die of a heart attack either! Needless to say I changed doctors but she wasnt the only reason. My aunt got breast cancer back in the 1960s and she had one side done and was declared cured. About 10 yrs later she got it in the other side and had another masectomy in the 1970s and recently died this past Christmas in a nursing home basically of old age. She was close to 100 yrs old. I guess some people are theorectically cured..and then there is the article in this months medical journal about how to tell your patient their prognosis. hmmmm....

bmx w/TE on 2/13/12,exchange to Mentor high profile 600cc gel implants on 08/30/12,07/01/2013,new Natrelle 45 gel,replaced Mentors due to capsule. Dx 12/19/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 17, 2012 04:54PM momand2kids wrote:

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.  

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)

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