Considering seeking a third opinion
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Lainy,
You are right and I am feeling so much more strength and power right now. Thank you for the encouragement, it really helps with life looks bleak. Never thought I would be in this predicament, but I am going to fight with all I’ve got!!!Maybe I will even contact Dr. Kato. The sun is starting to shine and I have you wonderful people here to thank for that!!!
Darla
Dear Darla, I always say, when you have a game plan the fright turns to fight! Make sure you DO ask your ONC for something for pain and for sleeping!
Tomoaki Kato, M.D., is a transplant surgeon at NewYork-Presbyterian/Columbia University Medical Center. You can Google him as well. Best of luck on everything, I feel you are beginning to get your groove on!Pam,
You are such a sweet and thoughtful person. I appreciate all your advice. I know that we need to act quickly and that was why I was getting nervous. I am so happy though, that I will be seeing a Specialist soon in Missouri. I dion’t even know if this is my answer to prayer or not, but at least somehting more is happening!!How is Lauren doing? I sure hope she is feeling well, and enjoying her life too. Lately I have been in a depression state and just feel like I drag myself to work, and home and I have no motivation to do anything. I see my Oncologist on Friday for chemo, I may ask her if she has somthing that will help me with pain and sleeping so I can sleep better at night. My mind races every night and I go over everything in my mind over and over.
God Bless you and Lauren,
thank you for everything,
DarlaLainy,
Where is Sloan Kettering and Dr. Kato located? I appreciate your input and I did call Dr. Chapmans office today, and I was assigned to a nurse, and she supposedly left me a call in Sept. to let me know they want the cd’s and to schedule an appt for surgery consultation. Tomorrow she will call me back.I feel as if my prayers are starting to be answered and they are coming in abundance.
Linda,
I did get my first cat scan after only 6 weeks of chemo. My Oncologist will probably do another one before 6 months. That was just Dr. Zalupskis thought was, he was thinking it would take that long to see significant change ( which is what I need to be placed on the transplant list)Good news is that I think I may be taking a trip to Missouri soon, and I am excited about that!!!!
God Bless you all and thanks,
Darla
Hi Darla,
I agree with the other respondents- you need to strongly advoctate for yourself with this type of cancer. Doctors expect patients to call and you may as well find out the time frame they have in mind to review your case, so that you can pursue other options if it is too lengthy of a wait. I like the idea of contacting the Dr. at Sloan Kettering. With my Dad I contacted a well known Canadian Oncologist, Dr. Robert Buckman (who has unfortunately passed away) and I did so through his contact email on his hospital website. It was enough for him to eventually get in touch with me and discuss my Dad’s treatment and do the same with my Dad’s Oncologist. So, if you have some names and their contact emails, it wouldn’t hurt to get the word out through the web- that way you may’ve increased your medical support team with the click of just a few buttons.
You’re in my thoughts and prayers, God Bless.
Missing UHi Darla. Six months seems a long time to wait to see if your current chemo regimen is working. My husband’s oncologist is ordering a scan every eight weeks so we can move quickly if the current regimen fails. My husband has intrahepatic CC and his bilirubin level has always been normal.
Darla, no need for thanks, we are here so that you can rant all you want! I agree with Pam that you should call Dr. Chapman’s office as that is not like him to not answer. Also Dr. Kato at Sloan Kettering is known to take ‘difficult’ cases. Wishing you the best and stay strong!
Hi Darla,
Just my opinion, but if I had sent records somewhere and it had been a month of not hearing anything, I would definitely give them a call. The records might have gotten misplaced in the shuffle. Time is important with this cancer and we don’t have time to waste. From what you have written, I think you are responding well to your chemo and are you are in good health. If you are not satisfied with what you have heard, get another opinion. We have only gone to U of M for Lauren’s care because we are happy with her doctor and care. If we felt that everything wasn’t being done that could possibly be done, we would seek a 2nd opinion immediately. You won’t be happy until you are satisfied you have done all that you could. It makes me sad because I wish you could enjoy your life instead of worrying. I am glad no one has ever told you how much time you have. They can only guess and what good would it do. I hope you get all the answers you are looking for and can have some peace of mind. Take care.
Love, -Pam
At this point on my journey I have been told by two Oncologists that I have advanced stage 4 adenocarcinoma. I was told that after 6 more months of chemo we would see if the tumors are continuing to respond to treatment ( as they have already with a 1/2 cm. shrinkage) and then we could consider possilbe other options. I was told that I am inoperable and that there is not a Dr. in the US that would consider opening me up because of the risk of spreading the cancer.
I feel as if I need to do something more, but I am not sure where to start. My Oncologists office faxed over 50 pages of medical records to the Barnes Noble Hospital for Dr. Chapman, over a month ago, and I still haven’t heard anything back.
I am sure that many others have been in my position, I am just really scared and know that I need to do something. I should’t just settle for the waiting game. I don’t know how much time I have. No one has ever given me that information. I am otherwise quite healthy. My billirubin is actually almost normal, and my liver enzymes are elevated. The only symptoms I experience are my food not digesting properly, and an occasional pain in my side.
I have one large tumor this is 8.5 cm. surrounding the main bile duct. I also have 4 other sattelite tumors that are on both lobes of the liver. The cancer is contained within the liver, but the Dr.’s say it has metastisized within the liver.
Thank you for listening to me rant, I think this group is wonderful and I am so glad that I found you all!!! Any advice right now would be great!!! Thank you so much!!!
Darla
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