Preparing for meeting the doctor…
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Hi Maria,
Think of it this way, scary doctor on one side on his own, and you and all of us on the other side, now he will be scared of you!!! Strength in numbers!
On a serious note, if this doctor is as good and as experienced as you say then I can totally understand you sticking with him. And I guess that he falls into the category of doctors that Lainy talks about who’s beside manner is not as good as it could/should be. But as I said to you earlier and as Lainy also says, this doctor is there to help and work for you. Don’t be scared!
Best wishes,
Gavin
Maria, when someone is not sure of their doctor for any reason we recommend getting another opinion. If you can do that it will give you more peace of mind.
While I do not know much about chemo, my husband never had it, I do know there are many combinations out there. Its hard to say what a doctor should tell. Some are more straight forward than others. When Teddy first started his journey, no one EVER gave him a time frame and when we had less than a year the ONC and the Radiologist decided to wait until we had 6 months left. At first I was angry then I was grateful that they didn’t tell us until later. My feeling was, we would have worried for a year instead of just 5 months. I would probably think if your doctor is tops in this field perhaps he just doesn’t have the greatest bedside manner. Wishing you loads of luck. Remember he is hired by you, you are the ultimate boss.Maria:
I had to chuckle when I read your post! “Scary” doctor brought back a memory of when my husband was first diagnosed. The hospital set up an appointment with a surgeon for my husband and when we met with the doctor I had a 2 page list of questions for him….most of which he either could not answer or gave evasive answers….talk about scary! He had gone ahead and scheduled a day for the surgery, but when we left his office and discussed it on the way home, I told my husband that there was no way that man was touching him! This doc just did not give me any ‘warm fuzzies’ and I called later that day and cancelled the surgery. Keep in mind that this turned out to be a very expensive surgery and hospital stay.
About 15 minutes after I cancelled the surgery, the doctor’s office called back and tried to convince me to keep the surgery as scheduled. I finally had to tell them that we were going to seek 2nd and 3rd opinoins and that this doc did not give me any warm fuzzies (no bedside manners).
Thank heavens we did seek other opinoins and we found a wonderful doctor in Milwaukee who spent tons of time with us explaining the procedure, etc. and had done hundreds of liver resections and liver transplants. She was able to perform Tom’s liver resection and felt that they had gotten all the cancer. For 18 months Tom was fine and we had a wonderful 18 months, but then in Nov. ’09 he started turning Jaundiced. The cancer had returned and this time it was inoperable.
Then his ‘then’ oncologist told him he had 6 months and that chemo and radiation would not help, and there was nothing else to do. This time we again sought 2nd, 3rd and 4th opinoins and basically fired that onc! Tom has undergone both radiation and chemo and the new tumor has been ‘killed’ however it is still blocking the bile duct (or the tumor and radiation has destroyed the bile duct) and they are unable to get an internal stent placed, so he has an external bile drain (tube into the liver and the bile drains out into a bad) which keeps his color more normal.
His prognosis is still the same, he is terminal and will have to have the drain the remainder of his life….
However, my case in point is that NO ONE knows when the end will come as we do not have expiration dates stamped on our butts! We are now nearing the 14th month of life (and he said 6 months, HA) and are hoping for a lot more time together, but look at each day as a blessing.
Hopefully your ‘scary’ doctor has had experience with CC. Tom is on the Gemzar/Cisplation IV chemo and prior to that he did the oral Xleoda.
God with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Maria,
I’m glad that you are feeling so much stronger about your upcoming meeting with “scary” doctor! But just remember that he is your doctor there to help you, so please don’t be scared of him. And from reading the posts here, you now know that you are not the only person in the world fighting CC and that there are other alternatives out there besides the chemo combo that you were on. Strength in numbers with all of our members here helped me so much when my dad was going through his fight and also finding out as much as I could about CC and what can be done also helped me a lot. The better informed you are the better the decisions you can make.
My dad never had chemo so I can’t talk about what he went through, he had PDT as his treatment. Did your onc talk with you about the possibility of trying the Gem/Cis chemo combo? Or indeed any other chemo combinations? If you read the chemo board here you will find a lot of posts from our members sharing their experiences of chemo’s of various types and combinations. Also, did the doctor mention radiation of any type?
And I can’t remember whether or not you talked about surgery of any type being a possibility? I’m not sure if anyone here has tried Yttrium-90 or not so perhaps you could use the search function here on the site to see if any discussion come up. I did a quick google search and came up with these links, hopefully some of them will be of use to you.
I know that others will be along soon to offer their thoughts and experiences and hopefully you will be able to compile a long list of medications or treatments to discuss with scary doctor!
My best wishes to you,
Gavin
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