Crystal Ball?

07-21-2009, 10:32 AM

I do know there is really no crystal ball, but...

I am 2 years out from dx. 38 years old. Stage 2A...1.8 cm tumor, 1+ lymph node, HER2+++. ER+ PR-. Finished chemo and had bialteral masetcomy over a year ago. Finished herceptin over 6 months ago. Currently taking tamoxofin. Working, spending time with friends and family, loving life. I feel down right "normal". So why am I making my first post on a message board after 2 years? For some reason, the doubt has started to creep in. I NEVER asked for stats, never asked what was going to happen, I just listened to my onc, researched treatment options, and made informed, aggressive decisions to get rid of this. When I was done, I was done and got right back on the horse and focused on living my life.

But a month or so ago, I started looking at this board and others and I'm getting scared...maybe more scared now that I was a year ago.

But my question is "what's going to happen now?"

Is making it 5 years my goal? I want to live to be 80. Is it OK to think I can have a positive lymph node and HER2+++ and not recur? The posts I've read make me think I'm fooling myself.

Maybe I'm just having a pity party right now. Sorry ladies. I don't want to be a downer, and maybe someone should just say "ask your onc and don't get everyone worked up"...but if someone can dust of their crystal ball (or some journal or abstract you have tucked away somewhere ) and tell me what's going to happen, that'd be so sweet....!!!

Much love.....

Colleens_Husband · 07-21-2009, 10:54 AM

Please understand that the people on this site are not a representative sample of the HER2 community. Most people survive cancer and move on to other things, such as living to a ripe old age, and just look at their cancer experience in the rear view mirror and they have no desire to deal with it anymore.

Some of the people become pillars of the HER2 community because they have had such a hard time, and these are the people which may scare you. These people are still living and making the most out of every single day of their lives and they should be honored for their bravery and dignity in the face of mortal peril. You could really learn how to live by being around these brave souls. I remain on this site because these individuals constantly amaze me. Well, that and they are a lot of fun to be around.

Others in this community have had the minimum amount of grief, recovered, and have stayed here to offer support out of a sense of community spirit.

Also, you need to be aware of when things are written and when people have had a difficult time. Herceptin changed everything. Information about HER2 which is a couple of years old does not apply to you or your situation. A lot of the scariest cancer stories will not happen in the future because of Herceptin and possibly DM1.

If you are just now dealing with the fears of your cancer, then you may want to go to a cancer counselor who is experienced with post-traumatic stress. I'm not saying that you are crazy or that their is something wrong with you, but there is a reason that you visited this site after such a long time. Exploring why this has become an issue now may improve the quality of your entire life.

Please take excellent care of yourself.

Lee

Andrea Barnett Budin · 07-21-2009, 11:17 AM

I believe what we BELIEVE is reflected in our thoughts. They are programmed into our brain. They play ON REPEAT all day. Doubts and uncertainty creep in. They slowly become obsessive and gnaw at us. We begin to think that if we are thinking it, it is probably all rooted in Truth. So we start to become possessed by our negativity and it multiplies and grows.

So, personally, I take those thoughts -- the ones we each have from time to time -- I process them, experience them, don't deny them or repress them, vent in some way and move on.

Venting can be by reading posts on this site passively or it can mean expressing and sharing your feelings as you have done, Ms Unregistered... Tehe

When I say I move on, I consciously choose to dispose of my scary, albeit horrifying, thoughts, my complete sense of doom, frailty, insecurity and such -- refusing to allow such ideas to rent space in my head.

Then, I install thoughts that reflect my deepest desire. Because I believe what we think impacts our reality this is of utmost importance.

Thoughts are energy and go out from us into the Universe. They travel at varying speeds and frequencies, dependant on the amount of negativity or positivity they have. And our thoughts, and prayers, are met by the Universe. They are sensed. And responded to. IN KIND. So, our thoughts attract what it is we are focusing on.

I AM HEALTHY AND WELL. I AM GRATEFUL FOR EACH DAY. I LOVE LIFE. Therefore, you will be full of joy and serenity, KNOWING you are calling your desired destiny to you, versus your worst nightmares to you! YOU HAVE THAT POWER. It's really quite cool.

Also, the messages your brain sends out are heard by your body and -- responded to. Your body takes its direction from your mind. So stay far away from thoughts full of doom and gloom, resignation and sorrow, awful imaginings and such.

You can simply open your heart, and your mind, to become a vessel for Universal Love. Think, speak, act with kindness and compassion, with caring and generosity of Spirit. Be grateful for the blessing of wellness. Live with all these positive emotions and KNOW you are magnetizing like energy to you!

Please read my BE BRAVE thread below...

Be brave! - HER2 Support Group Forums

Continue enjoying Life, your friends and family... This is extremely healing, along with laughter of course.

PLEASE CHECK OUT MY SIGNATURE FOR MY STORY. I AM AN OLD TIMER. DX IN '95, NO HERCEPTIN AVAILABLE IN THAT ERA, RECURRED IN '98 AND...
HERE AM I!!!

YOU TOO CAN LIVE FOR MANY MANY DECADES TO COME. DON'T SETTLE FOR AGE 80. GO FOR 100. WHAT THE HEY...
Andi

StephN · 07-21-2009, 12:12 PM

Wish I could say otherwise, but NO one knows what tomorrow may bring. We only know the odds are with us that we will be alive and well. Go with that!

Your nagging questioning is natural. You have been able to repress your fears (that we all have) about breast cancer and its fickle nature. These fears and questions are powerfully strong and ebb to the front of our minds at varying rates of speed for all of us.

Many of us repeat as a mantra that "knowledge is power." So we reach out to see what is happening in the way of new treatments in case we should ever need it. We reach out to find out how others with similar diagnosis and treatment are doing.

I believe that the "magic finish line" of 2 years is implanted in the back of our consciousness at the outset of treatment. That survival interval is made important by our doctors, so we have this time frame as a reference point, whether we realize it or not.

As Colleenshusband pointed out, this is OLD news. You and many thousands before you have received Herceptin as part of first treatment. You are all writing a new chapter in the book of HER2 positive breast cancer survival. Keep living as you are, and keep writing!

Satisfy yourself, that you are in the vast majority who are doing, and will continue to do, well against this disease. However, just a bit of edginess may serve you well in watching your body closely as time goes by. It is really more likely that you will have another medical issue crop up before you have another problem with breast cancer.

chrisy · 07-21-2009, 12:22 PM

Lee is correct when he says:
Please understand that the people on this site are not a representative sample of the HER2 community. Most people survive cancer and move on to other things, such as living to a ripe old age, and just look at their cancer experience in the rear view mirror and they have no desire to deal with it anymore.

Most of the people who are "active" on this type of forum are those who are also actively in the fight. MOST of them do just move on, putting it behind them.

Also you should know that many of the stats are pre the use of adjuvant herceptin which has truly changed the face, and prognosis, of Her2+ cancer. Many of the people (such as myself) who are dealing with recurrence or advanced disease did not have the advantage of getting herceptin upon initial early stage diagnosis.

True, nobody has a crystal ball - but your chances of being one of the people who "look at their cancer experience in the rear view mirror and they have no desire to deal with it anymore" are excellent.

Enjoy your good health and feeling normal! By the way, worrying about recurrence is normal, too - but will get better the more years you get under your belt.

Go for 80,90 or more!

Ellie F · 07-21-2009, 01:14 PM

Chrisy
So glad that the T-DM1 trial is working for you.I would be really pleased if you could share some details of it with us as I feel my knowledge is very small and I read they are commencing more trials. I would like to ask how often you have the treatment, what are the side effects and do you lose your hair!!

Andi
I'm still working on those positive thoughts but some days are more difficult than others! Been reading about psycho-neuro immunology which seems to support a lot of what you advocate.I suppose in the future we will gain a scientific understanding of the impact of our emotional/mental health on our physical disease process.

Ellie

LAURIE · 07-21-2009, 05:31 PM

I so feel your worries too. Now granted, I have had a huge distraction keeping my mind busy. A baby can do that. Today I had my 3 month checkup with my onc. I have now graduated to a twice a year patient. exciting and scared. I am here on this site because I cannot stay away. When something great happens in my life I have to share. When others are hurting I need to feel it. This site gives me the courage to keep making a difference. I share my story with others, because I am proud of the past 3 years of my life and I do not want others to have to go through what we have gone through.

I want an end to cancer and what we do and share here can make a difference.

I am glad you posted but understand why this was the first time.

Mary Jo · 07-21-2009, 05:54 PM

Hello "unregistered..." So happy that you posted your fears here. You need to get those out and posting them here was a great idea.

I can't offer much more than what Lee so accurately said but there are many of us doing well who have had a her2 diagnosis and a positive node (I would be one of those). Many just move on from here. Some of us hang around to offer encouragement BUT also to gain strength and encouragement from those constantly fighting the battle. They are my hero's. They are an awesome bunch who have taught me much.

You're right, there are no crystal balls and thank God for that. I don't really want to know what my tomorrow's will be. For now, just living one day at a time is sufficient. Enjoying each day the Lord gives me breath.

The way I look at it..........we will all "pass" on. Each one of us, regardless of how much we may want to stick around a bit longer. The day is not of our choosing.....so, I just live my life and try to enjoy each day 'cause God only knows what tomorrow will bring.

I am a 4 year NED survivor and trust me when I tell you, it took me a while to get to this line of thinking. The first few years I was scared to death.....recurrence lived on my brain....but in time I learned to appreciate each day and not borrow trouble.

God Bless you "sister" and thanks for sharing your heart. We love to "listen" and encourage here.

Hugs ....

Mary Jo

sassy · 07-21-2009, 07:21 PM

As Lee pointed out, most of those on this site are not representative of the general populace of those afflicted by HER2+ breast cancer. They are however the most intelligent, compassionate, empathetic and supportive group of SURVIVORS you will have the privilege to share with.

As you can see by my signature, I had 5 positive nodes and am still around over four years later, currently NED (No Evidence of Disease). I come to this site to offer support for others, but to also seek support and continue to learn about this disease.

I come here because these are my friends.

If you have questions, need to talk with someone, need to vent, or whatever, there is someone--many someones---here to help and support you at any time.

Her2nSue · 07-21-2009, 08:36 PM

Sassy, Congrats on your being 4 years NED. I'm nearing my 4th year in Oct. For some reason I'm finding the upcoming 4th and 5th year NED nerve wracking. I guess it's constantly being positive enjoying life even with all the aches and pains still affecting me and continuing with all the daily pills, I guess I'm just hoping that nothing comes from around the corner to take the wind out of my sails. Any way, just very happy for you that you've reached the 4 year mark

Sue

Ruth · 07-22-2009, 01:44 PM

I echo lots of posts here ~ I go away for a while then come back and these fanstastic folks draw me in to celebrate in their lives; the bad and the good. I want to inspire hope...I needed it so desperately 6 years ago with 10 positive nodes with one in my chest. So...its so very natural to read and get frightened sometimes but within this is a great amount of hope and love to share it all with.
Hugs ~ Ruth

Mary Anne in TX · 07-22-2009, 01:59 PM

It is a bit of a roller coaster ride this BC thing! Like so many others, I was at my best during active treatment for 3 years. Then, after a couple of months, it felt like I had been let adrift in the ocean and told to kick! But month by month, I'm learning to be an NED person. It took me a little over a year to learn to adjust to fighting BC; so I figure it will take me some longer to learn this new role.
I keep coming back to learn, to listen, and to find out how everyone is doing. It's hard to know that some are having very difficult times, but everyone was there for me when I needed them most. This is a big family of all sorts of folks. We have "educators, uplifters, calm-me-downers, think in another way people, etc." I've needed kicks in the pants and I've needed cheering on. This is THE place to come when you need help with Her2 BC. I know there are other places to go also, but the honesty here is remarkable and the love amazing.
Each day is an adventure. Wish I knew how many I had.....geez, no I don't. I think that would be worse! Welcome to our family. ma

MJo · 07-22-2009, 02:06 PM

My friend who was diagnosed at the same time I was considers her breast cancer "over." As for me, I'm a support group person. I go to a biweekly BC group at the Wellness Community and I visit this group regularly. It sounds like you're having a delayed reaction. Welcome to the group two years after your Dx.

I don't see why you can't look ahead to your 80s. My oncologist was talking about weight control and preventive tests with me and he said "It's especially important when you reach your 70s and 80s......" How about that! Of course, a bus could run me over tomorrow. Cancer changed me. Before, I was a future-oriented, driven person. Now it's easier for me to take a day at a time, and it's easier for me to be content with what I have.

Diane H · 07-22-2009, 09:42 PM

Can't add much to the insightful, comforting and supportive posts before me except to say thank goodness for them! Take comfort here, the depth of experience and knowledge is awesome,
Hugs,
Diane

SusanV · 07-23-2009, 07:04 AM

Hey there Crystal Ball,

I like you, made a conscious decision to "turn my back" on the whole thing once treatment was over. Don't underestimate that your very will to move on will be a big part in your outcome. Positve attitute helps. You will always go through times of doubt.... but refocus on what's important and pull yourself back out on top. I was diagnosed at a similar age to you (37)...This Aug 3rd, I will have made it to three years ! I am now 40 and happy and healthy and most of all grateful ! If you ever need a friend you can message me !

Becky · 07-23-2009, 09:24 AM

My stats are almost 100% like yours but I still have my breasts (and although it is not a constant worry, a new bc is more of a worry than recurrence).

I will be a 5 yr survivor in a couple of weeks and Herceptin wasn't available to me at the time. I did have it though - 4 months after my last chemo (as a single agent only - never combined with chemo as it is now).

1.9 cm tumor, 1 positive node, ER+, PR neg and I am still here, doing well and no new breast cancers after 5 yrs. You can do it too (plus many, many more)

07-23-2009, 09:43 AM

Thanks everyone for the great and helpful feedback. What I've been reminded of is that it there are many many people just like me who are living happy, healthy, cancer free lives. I never worried about statistics so it was out of charachter for me to be stat concious now. I liked what someone wrote about HER2 stats being invalid anyway and us re-writing those stats thanks to Herceptin.

I (like all of you) and a strong woman who for some reason finally needed some extra support. Thanks for letting me know that living to 80 isn't a fantasy.

And by the way, I'll regsiter. (no more Unregsitered!) Hope to maybe post some more in the future.

Jackie07 · 07-23-2009, 10:39 AM

Hi,

There's no way to predict if and when there will be a recurrence. Because of all kinds of 'human errors', we have to be vigilent by ourselves. Since you've got mastectomy already, the chance for you to have recurrence has been reduced to minimum (at least as far as the 'breasts' are concerned)

I had totally trusted my doctors and technicians and ended up having an undiagnosed recurrence for 4 years, losing several jobs and still don't know if there are cancer cells growing somewhere in my body. Did a genetic profiling and ended up with a BRCA variant of 'unknown significance'.
Life goes on. Nobody knows what's going to happen tomorrow. We'll just have to do our best and after we've done everything we can, just 'let go and let God'. Enjoy every moment and live everyday as if it's the last day of our life...

R.B. · 07-23-2009, 03:16 PM

No crystal ball I'm afraid,

and we have choices which raises all sorts of crystal ball questions - one thing that is in our control is our ability to influence the way our genes express themselves through out diet and that includes the cookie I had today which was a tiny bad infuence (-: but nice.

This thread may help get you passed 80 (-:

http://her2support.org/vbulletin/sho...ght=greek+diet