I Need a Pep Talk...Very Discouraged Today
 

Sisters,
I need a pep talk, from people who understand what I’m living.
I am usually upbeat and positive about my fight with BC.
But, today…not so much…

My chemo is over, except for Herceptin. I’m scheduled for a bilat. mast. with DIEP flap recon. On Oct. 7.

My onc told me months ago that she believed I’d be cured. Yesterday, when pressed, she clarified what she meant. She said something to the effect of, “the 5 year survival rate for women with your kind of cancer is very good, you only have about a 50/50 chance of recurrence.”

I was stunned. I’m walking through the fires of hell, with Taxotere, Neulasta, Adriamycin…multiple surgeries, and the fun of radiation still on the horizon…with a smile on my face, and a can-do attitude…and now you’re telling me in a perky, optimistic voice that I have a “very good chance of living 5 years?” I have sons who are 12 and 14. That doesn’t even get them out of high school. College? Weddings? What about those grandchildren I’ve been dreaming about!! I was crushed. I’m crying now, just remembering it.

And my poor husband. We’ve been together since we were 16 years old (that’s 30 years). I’ll never, ever forget the look on his face as we drove home yesterday. After six months of being strong and brave…he’s scared to death now.

I see on this site that some of you are several years out, still living a good life with stage IV disease, and I’m so inspired. But, I’m feeling betrayed that I was led to believe that they could “cure” me, only to find out that, cure doesn’t mean what I thought it meant.

Are there any stage 3 ladies out there who have finished treatment and are “cured”…by it’s normal definition, not the wacked out oncological statistics definition.

I want to be like TriciaK…21 years since diagnosis, and still living a good life.

Sorry to go on so long with my self pity…I told you…today is the least optimistic I’ve felt since being diagnosed. Thanks for listening. God bless all of you.
Denise

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise,

I can understand the shock that's still in you. Your doctor had poured 'cold water' on you.

But hey! Everyone on this earth has a 50-50 chance of either staying alive or being dead. I had had a recurrence even though the chance of my haveing a recurrence was only 8%. (92% 5 year recurrence free survival with chemo and radiation - 2003 statistics.)

I was very shocked and thought my time on this earth was limited. (Although it is true for everyone - with or without cancer .) But better treatment options (Herceptin was approved by 2007) actually help knock out the cancer - I've been in remission for 4 years now.

You've just finished a big race. You were feeling so relieved and exhausted at the same time. Suddenly your coach mentioned to you that the race is not over, that you need to walk slowly around the track and be alert on another call to the race. Yes, you felt betrayed and you wanted just to sit down and have a good cry.

The reality is, you have the 50/50 chance not having any sign of breast cancer again. So, do go out and celebrate the moment! You've earned it!

http://her2support.org/vbulletin/sho...568#post257568

Re: I Need a Pep Talk...Very Discouraged Today
 

Dear Denise,
Please don't despair. I have learned on this site a big wonderful piece of news: that if I do have a recurrence, there is still a strong, strong chance that it will not be the end of me. So many women here, on their biographical details in their signature lines have encouraged me. So many are ten years since diagnosis alive and NED, while having had a couple of recurrences in those ten years.
I am praying for you and me. We are in this together. I hope we meet.
Love and prayers,
Nora

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise,
Though I am not a stage 3 I/we can all relate to what you are feeling. Having finished my chemo in December and just finished my herceptin 3 weeks ago, the fear of those statistic are even stronger then before. It is unfortunate that your Dr. changed his discription of your situation. My Dr stated to me that I would always be considered in remission until the day I died from something else then they can consider me cured. This helped me put it in more perspective that I have to come to terms that this could come back. But seeing the others on this site that have been living through reaccurances I don't think it is a death sentence. So plan on seeing your kids through high school and marriages, don't give cancer the the satisfaction of controling your life. Be strong, stay strong.
Suzanne

Re: I Need a Pep Talk...Very Discouraged Today
 

Hi Denise,

I also was told after all the tests that I would be cured and a year of treatments I could do easily to live a full life. I have an idea of how your feeling. After three weeks of riding that high I had surgery and the cancer in my lymphnodes did not show on the mris so my stage was changed to stage 3. I will always remember the look on my husbands face when we were told. His face was so red and he hung his head down the rest of the time we were there. You will find your family strength will carry you when you don't feel you can carry yourself.

Since I've been coming to this site it has made such a big difference in my attitude. All the positive support, the wonderful lighthearted advise and "Pep talks are awsome! The wealth of information here is endless! Nora is a wonderful women to chat with and is new here and Laurie7 she has three kids and stage 4 now and is living life to the fullest along with Pam, Bonnie, Jackie and all the rest and as I've read over and over here sometimes you just want to be heard! This is the place! Any one of these women would love to chat with you including myself. Please know that you are in my prayers. I have read your posts you are a wonderful, upbeat, positive, strong women! You are not alone!

God is Good All the Time!

Your Friend,

Nancy

Re: I Need a Pep Talk...Very Discouraged Today
 

Suzanne,

Thank you for the saying "Don't give cancer the satisfaction of controlling your life" Priceless!!!!!

Re: I Need a Pep Talk...Very Discouraged Today
 

Dear Denise,

I can relate to everything you're feeling - I've been there many times. As you can see from my signature, I too am a stage 3 with kids (now 9, 7, and 5). I also have been with my husband for 21 years (11 married) and we share a special bond.

I know it's hard to swallow our diagnosis and to think that cancer one day will return. So I'll focus on the positives: you are getting the best treatment available today for your disease. Statistics are old and do not reflect treatment today. I heard at least 70 % chance of making it to 5 years, and that if I passed year 2, chances would improve dramatically. I also heard from one doctor who told me "your prognosis is actually much better than what your numbers indicate". He used the word cure with me, and told me that he's treated 50 patients in the past few years with HER-2+ cancer, with only 2 recurring. The 2 that recurred had small brain mets that were blasted away with Gamma Knife and are doing fine today.

I go through days in which I think any little new pain is cancer returning. I also have days now in which cancer doesn't really enter my mind so much. Those days are increasing and keeping my life as normal and as busy as possible helps.

Remember that cancer cannot rob us of our love for our families. Cancer cannot rob us from teaching our kids our values, from sharing special moments with them.

Also remember that we're all here for you so you don't ever have to feel alone in your thoughts.

One more thing - when I had my mastectomy, I had no breast cancer cells left in the breast tissue itself, only very sporadic cells in the lymph nodes. Because of the number of nodes that looked to be affected from the outset, I took Xeloda (at a low dose) during radiation. I also enrolled in a vaccine trial which I finished last month. You may consider discussing these and any other options available to you with your medical team. If anything, it may give you some more peace of mind.

Good luck with everything!

Love,

Marcia

Re: I Need a Pep Talk...Very Discouraged Today
 

Hi Denise,

There's no way of knowing what lies in our futures. Since I entered breastcancerland 7,5 years ago, I've seen women recur who had an almost 100% chance of surviving their disease, and I've seen women reaching NED (No Evidence of Disease) status after a Stage 4 diagnosis. So your oncologist is right: you have a good chance. Actually, your odds are probably much better, because of the newer drugs you are taking. In 10 years time, perhaps, we will say: We were the lucky ones; we had Her2 positive disease.

We all know how it feels: we bravely endure what we have to endure to get better, and then suddenly it hits us: we could have died and we could still die. That is the scariest feeling. But believe me, this feeling will subside. We go on with our lives and we will get used to the "new normal". Every day is one more day that we have survived. We go back to bickering and getting upset about the little things. And more and more cancer is shoved into the background. Unless we notice an ache, a cough, a weird symptom. Then for a while it all comes back. Until we find out it is ok. Or it isn't, and then we deal with it.

You have a good chance of never ever having to deal with cancer again. Focus on that, if you can.

Hugs

Jacqueline

Re: I Need a Pep Talk...Very Discouraged Today
 

Hi Denise,
I am a stage IIIer out over 6 years and there are quite a few of us out there doing well.
There is a stage III forum on another discussion board that sometimes us "oldsters" visit.
I got the gloom and doom talk too( same sucky stats); Drs go by stats, but truly in reality there are no LONG term stats for us: Her2 positive no distant mets due to the advent of Herceptin. The playing field has changed for us , and there is so much hope now.
You will have sad moments, It's such an emotional time. It's Ok. It will get better!!!

Re: I Need a Pep Talk...Very Discouraged Today
 

So sorry you are feeling discouraged, ,you have finished chemo(thats a great accomplishment).I think its normal to feel like you are feeling,But you got rid of your cancer,when you had surgery.
chemo & Herceptin just adds more insurance,that the cancer won't return,I too worried abt the 5 yr thingy,but look,we are not born with an expiration date,I appreciate life more than ever now,something I think the good Lord wanted me to learn,A lot of the feelings you are having will soon pass you will see,Herceptin was pretty easy for me & I hope this for you also,Keep Fighting,You are Tougher than You Think!!!!

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise,

The numbers you were given are not written in stone, many people go on and don't recurr so why not you???

Personally I dont look at stats and truely believe the saying we are all individuals and if I do recurr I'll worry about it then!
I'm six years out now and so far so good, it may not last forever but today I'm cancer free and refuse to worry about it:)
Take one day at a time and simply accept it may happen, but there's gurantee it will!!!

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise, We have all felt the fear that you are feeling right now. I try to look at it this way. There is a 50% chance that I will develop diabetes. There is a 50% chance that I will develop heart disease, there is a 50% chance that I will die in a car accident and the list goes on. I don't think we worry so much about stage but the word of cancer itself. We immediately think that our days are numbered when we hear that we have cancer. We are just so much more conscience of what time we have left cuz we have had a life altering experience. I worry about recurrence all the time but try to tell myself that I will deal with that when it happens IF it happens and our chances that it won't are pretty good. You will see your children graduate and you will be telling your grandchildren this sorry someday. Good luck and stay strong. God Bless. Darlene

Re: I Need a Pep Talk...Very Discouraged Today
 

It was unfortunate that your onc did not choose her words more carefully from the beginning. "Cure" is a mighty big word to be throwing around. I know you and your husband are feeling betrayed. But consider this, 50/50 means the glass is half empty or half full. Why shouldn't you be in the good 50%? Besides, it is all semantics and statistics. We each have our own hopes and dreams and we should go forward with the knowledge that we are fighting our own individual fight with the intention of coming out on top and defying statistics. Keep your eye on the prize. And cherish each day because, really, that is all anyone has anyhow. Most important, keep the faith.

Re: I Need a Pep Talk...Very Discouraged Today
 

Thank you everyone!
I knew I could count on all of you! As Bonnie pointed out...I need to think of my glass as half full. My minister once told me...you're not a glass half empty person, or a glass half full person, you're a my cup's overflowing person!" I need to get my head straight, and get that attitude back in gear!

My levels of faith and joy are starting to rise again. No more pity parties for me! I'll be my old, "cup overflowing" self again in a day or two.

Thanks to all of you for your kind words and for your support. Your empathy is exactly what I needed.

Keep praying! Stay strong!
Denise

Re: I Need a Pep Talk...Very Discouraged Today
 

Not only do you have to try to remain positive, I think your doctor's stats are wrong. For example, when I had cancer, I was Stage 2A. Herceptin was not available (although you can see by my signature that I did have late Herceptin - alone after chemo and rads were completed because by that time it was available and I fought for it and got it). Prior to that, I asked my onc for stats and he told me 70/30 which seemed high but it was Her2+/no Herceptin days. That said, you may be dealing with old statistics because in general, 2 years out, Herceptin reduces recurrence by 52% with a 6 year overall reduction of 39% (this is as far out as the stats go right now - we are on the cutting edge).

This brings your stats with Herceptin to a 2 year of 76% and a 6 yr to almost 70%.

But stats are nothing - nothing at all. I have a neighbor who was diagnosed Stage 4 ovarian cancer 3 years ago. She had a 17% chance of being here one year out. What that means is of 100 women just like her, only 17 will be here in 1 year. She is still here and doing well. So, even if you only had a 1% chance, why shouldn't that one woman be you. You will be fine and looking out the other side. Its this early side and a year or two following that the demons still haunt you. I promise, every day will be better. It seems like baby steps and suddenly, one day, you realize you didn't think about having had cancer for a whole day or a whole week - at least you won't be thinking about yourself. You may be just here on the board trying like hell to calm someone down who needs you. Trust me, I was a freak when I found out I had cancer and I was a freak in the operating room, chemo room, radiation room and then back to the chemo room. Friday is my 7 year survival date (of surgery although I was diagnosed weeks earlier). We are all here for you 24/7 and are rooting for you everyday.

Re: I Need a Pep Talk...Very Discouraged Today
 

We all have ups and downs with cancer. It is normal to be upset from time to time. Hang in there and keep putting one foot in front of the other and keep going no matter what happens.
Take good care of yourself.

Re: I Need a Pep Talk...Very Discouraged Today
 

As Becky points out, we do all have our justifiable "freak out" moments! You are allowed and entitled!
My most recent was when I was mistakenly diagnosed with lung cancer and part of my lung removed, only to find out it was benign. Well, I was hysterical that they could DO this to me! That this mistake happened. I absolutly could not see the silver lining, it was not cancer! My glass was half empty. And when the surgeon said "I thought you would be happier" I wanted to kill him.
Keep the faith.

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise,

We are very similar in our journey.

I was dx at 45, stage IIIA, my boys were 12 and 14 and my husband and I had been together 19 years.

I am still here going strong! My boys are both in college with steady girlfriends and there is more of both my husband and I to love than there used to be!

Becky is right about the stats; they are more favorable than the 50/50 you were quoted. Those of us dx since 2005 are rewriting the stats because of Herceptin.

As time goes on, your anxiety level will gradually lessen and life will crowd out the worry of cancer. It probably will never go away, but its light will be dimmed by the light of life.

"Do not let tomorrow's worry rob you of today's Joy."

Come in anytime you need encouragement--there is lots of it here.

Life is good--don't forget it.

Re: I Need a Pep Talk...Very Discouraged Today
 

I am a stage IIIc, er-, pr-, her2+++. My onc who is at a major teaching hospital in Chicago, and has been at the forefront of the Herceptin clinical trials since 1999, told me if I handled all of the treatments (which I did) there was less than a 10% chance of recurrance. She sees alot of Her2+++ positive patients because of her reputation treating this breast cancer subtype. I told her to repeat herself, I was so shocked. She said this is a "New Day" and she was seeing stats that favorable. Of course anything can happen in cancerland, but I think the stats you were quoted were quite out of date.

But yes, I sometimes have days where I am scared also. I am told it gets easier as more time passes.

Re: I Need a Pep Talk...Very Discouraged Today
 

i too have stage 3C. My oncologist told me the same thing. He said because of the number of nodes involved.. there is a 50% chance it can come back.. he was shocked when I said 50/50 that is not too bad. It is not 100% and i told him I would be on the 50% side that is good. I know 50/50 is not as good as we would like... but he is not telling us that it WILL get us. I get scared too. when he told me to come back in 6 months instead of 3.. i dont want to wait... but othere days i feel normal again and love it for a second until reality steps back in. My doctor said I dont need clinical trials. he says i got hte standard medicine and it worked. In my opinion the healing of the radiaton burns was the worst experience of the whole treatment thing. I had the same treatment as you NEDenise but 18 out of 31 nodes cancer. i am ready to look for a plastic surgeon ot get my boob back! it is almost 2 yrs and i am ready i think. I only lost one boob and nothing done to replace it yet. that is another journey... opinons and finding the right plastic surgeon for me. keep your chin up there is always positive in everything. Bonita

Re: I Need a Pep Talk...Very Discouraged Today
 

Hi Denise,I think I'm going to take the 10% stats that Jill's Dr. gave her. Are you with me?Thanks Jill for posting!!!!!

Re: I Need a Pep Talk...Very Discouraged Today
 

Good Morning Everyone,
Thank you, thank you!
You ladies are the best medicine!
You're right! Why not me?
Only 10%?!! Wow! Yay!! Hooray!
I will not be letting "tomorrow's worry steal today's joy"!!
My smile is firmly back on my face. I'm a fighter and a survivor...always have been.
Thanks for letting me drop my smile for a few hours and ask for support in a safe and loving place.
God bless all of you!
Denise

Re: I Need a Pep Talk...Very Discouraged Today
 

Audrey,
Thanks for replying! I'm feeling much more positive today...but I'll look back on these posts the next time something takes the wind out of my sails. The sad news about your friend certainly puts things in the perspective too. I'm sorry for your loss.
I wish you many, many more years NED happiness.
Denise

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise, So I was stage III and my cancer spread while I was still on herceptin, making me stage IV early on. I'd like to try another strategy with you- some tough love. There is absolutely nothing you can do to change the future- some women are just unlucky. But you have full control over the present and you can choose to let uncertainty destroy you or you can be thankful that you have today.

I too have a young child (17 months) and I can't imagine leaving him so young. Denial is a great tool and Her-2 blockers are a gift from God. So be thankful that you are Her-2+, as we have lots of options in treatments. Instead of focusing on what you don't have (a secure future), focus on what you do have, two beautiful children and a wonderful present.

Re: I Need a Pep Talk...Very Discouraged Today
 

statistics...ugh. They are only random numbers created by unemotional computers. Numbers...not real people like us. Hang in there and prove the computer wrong!!!

Re: I Need a Pep Talk...Very Discouraged Today
 

You've done everything correctly to heal your body with the best treatments going. Please don't be too concerned with numbers and stats., because that's all they are. It's better to get on with life, next to your sweet hubby, and enjoy.

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise,

My doctor said almost the exact sentence to me. I remember the day... my husband and I too shocked to say anything. Hey - I'm still here and my third grader is now in ninth grade, (on the HS crew team) my first grader is now in sixth grade(got to see her volleyball game today) and my 4 yr old is now in fourth grade, (giving me a hard time about her reading journal.)

Maybe someone has said this before but truly, there is no substitute for time - I still worry and you will too but focus on those kids and that wonderful husband.

Re: I Need a Pep Talk...Very Discouraged Today
 

I am about 4 1/2 years out from a possible stage IV diagnosis (long story) and NED. It has gotten better and I rarely worry about it. Because of the screw up with the diagnosis I have no idea of my chance of recurrence, anywhere from 20% to 80%, no one knows. I am my old self, can pretty much do anything that I could do before considering the age difference, real close to the old normal! I am planning on reconstructive surgery very soon, an option that I wasn't given at the time of my mastectomy. I found a quote that I love about statistics. I have it at the bottom of my posts. What I do know is that if it comes back I will do my best to get over it. I have always felt that we don't know what tomorrow will bring, cancer just makes it a little more clear. It will get easier to deal with the uncertainty. It just takes time and everyone comes to terms with it differently.

Re: I Need a Pep Talk...Very Discouraged Today
 

So true!
And as we all know..."78% of statistics are 90% made up"

Congrats on your success!
Love the picture. Are you really Mrs. Santa?
Thanks for responding!
Denise

Re: I Need a Pep Talk...Very Discouraged Today
 

I really am Ms. Santa. That is really what my husband looks like and he has a workshop too. That picture was Halloween and I curled his beard. I went as Cookie. ; )

Re: I Need a Pep Talk...Very Discouraged Today
 

Hey, now we know somebody with pull at the North Pole! Let's all ask for the same thing...a cure!

Re: I Need a Pep Talk...Very Discouraged Today
 

Bonnie,

Thanks again for another great post! You have put another smile on my face on a very sad day.(It has nothing to do with my cancer.)

Peace,

Nancy

Re: I Need a Pep Talk...Very Discouraged Today
 

I just want to say.....

You are all such CARING...BRAVE ...STRONG...BEAUTIFUL WOMEN! That is exactly why I like to "Thank" cancer from time to time...think it brings out the "Cups overflowing" person in all of us! ((HUGS)) to all of you!

Re: I Need a Pep Talk...Very Discouraged Today
 

Oh, Denise! If I posted what your doctor said, I know what you'd say...only God knows what will happen in your life. As for me, well, you know I don't believe in statistics or even staging. Bologna!
I had a doctor-scientist tell me well over a year ago that Herceptin doesn't work for me and I was crushed, too, because I really respected his opinion. Turns out, he was just burned because I vacated a trial when I didn't get the drugs I wanted. Well, it IS working. No, we can't say for how long, but TODAY it is. And that's all that matters.
I LOVE YOU!
Karen

Re: I Need a Pep Talk...Very Discouraged Today
 

Hi all!
It's so 'funny' that this thread got bumped up again this week! I'm supposed to go back to work, first day back since February 23, 2011, and...well it's made me think about recurrance...disease free survival...and prioritizing my life. Add to that, the death of our friend Jacqui...and well...I've been feeling a little pensive...not discouraged exactly...but ... you know what I mean.

Then, up pops this thread again!
Karen, you are so right! Only God knows! And as the author of the awesome book "The Shack" points out "God's always been especially fond of me!" (and BTW - God and I are both especially fond of YOU!)

If this mess recurs...even 50/50 odds should impress someone who occasionally plays the lottery!...I'll just follow in the footsteps of my stage IV sisters who have fearlessly blazed a trail for me! If it doesn't...well, as Becky pointed out almost a year ago, on this very thread...I'll still be around to encourage my friends who are fighting the beast...praying, empathizing, posting funny things to get your minds off BC...and paying it forward...till we have a cure!

Till then, I keep reminding myself:
HER2 survivors are like tea bags...the hotter the water, the stronger we get! (now THAT would make a good t-shirt or bumper sticker!)

And to quote someone's signature line (forgive me, I can't remember whose...feel free to chime in and take credit) You never know how strong you are...until you don't have any other choice.

And...so as my own "signature quote" indicates....I'm still trying to be polished up! My cup's overflowing! And once again...
THANK YOU! THANK YOU! Not just for the support you post specifically for me...but also for the wisdom, joy and encouragement I've gotten from being part of this community. I don't even want to consider what this year would have been like, without this forum, and the support of my HER2 sisters. You ladies are ROCK STARS as far as I'm concerned!

Hope you can feel the gigantic, love-filled, cyber, bear hug I'm sending!
Denise (who also believes in a cure)

Re: I Need a Pep Talk...Very Discouraged Today
 

Oh I wish I had see this ages ago. I remember in 1998 when they told my husband he had 6 months to live with his leukemia. We lived large, eating out at the nicest restaurants, going on exotic vacations, he taught me to fly the big twin - in case anything would happen, skiing, etc. Two years later I told him we had to quit this and go on a diet, it was obvious he wasn't dying.

14 years later his doctor shakes his head and says according to your blood tests you should be really, really sick. Just keep doing what you are doing . . .

The biggest lesson I learned is don't live like you plan to die soon, you need to plan for living a long and happy life.

I hope your doctor is a terrible at prognosticating like ours!

Re: I Need a Pep Talk...Very Discouraged Today
 

Wow - love your post 'Lizbeth! Needed to read this right now...God bless your husband and you with a fantastic long life together

Re: I Need a Pep Talk...Very Discouraged Today
 

Denise my friend dx with me as stage 3 is celebrating seven years out next month and she had fourteen nodes affected!

My other friend is celebrating 25 years out and had 22 positive nodes although she was'nt tested for her2 back then, I'm highly triple positve and so pleased to be seven years out too so please disregard the stats as they dont apply to those of us who had herceptin early stage!!!:)

Re: I Need a Pep Talk...Very Discouraged Today
 

WOW!! do you ladies have any idea of the energy that flows from your words and stories. Denise, if I ever have a health crisis again, I'm going to crawl to Philly and spend time with you because you (and these other wonderful folks) really know how to LIVE. Thanks so much for sharing so much with us.

Re: I Need a Pep Talk...Very Discouraged Today
 

Hi Denise and Friends,

I'm 12+ years out (Diagnosed Dec 1999).

Stage III, 5.2 cm tumor, 9 infected nodes out of 21, Her2. My kids were 12 and 9 and I was 44 when diagnosed. Kids are now 24 and 21 and I'm still going strong.

Keep the faith! And, best wishes to you all.
Gabrielle