Topic: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hello All:
I am very glad to find this website. I have been diagnosed with CC (as of a week ago) and I really felt all alone in the universe.

My situation seems a little unusual in that I was and remain symptom free. I had a cat scan a few months ago for some (still unexplained) low abdomen pain, which resolved on its own, and the liver tumor was spotted. Two months and three biopsies later I finally have a diagnosis.

I do not have symptoms and all blood work, including LFTs, AFP and standard tests are normal.

At this point, I am told surgery will be horrible but is able to be done. In two weeks, I am supposed to have the procedure where they shut off the blood to the side of the liver where the tumor is in an effort to grow the "good" side prior to surgery.

My questions are: how usual is it to have no symptoms? Have others had this experience? What is life like after the "shut off the blood flow" procedure? Am I still going to be able to get done the things I need to do before surgery?

And has everyone gotten second opinions? Is there ever a time when initial reading of the biopsy is wrong? (I know this is unlikely, but as I am sure you all know, you tend to focus on unrealistic things when hit with this sort of news.)

Thanks for all of you who post and I send my most positive wishes to everyone dealing with this.

Irene

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hello Irene,

Before I went to the doctor I was nauseous and felt bloated.  There wasn't much I could eat, and this lasted about 2 months.  The labwork came back great, and my liver enzymes were just fine; however, doctor did order a CAT scan which showed cancer in liver.  I had a PET Scan and a biopsy.  The biopsy pretty much confirms cancer, and my pathology was sent to at least 3 hospitals before cc was diagnosed.   How big is your tumor?  That might explain why you have no symptoms.  This may have been caught very very early.  Are you being treated by your general practitioner or have you gone to a comprehensive cancer hospital?  My liver specialist said my best option was the portal vein embolization which is what your doctor wants for you.  As you said, that shuts down the blood supply in one lobe or part of the liver and hopefully the other part will regenerate.  It can regenerate as fast as 2 weeks.  I do know the liver regenerates fairly speedily.  When you have this done, you will be heavily sedated, but you must be able to respond to any questions asked by the radiologist so you won't be "out". For me, after it was done, I didn't suffer any pain from it or notice anything different as far as shutting down the blood flow to the liver.  The portal vein embolization caused no problems for me.  Both the surgeon and oncologist wanted me to have chemo and wanted to give the liver about 3 months to regenerate.  My tumor is very large though so that's why I had to have chemo.   At this point, I am scheduled for a liver resection July 7th.  Both of us are fortunate we have the option to have liver resection because that is supposed to be the gold standard.  As for what you can do after the portal vein embolization, if you have no symptoms, you can go on and live just like you do now and get done whatever you want.  I had to take a medical leave because I taught junior high and my anxiety and physical symptoms made it far too stressful to continue.      My prayers are with you, Irene.
Sophie

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Welcome. So sorry you have to deal with this, but this forum is a great support.

I wonder if you would qualify for the transplant protocol that Scott went through. It has a much higher success rate, statistically, than resection, but the tumor must not have spread outside the liver. You would need a second opinion from a dr that does transplants for cca in order to know for sure.

Our surgeon, Dr Schwartz, at the University of Utah is looking for people with early stage cca. He  is trying to duplicate a study from the Mayo that had an 82% survival rate after 5 years. I highly recommend him.

Scott is 5 weeks out from transplant and doing great.

Good luck and God bless,
brenda

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hi Irene,
It is not so unusual to have no symptoms. In fact, the lower abdomen pain that you had, could be your survival. It seems to me that you are spotted in an earlier stage than normal and that makes the chance of survival much bigger.
Of course it is never easy to undergo major surgery, but if it gives you a chance to live longer, it's worth it.
I wish you good luck and all the best. Go for it!
I'll be thinking of you and hope to read good news from you in the future.
Iris.

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

I had absolutely no symptoms, apart from a weird pain that lasted a couple days and went away, which I later found out probably had nothing to do with the cancer. I mentioned it to my family doctor when I had an appointment for a skin rash, and he ordered a slew of tests. They assumed it was my gall bladder, because I'm female and, ummm, middle aged. My blood tests were wildly high, but it took them six months to figure out that what I had was cholangiocarcinoma (Klatskin tumor), and in that time I had no symptoms at all-- until I turned yellow and started itching like crazy.

The surgery was no fun, but four and a half years later, I'm still here (despite a recurrence.) I know the kind of shock you must be feeling. It sounds like it would help you if you got another opinion and another point of view. And don't give in to panic or despair. Your life ahead holds many beautiful days that you can't even imagine now. I promise!

Wishing you all the best!

Kristin

Peace, hope, and healing to all!

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hi,
I appreciate all the feedback. I believe there is hope and there are several people posting in these forums who are proof that this is survivable.

Am getting a second opinion, but don't expect miracles there. I will continue to post here as things progress. And again -- I send my most positive, fighting thoughts to all of you.

Irene

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hi again -

I meant to answer some questions people have asked. My tumor is about 5.5 by 6 -- so pretty large. Has taken three months to diagnose. MRI and cat scan "worrisome" but incolnclusive; first biopsty inconclusive -- showed scar tissue which was abnormal and again, worrisome. Second biopsy identified the cells. Not symptomatic -- have been fatigued for about a year, but figure that is not probably related. Blood work has remained completely normal (though had a new round last week and have not heard results yet.)

I am so relieved to hear that the portal vein procedure does not seem to negatively affect people too much. 

Thanks, everyone. It is tremendous not to feel so alone.

Irene

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hello Irene,
    Welcome to the site. I know it is scary, but you are very fortunate to be able to have surgery. My Husband Butch has intrahepetic CC, and he has NO symtoms - other than a very low-grade pain in his right abdomen (a "1" on a scale of 1 to 10).  It is hard to accept the diagnosis of so serious an illness when there are no symtoms, isn't it? It doesn't even seem real.  He will have a liver resection on July 15 ot UPMC, and we are so happy - Mayo Clinic turned us down 1st. SO - we did get a 2nd opinion, but - it was for treatment, not confirmation of the diagnosis, really.  It turns out that not having symtoms is the way this type of cancer  sneaks up on you. I know at first I thought someone MUST have made a terrible mistake in diagnosing Butch this way when he wasn;t even sick (actually - he was sick from the pulmonary embolism he had, caused by the blood clot in his leg that became a thrombosis). NOW we learn that that is common when you have a tumor on your liver! Wow - the things we have learned! Anyway, good luck to you.

Joyce

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

My Mother has recently been diagnosed, until that time she always was the picture of health.  Over a few days she noticed the tell tale signs of jaundice, and went to see her local doctor.  She though it was gallstones.  Mum felt fine, and never in a million years ever expected cancer.

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hi Irene. Sorry to hear of your shocking diagnosis, but thumbs up to the hope for successful treatment. My sister was also completely asymptomatic until she turned yellow and was very itchy. By that time, she already had large liver tumors besides the klatskins in the bile ducts and a resection was impossible. So I guess the light grey (I refuse to call it silver) lining in the cloud is that they seem to have caught your tumors relatively early. So good luck and this board really is an excellent resource.

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

My husband had no real symptoms either. It was found accidentally. His labs have been normal and the ca-19-9 ( the cc tumor marker) was slightly elevated) God bless you and watch over you at your surgery. Think positively and pray!

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Hello All:
More questions I hope folks can hlep me with me. As you all have experienced, this diagnosis means suddenly trying to become an expert in something you had no awareness of 2 weeks ago.

I just gor recent bloodwork back, including first tests on tumor markers Ca-19-9 and CEA; also had my second AFP test.

Results are 68.0 on Ca 19-9, and 0.9 on CEA (which seems to be a negative reading.) AFP level if 3.0, the same as it was 2 months ago.

My question is this: how significant is that Ca19-9 number? Is this good news (that its clearly high but not hugely so) or is it really only clinically significant that it falls into the reference range for CC?
Thanks for guidance.
Irene

13 (edited by marions Tue, 08 Jul 2008 00:40:42)

Re: Newly Diagnosed And Not Symptomatic. Other Experiences?

Irene,
we were told that the CA 19-9 can fluctuate greatly and is taken in consideration when evaluating the patient it is however, not a sole way of determining progression of the disease therefore, it is only of significance when other symptoms are present.  What is being observed is the trend of going up or, going down.  As Peter had mentioned once:  It is more of an art then a science.
Marions

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