Topic: Am I different or is it me?

After reading and submitting to this wonderful, amazing site for almost 1 month, I am wondering (just a little) if my doctors diagnosed me properly.  OK, sure I have tumors on my liver, but I'm not jaundiced, my liver function bloodwork is normal, they can't find any metastses, my lymph nodes were clear.   I am reading about so many symptoms and issues that I just don't have (yet??).   My oncologist at Emory said that he is 95% sure it is CC, but he says he has a 5% feeling that it could have metastisized from somewhere since I am NOT jaundice, etc.   But according my previous MRI, tests, biopsies, etc.,  I am clear elsewhere.   So what the heck is going on?  I am waiting on results from my CT & MRI done last week, so we'll see if there is any change.
I know I need to shrink these tumors with chemo, so that I can have radiation, then try to resect again.  But, it is curious that I am generally symptom free, other than discomfort due to the enlarged liver and my appetite was down so I lost about 5 lbs prior to being "diagnosed".
Sorry for coming across frustrated, confused, etc.......maybe I'm just thinking too much.   Can anyone offer some insight?

- Suzanne

Re: Am I different or is it me?

Hi Suzanne,

I am no expert on this, but have been learning a lot since my husband Jim passed away 9-2-08 at the age of 62. He didn't have any symptoms until it was too late. It sounds like yours has been found earlier. In the beginning he was just fatigued & had some leg pain.  About the middle of July he had pain in the lower right flank which they thought was a kidney obstruction & they put in a stent which later was failing.  He then kept developing blood clots even while on the blood thinners. By this time other symptoms started to develop. In the end he had them all.  A lot of the tests (CAT MRI, Ultra Sound etc.) did not show much. He was diagnoised 1 week before he passed away after a liver biopsy & a PET Scan. It was in 95% of his liver & he was by then so thin & weak that treatment was not an option. You are fortunate that you seem to have been diagnoised early enough that there are treatment options available to you. Confusion & frustration are just the nature of this disease. It is a silent, sneaky cancer. If your doctors have not yet offered it, I would suggest to them you want a PET Scan as that seemed to be the one test that confirmed everything in our situation. Good Luck to you. You will be in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Am I different or is it me?

Suzanna,
My husband is pretty much symptom free.  A very mild tummy ache sent him to the doctors/tests a year ago.  He was never jaundiced or itching.  Long story short he lost alot of weight just as he was finally getting his first Cyberknife treatment.  Unfortunately the cancer metastized to his sprine and another to his liver so there was another round of Cyberknife.  Right now he seems symptom free again (no pains, no weight loss) but I know that nasty disease is lurking in his body.  Be thankful you are fortunate enough not to feel symptoms.  You are in my prayers.
Karen

Wishing all God's blessings!

Re: Am I different or is it me?

Karen and Darla.  Thank you both for  your support.   Karen, I presented much like your husband, some discomfort in my stomach area that I thought could be an ulcer or my gall bladder.  But other than that, no other symptoms.
Karen, where did the cancer initially come from, also his liver or only the bile ducts?   I have been told that due to the size of my tumors, cyberknife or any other radiation is not yet an option.   Hence the chemo to shrink them.
I'm needing to put back on the weight I lost after surgery, but other than that and some mild tightness around my bra line (right under my boobs) I'm doing ok.   Still recuping from the surgery too but I don't count that.
Thanks for your thoughts.

- Suzanne

Re: Am I different or is it me?

I am not sure where I heard this, but - someone told me that intrahepetic CC is more symton free - no jaunduce. Extrahepetic goes to jaundice. My husband's cc is intrahepetic, and he still has not jaundiced, and the Doctor is thinking of putting him on hospice any day. now. I hope this helps.

Joyce C

Re: Am I different or is it me?

Suzanne,
Rob's tumors were first found in the liver.  The first Cyberknife treatment was for 3 in the liver, one being pretty large.  Is it the Cyberknife doctors that have told you that you cannot have the treatment or another kind of doctor?  I find certain doctors like to keep you to there specialty only.  If you have not sent your information to a Cyberknife facility I would recommend that you get their opinion.  Best of luck.
Karen

Wishing all God's blessings!

Re: Am I different or is it me?

Hi Karen,
I'm told that with any radiation right now, due to the size of the tumors, that too much of the healthy liver tissue would be damaged.  So that's why the chemo to start off with.
We have a local hospital that has cyberknife, but my main oncologist does not practice at that particular hospital.
Once I get my latest CT/MRI results, I'm going to send my records to MD Anderson and see what they have to say.   Not that I am doubting my oncologist and his methods, but I just want to make sure 110% that I am on the right track and doing all I can.
Thanks for the info.

- Suzanne

Re: Am I different or is it me?

Hi Joyce,
When was your husband diagnosed?  Is intrahepetic CC more aggressive than extrahepetic?   Does this mean I will go downhill fast and need hospice soon also?

- Suzanne

Re: Am I different or is it me?

Suzanne,
I didn't mean that you will go downhill fast. Butch was diagnosed in early March. He had a liver resection at UPMC in mid July, and there was lymph node involvement. We will never know what would have happened if we had just continued with chemo - he had only one round, and was responding well. Everyone is different, and responds differently to this awful thing. In retrospect, I think the operation speeded up the growth of the cancer. I only meant that interhepetic people don't seem to get the jaundice as much as extra, so they remain more symton free. It is hard to believe the diagnosis when symtoms are not showing up. Butch's case is different, I am afraid - he also had schlerosing cholingitus, which complicates the whole hing hugely. He is 66 years old, and the surgery has weakened him so that he can't take chemo now to fight this off, and that is why he is going to go on hospice.  I am hopeful that yours will go well, you will respond well to chemo , and we will be hearing good things from you in the future.

Joyce C

Re: Am I different or is it me?

Hi Joyce - Sorry to freak out on you.  I'm still learning how to deal with this thing.
You still have a good attitude, and I know that will help Butch.   Thank you for easing my mind.

- Suzanne

Re: Am I different or is it me?

Hi All:

I think the real message is that this awful disease takes a different path with every single person. Like some others here I was and remain symptom free, with perfectly normal bloodwork, including liver fuction. I have the intrahepatic type. MY choice it to take no further treatment until such time as I am symptomatic or bloodwork/CT indicates movement. This is a personal decision for everyone, obviously, but in my case I believe introduction fo toxic chemicals will not only not help but may accelrate growth of tumor. 

Irene

No one knows, and no decision is right or wrong.

Re: Am I different or is it me?

Suzanne,
My husband also had no sympyoms, he was diagnosed during a routine scan very nearly two years ago. At the time they found it the tumour was large 8cms intrahepatic and no surgery was possible and they gave him 6 months to live. We decided not to go with the chemo until he started feeling unwell as there was no point making him ill when he was not. We had 16 months with lots of travel and catching up with friends then in June the consultant said he suggested trying Gemcidabine as although the cancer was growning slowly from scan to scan it had progressed considerably over the year. The chemo stopped the growth, but at the moment he is jaundiced and just waiting for a stent so he can continue chemo. Still his only symptom apart from the jaundice is extreme tiredness, but no pain thank God.
So please dont panic, everyone is different,  and it sounds as if you have your cancer in a part of the liver not affecting its function as yet.
Let us all know how you go on.
Sue