2nd opinions and questions

[onethatcares]

my wife was diagnosed with cholangiocarcinoma in September this year with a 1.5 x 1.3 cm tumor of her bile duct. we have been going to the cancer treatment center at st anthonys hospital for chemo treatments of which she has had 3 to date. One every other week for 4 hours. Initially we were told that she would undergo 4 - 5 treatments then surgery would be scheduled which would have put it right around Thanksgiving. She also has a temp stent which will need to be changed about the same time.

Two weeks ago, chemo week, we were told that it was time to schedule the surgeons and that our oncologist would have his office contact their office to get things moving. Now almost two weeks have gone by and no word from them.

Do you think it would be pushy to contact them directly and tell them that to us time is of the essence? Do you think it would be wise to try to contact the Moffit Cancer Center and see if we could get a second opinion? Or does it make more sense to just hold back and go with what and who we already know.

She is still working but it is really beginning to wear on her. Along with our insurance beginning again on Jan 1, 2015 and deductibles having to be remet at that time it's just beating us up.

Sorry this is disjointed but it's hard to put this down from my mind to my fingers.

[ColesCountyDem]

1. My $.02.

My father was a physician, and here are a couple of things that popped into my mind while reading your post, based on 40+ years of listening to and discussing such matters with him:

1.) Do you trust your wife's oncologist? When a serious illness or injury strikes someone we love, we quite naturally want everything possible to be done, and done yesterday, if not sooner ( j/k ). This reaction, while understandable, is not necessarily realistic or even advisable. If your oncologist has a good reputation and you trust him/her to do what is best for your wife, take a deep breath and let the oncologist schedule the surgery. Additionally, don't be afraid to share your concern with the oncologist; doing so may well relieve much of your anxiety and sense of urgency, when you hear what he/she has to say in reply.

2.) No good physician will EVER object to a patient wanting a second opinion. If a second opinion will ease your minds, by all means obtain one.

Good luck to you!

[cate94]

2. Call the oncologist

There is no reason for you to worry. Find out what they are thinking and ask about the scheduling. You have a right and obligation to ask questions, no one will fault you for that.

ColesCountyDem has good advice and is absolutely right about second opinions. BTW, I understand completely about the insurance aspect and I think so would all the Dr.s involved.

Good luck

[slipslidingaway]

3. Always question and be proactive, but polite ...

and it does no harm to seek another opinion, even it is by phone. We are doing that now, considering another transplant center across the country, we will probably stay where we are, and my husband does not even know what is going on behind the scenes as far as questioning.

Is Moffitt an institution that is a leader in this type of cancer? If so then make a phone call, or try and find out which centers deal the most in this cancer and call them. If nothing else you might learn some questions to ask your oncologist.

I understand about the insurance and annual out of pocket maximums, we've reached those for the past five years and they sure have beaten us up.

Be a polite, and as informed as possible ... pest

Thanks for you well wishes on my thread about my husband!

[Tab]

4. My thoughts

First, sorry about your diagnosis. That said, I'm not familiar with that particular carcinoma.

On first diagnosis, your sense of urgency may differ from that of your doctor's. Howevever, everyone's urgent in the beginning, and your doctor should understand that. Your doctor should have NO objection to your getting a second opinion.

You may or may not consider looking for a group that can better coordinate your case. I started with a world-known cancer center but moved away because no one was coordinating my stuff.

At this stage (no pun intended) I would fully encourage you to (1) seek a second diagnosis and (2) perhaps look to see if there's a hospital team somewhere that will coordinate and keep a close eye on things for you.

Best to you and your wife for a positive outcome.

- Tab

[onethatcares]

5. immediate problem is

this type of cancer is relatively rare, 2K-3K cases each year in the United States and we were told up front that there is no set care procedure and most of it is hit and miss, let's try this, we really don't know what we're doing but we'll give it a try, etc.

Hell, my wife doesn't even fit the profile for the demographic that gets it the most She is not Asian or Indian. She did not go anywhere where a parasite could infect her, ever.

We've been told up front that there is more than a better chance that she will not recover from the surgery due to the risk of infection and other items. Our oncologist has consulted with 4 others in his center and none have ever seen this before but they do want to get a look at it.

So here we are.

[Tab]

6. Well, if it's relatively rare

no one should object to your chasing a second opinion. I doubt you'llget a doctor "Hey, your's is relatively rare, trust me, I do this all the time". No one wants to be in charge of a rare incident without being able to spread the exposure a little bit and/or get extra opinions.

Good luck!