Topic: Progression

What do we know (or suspect) about the progression of cc?  Most of us are diagnosed in Stage IV because the symptoms are obscure.  But, how fast does it progress from I to II to III to IV?

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Progression

Hi Duke, Not sure this can be answered as I don't think we know, its a guessing game. Teddy was staged at 1B after his Whipple. The CC returned to the same place (ampulla of vater) 2008 had Cyber Knife returned again Jun 2010 again same place, passed Dec 2010. Never had chemo as 4 ONCs/Radmen  said it would not work. But remember that was a long time ago in our CC world.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Progression

Duke, I think this depends on the particular mutation. There are fast growing tumors and slow growing tumors. So I don't think this question can be answered in a paragraph.
My surgeon said the Stage IV tumor in my liver was probably about 9 months old. And it was only about 4x6 cm. but the placement is what determined stage IV.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Progression

They saw my mom's tumor on scans over 2 years before diagnosis.  She was critically ill from crohn's disease/colitis that they didn't bother checking out the "spot" until they were able to get the crohn's stable.  After about 2 years of no changes, the tumor got slightly bigger.  That is when they did the biopsy and diagnosed bile duct cancer.  With chemoemobolizations and systematic chemo it was relatively stable for the next 3.5 years.   Then after a month-long break from the chemo, it spread like wildfire to her bones (leg and eventually her hip and rib-cage) and then her lungs.   She did try a clinical trial and another chemo but when she discovered it spread, she said no more and passed just 3 weeks later.

Re: Progression

I know when they looked at my tumor after resection they estimated the tumor was about 16 months old. My diagnosis was stage IV ICC.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Progression

Duke....same question I had for my doctors and never got an answer.  They just said there was no way to really know.  That wasn't good enough for me...but was the best I got from the doctors.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Progression

Hi Duke,

Wish that I could answer this question for you but I can't I'm afraid. I would argue though that it would be different for every patient, some quicker and some slower, much like everything to do with CC really. I haven;t seen any studies, data or reports about this and if I come across any I'll post them here.

My best to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Progression

Duke -
Just like everyone else I think all we have is anecdotal evidence and it seems to differ for everyone. Mark was stage IIIb after his resection and I know he had symptoms at least 6 years prior to diagnosis. His tumor was about 3 cm by 2 cm by 3 cm so my guess is pretty slow growing in his case. Guess it's just whatever mutation the genes have.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Progression

Duke,

I agree with all what was said.
Every case is different with cc, some patients have slow progression and others a very aggressive one.
My Mom had her yearly check up CT scan for her abdomen in March 2013 and everything looked normal. A CT scan in mid December showed several lesions on her liver, we were in shock. I am still in denial of the whole situation.
So as Kris is guessing, it might be the mutation or other factors that we still don't know about.

cancer just SUCKS

Emad

"For as it goes through fire, passioned with a rebirth desire; it burns to ashes, and a new life dashes; for the Phoenix shall rise"  As I am the Phoenix and i will hold your hands  ...
I will always make you proud
My Angels "SEEK"

Re: Progression

I agree with Emad....Cancer JUST SUCKS!!

Re: Progression

Coming up on my first anniversary of diagnosis so I looked back now that I have an idea what this is all about (as much as anyone).

What prompted my question was that in October 2012 my alk phos was 348 and increased to 449 a month later.  It was about 70 the year before.  It increased to 856 by the time I was diagnosed in July 2013.  I know it is not proof of cc, but it should have prompted my PCP to do something other than order two retests that confirmed it was high.  This is something that impacts both the Registry and the Mayo study since they want the diagnosis date.  Which begs the question about what my treatment options could have been.  But that train has left the station.  I've come to grips with that.

More importantly, it highlights the importance of following up when things don't look right rather than thinking "doctor knows best."  That's the message everyone who reads this post needs to take to their friends and family.  Doctors are human.  Second opinions and all that.  Plus numerous posts about clueless doctors.

This has been pretty much a downer, so to attempt to lighten this up:

If it doesn't look like a duck, walk like a duck, or quack like a duck, maybe you should buy your ducks somewhere else.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Progression

Duke....quack, quack on that.  Couldn't agree more with your statement. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Progression

Hi Duke,

Yep, so agree with what you say as well! And I'll add to your attempts to lighten things up here too if that's okay with you, as for ducks..... crispy skin and plum sauce with mine please!

My best to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Progression

Ha, ha, we can always count on Gavin embellishing on food subjects.  You go, Gavin.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Progression

I think most of the time  this one is the quick and nasty cancer.....the one that bowls you over

Re: Progression

6.47 in the A.M and I was thinking of crispy duck Marion, must have been in need of my breakfast me thinks! As much as I like my prunes and toast for breakfast, crispy duck sounds better! smile

Hugs back at you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.