Re: question about metastatic cc

YIPEE, SallyPA. We love to hear this kind of new. Thank you so much for posting this. Let's PARTY!

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: question about metastatic cc

Sally....fantastic news.   Things are back to "normal". Enjoy.
All my best wishes for the upcoming scans.
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: question about metastatic cc

the day we have been praying would never come came today. it has been over a year since my sisters surgery and all scans had been clean after she completed chemo and radiation. i guess she still felt something was wrong so a mri was ordered. the results were a new tumor was found in the same location as the old one. we are all stunned and scared. the ct scans never showed it so we dont know how long it has been there. i dont know why they waited so long to order a mri. we dont know what the new plan will be. a biopsy was ordered to see if it is cholangiocarcinoma but we believe it is. it is horrible. it is almost like this cancer waited until we got things back to normal and felt good about her condition before it came back to destroy our lives again. it is so cruel! i feel numb right now. she is being so brave. i dont know what to do.  when is the government going to stop funding wars all over the world and put the money into research so people dont have to suffer with these terrible diseases. i dont know what the drs will do with recurrance but we are praying they can help her. our family is dealing with a lot right now. my father in law underwent a second surgery for colon cancer and my mother in law had to be rushed to the hospital to have a pacemaker put in. at one point they were both in different hospitals at the same time. now this. they say god doesnt give you anything you cant handle. right now im not so sure. i pray He will take care of us. i am so sad right now.

Re: question about metastatic cc

Dear Sally, I am so very sorry to hear about your Sister. When Teddy's CC returned to where it had been before they didn't do a biopsy as they knew from the MRI. What a blessing that your Sister is so brave and that should help you to be brave with her.  You never know how strong you are until "strong" is the only choice you have! Please keep us posted.

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: question about metastatic cc

Dear Sallypa, I'm so sorry to hear of your sister's news and your family's current health situations.   Please take one day, hour, minute at a time.  I know things are rough right now, but you will all be able to face a new game plan when the time comes.  Thoughts and prayers are with you all.  Pam

Re: question about metastatic cc

Hi,
May I suggest to-get a PET/CT to determine whether the lesion is cancerous or not;may be  the lesion is just a blood vessel or other structure that appear as a lesion on the MRI and is  too small or for other reason that CT scan could not pick it  up. That was the same situation happened to me in my second resection.
Turn out to be atypical lesion and I regret not to have a PET/CT first.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: question about metastatic cc

thank you all for your encouragement. PCL1029 i really appreciate your advice. i will talk to my sister about that. i dont know if they did a pet scan yet. its at least a hope that this could be something else. you also said that you had a second resection. i didnt know if that would be an option but now i see maybe it will be. thank you very much for the help. i will tell my sister about you to give her hope. god bless.

Re: question about metastatic cc

my sister is scheduled for a biopsy tomorrow. i have given her the information about having a pet scan to discuss with the dr but she said the dr knows that it is cancer and it is in the same spot as before. they told her last year if it returned they would not be able to do another surgery. we are praying for different answers tomorrow and maybe something positive. we dont know what to expect in the coming days and months. i dont really know how to give her hope. we are going to get 2nd and 3rd opinions but it is very frightening.  if anyone has suggestions or success stories i would love to hear from you.

Re: question about metastatic cc

Sallypa...try to stay hopeful and let's await the biopsy results. Although the doctor suspects it to be a recurrence nothing is for sure until the biopsy results come in.  So I am crossing my fingers that it turns out to be something else.  Please, also remember that other treatment may be available for your dear sister.  We have seen for tumors to respond to different protocols. Don't give up on hope and please, keep us posted. 

All my best wishes,
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: question about metastatic cc

my sister had her biopsy today. we will get the results on friday. the tumor is one centimeter right now but apparently it is in a bad place. it is right near the main vein of the liver. they were very concerned about hitting this vein when they did the biopsy. i dont know what that means as far as treatment goes. i dont know if surgery will be an option. we just have to wait and pray. does anyone know if cyberknife surgery is precise enough to deal with a tumor in this location.

Re: question about metastatic cc

Sallypa, Teddy had Cyber Knife and I know it is very precise as it was originally developed for brain cancer.  Also the tumor has to be under 7CM which your Sister's is so that is the good part. As usual we have to wait and see. I know you will let us know and I am crossing everything for some better news.

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: question about metastatic cc

sally.......each case will be reviewed on its merrits re: surgery or radiation treatments or chemotherapy for this matter.  Fingers are crossed for one or the other option to be considered.  Hang in there and don't give up on hope.
All my best wishes,
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: question about metastatic cc

my sister saw dr today about results from biopsy. dr said they took three samples from tumor and all came back negative for cancer. he wants to wait a few weeks and do another biopsy and see if tumor continues to grow. also wants us to talk to surgeon to see if it can be removed. my sister is still depressed as she feels it is cancer and they just probably did something wrong. i dont want to give her false hope at the same time i feel glad that the results were negative. she said dr gave no indication as to what it can be.  this tumor is in the same place as the one that was taken out. is it possible it isnt cc? was wondering if anyone has had this experience or can give some kind of better explanation.

Re: question about metastatic cc

sally....could it be scar tissue from surgery or the radiation? We have seen it on this site.  Stay hopeful, please.
All my best wishes,
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: question about metastatic cc

Sally, I had my own "rare" Cancer surgery 2 years ago. I have PET Scans every 6 months. At the top of my scar and on the inside at a lymph node it always looks 'peculiar'. There are no changes at all in 2 years and they believe it is from the surgery. I think its just scar tissue as I get a lot of that. I am sure if the ONC felt anything  amiss he would take it further. Two weeks until another biopsy is not too long a wait and there is nothing to gain by stressing out especially when Cancer thrives on stress. Wishing your sister the best. Guess we could make up another word here and call it an "anxibio" (anxiety/biopsy).

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: question about metastatic cc

i thought we had good news. we met with my sisters surgeon dr fraker and he said he could operate on the tumor. he scheduled surgery for december 15. after this meeting my sister had an ultrasound and now they have found a mass on her right ovary. i dont know what this means as far as surgery or treatment. dr fraker has not seen the results yet. a mri is scheduled on december 9. i dont know if this is the cc that has spread or if it is ovarian cancer. i am hoping and praying it is just a cyst or benign tumor. so far they are just calling it an adnexal mass and from my web searching that means it could be cancer or it could be benign. i couldnt find any reassurances. i just dont know how much more she can deal with. she is so brave and is always looking to make everyone else comfortable and happy. i am praying for the best.

Re: question about metastatic cc

Hi,
A PET/CT scan will answer the question for you whether it is a cyst or benign or malignant.
MRI may or may not tell it is ovarian cancer or not; and the PET/CT scan also can tell you whether the recurrence is hot or not.

Below is a copied message about PET/CT scan usage from the experience forum under radiation.

"I will recommend PET scan right after  CAT or MRI if recurrence  is confirmed  or small lesions detected by MRI but not sure whether they are cancerous or not.This will give the doctor more info about the lesion  such as whether the lesion has metastasized or give the doctor a more informed  idea  what he/she saw on the M R I or CAT scan indeed is a tumor that has metabolic activity(maxSUV) value and required immediate attention such as chemo therapy or resection,RFA,chemoembolization,radioembrolization,PDT,SBRT .
By doing so,the doctors will not be confused with and discard the lesion as being part of the artery or hepatic vein or other forms of lesions and ask the patient to return in 3 months to repeat the scans to make sure.As you all know, 3months is a lot of valuable time for patients as well as caregivers. Who wants to wait for another three months?  I think this is the part of early detection that we,ourselves, can monitor and provide the early benefit of  more treatment options to the patient.

PET can find or confirm cancer  metastasized activities in the other parts of the body.PET may not be a good choice to locate NEARBY metastasized cancer activity such as the lymph nodes that are very close to the primary site of CC because the closest distances between the lymph nodes and the CC.)

PET Scan allows visualization of CC because of the high glucose uptake(SUV) of the bile duct epithelium(the lining )-- the "Hot spots" will light up on the PET scan and show the relative cancer activity of the lesion by the SUVmax value."
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: question about metastatic cc

Dear Sally, I am sorry about the latest news however yhour Sister's bravery will not stop as she will continue to find out what is need and proceed to her next game plan. Wishing for you all the strength that is needed and let's throw in a whole lot of good luck! Please keep us posted.

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: question about metastatic cc

Sally....I can't think of one single incident (on this site) in where this cancer had metastasized to the ovaries.  A few exceptions are those with a prior diagnoses and treatment of ovarian cancer who then, but at a later time were diagnosed with cholangiocarcinoma.  Therefore, my hopes are high for the lesion to have another explanation.
Thinking of you and sending my best wishes your way,
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: question about metastatic cc

well, mri and pet scan are done. we had appt with dr today. they now see a tumor in my sisters ovary and another in her uterus. this is added to the previous one in her liver. she has been scheduled for surgery tomorrow for a few weeks. dr said today he is going to first look at those new tumors in the o.r.. if he doesnt see more than just what was shown on the mri and pet than surgery is still on. if he sees more than he cant do the surgery.he is afraid there are more microscopic cells or tumors there that arent visible on the scans. he said cc usually doesnt spread to that part of the body but in rare cases it has. we are praying all goes well tomorrow and he can remove the tumors. it has been such a hard six months. my sister is dealing with this. my father in law is having a hard time dealing with the radiation for his colon cancer. so many people in our family are being diagnosed with cancer. it is really hard to imagine. this doesnt make the season very merry. it is christmas and we are praying for a miracle.

Re: question about metastatic cc

THANK GOD. we just got a little christmas miracle. dr fraker didnt see any more tumors so he is going ahead with my sisters operation.

Re: question about metastatic cc

YEA!!!!!  Did you ever meet a group of people who love surgery more than we do?
Mmmm   perhaps we should start a link of Christmas Miracles for the next 2 weeks!

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: question about metastatic cc

Sally.....fantastic news.  Another surgery - another good day. 
Fingers are crossed for a quick recovery.
Please, keep us posted.
All my best wishes,
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: question about metastatic cc

my sister made it thru the surgery and is feeling as good as possible. dr told us he found 1 tumor in her liver and 3 in some fatty tissue also one on her ovary. all 5 were removed. he is concerned that the cancer is now metastatic but wont say for sure until he gets pathology report. we had hoped for better news but at least she had the surgery and i guess we start all over with chemo. we are thinking of going to sloane kettering for a 2nd opinion on chemo treatment.

Re: question about metastatic cc

Salli....good to hear that the surgery went well and all tumors were removed.  Still hoping for the pathology report to come back negative for CC.  Please, keep us in the loop. 
Tons of good wishes are heading your way,
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