Just wanting to vent

[lisajones4]

Hi. I was just hoping I could vent a little. I am in the midst of gathering all of my records so that I could see a infertility specialist. I am 39 years old and have a five-year old. (I would love to have a new little one.)

I just received most of my records from my oncologist. I read my initial evaluation from her which was taken in Nov. 2005.

This is what it read: She has overall a moderate to poor prognosis. She has a high risk for systemic failure. I feel like I have been kicked in the gut. It is weird to see my mortality, according to my oncologist, written on a piece of paper. (I was diagnosed at Stage IIIA in November of 2005 and my pathology report was not good). It just makes me so sad and so scared.

[ElaineM]

Hang in there. Don't let the letter get you down. My surgeon wrote a letter to my oncologist about 10 years ago telling him I only had 6 months to live, and then asked him to try to help me anyway. I am still here.

[Mary Anne in TX]

My surgeon said I had a bad prognosis also. I really like him and know that he liked me and wanted me to live; so I got really mad and decided to do everything I could to prove him wrong!!!!! I often used it as my motivator to just keep on keeping on. Thanks Dr. R.!!! ma

[Jackie07]

My situation is completely the opposite! My oncologist kept brushing me off of my concerns. The last time we had a discussion, he told me that he knew some breast cancer survivors in town who had stayed healthy for over 20 years.

He's a Mayo Clinic - trained physician, so he should know his stuff. I very much doubt any of those long-term survivors he had mentioned had exactly my type of diagnosis, though.

But, our brain is a marvolous thing. Ever since I had read Norman Cousin's Brain First (before my brain tumor surgery in summer 1990), I became a loyal subscriber to the mind-body connection (it was explained by way of the happy enzyme - endorphen.) The current issue of CURE magazine talked about 'epigenetics' - scientists are getting closer and closer to the answers now.

Let's make those nay-sayers eat their words someday...

(I love the statement in Andrea Barnett Budin's signature: "To H__ with poor prognosis and nasty stats")

[Joe]

Your report is over 4 years old. There have been many significant advances since 2005.

When Christine was diagnosed in 1999.... ALL Her2 patients were told: Your type of cancer is agressive and your prognosis is poor"

A study released at last years ASCO meeting showed that HER2 positive patients are surviving longer than non-HER2 positive ones.

Regards
Joe

[SoCalGal]

It is so un-nerving to hear or read these words. As a 13 year survivor (2 years stage four - dadadadum) my prognosis was also deemed "poor".

I've raised my kids!
Seen both of them become a Bar and Bat Mitzvah.
Watched them graduate Middle School.
Took photos of them at their first proms.
Watched them graduate from High School.
Went with them to visit colleges.
Got them settled at college.
Plan to watch them graduate in a couple of years!

Don't let the words get to you. Stay focused on your goals and your health!

[chrisy]

Lisa, I echo what has been said.

ALL available statistics for Her2+ "prognosis" in 2005 (when that was written) were before adjuvant Herceptin.

However as Joe notes, adjuvant Herceptin has changed the picture dramatically. That is the truth today.

The fact that you are a stage III survivor does mean that you should continue to be vigilant - but you make your own statistics.

[Becky]

I also was diagnosed prior to adjuvant Herceptin. It became available when I was 4 months past my last chemo. My current onc (at that time) would not give me Herceptin but Sloan Kettering would but you had to bring your chemo records to prove that you were 6 months or less from your last chemo. So...I had to get a full copy of my chart, which I did. The first page was a letter from my current onc thanking the surgeon for the referral. The letter said, although she is only Stage2A, she is Her2+, PR negative and moderately ER+. After AC followed by Taxol and rads, I will put her on Tamoxifen "for as much good as that will do". Her prognosis is very poor but I will follow her closely.

I took things into my own hands (long story) and I am still here - going onto 5 years. The only poor prognosis was my first onc whom I promptly replaced!


Going back to my '70's upbringing - don't let the turkeys get you down.

Move forward with your life and your wishes to expand your family or whatever else you want to do or achieve.

Peace

[Cannon]

I know it must be scary to read that. But the great news is, you have already proven them wrong! Those words mean nothing anymore.

[lisajones4]

Thank you so much for all your words of encouragement. I am so thankful to have all of you to vent. I am going to keep living my life as if I will be here until I am 100

[Believe51]

Lisa, Mighty Oak's reports were from many doctors and very bad. All conclusions were the same....6, 9 months max. Well, 29 months Baby and still fighting. Even Oncologists can not foresee how cancer will react with an individuals 'circle of recovery'. Many things have happened that allowed us to still be here, as you. But yes Lisa, that report is burned into my mind forever.>>Believe51

PS: For the next visit I would bring her some Wite-Out (smiling!)

[harrie]

Lisa....I know you must feel like you got punched in the gut....but I personally know of several people with similar dx and it has been many yrs of survival.
Our friend here at HER2, Andi, is one tough fantastic example of surviving MANY yrs!
I also have a very close friend who was dx stage 2 or 3. She was on the verge of a stem transplant. She was in her early 30s, it has been 4 yrs I think. She is BRCA1 positive and she is due to give birth to her first child in a month or so. If you would like to talk to her, PM me and I can make arrangements. She is very proactive and involved with Young Cancer Survivors Coalition (I think it is called) She has a wonderful attitude and helped me get thru my tx. She is doing really well.
HarrieCanarie

[Believe51]

Lisa, wanted to let you know that I am sending a special heartwarming hug to you right now. Please know that I have had you close to heart for some time now. Keep that chin up!!>>Believe51

[Brenda_D]

When my Mom was sick and in the hospital, her charts had "prognosis poor" on them several times. We asked her doctor about it and she said that the prognosis is just a snapshot in time, and can change from day to day.
When I asked my Onc about my prognosis he said ten years ago there wouldn't have been much we could do, but today it's a whole different world. Thanks Herceptin!

[hutchibk]

You know what I did - I became friends with my onc and his family... now we socialize together, even do holidays together, and his kids love me. I am not allowed to have a poor prognosis ~ haha!

[jones7676]

That is why this site is great....

Here I am today - poorer prognosis - recovering from last batch of bad words....tell me why would Chicago be offering me a brain treatment if I didn't have a chance????????

I'm staying positive....they could come up with and make it available within months.....don't let them do this to you too!

I cannot promise you in 1 year I will be here to encourage you, but I think it is possible.

[Believe51]

I think so too Barb!!>>Believe51

[Andrea Barnett Budin]

Dear sweet Lisa,

We all can relate to what you are feeling. I was grimly told in '98 (having recurred after my initial dx in '95) that my Stage 4 highly aggressive form of bc, w/2 lymph nodes involved and now found throughout my liver -- "what you have is inoperable, incurable and you will be on long term chemotherapy for the rest of your life". I, and those like me, were told our prognosis was poor. I was terrified. I felt decimated and defeated, despite my generally optimistic take on Life.

But, I listened to my Inner Voice, which told me to toss all the books full of lousy statistics aside. (My husband read it all and looked like he was preparing to plan my funeral.) I told him to forget about my dying, I planned on living for many decades to come! And I absolutely meant what I said. I began reading Wayne Dyer and Gary Zucav and my whole world became transformed. Now I turn to Eckhart Tolle and Naomi Remen. CHECK OUT MY SIGNATURE FOR MY STORY...

A *diagnosis* is not a decree. It is an opinion. Based on a lot of old statistics -- which in turn alarm people (naturally)-- so they become swept away with a sense of doom -- and they further worsen their chances of survival in the process! Crazy, no? We become ensnared in self-prophesizing our fate (in accordance w/past odds), perpetuating the ugly stats... WE BECOME CAUGHT IN A WEB OF FEAR.

I've learned that cancer is all about fear. Conquer the fear and you will live to tell your tale. You'll become a miracle patient that docs and nurses will talk about and report to others about! That's me. I have moved into the 1% club. And you know what? I AM GIVING YOU A PERSONAL INVITATION TO JOIN ME!

So, long ago I consciously used my power of choice to focus my energy on living AS IF I am healthy and well, or working my toward that. Living AS IF what I want is on its way to me! Consequently, I live in joy and in love with Life. I truly treasure each person I hold special in my life. I say I love you more. I hug more. I feel serene, KNOWING I am back in control of my future. I shun fear (sure I have my moments, and I breathlessly experience the emotions that come with the scary possibilities that tend to loom up -- I am human; I am not a fool!), but then I move onward and upward as quickly as I possibly can. I decidedly *reauthor* the thoughts that live in my head and play out all day long.

Why? Now this is important! I KNOW that my body, and the Universe, hear everything my mind so much as thinks let alone whispers. Whether it is a passing thought or a drone of obsessive and fearsome ideas. Emotions and images come with our thoughts. So when I tell my body, and the Universe, that I am genuinely grateful for the blessing of each day, for the beauty that fills the world, for those I have in my life that I cherish -- I am getting my body, AND the Universe to collude with me and help manifest my desired destiny...

Someone has survived your specific kind of cancer. If one person can do that -- so can you! Who are the ones who survive? I believe I have learned they are the ones who make their EXPECTATION clear! They are those who live with an open heart, as a vessel for Universal Love. Who act with compassion and generosity of Spirit and express their ever grateful feelings for all they have with their words and deeds regularly.

I do not linger on what I would like to change that is unchangeable. I want my breast back, for example. I want the years of chemotherapy and it's lingering and dastardly awful side effects to disappear. Wasted energy! Instead, I am filled with the elation of being alive, experiencing the honor of living to see not only my first grandchild born, but 5!!!!! I feel so lucky. So blessed.

Lisa, I hope my words help you, and anyone seeking to find harmony midst chaos.

In your darkest moments, stop and step outside yourself. Become The Witness, The Observer. See your story with a new perspective. As you do this, you will be going within to your Truest Self, connecting with your radiant, eternal Soul that is full of eons of wisdom and more Love than you can possibly imagine. You will then become PERSONALLY EMPOWERED, which is the purpose of your Life. To grow and evolve and become more than you ever were. To make your dreams become reality, with the power of your thoughts, your Spirit and it's divine energy!

Sending you love,
Andi

[Lien]

Dear Lisa,

Statistically speaking you may have had a poor prognosis at diagnosis.
But statistics have very little meaning for your individual situation. Either the cancer comes back or it doesn't.

Most Her2 cancer recur early; within two years. The fact that yours didn't, means that it's probably not all that agressive after all. Or that the tx. you've received has worked.

Your statistical prognosis would be much, much better now, because you survived more than 2 years.

Poor onc! He got it all wrong!

Hugs

Jacqueline

[fauxgypsy]

In the world of destiny there are no statistics.