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Mtngrl
04-19-2016, 12:20 PM
I just "happened" to log on today. When I read my signature I noticed this is the fifth anniversary of my breast cancer diagnosis.

It took over a month to complete the staging, but on May 24, 2011 I found out my cancer had spread to my liver and lungs.

I'm glad I'm still here. I'm doing well. I'm one of the lucky ones. Although I haven't spent much time in NED territory, my cancer has been pretty stable and hasn't caused a whole lot of trouble, other than the psychological burden(s) of living with an incurable disease that will most likely get the upper hand someday.

To "celebrate" half a decade (and counting) of being qualified for this club, I have a few things to pass on to anyone who's just starting out:

---Don't worry about anything until you have to.
---You are entitled to have a lot of control over the management of this condition. Your health care team does, indeed, know more than you about oncology, and you should hear them out, but since they don't actually know how to cure you, you get a vote too. You even have veto power.
---The people who write scan reports tend to use pretty gloomy language. They (usually) get the facts right, but their conclusions tend to skew negative. They are much more likely to say "evidence of progression" than "stable."
---Remember that HER-2+ cancer is normally very aggressive. In the absence of treatment it would almost certainly progress rapidly, so consider thinking of any scan that doesn't show new lesions as a "stable" scan. And if it's "stable," then you can stay on your current treatment a little longer if you can hack the side effects.
---Any drug that will clear up a little bit of cancer will clear up a lot, so, again, don't be too quick to switch treatments.
---As much as possible, live in the now, and be grateful.
---Live your life. You're going to die (a certainty for everyone, everywhere), you're not dead yet, now what?

Lisalou
04-19-2016, 12:38 PM
Happy Canniversary
Take care

MaineRottweilers
04-19-2016, 04:56 PM
Amy, I am celebrating with you. Here's to the next half decade (and as many more as you would like). I am grateful for your sage advice. It has been taken to heart.

ariana
04-19-2016, 05:58 PM
I have taken your advice as well. Congratulations !!!! And many more years
to come.

gramen
04-19-2016, 07:11 PM
Congratulations on the aniversary and thank you for the advice!!!
Also, read your message at the perfect moment, it's taken me almost two months to start treatment and I'm sooo scared of this rapidly growing her2 stage iv liver metastasis. You are living proof there's hope :-)

Mtngrl
04-19-2016, 08:40 PM
Thanks, everybody! I'm so glad I found this group.

Amy

Jedrik
04-19-2016, 11:35 PM
Love it. Pray continue. :-)
And thanks for the advice, I keep forgetting about some of those things.

Carol Ann
04-20-2016, 07:50 AM
Thanks Amy! You are a treasure for all of us, xoxo and so glad you posted your wise words for all of us to have.

Carol Ann

waterdreamer
04-20-2016, 08:30 AM
Congratulations!! Great words of wisdom, and so good to hear you continue to thrive.

thinkpositive
04-20-2016, 10:30 AM
Congratulations Amy! Thanks so much for sharing your words of wisdom. I'm glad you continue to do well and are truly living.

Take Care,
Brenda

SoCalGal
04-20-2016, 11:55 AM
Great post, Amy!!!! I'm a few years ahead of you, love your words of advice!

Donna H
04-20-2016, 12:31 PM
Thanks for sharing your words of wisdom. It is always welcome to hear from strong survivors like yourself. I can always use the encouragement and advise. Congrats on the milestone - may there be many, many more!

Crn
04-20-2016, 07:19 PM
How wonderful. Thanks for your willingness to share your experiences with us.
Cindy

Pamelamary
04-21-2016, 02:03 AM
Thanks Amy! and congratulations on reaching this cancerversary. May there be many more.
Best wishes.... Pam

dawny
04-21-2016, 06:10 AM
Thanks for sharing Amy! I look for your posts

Xxxx

jaykay
04-21-2016, 09:43 AM
Wise words for anyone, Amy - thank you for sharing!

Congrats
Janis

Kim in CA
04-25-2016, 09:04 AM
Thanks for sharing this Amy. Very wise words indeed. Something even us old timers need to remember sometimes!

Congratulations, and here's to many more years of living life!

Kim

caya
04-27-2016, 08:56 PM
Congrats Amy on 5 years! I hope you get to NED status soon!

all the best
caya

Jackie07
04-28-2016, 02:55 AM
Congratulations!

Thanks for sharing those tips. They can be applied to just about anything in life.

KatherineM
05-01-2016, 05:50 AM
Thanks, Amy! Such smart advice. My scan in March showed mixed results, with some lung nodules growing and some shrinking, and my onc switched me from THP to Kadcyla. I didn't question it; she said THP wasn't working. Wish I'd questioned a little harder.

April 28 was the first anniversary of my stage IV diagnosis. I was diagnosed with cancer only the year before.. I hope that I can hang around for many more. Thanks for your post, Amy. You give me hope!

Best to you,

Katherine

agness
05-01-2016, 10:00 PM
Congrats! Great advice too. Here's to many more.

Mtngrl
05-05-2016, 10:11 PM
Oddly, one of the effects of NOT having a more speedy demise is figuring out what to do with myself year after year. I live my life, of course, and I try to make it count for something. One thing I feel passionate about is helping others who are dealing with cancer. I realize the very fact I'm still around might help light other people's paths.

I'm grateful for every day, and every breath. I am aware that everything could change abruptly, but it no longer haunts me. In a strange way, having death perching on my shoulder and whispering in my ear for five years has been liberating. It helps me keep everything in perspective.

Amy

Pray
05-11-2016, 11:09 PM
So happy for you and your family! Thank you for posting. :)