How to Find a Carcinoid Cancer Doctor

I have bad news for you. It’s not going to be easy. You see, carcinoids and neuroendocrine tumors are very rare and your typical doctor knows very little about these kinds of cancers. So, I’ve written this post on how to find a carcinoid cancer doctor to help you navigate these waters a bit easier. I think I might have been the patient of every bad doctor on the planet. Don’t get me wrong, I have had great doctors but, the bad ones out number the good ones so far. If you have anything to add feel free.

My Story

This cancer has a way of sneaking up on you. Most people do not discover that they have carcinoid cancer / neuroendocrine tumors until it has already spread. That’s true in my case. You can read my complete story here and you can read about my dealings with various doctors in greater detail here and here and here. If you don’t have the time don’t worry because I am going to summarize my encounters with them and hopefully help you avoid the problems I have had.

 Problem #1 is Ignorance

If you have carcinoid tumors or neuroendocrine tumors then you have a rare form of cancer and you will almost certainly have to deal with this issue. First, you will more than likely find that most doctors take a very lackadaisical approach to your cancer. They’ll often act like you don’t even have cancer. You will be amazed at how many times they will smile, chuckle and maybe even make a little joke while telling you that you have cancer. I am not kidding. I have experienced it.

They’ll might even tell you that you’re “lucky” to have it. Yes, I had a doctor tell me that. Some luck, huh? Most of these remarks are based out of ignorance. In my case, the doctor was trying to say that carcinoids are better than carcinomas because they grow slowly. Here’s another one. In the same way that there are humans and humanoids there are carcinomas and carcinoids. In other words, you’re cancer is not a real cancer. It is a lesser cancer because it grows slowly and is much less lethal. Which is not true for all carcinoids and is not true in my case. I have stage 4 carcinoid cancer, it is growing moderately fast and if it continues at this speed I only have 2 years left according to my doctor. So, these is the kind of remarks you can expect. They are not meant to be cruel but they are insensitive and based on ignorance.

Problem #2 is Faking It

I’m not a carcinoid specialist but I play one on TV…..or in my office. You can also expect most of these doctors to “fake it”. Why? Who knows what the motive is but, it’s almost always true. It is rare for a doctor to tell you that he doesn’t know anything about your cancer and do his best to refer you to somebody who does. Now, in my case, I have had both types of doctors. My primary care doctor….A PRINCE…..he was honest and did his best to help me. The doctor who performed my colonoscopy was another doctor who was just AWESOME. The doctors who they referred me to and the additional follow ups were…..A HORROR SHOW!!!

The surgeon who performed the resection of the cancerous growths in my G.I. tract had no ideas what a carcinoid was but he was great at faking it and acquiring my confidence. His main objective seemed to be to make himself look good at the moment. It didn’t matter if it was at my expense. He was the one who told me I was lucky and that carcinoids were like humanoids……nothing to worry about.

The surgeon who performed the minor surgery referred me to a surgeon in a cancer hospital. The reason he referred me further was because some of the cancerous growth was out of reach to him and, in order to remove it, I would need major surgery. He told me this new surgeon knew all about carcinoids and he would remove it with no issues. Nothing to worry about. You can read about that nightmare here. To make a long story short, he knew nothing about neuroendocrine tumors or carcinoids. He just tried to coerce me into surgery to fatten his wallet. In fact, looking back, most of what he dispensed as fact was not. He was wrong about quite a lot of things and I thank God to this day that I did not allow him to operate on me.

 Problem #3 is Lack of Empathy

You’ve got 5 years to live, there’s nothing we can do for you and…oh…look at the time, I’ve gotta go. That is basically how I was handled by the first carcinoid specialist I saw. Needless to say, he is not my doctor now. I deserve better than that and so do you.

I have to be honest, it blows me away that some doctors can be so detached and cold but, they can be.  If you’re doctor has no empathy for you then you cannot count on them to care about the outcome of your treatment or to do the best for you everyday. If your doctor has no empathy for you then if you die, they have no emotional investment. NEXT! If your doctor has no empathy for you then they have no real motivation to seek better treatments for you especially if the doctor is being well compensated no matter how you fair.

Problem #4 is Arrogance

I remember when I went for my first consultation at the cancer hospital in NY. I asked what was the name of the disease that I had. The doctor responded “You don’t need to know that.” Yup, I had a doctor say that to me. Of course, I responded that I absolutely needed to know the name of the disease I was afflicted with since it was my body. He also was not very interested in providing me the name of medicines that are commonly used, names of colleagues that may know something about my disease or any of my medical records.

Of course this is one example of arrogance but, take a look at how your doctor treats you. Does your doctor respect your time? Do they keep you waiting for hours? Do they practice speed medicine, give you a prescription and speed on to the next patient? Your time is an extension of you and of who you are. By keeping you waiting the doctor is telling you that your time is less valuable than his and the doctor is doing the same when they practice speed medicine. Get a doctor who takes time to answer your questions and explain everything to you.

This bring us to our next sign of arrogance…..does the doctor listen to you?  We’ve all heard the old joke “Doctor, it hurts when I lift my arm. The doctor replies then don’t lift your arm. ” That is a humorous example of being ignored.  You see, you should have a doctor who listens to you. You deserve it. When you tell a doctor that you did research on the Internet and found this new treatment then you deserve an answer and you deserve an answer that is not condescending.  If your doctor ignores you, is a poor listener or considers you his inferior then you need to consider getting a new doctor.

Finally, does your doctor keep you in the dark? For example, the doctor who refused to tell me the name of my disease, which happens to be carcinoid cancer, is an example of arrogance. He didn’t think that I, as his patient, needed that information. Really? I don’t need to know the name of the disease of what is killing me?!  Arrogance….pure and simple. If your doctor is not telling you everything you need to consider finding a new physician. You need a doctor that will tell you the answers to your questions, fills you in completely and cares enough to do it with grace and empathy.

Problem #5 is Unprofessional Office Staff

I have been hung up on, ignored, mocked, given the run around and worse…and I bet you have too. You see, the first sign of a bad doctor is unprofessional office Staff. If they can’t be professional then you know that professionalism is not considered important in the office of the doctor you are seeing.

How to Find a Carcinoid Cancer Doctor

Get a Good Referral – I’ve found a few tricks to finding a good doctor. First, referrals cannot be underestimated but, there’s a trick to it. I found this out the hard way. Always ask why they like the doctor. You will be stunned at some of the answers you get. You will hear statements like: they’re nice, handsome, pretty, cute, a family member, I don’t know and tons of other crazy reasons. When you start asking that question you are well on your way to finding a good doctor.

Find A Life Long Learner – You would think that the opposite of arrogance is humility but, in this case we don’t need Gandhi. Somebody who is willing to care enough to keep learning about the new developments in the field they are paid to treat you in is good enough.  They don’t have to be a computer whiz but they do need to stay up to date.

Honesty – Fake ’till you make it might be great in show biz but it’s not so great in the health field. We need to find a doctor who is willing to admit ignorance but, do the work to change ignorance into information. At the bare minimum we need a doctor who can refer you to somebody who is informed….or call a colleague for that referral.

Empathy – Sadly, there are too many doctors out there who see you as patient number THX-1138. You need a doctor who will care enough to feel sad for you and show it. Now look, if I had to pick informed or empathetic….well…you know I would pick the informed doctor but it shouldn’t be that way. Let’s try to get both. I feel like I have both now.

Communication – We need a doctor that communicates well. I just found out something horrible. My previous doctor, who I had grown to trust until the end of my relationship with her, had not been communicating everything she knew with me. She wrote it in her notes, yup….but never said it to my face. Why?  I will never know but, I found out when I had my records transferred to my current doctor and he summarized her feelings about my case. Um, he actually asked me why I looked surprised. My tumors were growing and she didn’t tell me. I still can’t believe it.

Of course, this includes not making you wait for 3-4 hours in the waiting room. Yes, I had that happen to me more than once with more than one doctor.  Also, it means when you get in to the office that they spend a decent amount of time with you if you need that. My doctor currently keeps it balanced. I have the “Your blood count is fine…any questions?” visit and the 1 hour visit when we review my scans. Fair enough. 🙂  No need wasting the doctor’s time if it’s not needed, agreed?

Plays Well With Others – Previously, I have had the experience of having my doctor say that they were “OK” with me getting a second opinion but then ignoring that second opinion all together. I should have read the body language. Whenever I asked about it I was met with averted eyes and turned backs. It must wonderful be wonderful to be right all of the time, right? 🙂

Our Turn

So, I don’t think it would be fair if I didn’t address the patient’s role in this relationship. After all, that’s what you have. It might be a “professional” relationship or you might become friendly but either way you have a relationship and you are responsible as much as they are for it’s success.

You need to be honest about your condition, symptoms and even complaints. You need to be flexible and understanding if they are not the “perfect” doctor. You need to be polite, courteous and treat them like the professional they are. Just because you found it on the web doesn’t mean that you found the answer to your ailment. Run it up the flag pole, get their opinion and if you don’t think they’re right get a second opinion. Treat them the way you would like to be treated and understand that they have a very hard job and are more than likely giving it their best. Give them more than one chance to prove to you that they are the right doctor for you. You might find that they are good doctors even if your personalities are not “meshed” perfectly.

Here are some of the doctors that have been recommended to me:

Dr. Tom O’Doriso at University of Iowa Health Center in Iowa City, Iowa,

Dr. Eugene Woltering at LSU Health Center in Kenner, Louisiana

Dr. Larry Kvols at H. Lee Moffit Cancer Center in Tampa, Florida.

Here’s a link for more – Read More

Good Luck in Your Search,
Ed – To find out how to use my images on your blog for free – Click Here

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6 Comments

  1. Really shocking to see all you’ve dealt with in one message. You gotta wonder how these so called Doctors are still in practice

    • They’re still in practice because it’s very hard to prove some of these “intangibles” such as arrogance. Also, when you have cancer you are often willing to overlook a lot of these things because you just want to get better. It’s a shame.

      On the flip side, I am very happy with my current doctor. 🙂

  2. Hi Ed,

    Nice post Ed – I couldn’t have said it better! Are you just going for a second opinion and keeping your current doctor? I think Dr. Woltering and Dr. O’Dorisio treat patients quite similarly – I think one may have worked for the other at one point early in their careers. I think they are the most aggressive of the doctors who treat carcinoid patients in the US. You could go to Vanderbilt and see Dr. Jordan Berlin (oncologist) or Dr. Eric Liu (surgeon). I went for a 68-Ga scan with Dr. Liu and thought he was a very good doctor.

    I’ve been to several doctors for consults too and agree with your assessment – I think we’ve probably been to one or more of the same bad doctors! My team in Boston led by Dr. Jennifer Chan scores very highly on all 5 attributes. They tend to be a bit more conservative in the way they manage the disease though.

    I hope you find a good opinion that suits your needs and I look forward to hearing about your it and if they have any good suggestions.

    The biggest problem with having a rare cancer is that there is no consistent treatment protocol and it is very frustrating. We’re all a bunch of lab rats! Take care.

    Beth

    • Hi Beth,

      I hope retirement is going well. I’ll bet you’re still as busy as a one armed wallpaper hanger. 🙂 It never stops, right?! I watch Bloomberg every morning.

      So, I’m looking to get a second opinion. Actually, not so much a second opinion but more like a consultation. None of the chemo has worked and we thought it was time to try getting a consultation from a specialist.

      As you know, I tried that once before, with a doctor who will remain nameless, and could not get my medical records from his staff nor from him. He never called my doctor, never followed through….just took my money and ran some tests and disappeared. I’ve given up on him. I’m out quite a bit of cash which didn’t come easy since I was out of pocket and was out of a job at the time. Very frustrating. 🙁

      Thanks for all of the info. I think I will be going to Dr. Woltering but, I am still researching. 🙂 I’m glad that you’ve found a doctor and team that works for you. I am pretty happy with my doctor but, I think it’s time to expand my choices…and maybe…get lucky.?

      From one lab rat to another….have a nice day!
      Ed

  3. You know, I found myself reacting with shock at a lot of what you went through. I have to be honest. Out of fear, I would have most likely been one of the people who let the scary Doctor operate. “If the Doctor thinks it’s necessary, sign me up”. After reading this, I still don’t know how I’d react in the face of crisis, but I hope I’d have the presence of mind to ask questions or have someone with me who would. As always, continued prayers sent up for you.

    • Thanks. Well, you know, you have to have trust and confidence in your doctor. If you’re not comfortable then you shouldn’t go forward. You know, I think that little voice hardly every betrays you. As far as the doctor who wanted to operate. Nothing about my entire visit with him was professional. The equipment failed multiple times, he was screaming at his staff while I was on the table, he told me that I had a slow growing tumor (not true) but, had to operate the NEXT DAY! Nothing lined up. It felt wrong….and looking back….I know it was. Also, later I researched him on the web. He operated on a boy and left the kid in constant pain and never returned the parents phone calls. He blew them off. This guy would’ve hurt me in some way….I didn’t trust him….ran as fast as I could in the other direction.

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