CSN Login
Members Online: 2

You are here

The term "terminal"

Kat1962
Posts: 26
Joined: Mar 2018

My BC, stage 4, has put me in the "terminal cancer" category.  I was told, stats say 2-5 years, on average.  Now, I'm not one to pay attention to stats.  I'm planning on 10.  However, just wondering what other people's thoughts on what they thought about their own dx, did it pan out that way and how you dealt with the reality vs hope when told you're "terminal".  Thanks for your thoughts.  God bless us all.

peterz54's picture
peterz54
Posts: 345
Joined: Feb 2012

There are many variables which affect longevity, and state of mind is certainly one.

Some of the metabolic therapies might be of help if you're interested in addiing other options to standard of care and some of this information was posted recently by me in response to another rmember.  Just search my user name:  peterz54

I would recommend this short talk by Prof. Seyfried.   The therapy part starts at about 13 minutes in, but you might find some of the biological theory in the first part of vlaue.

He reviews a clinical case of a Stage 4 triple negative breast cancer patient who underwent metabolic therapy along with low dose chemo starting at about 22 minutes.

https://www.youtube.com/watch?v=3TZnjC7SR_w&t=309s

Good luck.   Stay positive

 

 

 

 

Juls4
Posts: 7
Joined: May 2018

I'm struggling with my Stage 4 dx of 4 months. I certainly hope I'm one of the lucky few to last a decade or more, and my friends and family all want me to be hopeful, but at the same time I feel like so many things in my life came to a screeching halt with my diagnosis and I've had to plan as if I only have a few years.  I'm only 35. I never got to have kids and I was just about to start a new career when I got my dx. I've had to completely throw out those plans and I've floudering as I try to figure out how to give my life meaning. If it had more meaning, I feel like I would be better able to fight this, but having to fight this is stripping my life of meaning! Quite the catch 22. I was never actually told the word "terminal", but I was told "incurable" and that it's a marathon.  The meaning is mostly the same, but the latter implies that with new treatments coming out, there is always hope.  I try to cling to that, but it's not easy!

Kat1962
Posts: 26
Joined: Mar 2018

Dear Juls,

Exactly!  I agree with everything you say.  Although I'm 20 years older, I too was just about to start a new stage in life.  My last child left for college in August and I planned to downsize, sell my house (I'm divorced) and move to the city (from being in the burbs for 20 years) and enjoy an active, fun, exciting new life.  I had been planning it for years and was ready to get a new job, new life, new friends.  In September, I got my dx.  You're right - screeeeech to a halt.  Best laid plans shot to hell.  I waited so long for my new life - snapped away.  I was mad a God for a long time.  Why must I always be tested?  I, too, don't know how to proceed with my life.  I was told, typically, I have 2-5 years.  But reading some of these posts - I could have 10?  I have my retirement money and I'm starting to go through it, prematurely, but if I only have 5 years (the last one will suck), go out and LIVE - have FUN!  But what if I have 10?  15?? Do I spend my money more carefully?  I'm in the Boston area and my Doctors are the best in the country.  I did eventually want to move to South Carolina by the beach...again, part of my plan.  But...do I dare leave my doctors who I have the utmost faith in?   Incurable/terminal - almost the same.  But I agree, incurable sounds better - because a "cure" may come along.  I was told I won't ever be told "cancer free", but they can treat what I have.  I'm on Ibrance with Letrozole and Zometa.  I've responded very well, tumors in breast undectable, but mets ones in my lower spine.  But it's a mind f--k as how I move on, the mental/emotioanal part almost worse thant the physical.  It's such a roller coaster of emotions.  I feel badly for you, at such a young age and you got sucker punched.  I hope you're feeling well.  What type of cancer do you have, if I may ask?

bonbondidit's picture
bonbondidit
Posts: 117
Joined: Jul 2014

I couldn't help responding  to your post.  My diagnosis is 3A right out the gate while I was trying to adopt a baby after having 5 of my own. Stripped and ripped right out from me. Everything came to a holt and the family was knocked to our knees.  My husband and kids decided to help with positivity and built a healing pond out back in my yard.  One of the boys ( my son's best friend) was 13 at the time helped place the rocks and was just talking away at how he thought this was really going to help and he HAD to be a part of it.  He was killed the next morning in a rollover accident.  I WOKE up out of my cancer saga; here he's planning for me where I k now and have time to ponder and think, to visit friends and be loved during this journey and POOF he's gone and taken from his mom, sister and brother like that! Then having to break the news to my son that next morning who was 13 also.  Reality check of all life reality checks.  Herman was chatting away the day before about how he didn't like funerals but LOVES Life Celebration parties and that if he died he would want only that way of a celebration.  He wanted to be a chef and told me all his recipes that were sacred secrets b ut that he felt he could share them with me as a special gift.  He went on and on and on about what he would want at his life ceremony.  We dropped him off at 10 that night and by 7 am the next morning, the world as we knew it was changed for life.   I shared all his words with his mom who was listening to all her sons wishes he had shared with me and rather then the pond healing me, I  brought his mom to the finished pond full of flowers, a waterfall and sheer healing and to all the surounding river rocks her sons hands helped place to help heal those who needed it, it helped heal her.  I was never more pround of a child's influence and I woke up that day out of my cancer fog and saw things for what they really are.  I've had time for closures, hugs, planning, focus, priorities, goals, kisses, babies, and everything else inbetween and I've lived life into my 40's. He was 13. He taught me well.  Please live your dreams.  Your meds will follow you to your next doctor group and they will consult with your past docs to keep what s working for you on track.

The best of wishes and happiness

Bonbon

Kat1962
Posts: 26
Joined: Mar 2018

Hey Bonbon,

Wow - what a passage.  First, sorry for your tragic loss.  But you are smart to retrieve only what was good about the joy of life he showed you.  He must've been a very remarkable mature boy (13 is a boy), and you are remarkable as well for him to confide so much to you.  As the previous message written - for me - it's hard to navigagte being told you are terminal/incurable (2-5 years is not long), and live every day.  On the other hand, maybe I will have a good ten years.  Do I spend my retirement money and travel, etc...or will I need it to live out those 10 years.  When I was diagnosed, my youngest just went off to college and I was an empty nester.  I had plans in the works for over the past year in moving into the city and having a vibrant, urban, fun, exciting city life.  That was September.  Diagnosis put those plans on hold.  But I'm still planning on it.  I swear, the pain and suffering I endure is more mental than physical.  I was looking forward to joining Match.com (I'm divorced) and dating again, finding love again.  Now...who wants to date someone that's going to die?  (Well, we're all going to die, but I carry a heavy risk!)  In any case, your note was inspirational and soooooo appreciate your words.  Keep in touch.  I like inspiration and not doom and gloom.  God bless us all.  Kat.

SLS100's picture
SLS100
Posts: 37
Joined: Jun 2016

Hi:  does anyone know of someone with tnbc who has had immunethera[y.  They have called mu cancer unresectable meaning they can't remove it.  They have given me two years.  ANy thoughts?  So scared.

 

 

Subscribe to Comments for "The term "terminal""