Topic: new surgeon and local onc not on same page

Hi, It's been a while since my last post. 
Since last August I started gem/cis.  I had few side effects and I thought it's working well, but my ca19-9 was not going down but up(doubled).  CT showed no changes so onc decieded to keep going with same chemo.  Mean time I was having lots pain on my right side that they couldn't figure out why I'm having so much pain.  They gave me more pain med and watching. Checked tumor marker again a month later. Well it's up again.  So I decided to get second opinion with Dr. Fung from Cleveland clinic.  They want to do a biopsy on my abdominal area shows some activities on pet/ct. and possible radiation treatment if I'm understanding right.  So I cancel chemo for this Friday since I'm schedule for biopsy Monday and email to my local onc with my plan.

I got a call from my local onc with lastest update on ct I took last sunday.  Yea I was at er due to major pain on my lower abdonimal, but they couldn't help me much.  They say cancer is causing it.
Anyway, my onc said my cancer is spreading to new areas abdonimal wall and rectum areas and not recomm. biopsy or local area treatments.  He thinks new chemo  would be my only choice.  So he is trying to talk me out of going to cleveland clinic.  I'm not sure what to do now.  I email to Dr.Fung and waiting for his response since he didn't get to see the new ct yet, but my onc email him with new findings.  I am so lost, sad and upset!  I'm  going to pain clinic tomorrow to get a nerve block for my pain.  I hope it does. 
I don't know what to do!!!! Help  All I want to do is cry.  With holiday coming up I can't enjoy with my kids I feel so bad for them too.  I'm so tired of ups and downs.

2 (edited by Lainy Wed, 19 Dec 2012 17:32:01)

Re: new surgeon and local onc not on same page

LeeAnn, I am so very sorry to hear all this and I really am at a loss for words. I wish I could wave a magic wand and it would all go away!I hope the 2 ONCS can come together on what to do. I would think a new game plan would be a good Christmas gift. Hold on, hang in and be strong. Sending you so much LOVE.


3 (edited by Pamela Wed, 19 Dec 2012 20:57:02)

Re: new surgeon and local onc not on same page

Hi LeeAnn,

I am very sorry about your news. I think you should wait to hear back from Dr. Fung and see what he has to say before deciding who to go with. He may even agree with the oncologist you have now. I know that Lisa sees Dr. Fung and always speaks very highly of him. In the end, it is your decision on who you feel comfortable with and who you trust to help you. I hope the nerve block helps relieve your pain. I am truly sorry for what you are going through and I hope things start looking up and you receive a clear picture on what the right decision is.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: new surgeon and local onc not on same page

LeeAnn....I too wish for the nerve block to work for you asap.  That is the most important issue you are dealing with at the moment.  Once your pain is under control other things can be tackled.
I am thinking of you and sending tons of hugs your way,


Re: new surgeon and local onc not on same page

Try to schedule a 2nd opinion for medical oncology consult at Cleveland Clinic.
sometimes surgeon's opinion will be different than  the oncologist ;but if you get a 2nd opinion for the same specialty( in this case,oncology) at the Cleveland Clinic, then the problem(ie: chemotherapy or not ; or the opinions of metastasis ) will be solved. In the meantime while you are waiting ;Please don't get upset,the ups and downs are part of the journey of this cancer, and as a patient,like myself for 44 months, I will save every ounce of my energy toward the goal of getting better. yes, I am fearful of the outcome too, but it is nothing I can do, instead I will try my best to research and be informed to make the best guess of choosing the treatment; but at the end , it is all up to God. So don't cry and try to make this a happy holiday for you and your kids.
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: new surgeon and local onc not on same page

Dear LeeAnn, You definitely have a good reason to feel confused and scared. Cry if you need to!  there is still plenty of room for finding joy as well with your kids this Christmas break. Enjoy the fact that theyre out of school and can be with you. when you need to cry or express fears, Let it out. find a supportive friend, clegy member or therapist. You really do have so much on your plate. Expressing your feelings is healthy and may give you the strength to carry on with the fight and your job as Mom.
Keeping you in my thoughts and staying positive.