Topic: question about metastatic cc

my sister was diagnosed last month with cc. after being told resection could not be done. we found two drs who said they could operate. after she decided to have the surgery she was sent for a chest ct scan. the results of this was a very small tumor was found in her lung. at this time it is even too small for a biopsy. the dr said he still wants to do the surgery now and deal with the lung later. my question is has anyone ever experienced cc spreading to their lungs and what was the treatment and result. i am just wondering if she should go through with the surgery if her cancer is spreading.

Re: question about metastatic cc

sallypa....Several of our members have metastases to the lung.  By entering "lung metastases" in the google search function, top, right hand side of page you will be able to peruse the various threads discussing this not so uncommon occurrence with this disease. I am hoping for others to come forward and share with you their experiences with lung tumors.  Also, the plate of the scans itself measure 1 cm in thickness therefore, anything of lesser size is not detectable.  That is why the true extent of the disease only can be determined during surgery.  Sally, this disease likes to throw curveballs and is very unpredictable.  Often times we have to make decisions based on the knowledge given and then we cross our fingers and hope for the best.  Your sister's decision will be the right decision for her.
I am sending all 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

Sallypa,
I had resection surgery 04/09 with no metastasis then.  Since then it was determined that the cancer did not respond to the chemo I had following surgery, and the cancer metastasized to my lungs.  I have a 1cm tumor in each lung and many "stars" in both.  I was told that the liver is connected to the lungs (and vice-versa) and that if it does metastasize, it usually goes to the lungs from the liver.  Not always, but most times. 

I am currently on a clinical trial of chemotherapy (Irinotecan) and just had CT tests yesterday to see what it might be doing to the tumors.  I asked for new surgery after finding out it had metastasized, and the doctors said they could do it, but then another tumor might come up, then another, and so on.  They couldn't just keep doing surgery over and over.  Their suggestion was to find something systemic for treatment, that would treat the cancer all over and hopefully cause a necrosis or shrinkage of the tumors first, stopping all progression of any new tumors.  I should find out early next week if the new chemo. is working and will report results then.

What have the doctors suggested so far....any chemo or radiation?

Best of luck to you and your sister.

Linda

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: question about metastatic cc

my sister is having resection surgery tomorrow morning. there is only one spot on her lung and both drs say they arent sure if the spot is cancer or not because it is so small and they have no previous ct scan showing it is a new mass. the dr is going to watch it and see what happens. they have said chemo will probably be recommended after surgery. it is sad because we thought she would only have to deal with the recovery from surgery. she originally believed that surgery would save her from chemo but it looks like that wont happen. i still cant believe that with all the medical advances we have and the money that goes to cancer research that the best thing they can come up with is to poison your whole body to deal with cancer. i know i shouldnt feel that way since chemo does help some people but i just wish they could find something with out all of the side effects. surgery comes first. we just have to take it one day at a time and pray everything goes well and a cure is found for this horrible horrible disease.

Re: question about metastatic cc

hi linda,can i ask you how you handled the surgery and the recovery. also what type of chemotherapy did they give you. when i first began investigating this disease i saw that resection was the only chance at a cure but it seems like even if they remove the tumor and the surgery is successful you still have to deal with the cancer. i am so glad to see that your surgery was over a year ago because when my sister was first diagnosed it was thought there was no chance for surgery and she would only have a few months. i will keep you in my prayers that your ct scan gives you good news and they find an effective treatment for you. please let me know. take care.

Re: question about metastatic cc

sallypa....good luck and best wishes for tomorrow's surgery.  My heart is with you.
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

Sallypa, hoping for a successful surgery for your Sister. Sendin you the best wishes and we have everything crossed that we own! Our prayers are with your family today.

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

thank you to everyone for your thoughts and prayers. my sister had successful surgery today. the dr said he was able to remove the entire tumor and didnt see any visible signs of spreading. he believes chemo and radiation will still be necessary but we will cross that bridge after she recovers. for now we are happy that the tumor is gone, she made it through the surgery and we have hope. thanks again to everyone here and to God for his help. today was a good day. we will definitely take it in this long battle.

Re: question about metastatic cc

Yeah! thank you for the good news to go to sleep with. That is just fantastic. It doesn't get much better than that!

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

sallypa....Congratulations on the successful resection.  Each day should become a bit easier for your sister.  Oh, I also wanted to remind you on having a pillow handy for her; pressing it against the abdomen while coughing eases the discomfort significantly.  Good luck on the recovery and please, keep us posted.
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

sallypa, congratulations on your sister's successful resection! Everytime we hear of a successful operation, that's great news, and a time for thanks too. My best to your sister for her recovery and continuing journey.

.... Dale

Re: question about metastatic cc

thank you all for your well wishes. it means a lot to our family. this site has been a tremendous comfort and benefit to us. my sister came home from the hospital today. she is feeling ok but isnt eating yet. every time she eats she gets nauseous. her hemoglobin level is still low so they gave her an iron iv before she left the hospital. they did a x ray on her stomach and everything looked ok despite the fact that she hasnt been able to pass anything yet. dr said there is no reason to stay in the hospital so she was discharged. next appt is september 8 to remove stitches. she has a very large incision. i couldnt believe how big it was. we also have to make an appt with oncologist to start chemo. we are praying that the chemo wont have to last long but we have no idea what the timeframe is going to be. we just take it one day at a time.

Re: question about metastatic cc

sallypa, that's great news about your sister coming home today. I had my liver resection over 6 years ago, and yes it is/was a large incision...about 11-12 inches. Mine did eventually heal. But even today there is still a small visible scar. But I look at it as my "victory wound" over my cancer!

Please keep us posted, and as your sister starts her chemo...one day at a time! God bless.

Dale

Re: question about metastatic cc

dale, thank you for writing. it is so good to hear from all of the people on this site and it feels great to hear when someone is getting the better of this cancer.i hope you dont mind but i would really like to know how your recovery went. my sister will be happy to hear that the scar will fade over time. did you have to go thru chemo and radiation as well and if so were there any side effects? my sister is still waiting to hear what the chemo regimen will be and we still are worried about the 2cm mass they saw on her lung in the chest scan prior to surgery. it is too small for a biopsy so we have to wait and hope it doesnt ever get bigger and no more show up. we had hoped surgery would be the end of this but now chemo and radiation. this disease really beats up a person. finally today she was able to eat something without it coming back up. we will take another small victory. hopefully every day she will get stronger and stronger. congratulations on your six year success story i pray it will be many many more.

Re: question about metastatic cc

sallypa, thank you. I hope and pray the best for your sister too. My surgery and recovery went pretty well. I

Re: question about metastatic cc

dale, thank you so much for sharing. you give us hope that my sister can beat this disease. she goes to the surgeon, radiologist and oncologist on september 8 to see where we go from here. the drs exact words after surgery were a little radiation and chemo will be necessary. not sure what a little means and we really didnt question him at the time, we were just relieved that she had a successful surgery. i am trying to study so much before next week so i can ask the proper questions. thank you again for your help!

Re: question about metastatic cc

Sallypa,

Just getting caught up on postings here.  Sorry it took so long to reply.

When I had my surgery, I spent 5 days in the hospital and actually did very well with recovery.  I have about a 12" scar across my abdomen which is no where as noticable as it was.  Just a little pink.  I developed an abscess about a week after surgery and had a drain put in for a week, but handled that well too.  I lost about 30 pounds overall due to not being able to eat the "bigger" meals that I was accustomed to.  AND I actually needed to lose weight too.  However, I gained it back when I began chemo.

More than a year later, I do feel like there isn't anything wrong with me, although the chemotherapy did not work.  I know that's not the same for everyone, so don't feel nervous about that.  Chemo may work for your sister even though it didn't for me.  Looking back, my surgeons made errors in judgement that probably caused my cancer to return.  The best chance though is that your sister had surgery to begin with.  That is at least the first fight to getting this cancer.

The chemos that I was on was first Gemcitabine with Cisplatin; then Oxaliplatin with Xeloda, and finally a clinical trial of Irinotecan.  I tolerated all of these very, very well compared to what I've heard others say about them.  Whether that means my age was a factor, or probably why they weren't working, I don't know.  I'm in the process of finding another doctor to seek other treatment options.  Don't give up....don't ever give up.  There is always something new popping up out there.

I wish you both the best. 

Linda

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: question about metastatic cc

thank you linda for your help. i am so appreciative to everyone for the help and encouragement. we are going to see the surgeon, radiologist and oncologist on wednesday and i am trying to study as much as i can to ask the right questions. if you or anyone else could assist me it would be helpful. i am not really sure what to ask them other than is chemo and radiation really necessary right now or can we wait and see if anything comes back. thank you again and i hope you find a treatment that will work for you.  take care.

Re: question about metastatic cc

sallypa, thank you and I hope the best for your sister next week when they discuss chemo & radiation. I agree with Linda, the first part in fighting this cancer is surgery, which your sister had.

Also, I had forgotten (but Linda's post reminded me), about a month out of my surgery, I had a fluid buildup inside my abdomen area, near the surgery site. It was called "seroma". At the time, they told me this was not unusual to occur. They placed a drainage bag near there, and in about 1-2 weeks the fluid all drained out.

Also, I have a blog which chronicles my entire cancer story. Beginning with surgery, and then all my checkups. In case you wanted to see it, it has more detailed info on my recovery and all.

Here's link: http://dalescancerblog.blogspot.com/

Please keep us posted on your sister. God bless.

Dale

Re: question about metastatic cc

dale, thank you for the link toyour blog. it helped me develop some questions for my sisters appointments on wednesday. i am just so glad to see that you are doing well.

Re: question about metastatic cc

we had 3 appointments today with surgeon, radiologist and oncologist. the good news was the dr said the entire tumor was removed and the lymph nodes he removed all tested negative. he also said there was no other visible signs of spread. the bad news was he said while he wanted to get a 2 cm margin he was only able to get a 2mm margin meaning my sister will need chemo/radiation. the schedule seems grueling. one cycle (3 weeks on 1 off) of gemzar followed by 5 weeks of daily radiation followed by three more cycles of gemzar. i am hoping some of you may have some advise or knowledge of this schedule that you could share. the drs say this will all take about six months to complete. the kept saying the good news is that her resection surgery was successful and they believe with the chemo/radiation she has chance at being cured. the problem i have is there is no test to see if the cancer is there right now. she could be going thru all of this for nothing plus there is no guarantee if she does it that she will be cured. drs also had no explanation for the pain she is feeling in her shoulder as well as her arms and hands except to say they dont think it has anything to do with the cancer.

Re: question about metastatic cc

Hello Sallypa:

Having now been through chemotherapy and radiation because my big tumor is unresectable, I envy the problem your sister has now.  Thank God she was able to have the surgery.  I don't have any guidance to offer on the specific protocol your sister has planned for her, but if it is through a facility that has a lot of experience in dealing with bile duct cancers, that would reassure me.  I will say that the Gemzar/Oxaliplatin/Xeloda combination shrank my big tumor by 1/3 to 1/2, so one or more of those drugs in combination worked for me.  The jury's still out on the success or failure of the radiation for me yet.  Had I been lucky enough to qualify for surgery, I would have asked for adjuvant chemo/radiation, and Praise God she's getting a shot at it!

Sounds like you sister has a wonderful advocate in you.

God bless you both.

-Tom

Re: question about metastatic cc

Sallypa, your sister

Re: question about metastatic cc

thank you tom for your support. i pray that your chemo treatment will continue to shrink your tumor so that maybe surgery could be performed. we are going to seek some other opininons about the post surgery chemo-radiation. we know that she is going to have to do some chemo/radiation. we were just hoping it would be shorter than a six month process. but if thats what it has to be than we will go ahead with it.

Re: question about metastatic cc

havent been writing lately as we hoped to find a second opinion that wouldnt call for six months of chemo and radiation. unfortunately there was no better news. my sister will begin the chemo on monday. hopefully the side effects will be minimal and God willing at the end of the six months she will be cured.