Feeling "fooled"...

I feel very confused I been fighting breast cancer since 2009 had both removed went through chemo had to take herceptin I am HER2 progressive and I just found out the day before XMAS that I have heart disease had heart surgery last week of december. my onc called said he do not want to be my doctor anymore I feel like while I was treated with herceptin they should have checked my heart more closely. my blood pressure was very high each time I went to clinic for treatment. I am scared and confused about my health and noone is giving me any answers.

lsilang, I am so sorry to hear about your recurrence.   Uggh.  Wishing you well with the surgery and rads.  What a long, tough road this can all be.   Wishing you strength as you forge ahead! 

lsilang, I'm so sorry to hear about your recurrence and the fact that it happened so soon. It doesn't seem fair. This whole thing feels like such a crapshoot. I'll be thinking of you next week when you have your surgery and sending good vibes. We're with you on this.

I got my diagnosis in September 2011, and since I heard the report from surgery – no cancer in the sentinel node and clear margins – I consider myself cured. But nobody told me that any treatment would guarantee no breast cancer again ever. On the contrary, they said what the risks were. But I know, from similar situations earlier in life, how easy it is to take anything positive as a lifetime guarantee ... not saying that's what you did, but that's what once made me feel as fooled as you do now. 

Upon diagnosis, I consulted with 4 surgeons and they all said something to the effect of, "you'll be at your child's graduations."  They must say that to everyone.  Or at least to the ones like me who seem like such basket cases.  I must say though, the oncologists have been a bit more solemn.

I was given a 10% chance of it coming back in 5-10 years locally and a 10% chance of it recurring remotely in 5-10 years, and from Cancermath a 5% chance of it ending my life in 15 years.  I have another problem and think that I will probably die from that. That problem is kind of iffy, so I assume, (which makes an a$$ out of U and me) that I will live for another 5-20 years and I don't care what anyone says about statistics,  I will, retire early, as everyone in my immediate family has passed before 61, except.for one person. I don't care how 'poor' I am. I  just want to have a farm and live simplly, which I have always wanted.to. This process has made me sure that I want to live my life as I want to. 

I enjoyed reading the posts on this particular forum..........I often feel like a lot of you do.   My attitude since my diagnosis (August 2011) has not been "why me", but "why not me".......this is life, and some of us, unfortuntely, have a predisposition to produce cancer cells.  I'm also disturbed by the "beautification" of breast cancer.....such a farce, but I suppose it does bring awareness.   

Deep down I always knew that I would probably get cancer (strong family history on my mom's side), but I never thought I would be diagnosed at 42.....62 maybe, but not 42!!  Most of my family, including my mom was over the age of 60, except for an aunt who was diagnosed in her late 50s from breast CA.  I am the youngest ever to be diagnosed.   That part sucks.  My beautiful family has to suffer along with me.....I have three kids, 13, 11 and 9.  I remind myself daily that I'm not raising any "sissys" by them going through this with me....this will make them resilent for whatever curveballs lie ahead of them in life.....they will be ready to deal with adversity.  I can only hope and pray that I will be there to hold their hand during those times......if you have faith, you have to believe that God has a plan for all of us and that is what keeps me going!

wow! That's my story too. I was prepared to get bc one day, but not those days when my kid is only 3 years and a half old and me not yet 34. Crying doesn't help. I must believe that those 90 procents of no recurence will be my case too. God help us all.

 Artemis, in defense of the celebrites who go on t.v. and say they are cancer free it's not all their fault. They are told by the medical establishment that they are cured. After my first lumpectomy, the bc surgeon came into the little room where I waited with a huge smile and said, you are one of the lucky ones. You had the good cancer. You only had DCIS. No node involvemnet. A few days later she called and gave me the final report. I got wide margins so I got it all. I was cancer free. She did send me to a rad oncologist for consultation as it's "standard" care. I did my homework and brought in a list of information, studies, and questions. I said to the rad oncologist, I only have stage 0 ... they got it all. Can rads cause a recurrence? What's the likely hood for me to have a recurrence? Since they only considered the final path report the cancer wasn't as large as expected. The rad oncologist said (he might not have been correct about the %) I had a 5% advantage if I did rads. He did say, yes, rads could cause another cancer...he wouldn't guarantee it wouldn't. I said in the very beginning I was open to further treatment for stage 0 if it meant my life. He said, no ... the odds is you will never again be dx with bc ... most early stage bc women feel better throwing the kitchen sink at the big C.(cancer). He said, I recommend it because they feel better about doing everything they can to keep the cancer from ever returning.

With that said, I felt confident that I was cancer free. After all I was only stage 0 as the ro said the odds were on my favor. The rads was mostly to catch any rouge cancer cells and even then I could have a recurrence.

One yr. later I was dx again...final path report multifocal dcis, again grade 3 como type. Different bc surgeon said again I was fortunate that there was no invasive component, stage 0....but I was high risk for a recurrence. I needed to be watched like a hawk...screenings every 6 months. She would had done more, but being self pay, I had to wait until I turned 65 before considering more.

Because, the second surgeon didn't say, I was lucky, and cancer free for the first time, I knew although early stage 0, I became very cancer concern and for the first time began a journey to learn why my body was making cancer cells. It's been a very complex journey and I'm still getting it together.  

The whole early stage staging to me is all screwed up. Stage 0 gives you the false sense that you are one of the lucky ones. You got the good cancer. Because, the first dx in 2007 right under the lumpectomy scar they of recent found idc, grade 3, with the her2+++ factor....so one of the stage 0 dcis on what they said were wide margins ended up showing it' self again Oct 4th 2011. So, I had a mx on the right breast. Aftewards I again told that I am cancer free. The oncologist also said with the mx and scans showed no cancer that I am cancer free. Yea! I'm done.

Don't tell me I'm cancer free, and then in the next breath tell me now you have to do chemo, herceptin, anti hormone drugs, and whatever. I said what if there are side effects, and she said, we'll give you more drugs for the side affects. All this for stage 1a. In one breath I am lucky and in the next breath I'm not so lucky. Also, with treatment that there still 15% for a recurrence.

So, when people learn they say to you, how lucky you are that you aren't stage IV. If I was to follow the protocol as most stage 1 bc women cancers I would be doing just about the same treatment as those who have stage 2 or maybe 3 cancers (loosing your hair, hormone treatments for 5 yrs, rads or heceptin with its risks of heart problems) and then the doctor tells you that you might have micromets not picked up by the scans and in a year or so you could have mets. I am lucky???

Last March in my other breast I was dx with mucinious. I was told, you are really lucky. Yes you have idc, but this is a good cancer, favorable. I read and learn it moves slowly and rarely mets or goes into the nodes. I am dx as stage 1. I don't need chemo. So my two dx are the same, stage 1a yet different treatment plans. I thought staging was for treatment plans? This is really mixed up because you assume stage 1 treatment plans are pretty much the same.

So for three years since my 2nd dx, I've had to make sure I'm screened every six months. So far, I'm forunate. I've caught it early...but I know that my body can make cancer cells. Even if I do the herceptin for a year there is no guarantee that in another few years I won't again be dx with cancer.

Altough, my oncologist did say due to my history, I'm at high risk for cancer. That was said much later after I questioned the treatment for stage 1a. Yet, I am not going to let cancer define me. I am a senior, and with what days in my life are granted for me to live, I want to live without cancer lurking at my heels. I want to stay positive. I will have to continue to be screened every 6 months. But, I've decided after my reconstruction and treatment, I'm moving on for awhile. This whole cancer thing can get into your head in a negative way. So...between screenings or whatever I want to feel good, eat well, exercise, stay positive, not worry, and live life.

So feeling fooled...yes...I think the staging 0 and early staging can fool you into a false sense of feeling cancer free. Once dx, we've vulnerable to another dx...and as we age, we are vulnerable to heart attacks, strokes and other diseases. We can't live the rest of our lives in fear of dying or disease. Life happens.

  

oh boy when I read this forum I thought I have to join. I am having such a time dealing with my decision in the beginning and how I was mislead by my BS. She did tell me I had stage 1 curable cancer. I would just need rads no chemo and just take a little pill for 5 years and thats it piece of cake she said.oh and she does not believe in taking a breast when one doesnt need it taken. a lumpectomy in my case was the way to go. I knowing nothing and scared and not given time to think left the office that day with a surgical date.well no chemo no chemo she said.your oncotype will be 0 im sure. I thought great I believed it. My oncologist said if it below 18 no chemo but if it fall in the middle they would recommend it because I was 48 and should go aggresive. I said ok cause I believed my BS and it would be 0 Well to makemit short my oncotype was 20 I did chemo and rads and now have come to find out that I 2 nodules found not 1 which she never told me until she had to and I canniot take the little pill that was a piece of cake because my body cannot tolerate them. We tried 4 different ones and my onc said enough is enough. If I could do it all again I would have had a mast if maybe I was given a chance to think and told of some of the things that can happen. Not everything goes perfect all the time. I would have liked to know everything good  or bad. i have trunkal lymphadema that my BS says I dont even though the pt specialist says I do and have been treated twice for. I am now stuck with worrying about a reoccurance because I have my breasts still and cannot do the HT which i was told was the most important part of my treatment.

I have been thinking about going for a second opinion(new BS) and maybe think about whether I should listen to my friends and other bc girlfriends about having the mast now if it will give me piece of mind. Anybody have any thoughts on this. I am so confused about whether it is something to think about. 

I felt so overwhelmed it would probably be unfair to point fingers at my team.  What I really had issue with was the fact the hospital where I got treated has a slew of important, free services for patients they never bothered telling me about and I had to find out by coming here!

I think a lot of this is perspective.  I am a stage 1, grade 3 IDC patient, ER+.  Is it serious?  My goodness, yes.  Will it come back?  Well, statistically, I have 1% each year of a secondary primary, which means if I live long enough, it is quite possible.

As a young patient, what was abundantly clear is that there were no correct or straightforward answers.  Oh, how I wish my oncologist could say "no, you don't need chemo".  But after three opinions, I was convinced that was the best option for me.  So, in fact I felt my team was pretty pushy about going agressive and taking this very seriously.

But what are we comparing it to?  Our stage III and IV sisters?  I think our oncologists see such grim scenarios every day that their perspective is one of great hope and happiness when they see a patient they believe can be cured, or at least helped to the point of moving on.

I also believe, and it's one person's opinion, that those who speak of cures and absolutes are not living in the real world.  Life doesn't work that way, why would cancer?  I do have to be a public service announcement for friends because so many of our celebs give such insane erroneous info on this disease.

I also maintain sincere hope that if I make it to my five year mark (three to go!), we will start to see improvements in treatment.  They are already figuring out a way to do the SNB without cutting!

Keep the faith, my friends.

Inthepink, et al:  when in doubt, seek THREE opinions.  This will help, trust me!

Otter and Annette, glorious posts!

Hi Barbe,  interesting! I thought we were at risk the whole way through (year 1 and 2 being the most dangerous), and the newest studies indicate ER+ patients are at risk for recurrence forever.  But, I've also heard the percentage goes down.  Confusing.  Any further info on this so appreciated.

No doubt re: stage.  I'm not trying to suggest ours is "less", I'm trying to speak from the oncologist's perspective.  I saw my onc's crestfallen look day after day telling patients there was nothing more that could be done.  Their treatment of me was very, very hopeful!

I too have felt like I have nothing to worry about as far as a re-occurance until I saw the Today Show today that Charla Krupp died from Breast Cancer. They said she was diagnosed three years ago with stage one and was treated with a lumpectomy, radiation, and Tamoxifen and it came back as stage 4. I sure wish we had the whole story and knew what her grade and her  HER2 status was.

Beanpole - Yes, this is scary for people who have had lumpectomy, radiation, anti-hormonals and no chemo.  I've been looking all over the internet for more information on Charla Krupp's original diagnosis and her treatments, but couldn't find anything.  Do you know of a site where there is more information about this.  Thanks!