Anxiety

[JeannineMarie]

Not feeling very confident with the Dr that I have been referred to. Problem is where I live it is the only clinic. All the hematology drs are affiliated there. Have had 3 visits with him and my discomfort grows. How do I change drs?

[TimHB]

If you're in the U.S., try the CLL Society website. They can arrange for Skype consulations with the country's top CLL specialists.

[JeannineMarie in reply to TimHB]

Thanks TimHB. Not sure that will fix the issue. To be honest the Dr I have and I do not seem to communicate well. I need structure, a plan and Dr seems to want to cowboy through and will react when he deems it necessary. I don't know my RBC, WBC, lymphocyte counts when I try to question his response is "those aren't absolute values, each one by itself doesn't mean anything". We can't seem to get on the same page....page hell we can't even get in the same book.

[lawyermordy]

Do you have the ability to obtain a second opinion at a university center designated as a National Cancer Center? You need to find a CLL specialist and they are not at the local level. I don’t know where you are located but the CLL society also has a list of CLL specialists by state

[JeannineMarie in reply to lawyermordy]

Nearest university is Vanderbilt....I am in Tennessee.....do not know if they are a National Cancer Center. Guess I will start looking into that next. I have been exploring the CLL Society website trying to figure out what to do, where to go, how to do it. Can honestly say that I had never heard of CLL/SLL til it was handed to me on a platter.

Thanks for your input.

[lawyermordy in reply to JeannineMarie]

Vanderbilt is a National Cancer Center. You and your doctor should be a team in the fight against CLL. Any doctor who won’t tell you your lab values, genetic workup is not worth going to see. CLL Society lists 2 doctors in Nashville. I would get a second opinion. I did and have never regretted doing so. Good luck.

[TimHB]

Your doctor should be referring you to the appropriate specialists no matter where they are. I live in Los Angeles - hardly a medical backwater - but my hem-onc referred me to specialists in Columbus, Boston and San Diego and I got on a plane and went. And I'm glad I did - it changed everything and I got into a clinical trial and am doing great.

[JeannineMarie]

Thank you for the info and guidance. I have located the Drs referenced and the place on the site for the video conference and application.

To tell the truth I am scared that I have wasted 3 months trying to figure this out on my own. Stopping by my drs office today to pick up some paperwork and will be requesting a referral to the drs that the CLL society recommends. My Dr and the 2 aforementioned drs all work for the same organization. Does that matter??

Thanks again

[JeannineMarie]

Quick update on this ....the Dr office refused to give me a referral to the specialists on the CLL Society site. Because they are all in the same organization. So decided that I would request referral to a specialist at Vandy....they told me I was on my own with that. Reached out to my primary care Dr to see if she can help. Still waiting to hear from her.

My stars I am drowning in this mess. But I don't give up....

[lawyermordy in reply to JeannineMarie]

Any doctor that won’t refer you for a second opinion is not worth seeing. It sounds like you need a referral to see a doctor because of your insurance. Keep working on your family doctor -it will be worth it in the long run. Don’t worry about the 3 month delay-that is not much time with Cll. Hang in there and keep pushing for the referral. Good luck.

[SeymourB]

JeannineMarie -

I had an appointment today with my hemo/onco here in New Orleans. He once touted that his hospital had a connection with MD Anderson in Houston. Today, he admitted that his hospital would probably drop that affiliation, because it costs the hospital money to maintain it. He also said that more and more, people just go to MD Anderson without a referral. I mentioned that I had joined the CLL Society, and planned to get a second opinion from one of the doctors listed there. He had no problem with that at all, he said.

Your doctor can not refuse to give you your medical records so that you can give them to another doctor. They apparently can refuse to forward them for free.

hhs.gov/hipaa/for-individua...

Reasonable costs per page of your medical can run up to $1/page, which can add up. If your records are all at a hospital or large medical center, they usually have a policy for this, and the charge per page goes down at some point.

So the real issue is, do you feel your doctor is putting pressure on you to not leave his or her care? Consider why a doctor would act such a way, and whether it's in the best interest of you, the patient, and even whether it's ethical.

Also, my experience is that no specialist expects a referral unless they are overloaded with work, and use that to limit new patients. The big issue is whether they can get a copy of your medical records.

BTW, all Americans - please always have whatever specialist you see send a copy of your medical records for each visit to your primary care. Usually, the specialist will do that for free. Then you can ask your primary care to send copies of all of it to whomever you choose.

Also, when you get any kind of imaging, try to get a copy of the scan on a CD or DVD. My experience at 3 or 4 imaging centers now is that if you ask at the time of service, they will often do it for free. Otherwise, they may charge a small fee. If the imaging center is associated with a hospital, you can usually also request a CD or DVD through the hospital for a fee.

Having copies of such things available to specialists save valuable time and leads to much better care. Specialists should not have to guess about things based on the single page medical history you fill out with a pen and an often foggy memory when you 1st see them.

Best of luck,

=seymour=

[BallparkChaser in reply to SeymourB]

Great advice! I did a ‘self referral’ to MD Anderson via their website and now have fantastic Lymphoma and Leukemia Drs there that work with my hema-onc nearby (at least until I can figure out the out of network insurance piece). I don’t believe I would have ever had a chance to get connected to new therapies and technology without making this connection.

[JeannineMarie]

Seymour B, I did see my specialist of choice. It was a bit of a struggle since they both are employed by the same organisation and they made it difficult but perservence paid off.

I did switch Dr as a result of getting my records and finding that information was being with held. I believe the Doc was telling me what he thought I wanted to hear.

In any case I am now confident with my care and my new Doc who is one recommended by the CLL society. She gave me hope and the confidence to move forward with this disease.

Seymour, I fully agree, I now have copies of all diagnosis'. Get your record, find your voice and empower yourself! Bravo to you for encouraging people to do this.

Thank you

Jean